Design, adaptation and content validation of the Sheffield Profile for Assessment and Referral for Care in Colombian Spanish (SPARC-Sp-Col)

Design, adaptation and content validation of the Sheffield Profile for Assessment and Referral for Care in Colombian Spanish (SPARC-Sp-Col) | Research Square window.SnipcartSettings = { analytics: { enabled: false } }; (function() { var accessVector = localStorage.getItem('access_vector') || ''; window.dataLayer = window.dataLayer || []; if (accessVector) { window.dataLayer.push({ user: { profile: { profileInfo: { snid: accessVector } } } }); } })(); (function(w,d,s,l,i){w[l]=w[l]||[];w[l].push({'gtm.start':new Date().getTime(),event:'gtm.js'});var f=d.getElementsByTagName(s)[0],j=d.createElement(s),dl=l!='dataLayer'?'&l='+l:'';j.async=true;j.src='https://www.googletagmanager.com/gtm.js?id='+i+dl;f.parentNode.insertBefore(j,f);})(window,document,'script','dataLayer','GTM-K279D39R'); Browse Preprints In Review Journals COVID-19 Preprints AJE Video Bytes Research Tools Research Promotion AJE Professional Editing AJE Rubriq About Preprint Platform In Review Editorial Policies Our Team Advisory Board Help Center Sign In Submit a Preprint Cite Share Download PDF Research Article Design, adaptation and content validation of the Sheffield Profile for Assessment and Referral for Care in Colombian Spanish (SPARC-Sp-Col) Cindy V. Mendieta, Esther de Vries, Jose A Calvache, Sam H. Ahmedzai, and 2 more This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-8703055/v1 This work is licensed under a CC BY 4.0 License Status: Posted Version 1 posted You are reading this latest preprint version Abstract Background: Palliative Care (PC) aims to improve the quality of life of individuals with life-threatening illnesses through the early identification and management of holistic needs. Many Colombians in need of PC die without having access to it. When we previously adapted and validated the Sheffield Profile for Assessment and Referral to Care for Spanish-speaking populations (SPARC-Sp), users reported unmet needs and challenges in comprehension and self-administration, particularly among those with lower literacy levels. We designed, culturally adapted, and validated a Colombia-specific module, SPARC-Sp-Col, as an enhancement to SPARC-Sp, to better capture the holistic PC needs of Colombian patients. Methods: We used a five-step qualitative methodology: ( 1 ) preliminary adaptation of a Colombia-specific module as add-on to SPARC-Sp for the Colombian context; ( 2 ) online expert panel review; ( 3 ) integration of feedback and iterative refinement; ( 4 ) cognitive interviews with patients; and ( 5 ) focus groups with healthcare professionals, patients, and caregivers from across Colombia. Results: The iterative adaptation process led to the refinement of item language for improved clarity and cultural resonance, while maintaining semantic equivalence with its original version. We included 17 new items to reinforce existing domains and a dedicated Colombia-specific module to address unmet local needs (5 of them) including housing conditions, violence and navigating the health care system. The evaluation of the resulting tool, SPARC-Sp-Col, demonstrated good content validity according to Aiken's V (> 0.5), reflective of feedback from expert consensus, allied and social healthcare professionals, patient and caregivers. Conclusions: SPARC-Sp-Col is a culturally adapted, content-validated instrument that expands SPARC-Sp by incorporating a Colombian-specific module. It enables a more accurate and context-sensitive assessment of the holistic care needs of cancer patients in Colombia. Its development marks a key step toward improving the timely and equitable delivery of PC in a country where access to appropriate support is often lacking. Epidemiology SPARC Holistic needs assessment Palliative Care Colombia validation Figures Figure 1 Background Palliative Care (PC) aims to improve the quality of life of patients and families with life-threatening illnesses by preventing and alleviating suffering through the early identification and management of holistic needs ( 1 , 2 ). Holistic needs assessment (HNA) in PC involves recognising any changes or abnormalities including and beyond the physical and psychological levels that may affect the overall health, general wellbeing or quality of life of an individual and their family. Thus, HNA encompasses the identification of physical, emotional, spiritual, environmental, social, sexual, financial and cultural needs ( 3 ). In Latin America in 2020, an estimated 1,562 PC teams were available. A team is composed of medical and/or nursing staff where at least one member of the team is trained in PC. Extended teams may include psychology, physiotherapy, social work and chaplaincy ( 4 ). PC provision was highest in Uruguay (24.5 teams per million), followed by Costa Rica and Chile ( 4 ). Of these, 75% of the teams were based in hospital settings ( 4 ). Five Latin American countries -Costa Rica, Chile, Mexico, Colombia, and Peru- have established national legislation on PC ( 4 ). In Colombia, according to the Colombian Palliative Care Observatory, 39% of the chronically ill Colombian population could have PC needs and approximately three out of ten people died while waiting for PC ( 5 ). Multiple barriers contribute to the poor access to PC, including limited availability of PC services in some areas, lack of awareness and taboos regarding PC among different stakeholders (policymakers, health professionals, general public), myths, cultural and social barriers framed by beliefs about death, concept of a ‘good death’, and the potential for opioid misuse ( 6 ). In addition, healthcare professionals describe difficulties in conducting HNA early enough, contributing to patients accessing PC very late - at the end of life or in very advanced stages of their disease ( 7 ). To date, only three tools for assessing holistic needs in PC have undergone validation in Colombia ( 8 – 11 ), among which the Sheffield Profile for Assessment and Referral to Care (SPARC) currently has the most comprehensive evaluation of reliability and validity evidence, including linguistic, cross-cultural, content, internal structure, criterion, and construct validity ( 10 , 11 ). SPARC is a UK instrument ( 12 ) for holistic needs identification validated in Poland ( 13 ), Korea ( 14 , 15 ), Taiwan ( 16 ), and in the Colombian context as SPARC-Sp ( 10 , 11 ). SPARC-Sp is designed to be a self-administered instrument with eight domains and 56 questions ( 10 , 11 ). However, during its initial validation ( 10 , 11 ) several opportunities were identified for local improvement, given the difficulty in understanding some concepts and the impossibility of self-administration for the relatively large part of the Colombian population with low educational levels ( 17 ). This research aimed to resolve those issues by designing, culturally adapting, and validating the content of the SPARC-Sp-Col instrument for assessing holistic needs in Colombian patients with chronic diseases including cancer from rural and urban areas. Methods SPARC-Sp Instrument: SPARC-Sp is a self-administered instrument with eight domains: communication and information (7 questions); physical symptoms (21 questions); psychological (9 questions); religious and spiritual (2 questions); independence and activity (3 questions); family and social life (4 questions); treatment (2 questions); and personal issues (3 questions) making a total of 56 questions. From the total, four questions are dichotomous (yes/no). The remaining questions have a four-point Likert scale with labels of "not at all” [score of 0], “a little” [score of 1], “quite a bit” [score of 2], and “a lot” [score of 3]" (11). A score of three is an indication that the patient has a significant PC need (11). In addition, two open-ended questions are included to probe for additional concerns and worries (11). This study was grounded in a social constructivist paradigm, whereby participants actively and iteratively contributed to the co-construction of knowledge, influenced by social and cultural contexts (18). Figure 1 illustrates the processes carried out for the methodological conduct of the research presented within this paper, following the guidelines of the Consolidated Criteria for Reporting Qualitative Research (COREQ) (Additional file 1) (19), together with the dates and the number of participants. Each of the 5 steps presented are described in the following sections. Step 1: Preliminary adaptation of SPARC-Sp-Col: The first step (January 2024) aimed to identify the preliminary adaptations required to make SPARC-Sp an easy-to-understand instrument for Colombian patients with chronic diseases including cancer and low to moderate literacy skills. SPARC-Sp has a final open-ended question asking patients if they have any holistic care needs that are not covered by the previous questions of the instrument (12). Based on the findings of the original SPARC-Sp validation of this open-ended question (12), we conducted a thematic analysis to identify the main categories not covered by SPARC-Sp-Col. From this analysis the following were found to be relevant within Colombia but missing from SPARC-Sp: social and geographical barriers; economic and legal issues; health system barriers; occupation; and violence and insecurity (21). Social and geographical barriers encompassed difficulties in mobility to access health centres; economic and legal issues referred to difficulties in accessing pensions, or the insurmountable challenge of settling financial debts and the requirement of legal procedures; health system barriers included lack of access to health services, referrals and medical appointment requirements; occupation referred to unemployment and difficulty in returning to work; and violence and insecurity comprised armed conflict, food and nutrition insecurity and sexual abuse (21). A deductive analysis following the steps established by Fife et al., (22) was carried out to identify: (i) modification of words to enhance understanding; (ii) new items that responded to eight domains contemplated in the original version of SPARC-Sp; and (iii) new items that represented unmet needs related to the Colombian context (Colombian Module for SPARC-Sp). Step 2: Online peer evaluation: The second step (May 2024) aimed to assess the relevance and understanding of the modifications and additions made to SPARC-Sp (SPARC-Sp-Col). The preliminary prototype of SPARC-Sp-Col was drafted into an online Microsoft Forms file (23). This online version included the items accompanied by questions about their relevance (Likert scale: 0 – Not relevant to 5- Highly relevant) and comprehensibility (yes/no) of items added (n=18) or reworded (n=15) with the possibility to suggest further changes. The questionnaire was sent via email to potential participants and was returned anonymously. Potential participants included allied and social healthcare professionals and spiritual advisors from rural and urban areas of Colombia with cancer expertise and who had participated in a previous multidisciplinary research project on PC in Colombia (24). In June 2024, these potential participants (N=62) were invited through social networks and email, of which 29 agreed to participate (47% response). Previous works suggests that the recommended sample size requirement for this type of study is 15 - 30 persons (25). We conducted a thematic analysis on the data obtained from this Microsoft Forms following the methodology described by Fife et al., which encompasses the development of the research question, operationalisation of theory, purposive sampling, coding and analysis, and theorization (26). We evaluate comprehensibility and relevance and estimated the Aiken V Coefficient to determine the proportion of participants who had a positive evaluation of the proposed SPARC-Sp-Col items (27) using R Studio 4.3.3 (28). The open-ended questions were analysed through a thematic analysis by CVM, supervised by EdV and JAC (10). Step 3: Integration and evaluation In the third step (August 2024) we evaluated the semantic equivalence of SPARC-Sp-Col (step 2) through the judgement of experts, defined as those with experience with the assessment instrument (SPARC-Sp) (29). This process involved feedback from bilingual experts and the multidisciplinary team of researchers in charge of the field application of the original version of SPARC-Sp. We also determined the comprehensibility and relevance of new items by researchers with experience in PC in Colombia and the application of SPARC-Sp. Two bilingual researchers (CVM and EdV), with good fluency in Spanish and English, translated the version resulting from step 2 to English for the native English-speaking researchers to review the changes made (GP, JR and, SHA) following the ISPOR good practice guidelines for the translation and cultural adaptation of patient-reported outcome measures (30). This translation sought a conceptual, social and cultural equivalence rather than a literal translation, as the English version will not be used in practice (31). Moreover, some of the new questions for Colombian people would not have resonance in the British health and social care context due to differences in the functioning of the health system and linguistic variations, particularly in the use of colloquial expressions. The translated version was provided in an online Microsoft Forms document where the UK experts (GP, JR and, SHA -original developer of SPARC) (3) evaluated the relevance of the new items (Likert scale: 0 – Not relevant to 5- Highly relevant) and had the possibility to suggest modifications. These suggested modifications were translated into Spanish by CVM under the supervision of EdV and were consolidated in a final report that featured the final version of SPARC-Sp-Col in Spanish and English. Discrepancies were resolved through an online meeting via Microsoft Teams with the Colombian (CVM, EdV, JAC) and UK (GP, JR and, SHA) research team members. This revised version of SPARC-Sp-Col was presented to four multidisciplinary researchers with experience in the application of original SPARC-Sp in Colombia and three researchers with PC experience to determine the comprehensibility of the items and the relevance of the new additions to the original instrument. Participants completed an anonymous evaluation through an online form that was subject to thematic analysis. Step 4: Cognitive interviews Step 4 (September 2024) aimed to consolidate previous phases of the study through the assessment of acceptability, relevance, comprehensibility and completeness of SPARC-Sp-Col from the patients' and carers’ perspective. A paper copy of the version of SPARC-Sp-Col produced in step 3 was presented in five cognitive interviews to assess the acceptability, relevance, comprehensibility and completeness of the modifications made and the new items. Eligibility criteria for these cognitive interviews were Colombian adults (> 18 years old), who would be available for an interview of approximately 90 minutes and who would agree to participate. This sample size was based on the standards for content validity established by COSMIN (COnsensus-based Standards for the selection of health Measurement Instruments) (32). Participants (Additional file 2) were selected through purposive sampling (26) with the aim of including diversity of gender, age, geographic location and educational level, from the contact list of participants of the previous project and through the networks of the principal investigators following the eligibility criteria. The interviews were conducted face-to-face by CVM in private classrooms at the University or at the participants' homes and were recorded and transcribed verbatim, after which a thematic analysis was carried out (22). The findings were integrated into a report, translated and back-translated for presentation and discussion with the research team including the original SPARC developer (SHA). Step 5: Focus group with discussions Step 5 (November 2024) aimed to determine the usefulness, difficulties, facilitators and perspectives on the use of SPARC-Sp-Col including the hypothetical needs assessment summary which includes a synthesis of the main needs identified by SPARC-Sp-Col. We conducted four focus groups: 2 in Bogota, which is the capital city and a very urbanized area; and 2 in Popayan, which is a small city in a largely rural, relatively poor region. In each area one focus group was conducted with healthcare professionals and allied healthcare professionals and another with patients with chronic diseases and carers of such patients, including cancer patients and carers. The participants in these groups came from both urban and rural areas and represented diversity in perspectives and experiences that enriched the discussions and outcomes of the focus groups. Participants were patients with chronic diseases, carers and allied and social healthcare professionals from rural and urban areas of Colombia. We excluded patients who were hospitalised or unable to communicate due to the methodological conduct of this phase of the research. Purposive sampling was applied, where participants were invited through social networks of the previous project (26). We planned to include approximately seven people per focus group, seeking diversity in background, gender and age (26). Each focus group lasted approximately two hours and included a video presentation of SPARC-Sp in Spanish, designed specifically for the group of participants taking part in the activity (patients vs. healthcare professionals) (24). A printed version of SPARC-Sp-Col was given to each participant. Participants were given the instruction to read SPARC-Sp-Col carefully, and if they so desired, they could complete it. Accompanying the paper version, we presented a fictitious but realistic example of a needs assessment recorded using SPARC-Sp-Col, based on a hypothetical patient (Additional file 3). Each group was facilitated by a researcher (CVM, EdV, JAC) who oversaw and guided the discussions. During the focus groups, sticky notes were provided so that participants could record their ideas directly onto these, and a participant-moderator from each group was invited to share them and the main findings of their group to the other groups. The interviews were conducted at the university (Bogota) or at a partner institution in the rural area (Popayan). Focus group were audio-recorded and transcribed verbatim. Analysis was carried out at the culmination of each focus group, with CVM and EdV conducting a thematic deductive analysis following the processes established by Fife et al. (22). The main categories were discussed, and tiebreakers were resolved by a third researcher (JAC) by consensus. The results were translated into English by a bilingual researcher (CVM) and compiled into a report to a panel of experts in the UK including the original developer of SPARC for further discussion. Results • Step 1: Preliminary adaptation of SPARC-Sp-Col: Based on the observations identified in the previous validation of SPARC-Sp-Col ( 10 , 11 ), we identified: (i) modification of words to enhance understanding; ii) new items that responded to eight domains of the original version of SPARC-Sp; and (iii) new items that represented unmet needs related to the Colombian context (Colombian Module for SPARC-Sp). We modified 17 items in the domains of communication and information, physical symptoms, psychological, religious and spiritual issues and personal matters of SPARC-Sp (Table 1 ). Moreover, we identified 10 potential new items that could complement seven of the original eight domains of SPARC-Sp and we created the Colombian module for SPARC-Sp which seven new items related to housing characteristics, armed conflict, lack of a caregiver, difficulty in seeking medical appointments, accessing treatment, medicines or other services, bearing the cost of treatment or medicines, and the requirement to travel to other places to receive care (Table 1 ). Table 1 Modifications and additions to items during the five steps Domain Items Steps where the item were modified Type of modification Original version Final version 1 2 3 4 5 Comunication and information Other people (please state) Other persons, services, programmes or support groups (which ones): X X Improve clarity * Do you feel that you are not being told the truth about your situation or illness? Do you feel that you have all the information you need about your health situation or illness? X X X Use softer and non-judgmental wording * Have you been afraid to talk about your health situation or illness? Have you been afraid to talk about your situation or illness? X X Improve holistic needs assessment Physical symptoms Feeling sick (nausea)? Feeling /sick/ (nausea)? X Improve clarity Being sick (vomiting)? Being /sick/ (vomiting)? X Improve clarity Bowel problems (eg constipation, diarrhoea o incontinence)? Intestinal disturbances (e.g. constipation, diarrhoea, loose or stomach damaged)? X X Improve clarity Bladder problems (urinary incontinence)? Having pain when urinating, bleeding when urinating, itching, urinary incontinence or leaking urine when not in the toilet? X X X Improve clarity Problems sleeping at night? Having difficulty falling asleep or waking up many times during the night? X X Improve clarity Problems with swallowing? Difficulty swallowing or passing food or drink? X Improve clarity Being concerned about changes in your appearance? Because of changes in their physique? X Improve clarity Feeling that your symptoms are not controlled? Feeling that your ailments or discomforts have not been controlled? X Improve clarity *Feeling changes in your vision? Feeling changes in your vision? X X X Improve clarity and holistic needs assessment – Small changes in the Spanish wording *Feeling changes in your hearing? Feeling changes in your hearing? X X X Improve clarity and holistic needs assessment * Feeling that you are retaining fluids? Do you have swelling in your feet or legs? X X X Improve clarity Psychological issues Feeling anxious? Feeling uneasy, brooding or anxious? X Improve clarity Feeling confused? Feeling confused (not understanding what is going on)? X X Improve clarity Feeling unable to concéntrate? Having difficulty concentrating or feeling distracted? X X Improve clarity The effect of your condition on your sexual life? Changes in your sexual life? X Improve wording in Spanish *Having thoughts that keep you awake at night? Having thoughts, torments or anxieties that keep you awake at night? X X X X Improve clarity Religious and spiritual issues Religious or spiritual needs not being met? Need help on a religious or spiritual level and do not receive it? X X Improving clarity *Feel that you need help to make amends or reconcile with someone? Feeling that you need to make amends or reconcile with someone? X X X X Improving holistic needs assessment Independence and activity * Losing your independence to make decisions about your life and health situation? Feeling unable to make decisions about your life or health situation? X X X X Use softer and non-judgmental wording Family and Social issues *Feeling that your family treats you as if you are not going to get better? Feeling that your family thinks differently than you do about your health situation or illness? X X X Use softer and non-judgmental wording Personal issues Do you need any help with your personal affairs? Do you need help with personal matters (paperwork, legal issues, debts, etc.)? X Improve clarity Financial issues Money issues X Improve clarity Other (please state) Other types of support (education, work, psychology, exercise, therapies, food, communication, etc.). X X X Improve clarity * Do you need help with accessing a disability or retirement pension? Do you need help to receive a disability pension? X X X Improve clarity Colombian module * Feeling that health staff do not take into account your living situation (transport, condition of the house, money issues, armed conflict, caregivers)? Feeling that your current living situation or conditions (transport, features of your home - e.g. having to climb stairs, money matters, armed conflict, lack of a caregiver) are not taken into account by health care staff? X X X Improve clarity *Having difficulty in meeting with health professionals (problems with appointments, authorisations, continuity)? Having difficulty in meeting with health professionals (problems with appointments, authorisations, continuity of care, etc.)? X X Improve clarity * Access to treatment or other services? Be able to demand or follow up on treatment, medicines or other services? X X X Improve clarity * The costs of your treatment or medication? The price of your treatment or medication? X X X Improve clarity * Displacement to other places for care? Travel to other places for care? X X X Use softer and non-judgmental wording and avoid confusion % * New questions added to SPARC-Sp-Col, where the original version corresponds to the first version of each question. % The word “displacement” in Colombia is usually interpreted as being forcibly displaced because of the armed conflict. • Step 2: Online peer evaluation: The new version of SPARC-Sp that emerged from step 1 (SPARC-Sp-Col) was evaluated by 29 allied and social health professionals working in both rural and urban areas of Colombia (5 general practitioners; 7 medical specialists; 7 nurses; 1 occupational therapist; 1 dietitian; 1 speech therapist, 2 psychologists; 5 spiritual or religious counsellors). Participants were provided with a structured online form where they could rate the acceptability of each of the items and justify the answer behind their choice. The average response time was 40.19 minutes. Most of the modifications made to SPARC-Sp-Col were widely accepted by the participants (Additional file 4). However, some questions had a lower acceptance due to the difficulty in understanding terms such as ‘appearance’ and ‘anxiety’. Therefore, we identified synonyms or used colloquial terms which were easier to understand. For the evaluation of the relevance of the new items added to the pre-existing SPARC-Sp-Col domains we applied a Likert scale (5: very relevant to 0: not relevant) which allowed the estimation of the Aiken V coefficient. All new questions – including the Colombian module were relevant according to Aiken's V coefficient (> 0.5) (Additional file 5), showing that each question represents adequately the content domain to which it belongs. However, despite the relevance of the last question (Requesting medical appointments), participants felt that it could be implied in other questions in this module, so it was removed. • Step 3: Integration and evaluation: Four researchers with experience in the application of original SPARC-Sp in Colombia (2 anaesthesiologists, 1 palliative care nurse, 1 rural physicians) and three researchers with PC experience (1: medical epidemiologist, 1: psychologist and 1: nurse) reviewed the modifications and additions to the questions. Based on their feedback, we presented two versions of the 17 questions (the first one kept the original version, and the second one was constructed with the feedback given by the participants). These two options were presented to a panel of seven experts with backgrounds in clinical epidemiology, psychology or PC who selected one of the options as their preferred version and had the option to modify or suggest further adjustments (Additional file 6). • Step 4: Cognitive interviews Five cognitive interviews were conducted with participants including people of different ages, backgrounds, occupations, educational levels (Additional file 2). Cognitive interviews were used to assess comprehensibility, difficulty of terms and wording. Feedback from participants identified colloquial terms to exemplify a need (e.g. stomach bug - ‘soltura’), identified synonyms, problems in wording or culturally sensitive terms (e.g. displacement, as a synonym for forced displacement and not a travel to another destination to receive healthcare attention) (Table 2 ). Table 2 Modifications of the items according to cognitive interviews. Domain Item Comments Physicial symptoms Bowel problems (eg: constipation, diarrhoea or "stomach damage" The use of “soltura” – “stomach/stomach bug” is suggested as a more colloquial way of giving a description. Leaking urine? We add these terms suggested by the participants as more colloquial ways of exemplifying the construct to be assessed Problems with swallowing? “Swallowing” was a very difficult term for participants to understand, so we used a more colloquial term and added the example of passing food or drink. Feeling that you are retaining fluids? “‘Fluid retention” was not clear to all participants. Psychological issues The effect of your condition on your sexual life? Although the original version was clear, it was not well drafted in Spanish. It certainly did not match with the original instruction of the question Having thoughts that keep you awake at night? Participants suggested more colloquial terms such as “torments’” or “anxieties” are very Colombian ways of explaining that a thought resonates a lot in your head. Religious and spiritual issues Feel that you need help to make amends or reconcile with someone? The wording was changed to improve cohesion with the introduction of the Spanish question. Independence and activity Not being able to make decisions about your life or health situation? The wording was changed to avoid the inclusion of negative words that could cause confusion for the participant. Personal issues Other types of support (occupational, psychological, therapeutic, nutrition and food, leisure and free time, recreational activities-recreation and sport)? Giving examples helped participants to better understand the question. We also had to change words perceived as difficult for participants such as physiotherapy or rehabilitation to exercise and therapies. Colombian module Feeling that health staff do not take into account your living situation (transport, condition of the house, money issues, armed conflict, caregivers)? Some participants found it strange that we asked this question, because they do not consider it the duty of health staff to analyse these factors. However, all perceived it to be a relevant question. For clarity, it was suggested that we clarify what we meant by features of your home and the term caregivers. Continuity of your treatment or medication? Participants suggested the change of “continuity” as it is a very complex word. The costs of your treatment or medication? Participants suggested an even more colloquial way of asking about cost. Displacement to other places for care? The word “displacement” was difficult to understand and often misinterpreted as in Colombia it is often used to refer to forced displacement because of the armed conflict. Participants suggested to us a much simpler and clearer form • Step 5: Focus group with discussions We conducted four focus groups in November 2024 with a total of 38 participants including healthcare professionals, caregivers and patients from Bogota and Popayan. Characteristics of the participants are described in Additional file 7. Following the deductive analysis ( 22 ), we established some main categories: (i) Extension and application of SPARC-Sp-Col, (ii) Frequency of use and timing of application, (iii) Summary of needs, (iv) Other suggested modifications for SPARC-Sp-Col, (v) Barriers and (vi) Colombian module. The practical recommendations for the implementation and use of SPARC-Sp-Col according to these stakeholders are described in Table 3 . The final version of SPARC-Sp-Col can be consulted in the data in the Additional file 8. Table 3 Practical recommendations for the implementation and use of SPARC-Sp-Col according to stakeholders Characteristics Professionals Patients Caregivers Extension and application of SPARC-Sp-Col Consider the extensive length of SPARC-Sp-Col and the potential difficulties in clinical contexts with a high number of patients. Express that the length does not necessarily constitute a barrier for them to completing it. Acknowledge that it allows a more personalized and individual assessment of needs and care planning. Recommend independent administration, without presence or help from relatives or caregivers Prefer self-administration or a facilitator for older adults or individuals with limited literacy skills, different to caregiver. Suggest caregivers answer it together with the patient, given their closeness, knowledge, and ability to support potential functional limitations. Frequency of use and timing of application All propose multiple moments or settings for administration: at diagnosis, prior to medical or specialist consultation, and in waiting rooms or inpatient care during follow-up. Summary of needs All recommend sharing the synthesis of needs identified and their priority by SPARC-Sp-Col with healthcare staff, caregivers, or family members. Other considerations Suggest modifications in response options: replacing “quite a bit/bastante” and “very much/mucho” with “mucho” and “muchísimo”; use of color codes (similar to traffic lights) for response options. Recommend the use of SPARC-Sp with the inclusion of the Colombian module (SPARC-Sp-Col). Propose future adaptations to indigenous languages and Braille. Highlight the need to consider the stress experienced by healthcare staff, patients, and caregivers when addressing needs related to structural determinants. Extension and application of SPARC-Sp-Col SPARC-Sp-Col was perceived by health professionals as a lengthy instrument, possibly tedious to answer. For these reasons, the professionals expressed concerns regarding its applicability in high patient volume clinical settings. The patient’s perspective concurred that the instrument was lengthy but expressed that in their current situation and life condition, time had a different meaning, and that the length would not be an impediment for them to use the tool. They highlighted that the Colombian module allowed for a more comprehensive and patient-centred self-care needs assessment. The only disadvantage would be that the consultation could take a little longer, especially in clinics where there is a high volume of patients (Male, Dentist, periodontics specialist, Popayan). That's another thing you learn with time. Dedicating time to oneself (Male, Patient, Popayan). There was a range of views about the application of SPARC-Sp-Col, with practitioners suggesting that it should be applied independently by the patient, without the need for help from their family member or caregiver, to avoid biasing their responses. The relative sometimes says: -“no, if he is suffering a lot”- and the relative begins to fill out the forms (...) “Yes, I have seen that he is in a lot of pain or that he is sad” but perhaps that is not the case (Female, Geriatric resident, Bogotá). However, caregivers felt that it was important for them to carry out SPARC-Sp if it is possible together with the patient because of their close relationship with the patient, knowledge of the patient and the difficulty of completing the instrument by patients with more advanced clinical or greater clinical deterioration. Identify who is the patient and the caregiver; usually it is the caregiver who knows all about the patient (Female, Caregiver, Cauca rural area). We don't know what condition the patient is in. And maybe the caregiver knows everything about the patient, so the caregiver is the one who supports him/her [the patient] in filling out the form (Female, Caregiver, Cauca rural area). From the patients' perspective, SPARC-Sp-Col was viewed as a very personal instrument, which could help to identify and communicate their own needs. However, patients considered that filling it out may be difficult for certain patients (e.g. older adults, people with low literacy skills) and the support of a facilitator (possibly a family member or caregiver) who can guide its application may be required. It can be with a family member or sometimes it can be filled out without help, as this tool is a way to let off steam about one's health and to communicate issues with the family (Female, patient and caregiver, from Bogotá, hospital alliance group). There are people from the villages, there are people from the municipalities, there are people from everywhere, (...) and if someone does not understand, there is the person (facilitator) right there, ready to explain and help them (Female, Patient, Popayan). Frequency of use and timing of application It was suggested that SPARC-Sp-Col could be applied across a range of settings and time points through a patient’s journey. These included: at the time of request for a medical appointment; at diagnosis; prior to the first consultation with the general practitioner or specialist; and in waiting rooms or during hospitalisation. I suggest that a link to fill out SPARC will be given when making an appointment (Female, Caregiver, Cauca Rural Area). In the first consultation, it provides us with a baseline of the patient’s situation and provides an idea of which interventions could be good for a patient. Normally, in a consultation, it is very difficult to be able to cover all the items or needs that a patient may present with and scores positive (...) (Female, Doctor, geriatrics resident, Bogotá). Sometimes patients are a long time in the hospital and don´t have what to do. I think filling out SPARC could even give them something to do to get out of that little routine a bit and at once provide valuable information (Male, Physician and Clinical Epidemiologist, Bogotá). Summary of needs Participants suggested the needs identified by SPARC-Sp-Col could be shared in a needs summary with the healthcare staff, caregivers or family members. This synthesis of needs in a graphical format can be represented as an infographic where it is possible to identify the needs in order of prioritisation for addressing them. Patients, caregivers and healthcare staff considered that this summary of needs could optimise communication and identification of needs, prioritisation of their multidisciplinary approach and reduce delays in appropriate service provision. Not only are they going to see the psychological needs, but with the summary of needs we already know which professional should be following up and accompanying the patient (Female, Psychologist, Popayán). I think it is a very important tool because the doctor already has good information at a glance, and it would be to ask this [summary of needs]. This is what I see as valuable, given the time, it is very short (according to SPARC-Sp-Col) (Female, Patient, Valle del Cauca). The oncologist does not tell you about your sexual side (...) In other words, you are left with the feeling that you are embarrassed to ask about it and with that trauma (the cancer) (Female, Patient, Santander) Other suggested modifications for SPARC-Sp-Col There was confusion between the options of “quite a bit/bastante” and “very much/mucho”. In the validation phases, we found that depending on the region within Colombia, “bastante” can be considered as either more or less than “mucho”, causing confusion for participants to identify the logic in the order of answer options (which was meant to represent the ascending level of difficulties). As a solution, participants suggested using “mucho” and “muchísimo” instead of “bastante”/”mucho”. “Muchísimo” represents a more colloquial form and denotes greater intensity or severity. In addition, they suggested using colour coding within the answer options following traffic-light logic (green: ‘no worries or preoccupations’, through to red: ‘highest level of worries’). This idea of colour coding was well received: I'm interested, I would like to have this little piece of paper myself and say “yes, Doctor. Look what happened, this came out in red” (Female, Patient and caregiver, Bogotá). To increase the potential use in multiple populations within Colombia, it was suggested to translate and validate Sparc-Sp-Col in indigenous languages such as Misak, Nasa; and also, to have it available in Braille. Barriers Healthcare professionals expressed concern about the type of needs identified in the domains of personal issues (Do you need help to receive a disability pension?), and in the Colombia module of SPARC-Sp-Col, because many needs corresponded to structural determinants that would prove difficult for health workers to address. Participants considered that for SPARC-Sp-Col to be used in clinical practice, multiple actions would be needed, such as: raising awareness of the instrument; dissemination of the instrument; training of healthcare personnel in its use; and design and explanation of the possible care pathways to address the needs identified by SPARC-Sp-Col. We should have, let's say, a roadmap of who we are going to ask for help so that they can help us to fulfil what we are saying [address the needs](...) We have to really document and know how far we can go as an institution, because otherwise we are going to give the patient hopes that we will not be able to fulfil. (Female, Psychologist, Popayán). Colombian module The Colombian module was widely accepted by patients and caregivers as it links economic needs, necessary travel for care and access to retirement pensions. There was one suggestion to adjust the question on having difficulties in access to pension. The economic issue for me is I think that this is the majority, if I say that there are 90% of fellow patient in chemotherapy who had to give up work, they have had to give up everything (Male, Patient, Popayán). Question about having to travel to other places to receive care: I put in a lot (second highest score)] (...). Currently I have to pay money, they charge me 350,000 [Colombian pesos] (Female, Patient, Popayán). Discussion Our research has shown the development and positive evaluation of an instrument for assessing holistic care needs in Colombian patients with chronic diseases, including cancer, from both rural and urban areas. This was possible due to the strong community involvement in the design and execution of this exercise as the iterative contact with patients, caregivers and allied and social healthcare professionals was needed to fine-tune the adjustments. Our research showed that multiple rounds of development and evaluation were needed to effectively address the issues identified in earlier validation phases. This approach ensured the tool would be useful across Colombia’s diverse populations, both within and outside the universal healthcare system. From the comments made in the first validation round of SPARC-Sp ( 10 , 11 ), we learnt that many patients and caregivers have difficulties in accessing PC for physical, spiritual needs. They also mentioned multiple financial and social difficulties which would need to be addressed to effectively access PC, on whatever level of provision ( 10 , 11 , 33 ). Addressing these observations led to the development of the “Colombian module” as an add-on to SPARC-Sp. Our validation suggests that the Colombian module enhances the tool’s cultural and contextual relevance by effectively addressing the identification of holistic needs specific to the Colombian population. This adaptation is expected to improve the instrument’s acceptability, comprehension, and usability, particularly among individuals with diverse sociocultural and educational backgrounds. The multiple small but important linguistic adaptations also show the importance of local testing and adjustment of wording of instruments trying to maintain semantic equivalence ( 31 ). In this study, we identified differences in the understanding of the SPARC-Sp response options ( quite a bit – “bastante” and very much – “mucho”). These cultural nuances in the use of adverbs of quantity have previously been noted in translations from other languages into Spanish and may lead to inadequate linguistic transfers and induce confusion for the reader ( 34 ). The suggestion of traffic light-logic colouring within the Likert scale may help improve this situation. Other adaptations of SPARC, such as the Korean version, reported challenges in translation and highlighted the need to soften the wording of certain questions and to employ more colloquial language ( 14 ). Similarly, the Taiwanese adaptation indicated that, although the terms were not particularly difficult to understand, there were similarities between some items, difficulties in distinguishing between the roles of hospital and community nurses, and a strong emotional connotation associated with the word “illnesses” ( 16 ). The previous translations and adaptations were completed in settings that, although linguistically and culturally quite different from the UK, were high-income settings and were performed with a relatively highly educated patient populations ( 14 – 16 ). We conducted the SPARC-Sp-Col study in a middle-income country, with part of the work taking place in a particularly impoverished region that has long been, and continues to be, affected by violent conflict. Spanish is a language spoken by most of South and Central American populations, but expressions may be differently understood, even between regions of one country ( 35 ). Whereas it is very common to widely use a tool that was translated and validated in one Spanish speaking country ( 35 ), this is a convenience that should not be promoted ( 36 ), although sometimes for practical reasons it is impossible to avoid. The understanding and acceptability of items vary by region, culture and educational level, and some formulations may really be misunderstood in some regions generating a cultural bias ( 36 ). Although we employed purposive sampling, seeking heterogeneity of the participants, we recognise that in this project we failed to reflect all existing multidiversity within Colombia. However, we believe that, by working with geographically, culturally and socioeconomically very diverse populations, we have managed to reflect and incorporate many of these variations in the development of the current instrument. In addition, the Popayan area was and remains a relatively poor area of the country that suffers from the armed conflict that persists in multiple parts of Colombia, and which creates its specifics needs and barriers for patients ( 37 ). In turn, the inclusion of Bogotá as the capital of Colombia represents an urbanised region, with relevant problems for the guarantee of access to PC, such as migration, forced intra-urban displacement, economic instability, among other determinants ( 37 , 38 ). Future research is needed to evaluate how SPARC-Sp-Col performs in different regions of the country. An important point of discussion in all groups was whether or not the SPARC-Sp-Col should and could be a self-administration instrument, as it was designed to be. Participants agreed that the design of the questions in principle, allowed for self-administration, but only if people are physically and mentally able. There were two main opinions on self-application: caregivers often thought it was important for them to help fill out the instrument, as they believed that they knew the patient well. While some patients agreed this could work well, others said they would answer differently when their caregiver was assisting them– an important argument for strict self-application when possible. Healthcare professionals generally expressed that in practice, caregivers are often very heavily involved and will tend to “help out” filling the form or even take over the complete task of answering SPARC-Sp-Col – highlighting the importance of clear instructions on how, when, where and with whom to apply the instrument. From the health professionals' perspective, the identification of PC needs is also influenced by cultural and religious factors, regional difficulties, misinterpretations of PC, age and illness ( 39 ). Other determinants of suboptimal needs identification may stem from the organization of the health system, allocation of resources, PC training, and workload demands ( 38 ), all of which contribute to distress among healthcare professionals ( 40 ), and may hinder the appropriate administration of SPARC-Sp-Col and the effective addressing of the identified needs. Regarding caregivers, previous research highlights the role of caregivers in shared decision-making in setting up a care plan ( 41 ). However, it is estimated that about 55% of caregivers of adults with severe chronic illness have never heard of PC, and 40% associate it only with end of life without considering earlier implementation ( 41 ). At the national level, the 2022–2026 Action Plan (Building a Positive Environment for PC in Colombia) is currently underway, urging the strengthening of PC programmes to ensure the continuous care of individuals with palliative needs and their families ( 42 ). Within this framework, SPARC-Sp-Col could be integrated as a tool to support communication and the identification of needs. Moreover, previous prioritisation exercises for the implementation of PC research in Colombia highlight the importance of exploring the needs of the patient as well as their caregivers as an approach to a more comprehensive assessment ( 43 ). Conclusion SPARC-Sp-Col is a culturally adapted, content-validated instrument that expands SPARC-Sp by incorporating semantic changes to the wording and a Colombian-specific module. This tool enables a more accurate and context-sensitive assessment of the holistic care needs of cancer patients in Colombia. Its development marks a key step toward improving the timely and equitable delivery of palliative care in a country where structural, cultural, and educational barriers often delay or prevent access to appropriate support. The findings also highlight the importance of validating and if necessary, adapting instruments to the local population and circumstances – even if they speak the same language. This calls for a more comprehensive approach, which could also encompass large indigenous languages as Nasa, Misak, Wayúu and Emberá and the Braille system. Abbreviations COREQ: Consolidated Criteria for Reporting Qualitative Research. COSMIN: COnsensus-based Standards for the selection of health Measurement Instruments. ISPOR: International Society For Pharmacoeconomics And Outcomes Research. SPARC: Sheffield Profile for Assessment and Referral for Care. SPARC-Sp-Col: Sheffield Profile for Assessment and Referral for Care in Colombian Spanish. PC: Palliative Care. HNA: Holistic needs assessment Declarations Ethics approval and consent to participate: This research has been approved by the Ethics and Research Committee of the Hospital Universitario San Ignacio (FM-CIE-0010-24). Participants received the Informed Consent form and participants who participated in steps 4 and 5 received a voucher of 40 thousand Colombian pesos equivalent to 9.7 dollars. Consent for publication: All participants consented to the publication of anonymised data collected in the research through informed consent. Availability of data and materials: Data are available in anonymised form upon reasonable request to the authors. Competing interests: The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article. Funding: This project was funded by the International Strategic Partnerships Fund – ODA block-funded grant to Queen’s Belfast University . - Department for the Economy NI (DfE) International Science Partnership Fund (ISPF) Official Development Assistance (ODA) Institutional Support Grant (ISG) - R3601NUR Authors' contributions: Conceptualization: all, Data curation: CVM, EdV and JAC, Formal analysis: all, Funding acquisition: all, Investigation: all, methodology: all, Project administration: EdV and JR, Resources: EdV and JR, Supervision – EdV, JR and JAC, Validation: all, Visualization: CVM and JAC, Writing – original draft: All, Writing – review and editing: all. Acknowledgements: We sincerely thank the participants of the Colibrí Project across Colombia for generously sharing their experiences and perspectives. Authors' information: Cindy V. Mendieta: https://orcid.org/0000-0001-9536-586X Esther de Vries: https://orcid.org/0000-0002-5560-2258 Jose A. Calvache: https://orcid.org/0000-0001-9421-3717 Sam H. Ahmedzai: https://orcid.org/0000-0002-2028-8510 Gillian Prue: https://orcid.org/0000-0003-2198-3731 Joanne Reid: https://orcid.org/0000-0001-5820-862X References Ministerio de Salud y Protección Social, Instituto de Evaluación Tecnológica en Salud. https://www.minsalud.gov.co/sites/rid/Lists/BibliotecaDigital/RIDE/DE/CA/gpc-completa-cuidados-paliativos-adopcion.pdf. 2016. p. 1–412 Guía de Práctica Clínica para la atención de pacientes en Cuidado Paliativo (adopción). Davis M, Pennell N. The Role of Palliative Care in Lung Cancer. In: IASLC Thoracic Oncology. Elsevier; 2018. p. 608-619.e8. Ahmed N, Ahmedzai SH, Collins K, Noble B. Holistic assessment of supportive and palliative care needs: the evidence for routine systematic questioning. BMJ Support Palliat Care. 2014 Sep;4(3):238–46. 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Translation, Cross-Cultural Adaptation, and Validation of Measurement Instruments: A Practical Guideline for Novice Researchers. J Multidiscip Healthc. 2024 May;Volume 17:2701–28. Comisión de la Verdad. Hay futuro si hay verdad : Informe Final de la Comisión para el Esclarecimiento de la Verdad, la Convivencia y la No Repetición. 1st ed. Bogotá; 2022. 1–200 p. Sánchez-Cárdenas MA, León MX, Rodríguez-Campos LF, Vargas-Escobar LM, Cabezas L, Tamayo-Díaz JP, et al. Accessibility to palliative care services in Colombia: an analysis of geographic disparities. BMC Public Health. 2024 Jun 21;24(1):1659. Pergolizzi J, LeQuang JAK, Wagner M, Varrassi G. Challenges in Palliative Care in Latin America: A Narrative Review. Cureus. 2024 May 20; Maffoni M, Argentero P, Giorgi I, Hynes J, Giardini A. Healthcare professionals’ moral distress in adult palliative care: a systematic review. BMJ Support Palliat Care. 2019 Sep;9(3):245–54. Dionne-Odom JN, Ornstein KA, Kent EE. What do family caregivers know about palliative care? Results from a national survey. Palliat Support Care. 2019 Dec 8;17(6):643–9. Asociación Cuidados Paliativos de Colombia. https://hdl.handle.net/20.500.12495/13445. 2022. Construyendo un entorno positivo para los cuidados paliativos en Colombia: Plan Nacional de cuidados Paliativos 2022-2026. McConnell T, Mendieta C V., de Vries E, Calvache JA, Prue G, Ahmedzai S, et al. Developing research priorities for palliative care in Colombia: a priority setting partnership approach. BMC Palliat Care. 2024 Aug 1;23(1):194. Additional Declarations The authors declare no competing interests. Supplementary Files V2Additionalfile.docx Supplementary Files Cite Share Download PDF Status: Posted Version 1 posted You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. As a division of Research Square Company, we’re committed to making research communication faster, fairer, and more useful. We do this by developing innovative software and high quality services for the global research community. Our growing team is made up of researchers and industry professionals working together to solve the most critical problems facing scientific publishing. Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-8703055","acceptedTermsAndConditions":true,"allowDirectSubmit":true,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":580712767,"identity":"c045049d-0f73-4926-b832-b4b95a1da276","order_by":0,"name":"Cindy V. 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PhD Program in Clinical Epidemiology, Department of Clinical Epidemiology and Biostatistics, Faculty of Medicine, Pontificia Universidad Javeriana, Bogotá, Colombia. 2.\tDepartment of Collective Health Nursing, Faculty of Nursing, Pontificia Universidad Javeriana, Bogotá, Colombia. 3.\tDepartment of Nutrition and Biochemistry, Faculty of Science, Pontificia Universidad Javeriana, Bogota, Colombia.","correspondingAuthor":false,"prefix":"","firstName":"Cindy","middleName":"V.","lastName":"Mendieta","suffix":""},{"id":580713883,"identity":"7372f1e8-20f9-44f8-8006-2f060b171a48","order_by":1,"name":"Esther de Vries","email":"","orcid":"https://orcid.org/0000-0002-5560-2258","institution":"4.\tDepartment of Clinical Epidemiology and Biostatistics, Faculty of Medicine, Pontificia Universidad Javeriana, Bogota, Colombia. 5.\tSchool of Nursing and Midwifery Queen's University Belfast, Belfast, UK.","correspondingAuthor":false,"prefix":"","firstName":"Esther","middleName":"","lastName":"de Vries","suffix":""},{"id":580713884,"identity":"ebec1eee-3705-46d1-ab5b-347c167a2cb4","order_by":2,"name":"Jose A Calvache","email":"data:image/png;base64,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","orcid":"https://orcid.org/0000-0001-9421-3717","institution":"6.\tDepartment of Anesthesiology, Faculty of Health Sciences, Universidad del Cauca, Popayan, Colombia. 7.\tDepartment of Anesthesiology, Erasmus University Medical Center Rotterdam, Rotterdam, The Netherlands.","correspondingAuthor":true,"prefix":"","firstName":"Jose","middleName":"A","lastName":"Calvache","suffix":""},{"id":580713885,"identity":"f0ea3dc1-ed75-4f9a-968a-803c8798c245","order_by":3,"name":"Sam H. 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Holistic needs assessment (HNA) in PC involves recognising any changes or abnormalities including and beyond the physical and psychological levels that may affect the overall health, general wellbeing or quality of life of an individual and their family. Thus, HNA encompasses the identification of physical, emotional, spiritual, environmental, social, sexual, financial and cultural needs (\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eIn Latin America in 2020, an estimated 1,562 PC teams were available. A team is composed of medical and/or nursing staff where at least one member of the team is trained in PC. Extended teams may include psychology, physiotherapy, social work and chaplaincy (\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e). PC provision was highest in Uruguay (24.5 teams per million), followed by Costa Rica and Chile (\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e). Of these, 75% of the teams were based in hospital settings (\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e). Five Latin American countries -Costa Rica, Chile, Mexico, Colombia, and Peru- have established national legislation on PC (\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e). In Colombia, according to the Colombian Palliative Care Observatory, 39% of the chronically ill Colombian population could have PC needs and approximately three out of ten people died while waiting for PC (\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e). Multiple barriers contribute to the poor access to PC, including limited availability of PC services in some areas, lack of awareness and taboos regarding PC among different stakeholders (policymakers, health professionals, general public), myths, cultural and social barriers framed by beliefs about death, concept of a \u0026lsquo;good death\u0026rsquo;, and the potential for opioid misuse (\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e). In addition, healthcare professionals describe difficulties in conducting HNA early enough, contributing to patients accessing PC very late - at the end of life or in very advanced stages of their disease (\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eTo date, only three tools for assessing holistic needs in PC have undergone validation in Colombia (\u003cspan additionalcitationids=\"CR9 CR10\" citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e), among which the Sheffield Profile for Assessment and Referral to Care (SPARC) currently has the most comprehensive evaluation of reliability and validity evidence, including linguistic, cross-cultural, content, internal structure, criterion, and construct validity (\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e, \u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e). SPARC is a UK instrument (\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e) for holistic needs identification validated in Poland (\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e), Korea (\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e, \u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e), Taiwan (\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e), and in the Colombian context as SPARC-Sp (\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e, \u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e). SPARC-Sp is designed to be a self-administered instrument with eight domains and 56 questions (\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e, \u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e). However, during its initial validation (\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e, \u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e) several opportunities were identified for local improvement, given the difficulty in understanding some concepts and the impossibility of self-administration for the relatively large part of the Colombian population with low educational levels (\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e). This research aimed to resolve those issues by designing, culturally adapting, and validating the content of the SPARC-Sp-Col instrument for assessing holistic needs in Colombian patients with chronic diseases including cancer from rural and urban areas.\u003c/p\u003e"},{"header":"Methods","content":"\u003cp\u003e\u003cstrong\u003eSPARC-Sp Instrument:\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eSPARC-Sp is a self-administered instrument with eight domains: communication and information (7 questions); physical symptoms (21 questions); psychological (9 questions); religious and spiritual (2 questions); independence and activity (3 questions); family and social life (4 questions); treatment (2 questions); and personal issues (3 questions) making a total of 56 questions. From the total, four questions are dichotomous (yes/no). The remaining questions have a four-point Likert scale with labels of \u0026quot;not at all\u0026rdquo; [score of 0], \u0026ldquo;a little\u0026rdquo; [score of 1], \u0026ldquo;quite a bit\u0026rdquo; [score of 2], and \u0026ldquo;a lot\u0026rdquo; [score of 3]\u0026quot; (11). A score of three is an indication that the patient has a significant PC need (11). In addition, two open-ended questions are included to probe for additional concerns and worries (11).\u003c/p\u003e\n\u003cp\u003eThis study was grounded in a social constructivist paradigm, whereby participants actively and iteratively contributed to the co-construction of knowledge, influenced by social and cultural contexts (18). Figure 1 illustrates the processes carried out for the methodological conduct of the research presented within this paper, following the guidelines of the Consolidated Criteria for Reporting Qualitative Research (COREQ) (Additional file 1) (19), together with the dates and the number of participants. Each of the 5 steps presented are described in the following sections.\u003c/p\u003e\n\u003cul\u003e\n \u003cli\u003e\u003cstrong\u003eStep 1: Preliminary adaptation of SPARC-Sp-Col:\u003c/strong\u003e\u003c/li\u003e\n\u003c/ul\u003e\n\u003cp\u003eThe first step (January 2024) aimed to identify the preliminary adaptations required to make SPARC-Sp an easy-to-understand instrument for Colombian patients with chronic diseases including cancer and low to moderate literacy skills. SPARC-Sp has a final open-ended question asking patients if they have any holistic care needs that are not covered by the previous questions of the instrument (12). Based on the findings of the original SPARC-Sp validation of this open-ended question (12), we conducted a thematic analysis to identify the main categories not covered by SPARC-Sp-Col. From this analysis the following were found to be relevant within Colombia but missing from SPARC-Sp: social and geographical barriers; economic and legal issues; health system barriers; occupation; and violence and insecurity (21).\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eSocial and geographical barriers encompassed difficulties in mobility to access health centres; economic and legal issues referred to difficulties in accessing pensions, or the insurmountable challenge of settling financial debts and the requirement of legal procedures; health system barriers included lack of access to health services, referrals and medical appointment requirements; occupation referred to unemployment and difficulty in returning to work; and violence and insecurity comprised armed conflict, food and nutrition insecurity and sexual abuse (21). A deductive analysis following the steps established by Fife et al., (22) \u0026nbsp;was carried out to identify: (i) modification of words to enhance understanding; (ii) new items that responded to eight domains contemplated in the original version of SPARC-Sp; and (iii) new items that represented unmet needs related to the Colombian context (Colombian Module for SPARC-Sp).\u0026nbsp;\u003c/p\u003e\n\u003cul\u003e\n \u003cli\u003e\u003cstrong\u003eStep 2: Online peer evaluation:\u003c/strong\u003e\u003c/li\u003e\n\u003c/ul\u003e\n\u003cp\u003eThe second step (May \u0026nbsp; 2024) aimed to assess the relevance and understanding of the modifications and additions made to SPARC-Sp (SPARC-Sp-Col). The preliminary prototype of SPARC-Sp-Col was drafted into an online Microsoft Forms file (23). \u0026nbsp;This online version included the items accompanied by questions about their relevance (Likert scale: 0 \u0026ndash; Not relevant to 5- Highly relevant) and comprehensibility (yes/no) of items added (n=18) or reworded (n=15) with the possibility to suggest further changes. The questionnaire was sent via email to potential participants and was returned anonymously.\u003c/p\u003e\n\u003cp\u003ePotential participants included allied and social healthcare professionals and spiritual advisors from rural and urban areas of Colombia with cancer expertise and who had participated in a previous multidisciplinary research project on PC in Colombia (24). In June 2024, these potential participants (N=62) were invited through social networks and email, of which 29 agreed to participate (47% response). Previous works suggests that the recommended sample size requirement for this type of study is 15 - 30 persons (25).\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eWe conducted a thematic analysis on the data obtained from this Microsoft Forms following the methodology described by Fife et al., which encompasses the development of the research question, operationalisation of theory, purposive sampling, coding and analysis, and theorization (26). We evaluate comprehensibility and relevance and estimated the Aiken V Coefficient to determine the proportion of participants who had a positive evaluation of the proposed SPARC-Sp-Col items (27) using R Studio 4.3.3 (28). The open-ended questions were analysed through a thematic analysis by CVM, supervised by EdV and JAC (10).\u003c/p\u003e\n\u003cul\u003e\n \u003cli\u003e\u003cstrong\u003eStep 3: Integration and evaluation\u0026nbsp;\u003c/strong\u003e\u003c/li\u003e\n\u003c/ul\u003e\n\u003cp\u003eIn the third step (August 2024) we evaluated the semantic equivalence of SPARC-Sp-Col (step 2) through the judgement of experts, defined as those with experience with the assessment instrument (SPARC-Sp) (29). This process involved feedback from bilingual experts and the multidisciplinary team of researchers in charge of the field application of the original version of SPARC-Sp. We also determined the comprehensibility and relevance of new items by researchers with experience in PC in Colombia and the application of SPARC-Sp.\u003c/p\u003e\n\u003cp\u003eTwo bilingual researchers (CVM and EdV), with good fluency in Spanish and English, translated the version resulting from step 2 to English for the native English-speaking researchers to review the changes made (GP, JR and, SHA) following the ISPOR good practice guidelines for the translation and cultural adaptation of patient-reported outcome measures\u0026nbsp;(30). This translation sought a conceptual, social and cultural equivalence rather than a literal translation, as the English version will not be used in practice (31). Moreover, some of the new questions for Colombian people would not have resonance in the British health and social care context due to differences in the functioning of the health system and linguistic variations, particularly in the use of colloquial expressions. The translated version was provided in an online Microsoft Forms document where the UK experts (GP, JR and, SHA -original developer of SPARC) (3) evaluated the relevance of the new items (Likert scale: 0 \u0026ndash; Not relevant to 5- Highly relevant) and had the possibility to suggest modifications. These suggested modifications were translated into Spanish by CVM under the supervision of EdV and were consolidated in a final report that featured the final version of SPARC-Sp-Col in Spanish and English. Discrepancies were resolved through an online meeting via Microsoft Teams with the Colombian (CVM, EdV, JAC) and UK (GP, JR and, SHA) research team members.\u003c/p\u003e\n\u003cp\u003eThis revised version of SPARC-Sp-Col was presented to four multidisciplinary researchers with experience in the application of original SPARC-Sp in Colombia and three researchers with PC experience to determine the comprehensibility of the items and the relevance of the new additions to the original instrument. Participants completed an anonymous evaluation through an online form that was subject to thematic analysis.\u003c/p\u003e\n\u003cul\u003e\n \u003cli\u003e\u003cstrong\u003eStep 4: Cognitive interviews\u003c/strong\u003e\u003c/li\u003e\n\u003c/ul\u003e\n\u003cp\u003eStep 4 (September 2024) aimed to consolidate previous phases of the study through the assessment of acceptability, relevance, comprehensibility and completeness of SPARC-Sp-Col from the patients\u0026apos; and carers\u0026rsquo; perspective. A paper copy of the version of SPARC-Sp-Col produced in step 3 was presented in five cognitive interviews to assess the acceptability, relevance, comprehensibility and completeness of the modifications made and the new items. Eligibility criteria for these cognitive interviews were Colombian adults (\u0026gt; 18 years old), who would be available for an interview of approximately 90 minutes and who would agree to participate. This sample size was based on the standards for content validity established by COSMIN (COnsensus-based Standards for the selection of health Measurement Instruments) (32). Participants (Additional file 2) were selected through purposive sampling (26) with the aim of including diversity of gender, age, geographic location and educational level, from the contact list of participants of the previous project and through the networks of the principal investigators following the eligibility criteria.\u003c/p\u003e\n\u003cp\u003eThe interviews were conducted face-to-face by CVM in private classrooms at the University or at the participants\u0026apos; homes and were recorded and transcribed verbatim, after which a thematic analysis was carried out (22). The findings were integrated into a report, translated and back-translated for presentation and discussion with the research team including the original SPARC developer (SHA).\u003c/p\u003e\n\u003cul\u003e\n \u003cli\u003e\u003cstrong\u003eStep 5: Focus group with discussions\u0026nbsp;\u003c/strong\u003e\u003c/li\u003e\n\u003c/ul\u003e\n\u003cp\u003eStep 5 (November 2024) aimed to determine the usefulness, difficulties, facilitators and perspectives on the use of SPARC-Sp-Col including the hypothetical needs assessment summary which includes a synthesis of the main needs identified by SPARC-Sp-Col. We conducted four focus groups: 2 in Bogota, which is the capital city and a very urbanized area; and 2 in Popayan, which is a small city in a largely rural, relatively poor region. In each area one focus group was conducted with healthcare professionals and allied healthcare professionals and another with patients with chronic diseases and carers of such patients, including cancer patients and carers. The participants in these groups came from both urban and rural areas and represented diversity in perspectives and experiences that enriched the discussions and outcomes of the focus groups. Participants were patients with chronic diseases, carers and allied and social healthcare professionals from rural and urban areas of Colombia. We excluded patients who were hospitalised or unable to communicate due to the methodological conduct of this phase of the research. \u0026nbsp;Purposive sampling was applied, where participants were invited through social networks of the previous project (26). We planned to include approximately seven people per focus group, seeking diversity in background, gender and age (26).\u003c/p\u003e\n\u003cp\u003eEach focus group lasted approximately two hours and included a video presentation of SPARC-Sp in Spanish, designed specifically for the group of participants taking part in the activity (patients vs. healthcare professionals) (24). A printed version of SPARC-Sp-Col was given to each participant. Participants were given the instruction to read SPARC-Sp-Col carefully, and if they so desired, they could complete it. Accompanying the paper version, we presented a fictitious but realistic example of a needs assessment recorded using SPARC-Sp-Col, based on a hypothetical patient (Additional file 3).\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eEach group was facilitated by a researcher (CVM, EdV, JAC) who oversaw and guided the discussions. During the focus groups, sticky notes were provided so that participants could record their ideas directly onto these, and a participant-moderator from each group was invited to share them and the main findings of their group to the other groups. The interviews were conducted at the university (Bogota) or at a partner institution in the rural area (Popayan).\u003c/p\u003e\n\u003cp\u003eFocus group were audio-recorded and transcribed verbatim. Analysis was carried out at the culmination of each focus group, with CVM and EdV conducting a thematic deductive analysis following the processes established by Fife et al. (22). The main categories were discussed, and tiebreakers were resolved by a third researcher (JAC) by consensus. The results were translated into English by a bilingual researcher (CVM) and compiled into a report to a panel of experts in the UK including the original developer of SPARC for further discussion.\u003c/p\u003e"},{"header":"Results","content":"\u003cdiv id=\"Sec10\" class=\"Section2\"\u003e \u003ch2\u003e\u0026bull; Step 1: Preliminary adaptation of SPARC-Sp-Col:\u003c/h2\u003e \u003cp\u003eBased on the observations identified in the previous validation of SPARC-Sp-Col (\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e, \u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e), we identified: (i) modification of words to enhance understanding; ii) new items that responded to eight domains of the original version of SPARC-Sp; and (iii) new items that represented unmet needs related to the Colombian context (Colombian Module for SPARC-Sp). We modified 17 items in the domains of communication and information, physical symptoms, psychological, religious and spiritual issues and personal matters of SPARC-Sp (Table\u0026nbsp;\u003cspan refid=\"Tab1\" class=\"InternalRef\"\u003e1\u003c/span\u003e). Moreover, we identified 10 potential new items that could complement seven of the original eight domains of SPARC-Sp and we created the Colombian module for SPARC-Sp which seven new items related to housing characteristics, armed conflict, lack of a caregiver, difficulty in seeking medical appointments, accessing treatment, medicines or other services, bearing the cost of treatment or medicines, and the requirement to travel to other places to receive care (Table\u0026nbsp;\u003cspan refid=\"Tab1\" class=\"InternalRef\"\u003e1\u003c/span\u003e).\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab1\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 1\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eModifications and additions to items during the five steps\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"9\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c4\" colnum=\"4\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c5\" colnum=\"5\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c6\" colnum=\"6\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c7\" colnum=\"7\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c8\" colnum=\"8\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c9\" colnum=\"9\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\" morerows=\"1\" rowspan=\"2\"\u003e \u003cp\u003eDomain\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colspan=\"2\" nameend=\"c3\" namest=\"c2\"\u003e \u003cp\u003eItems\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colspan=\"5\" nameend=\"c8\" namest=\"c4\"\u003e \u003cp\u003eSteps where the item were modified\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c9\" morerows=\"1\" rowspan=\"2\"\u003e \u003cp\u003eType of modification\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003eOriginal version\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c3\"\u003e \u003cp\u003eFinal version\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c4\"\u003e \u003cp\u003e1\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c5\"\u003e \u003cp\u003e2\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c6\"\u003e \u003cp\u003e3\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c7\"\u003e \u003cp\u003e4\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c8\"\u003e \u003cp\u003e5\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\" morerows=\"2\" rowspan=\"3\"\u003e \u003cp\u003eComunication and information\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eOther people (please state)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eOther persons, services, programmes or support groups (which ones):\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eX\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eX\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003eImprove clarity\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e* Do you feel that you are not being told the truth about your situation or illness?\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eDo you feel that you have all the information you need about your health situation or illness?\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eX\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eX\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eX\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003eUse softer and non-judgmental wording\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e* Have you been afraid to talk about your health situation or illness?\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eHave you been afraid to talk about your situation or illness?\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eX\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eX\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003eImprove holistic needs assessment\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\" morerows=\"10\" rowspan=\"11\"\u003e \u003cp\u003ePhysical symptoms\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eFeeling sick (nausea)?\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eFeeling /sick/ (nausea)?\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eX\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003eImprove clarity\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eBeing sick (vomiting)?\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eBeing /sick/ (vomiting)?\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eX\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003eImprove clarity\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eBowel problems (eg constipation, diarrhoea o incontinence)?\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eIntestinal disturbances (e.g. constipation, diarrhoea, loose or stomach damaged)?\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eX\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eX\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003eImprove clarity\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eBladder problems (urinary incontinence)?\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eHaving pain when urinating, bleeding when urinating, itching, urinary incontinence or leaking urine when not in the toilet?\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eX\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eX\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eX\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003eImprove clarity\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eProblems sleeping at night?\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eHaving difficulty falling asleep or waking up many times during the night?\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eX\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eX\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003eImprove clarity\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eProblems with swallowing?\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eDifficulty swallowing or passing food or drink?\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eX\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003eImprove clarity\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eBeing concerned about changes in your appearance?\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eBecause of changes in their physique?\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eX\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003eImprove clarity\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eFeeling that your symptoms are not controlled?\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eFeeling that your ailments or discomforts have not been controlled?\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eX\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003eImprove clarity\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e*Feeling changes in your vision?\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eFeeling changes in your vision?\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eX\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eX\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eX\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003eImprove clarity and holistic needs assessment \u0026ndash; Small changes in the Spanish wording\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e*Feeling changes in your hearing?\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eFeeling changes in your hearing?\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eX\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eX\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eX\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003eImprove clarity and holistic needs assessment\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e* Feeling that you are retaining fluids?\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eDo you have swelling in your feet or legs?\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eX\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eX\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eX\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003eImprove clarity\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\" morerows=\"4\" rowspan=\"5\"\u003e \u003cp\u003ePsychological issues\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eFeeling anxious?\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eFeeling uneasy, brooding or anxious?\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eX\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003eImprove clarity\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eFeeling confused?\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eFeeling confused (not understanding what is going on)?\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eX\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eX\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003eImprove clarity\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eFeeling unable to conc\u0026eacute;ntrate?\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eHaving difficulty concentrating or feeling distracted?\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eX\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eX\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003eImprove clarity\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eThe effect of your condition on your sexual life?\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eChanges in your sexual life?\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eX\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003eImprove wording in Spanish\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e*Having thoughts that keep you awake at night?\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eHaving thoughts, torments or anxieties that keep you awake at night?\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eX\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eX\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eX\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eX\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003eImprove clarity\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\" morerows=\"1\" rowspan=\"2\"\u003e \u003cp\u003eReligious and spiritual issues\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eReligious or spiritual needs not being met?\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eNeed help on a religious or spiritual level and do not receive it?\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eX\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eX\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003eImproving clarity\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e*Feel that you need help to make amends or reconcile with someone?\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eFeeling that you need to make amends or reconcile with someone?\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eX\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eX\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eX\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eX\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003eImproving holistic needs assessment\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eIndependence and activity\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e* Losing your independence to make decisions about your life and health situation?\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eFeeling unable to make decisions about your life or health situation?\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eX\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eX\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eX\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eX\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003eUse softer and non-judgmental wording\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eFamily and Social issues\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e*Feeling that your family treats you as if you are not going to get better?\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eFeeling that your family thinks differently than you do about your health situation or illness?\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eX\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eX\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eX\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003eUse softer and non-judgmental wording\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\" morerows=\"3\" rowspan=\"4\"\u003e \u003cp\u003ePersonal issues\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eDo you need any help with your personal affairs?\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eDo you need help with personal matters (paperwork, legal issues, debts, etc.)?\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eX\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003eImprove clarity\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eFinancial issues\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eMoney issues\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eX\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003eImprove clarity\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eOther (please state)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eOther types of support (education, work, psychology, exercise, therapies, food, communication, etc.).\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eX\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eX\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eX\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003eImprove clarity\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e* Do you need help with accessing a disability or retirement pension?\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eDo you need help to receive a disability pension?\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eX\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eX\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eX\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003eImprove clarity\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\" morerows=\"4\" rowspan=\"5\"\u003e \u003cp\u003eColombian module\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e* Feeling that health staff do not take into account your living situation (transport, condition of the house, money issues, armed conflict, caregivers)?\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eFeeling that your current living situation or conditions (transport, features of your home - e.g. having to climb stairs, money matters, armed conflict, lack of a caregiver) are not taken into account by health care staff?\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eX\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eX\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eX\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003eImprove clarity\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e*Having difficulty in meeting with health professionals (problems with appointments, authorisations, continuity)?\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eHaving difficulty in meeting with health professionals (problems with appointments, authorisations, continuity of care, etc.)?\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eX\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eX\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003eImprove clarity\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e* Access to treatment or other services?\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eBe able to demand or follow up on treatment, medicines or other services?\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eX\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eX\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eX\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003eImprove clarity\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e* The costs of your treatment or medication?\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eThe price of your treatment or medication?\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eX\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eX\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eX\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003eImprove clarity\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e* Displacement to other places for care?\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eTravel to other places for care?\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eX\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eX\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eX\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003eUse softer and non-judgmental wording and avoid confusion\u003csup\u003e%\u003c/sup\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cp\u003e* New questions added to SPARC-Sp-Col, where the original version corresponds to the first version of each question. \u003csup\u003e%\u003c/sup\u003e The word \u0026ldquo;displacement\u0026rdquo; in Colombia is usually interpreted as being forcibly displaced because of the armed conflict.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec11\" class=\"Section2\"\u003e \u003ch2\u003e\u0026bull; Step 2: Online peer evaluation:\u003c/h2\u003e \u003cp\u003eThe new version of SPARC-Sp that emerged from step 1 (SPARC-Sp-Col) was evaluated by 29 allied and social health professionals working in both rural and urban areas of Colombia (5 general practitioners; 7 medical specialists; 7 nurses; 1 occupational therapist; 1 dietitian; 1 speech therapist, 2 psychologists; 5 spiritual or religious counsellors). Participants were provided with a structured online form where they could rate the acceptability of each of the items and justify the answer behind their choice. The average response time was 40.19 minutes. Most of the modifications made to SPARC-Sp-Col were widely accepted by the participants (Additional file 4). However, some questions had a lower acceptance due to the difficulty in understanding terms such as \u0026lsquo;appearance\u0026rsquo; and \u0026lsquo;anxiety\u0026rsquo;. Therefore, we identified synonyms or used colloquial terms which were easier to understand.\u003c/p\u003e \u003cp\u003eFor the evaluation of the relevance of the new items added to the pre-existing SPARC-Sp-Col domains we applied a Likert scale (5: very relevant to 0: not relevant) which allowed the estimation of the Aiken V coefficient. All new questions \u0026ndash; including the Colombian module were relevant according to Aiken's V coefficient (\u0026gt;\u0026thinsp;0.5) (Additional file 5), showing that each question represents adequately the content domain to which it belongs. However, despite the relevance of the last question (Requesting medical appointments), participants felt that it could be implied in other questions in this module, so it was removed.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec12\" class=\"Section2\"\u003e \u003ch2\u003e\u0026bull; Step 3: Integration and evaluation:\u003c/h2\u003e \u003cp\u003e Four researchers with experience in the application of original SPARC-Sp in Colombia (2 anaesthesiologists, 1 palliative care nurse, 1 rural physicians) and three researchers with PC experience (1: medical epidemiologist, 1: psychologist and 1: nurse) reviewed the modifications and additions to the questions. Based on their feedback, we presented two versions of the 17 questions (the first one kept the original version, and the second one was constructed with the feedback given by the participants). These two options were presented to a panel of seven experts with backgrounds in clinical epidemiology, psychology or PC who selected one of the options as their preferred version and had the option to modify or suggest further adjustments (Additional file 6).\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec13\" class=\"Section2\"\u003e \u003ch2\u003e\u0026bull; Step 4: Cognitive interviews\u003c/h2\u003e \u003cp\u003eFive cognitive interviews were conducted with participants including people of different ages, backgrounds, occupations, educational levels (Additional file 2). Cognitive interviews were used to assess comprehensibility, difficulty of terms and wording. Feedback from participants identified colloquial terms to exemplify a need (e.g. stomach bug - \u0026lsquo;soltura\u0026rsquo;), identified synonyms, problems in wording or culturally sensitive terms (e.g. displacement, as a synonym for forced displacement and not a travel to another destination to receive healthcare attention) (Table\u0026nbsp;\u003cspan refid=\"Tab2\" class=\"InternalRef\"\u003e2\u003c/span\u003e).\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab2\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 2\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eModifications of the items according to cognitive interviews.\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"3\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eDomain\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003eItem\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c3\"\u003e \u003cp\u003eComments\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\" morerows=\"3\" rowspan=\"4\"\u003e \u003cp\u003ePhysicial symptoms\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eBowel problems (eg: constipation, diarrhoea or \"stomach damage\"\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eThe use of \u0026ldquo;soltura\u0026rdquo; \u0026ndash; \u0026ldquo;stomach/stomach bug\u0026rdquo; is suggested as a more colloquial way of giving a description.\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eLeaking urine?\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eWe add these terms suggested by the participants as more colloquial ways of exemplifying the construct to be assessed\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eProblems with swallowing?\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e\u0026ldquo;Swallowing\u0026rdquo; was a very difficult term for participants to understand, so we used a more colloquial term and added the example of passing food or drink.\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eFeeling that you are retaining fluids?\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e\u0026ldquo;\u0026lsquo;Fluid retention\u0026rdquo; was not clear to all participants.\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\" morerows=\"1\" rowspan=\"2\"\u003e \u003cp\u003ePsychological issues\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eThe effect of your condition on your sexual life?\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eAlthough the original version was clear, it was not well drafted in Spanish. It certainly did not match with the original instruction of the question\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eHaving thoughts that keep you awake at night?\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eParticipants suggested more colloquial terms such as \u0026ldquo;torments\u0026rsquo;\u0026rdquo; or \u0026ldquo;anxieties\u0026rdquo; are very Colombian ways of explaining that a thought resonates a lot in your head.\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eReligious and spiritual issues\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eFeel that you need help to make amends or reconcile with someone?\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eThe wording was changed to improve cohesion with the introduction of the Spanish question.\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eIndependence and activity\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eNot being able to make decisions about your life or health situation?\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eThe wording was changed to avoid the inclusion of negative words that could cause confusion for the participant.\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003ePersonal issues\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eOther types of support (occupational, psychological, therapeutic, nutrition and food, leisure and free time, recreational activities-recreation and sport)?\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eGiving examples helped participants to better understand the question. We also had to change words perceived as difficult for participants such as physiotherapy or rehabilitation to exercise and therapies.\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\" morerows=\"3\" rowspan=\"4\"\u003e \u003cp\u003eColombian module\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eFeeling that health staff do not take into account your living situation (transport, condition of the house, money issues, armed conflict, caregivers)?\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eSome participants found it strange that we asked this question, because they do not consider it the duty of health staff to analyse these factors. However, all perceived it to be a relevant question. For clarity, it was suggested that we clarify what we meant by features of your home and the term caregivers.\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eContinuity of your treatment or medication?\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eParticipants suggested the change of \u0026ldquo;continuity\u0026rdquo; as it is a very complex word.\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eThe costs of your treatment or medication?\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eParticipants suggested an even more colloquial way of asking about cost.\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eDisplacement to other places for care?\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eThe word \u0026ldquo;displacement\u0026rdquo; was difficult to understand and often misinterpreted as in Colombia it is often used to refer to forced displacement because of the armed conflict. Participants suggested to us a much simpler and clearer form\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec14\" class=\"Section2\"\u003e \u003ch2\u003e\u0026bull; Step 5: Focus group with discussions\u003c/h2\u003e \u003cp\u003eWe conducted four focus groups in November 2024 with a total of 38 participants including healthcare professionals, caregivers and patients from Bogota and Popayan. Characteristics of the participants are described in Additional file 7. Following the deductive analysis (\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e), we established some main categories: (i) Extension and application of SPARC-Sp-Col, (ii) Frequency of use and timing of application, (iii) Summary of needs, (iv) Other suggested modifications for SPARC-Sp-Col, (v) Barriers and (vi) Colombian module. The practical recommendations for the implementation and use of SPARC-Sp-Col according to these stakeholders are described in Table\u0026nbsp;\u003cspan refid=\"Tab3\" class=\"InternalRef\"\u003e3\u003c/span\u003e. The final version of SPARC-Sp-Col can be consulted in the data in the Additional file 8.\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab3\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 3\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003ePractical recommendations for the implementation and use of SPARC-Sp-Col according to stakeholders\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"4\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c4\" colnum=\"4\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eCharacteristics\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003eProfessionals\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c3\"\u003e \u003cp\u003ePatients\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c4\"\u003e \u003cp\u003eCaregivers\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\" morerows=\"1\" rowspan=\"2\"\u003e \u003cp\u003e\u003cb\u003eExtension and application of SPARC-Sp-Col\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eConsider the extensive length of SPARC-Sp-Col and the potential difficulties in clinical contexts with a high number of patients.\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c4\" namest=\"c3\"\u003e \u003cp\u003eExpress that the length does not necessarily constitute a barrier for them to completing it.\u003c/p\u003e \u003cp\u003eAcknowledge that it allows a more personalized and individual assessment of needs and care planning.\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eRecommend independent administration, without presence or help from relatives or caregivers\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003ePrefer self-administration or a facilitator for older adults or individuals with limited literacy skills, different to caregiver.\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eSuggest caregivers answer it together with the patient, given their closeness, knowledge, and ability to support potential functional limitations.\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eFrequency of use and timing of application\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colspan=\"3\" nameend=\"c4\" namest=\"c2\"\u003e \u003cp\u003eAll propose multiple moments or settings for administration: at diagnosis, prior to medical or specialist consultation, and in waiting rooms or inpatient care during follow-up.\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eSummary of needs\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colspan=\"3\" nameend=\"c4\" namest=\"c2\"\u003e \u003cp\u003eAll recommend sharing the synthesis of needs identified and their priority by SPARC-Sp-Col with healthcare staff, caregivers, or family members.\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eOther considerations\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colspan=\"3\" nameend=\"c4\" namest=\"c2\"\u003e \u003cp\u003eSuggest modifications in response options: replacing \u0026ldquo;quite a bit/bastante\u0026rdquo; and \u0026ldquo;very much/mucho\u0026rdquo; with \u0026ldquo;mucho\u0026rdquo; and \u0026ldquo;much\u0026iacute;simo\u0026rdquo;; use of color codes (similar to traffic lights) for response options.\u003c/p\u003e \u003cp\u003eRecommend the use of SPARC-Sp with the inclusion of the Colombian module (SPARC-Sp-Col).\u003c/p\u003e \u003cp\u003ePropose future adaptations to indigenous languages and Braille.\u003c/p\u003e \u003cp\u003eHighlight the need to consider the stress experienced by healthcare staff, patients, and caregivers when addressing needs related to structural determinants.\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec15\" class=\"Section2\"\u003e \u003ch2\u003eExtension and application of SPARC-Sp-Col\u003c/h2\u003e \u003cp\u003eSPARC-Sp-Col was perceived by health professionals as a lengthy instrument, possibly tedious to answer. For these reasons, the professionals expressed concerns regarding its applicability in high patient volume clinical settings. The patient\u0026rsquo;s perspective concurred that the instrument was lengthy but expressed that in their current situation and life condition, time had a different meaning, and that the length would not be an impediment for them to use the tool. They highlighted that the Colombian module allowed for a more comprehensive and patient-centred self-care needs assessment.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003eThe only disadvantage would be that the consultation could take a little longer, especially in clinics where there is a high volume of patients (Male, Dentist, periodontics specialist, Popayan).\u003c/em\u003e \u003c/p\u003e\u003cp\u003e \u003cem\u003eThat's another thing you learn with time. Dedicating time to oneself (Male, Patient, Popayan).\u003c/em\u003e \u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eThere was a range of views about the application of SPARC-Sp-Col, with practitioners suggesting that it should be applied independently by the patient, without the need for help from their family member or caregiver, to avoid biasing their responses.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003eThe relative sometimes says: -\u0026ldquo;no, if he is suffering a lot\u0026rdquo;- and the relative begins to fill out the forms (...) \u0026ldquo;Yes, I have seen that he is in a lot of pain or that he is sad\u0026rdquo; but perhaps that is not the case (Female, Geriatric resident, Bogot\u0026aacute;).\u003c/em\u003e \u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eHowever, caregivers felt that it was important for them to carry out SPARC-Sp if it is possible together with the patient because of their close relationship with the patient, knowledge of the patient and the difficulty of completing the instrument by patients with more advanced clinical or greater clinical deterioration.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003eIdentify who is the patient and the caregiver; usually it is the caregiver who knows all about the patient (Female, Caregiver, Cauca rural area).\u003c/em\u003e \u003c/p\u003e\u003cp\u003e \u003cem\u003eWe don't know what condition the patient is in. And maybe the caregiver knows everything about the patient, so the caregiver is the one who supports him/her [the patient] in filling out the form (Female, Caregiver, Cauca rural area).\u003c/em\u003e \u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eFrom the patients' perspective, SPARC-Sp-Col was viewed as a very personal instrument, which could help to identify and communicate their own needs. However, patients considered that filling it out may be difficult for certain patients (e.g. older adults, people with low literacy skills) and the support of a facilitator (possibly a family member or caregiver) who can guide its application may be required.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003eIt can be with a family member or sometimes it can be filled out without help, as this tool is a way to let off steam about one's health and to communicate issues with the family (Female, patient and caregiver, from Bogot\u0026aacute;, hospital alliance group).\u003c/em\u003e \u003c/p\u003e\u003cp\u003e \u003cem\u003eThere are people from the villages, there are people from the municipalities, there are people from everywhere, (...) and if someone does not understand, there is the person (facilitator) right there, ready to explain and help them (Female, Patient, Popayan).\u003c/em\u003e \u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec16\" class=\"Section2\"\u003e \u003ch2\u003eFrequency of use and timing of application\u003c/h2\u003e \u003cp\u003eIt was suggested that SPARC-Sp-Col could be applied across a range of settings and time points through a patient\u0026rsquo;s journey. These included: at the time of request for a medical appointment; at diagnosis; prior to the first consultation with the general practitioner or specialist; and in waiting rooms or during hospitalisation.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003eI suggest that a link to fill out SPARC will be given when making an appointment (Female, Caregiver, Cauca Rural Area).\u003c/em\u003e \u003c/p\u003e\u003cp\u003e \u003cem\u003eIn the first consultation, it provides us with a baseline of the patient\u0026rsquo;s situation and provides an idea of which interventions could be good for a patient. Normally, in a consultation, it is very difficult to be able to cover all the items or needs that a patient may present with and scores positive (...) (Female, Doctor, geriatrics resident, Bogot\u0026aacute;).\u003c/em\u003e \u003c/p\u003e\u003cp\u003e \u003cem\u003eSometimes patients are a long time in the hospital and don\u0026acute;t have what to do. I think filling out SPARC could even give them something to do to get out of that little routine a bit and at once provide valuable information (Male, Physician and Clinical Epidemiologist, Bogot\u0026aacute;).\u003c/em\u003e \u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec17\" class=\"Section2\"\u003e \u003ch2\u003eSummary of needs\u003c/h2\u003e \u003cp\u003eParticipants suggested the needs identified by SPARC-Sp-Col could be shared in a needs summary with the healthcare staff, caregivers or family members. This synthesis of needs in a graphical format can be represented as an infographic where it is possible to identify the needs in order of prioritisation for addressing them. Patients, caregivers and healthcare staff considered that this summary of needs could optimise communication and identification of needs, prioritisation of their multidisciplinary approach and reduce delays in appropriate service provision.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003eNot only are they going to see the psychological needs, but with the summary of needs we already know which professional should be following up and accompanying the patient (Female, Psychologist, Popay\u0026aacute;n).\u003c/em\u003e \u003c/p\u003e\u003cp\u003e \u003cem\u003eI think it is a very important tool because the doctor already has good information at a glance, and it would be to ask this [summary of needs]. This is what I see as valuable, given the time, it is very short (according to SPARC-Sp-Col) (Female, Patient, Valle del Cauca).\u003c/em\u003e \u003c/p\u003e\u003cp\u003e \u003cem\u003eThe oncologist does not tell you about your sexual side (...) In other words, you are left with the feeling that you are embarrassed to ask about it and with that trauma (the cancer) (Female, Patient, Santander)\u003c/em\u003e \u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec18\" class=\"Section2\"\u003e \u003ch2\u003eOther suggested modifications for SPARC-Sp-Col\u003c/h2\u003e \u003cp\u003eThere was confusion between the options of \u0026ldquo;quite a bit/bastante\u0026rdquo; and \u0026ldquo;very much/mucho\u0026rdquo;. In the validation phases, we found that depending on the region within Colombia, \u0026ldquo;bastante\u0026rdquo; can be considered as either more or less than \u0026ldquo;mucho\u0026rdquo;, causing confusion for participants to identify the logic in the order of answer options (which was meant to represent the ascending level of difficulties). As a solution, participants suggested using \u0026ldquo;mucho\u0026rdquo; and \u0026ldquo;much\u0026iacute;simo\u0026rdquo; instead of \u0026ldquo;bastante\u0026rdquo;/\u0026rdquo;mucho\u0026rdquo;. \u0026ldquo;Much\u0026iacute;simo\u0026rdquo; represents a more colloquial form and denotes greater intensity or severity. In addition, they suggested using colour coding within the answer options following traffic-light logic (green: \u0026lsquo;no worries or preoccupations\u0026rsquo;, through to red: \u0026lsquo;highest level of worries\u0026rsquo;).\u003c/p\u003e \u003cp\u003eThis idea of colour coding was well received:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003eI'm interested, I would like to have this little piece of paper myself and say \u0026ldquo;yes, Doctor. Look what happened, this came out in red\u0026rdquo; (Female, Patient and caregiver, Bogot\u0026aacute;).\u003c/em\u003e \u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eTo increase the potential use in multiple populations within Colombia, it was suggested to translate and validate Sparc-Sp-Col in indigenous languages such as Misak, Nasa; and also, to have it available in Braille.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec19\" class=\"Section2\"\u003e \u003ch2\u003eBarriers\u003c/h2\u003e \u003cp\u003eHealthcare professionals expressed concern about the type of needs identified in the domains of personal issues (Do you need help to receive a disability pension?), and in the Colombia module of SPARC-Sp-Col, because many needs corresponded to structural determinants that would prove difficult for health workers to address. Participants considered that for SPARC-Sp-Col to be used in clinical practice, multiple actions would be needed, such as: raising awareness of the instrument; dissemination of the instrument; training of healthcare personnel in its use; and design and explanation of the possible care pathways to address the needs identified by SPARC-Sp-Col.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u003cem\u003eWe should have, let's say, a roadmap of who we are going to ask for help so that they can help us to fulfil what we are saying [address the needs](...) We have to really document and know how far we can go as an institution, because otherwise we are going to give the patient hopes that we will not be able to fulfil. (Female, Psychologist, Popay\u0026aacute;n).\u003c/em\u003e\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec20\" class=\"Section2\"\u003e \u003ch2\u003eColombian module\u003c/h2\u003e \u003cp\u003eThe Colombian module was widely accepted by patients and caregivers as it links economic needs, necessary travel for care and access to retirement pensions. There was one suggestion to adjust the question on having difficulties in access to pension.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003eThe economic issue for me is I think that this is the majority, if I say that there are 90% of fellow patient in chemotherapy who had to give up work, they have had to give up everything (Male, Patient, Popay\u0026aacute;n).\u003c/em\u003e \u003c/p\u003e\u003cp\u003e \u003cem\u003eQuestion about having to travel to other places to receive care: I put in a lot (second highest score)] (...). Currently I have to pay money, they charge me 350,000 [Colombian pesos] (Female, Patient, Popay\u0026aacute;n).\u003c/em\u003e \u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003c/div\u003e"},{"header":"Discussion","content":"\u003cp\u003e Our research has shown the development and positive evaluation of an instrument for assessing holistic care needs in Colombian patients with chronic diseases, including cancer, from both rural and urban areas. This was possible due to the strong community involvement in the design and execution of this exercise as the iterative contact with patients, caregivers and allied and social healthcare professionals was needed to fine-tune the adjustments. Our research showed that multiple rounds of development and evaluation were needed to effectively address the issues identified in earlier validation phases. This approach ensured the tool would be useful across Colombia\u0026rsquo;s diverse populations, both within and outside the universal healthcare system.\u003c/p\u003e \u003cp\u003eFrom the comments made in the first validation round of SPARC-Sp (\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e, \u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e), we learnt that many patients and caregivers have difficulties in accessing PC for physical, spiritual needs. They also mentioned multiple financial and social difficulties which would need to be addressed to effectively access PC, on whatever level of provision (\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e, \u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e, \u003cspan citationid=\"CR33\" class=\"CitationRef\"\u003e33\u003c/span\u003e). Addressing these observations led to the development of the \u0026ldquo;Colombian module\u0026rdquo; as an add-on to SPARC-Sp. Our validation suggests that the Colombian module enhances the tool\u0026rsquo;s cultural and contextual relevance by effectively addressing the identification of holistic needs specific to the Colombian population. This adaptation is expected to improve the instrument\u0026rsquo;s acceptability, comprehension, and usability, particularly among individuals with diverse sociocultural and educational backgrounds.\u003c/p\u003e \u003cp\u003eThe multiple small but important linguistic adaptations also show the importance of local testing and adjustment of wording of instruments trying to maintain semantic equivalence (\u003cspan citationid=\"CR31\" class=\"CitationRef\"\u003e31\u003c/span\u003e). In this study, we identified differences in the understanding of the SPARC-Sp response options (\u003cem\u003equite a bit\u003c/em\u003e \u0026ndash; \u0026ldquo;bastante\u0026rdquo; and \u003cem\u003every much\u003c/em\u003e \u0026ndash; \u0026ldquo;mucho\u0026rdquo;). These cultural nuances in the use of adverbs of quantity have previously been noted in translations from other languages into Spanish and may lead to inadequate linguistic transfers and induce confusion for the reader (\u003cspan citationid=\"CR34\" class=\"CitationRef\"\u003e34\u003c/span\u003e). The suggestion of traffic light-logic colouring within the Likert scale may help improve this situation.\u003c/p\u003e \u003cp\u003eOther adaptations of SPARC, such as the Korean version, reported challenges in translation and highlighted the need to soften the wording of certain questions and to employ more colloquial language (\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e). Similarly, the Taiwanese adaptation indicated that, although the terms were not particularly difficult to understand, there were similarities between some items, difficulties in distinguishing between the roles of hospital and community nurses, and a strong emotional connotation associated with the word \u0026ldquo;illnesses\u0026rdquo; (\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eThe previous translations and adaptations were completed in settings that, although linguistically and culturally quite different from the UK, were high-income settings and were performed with a relatively highly educated patient populations (\u003cspan additionalcitationids=\"CR15\" citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e). We conducted the SPARC-Sp-Col study in a middle-income country, with part of the work taking place in a particularly impoverished region that has long been, and continues to be, affected by violent conflict.\u003c/p\u003e \u003cp\u003eSpanish is a language spoken by most of South and Central American populations, but expressions may be differently understood, even between regions of one country (\u003cspan citationid=\"CR35\" class=\"CitationRef\"\u003e35\u003c/span\u003e). Whereas it is very common to widely use a tool that was translated and validated in one Spanish speaking country (\u003cspan citationid=\"CR35\" class=\"CitationRef\"\u003e35\u003c/span\u003e), this is a convenience that should not be promoted (\u003cspan citationid=\"CR36\" class=\"CitationRef\"\u003e36\u003c/span\u003e), although sometimes for practical reasons it is impossible to avoid. The understanding and acceptability of items vary by region, culture and educational level, and some formulations may really be misunderstood in some regions generating a cultural bias (\u003cspan citationid=\"CR36\" class=\"CitationRef\"\u003e36\u003c/span\u003e). Although we employed purposive sampling, seeking heterogeneity of the participants, we recognise that in this project we failed to reflect all existing multidiversity within Colombia. However, we believe that, by working with geographically, culturally and socioeconomically very diverse populations, we have managed to reflect and incorporate many of these variations in the development of the current instrument. In addition, the Popayan area was and remains a relatively poor area of the country that suffers from the armed conflict that persists in multiple parts of Colombia, and which creates its specifics needs and barriers for patients (\u003cspan citationid=\"CR37\" class=\"CitationRef\"\u003e37\u003c/span\u003e). In turn, the inclusion of Bogot\u0026aacute; as the capital of Colombia represents an urbanised region, with relevant problems for the guarantee of access to PC, such as migration, forced intra-urban displacement, economic instability, among other determinants (\u003cspan citationid=\"CR37\" class=\"CitationRef\"\u003e37\u003c/span\u003e, \u003cspan citationid=\"CR38\" class=\"CitationRef\"\u003e38\u003c/span\u003e). Future research is needed to evaluate how SPARC-Sp-Col performs in different regions of the country.\u003c/p\u003e \u003cp\u003eAn important point of discussion in all groups was whether or not the SPARC-Sp-Col should and could be a self-administration instrument, as it was designed to be. Participants agreed that the design of the questions in principle, allowed for self-administration, but only if people are physically and mentally able. There were two main opinions on self-application: caregivers often thought it was important for them to help fill out the instrument, as they believed that they knew the patient well. While some patients agreed this could work well, others said they would answer differently when their caregiver was assisting them\u0026ndash; an important argument for strict self-application when possible. Healthcare professionals generally expressed that in practice, caregivers are often very heavily involved and will tend to \u0026ldquo;help out\u0026rdquo; filling the form or even take over the complete task of answering SPARC-Sp-Col \u0026ndash; highlighting the importance of clear instructions on how, when, where and with whom to apply the instrument.\u003c/p\u003e \u003cp\u003eFrom the health professionals' perspective, the identification of PC needs is also influenced by cultural and religious factors, regional difficulties, misinterpretations of PC, age and illness (\u003cspan citationid=\"CR39\" class=\"CitationRef\"\u003e39\u003c/span\u003e). Other determinants of suboptimal needs identification may stem from the organization of the health system, allocation of resources, PC training, and workload demands (\u003cspan citationid=\"CR38\" class=\"CitationRef\"\u003e38\u003c/span\u003e), all of which contribute to distress among healthcare professionals (\u003cspan citationid=\"CR40\" class=\"CitationRef\"\u003e40\u003c/span\u003e), and may hinder the appropriate administration of SPARC-Sp-Col and the effective addressing of the identified needs.\u003c/p\u003e \u003cp\u003eRegarding caregivers, previous research highlights the role of caregivers in shared decision-making in setting up a care plan (\u003cspan citationid=\"CR41\" class=\"CitationRef\"\u003e41\u003c/span\u003e). However, it is estimated that about 55% of caregivers of adults with severe chronic illness have never heard of PC, and 40% associate it only with end of life without considering earlier implementation (\u003cspan citationid=\"CR41\" class=\"CitationRef\"\u003e41\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eAt the national level, the 2022\u0026ndash;2026 Action Plan (Building a Positive Environment for PC in Colombia) is currently underway, urging the strengthening of PC programmes to ensure the continuous care of individuals with palliative needs and their families (\u003cspan citationid=\"CR42\" class=\"CitationRef\"\u003e42\u003c/span\u003e). Within this framework, SPARC-Sp-Col could be integrated as a tool to support communication and the identification of needs. Moreover, previous prioritisation exercises for the implementation of PC research in Colombia highlight the importance of exploring the needs of the patient as well as their caregivers as an approach to a more comprehensive assessment (\u003cspan citationid=\"CR43\" class=\"CitationRef\"\u003e43\u003c/span\u003e).\u003c/p\u003e"},{"header":"Conclusion","content":"\u003cp\u003eSPARC-Sp-Col is a culturally adapted, content-validated instrument that expands SPARC-Sp by incorporating semantic changes to the wording and a Colombian-specific module. This tool enables a more accurate and context-sensitive assessment of the holistic care needs of cancer patients in Colombia. Its development marks a key step toward improving the timely and equitable delivery of palliative care in a country where structural, cultural, and educational barriers often delay or prevent access to appropriate support. The findings also highlight the importance of validating and if necessary, adapting instruments to the local population and circumstances \u0026ndash; even if they speak the same language. This calls for a more comprehensive approach, which could also encompass large indigenous languages as Nasa, Misak, Way\u0026uacute;u and Ember\u0026aacute; and the Braille system.\u003c/p\u003e"},{"header":"Abbreviations","content":"\u003cul\u003e\n \u003cli\u003e\u003cstrong\u003eCOREQ:\u0026nbsp;\u003c/strong\u003eConsolidated Criteria for Reporting Qualitative Research.\u0026nbsp;\u003c/li\u003e\n \u003cli\u003e\u003cstrong\u003eCOSMIN:\u003c/strong\u003e COnsensus-based Standards for the selection of health Measurement Instruments.\u003c/li\u003e\n \u003cli\u003e\u003cstrong\u003eISPOR:\u003c/strong\u003e International Society For Pharmacoeconomics And Outcomes Research.\u003c/li\u003e\n \u003cli\u003e\u003cstrong\u003eSPARC:\u0026nbsp;\u003c/strong\u003eSheffield Profile for Assessment and Referral for Care.\u003c/li\u003e\n \u003cli\u003e\u003cstrong\u003eSPARC-Sp-Col:\u0026nbsp;\u003c/strong\u003eSheffield Profile for Assessment and Referral for Care in Colombian Spanish.\u003c/li\u003e\n \u003cli\u003e\u003cstrong\u003ePC:\u0026nbsp;\u003c/strong\u003ePalliative Care.\u003c/li\u003e\n \u003cli\u003e\u003cstrong\u003eHNA:\u0026nbsp;\u003c/strong\u003eHolistic needs assessment\u003c/li\u003e\n\u003c/ul\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003cstrong\u003eEthics approval and consent to participate:\u0026nbsp;\u003c/strong\u003eThis research has been approved by the Ethics and Research Committee of the Hospital Universitario San Ignacio (FM-CIE-0010-24). Participants received the Informed Consent form and participants who participated in steps 4 and 5 received a voucher of 40 thousand Colombian pesos equivalent to 9.7 dollars.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConsent for publication:\u0026nbsp;\u003c/strong\u003eAll participants consented to the publication of anonymised data collected in the research through informed consent.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAvailability of data and materials:\u0026nbsp;\u003c/strong\u003eData are available in anonymised form upon reasonable request to the authors.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eCompeting interests:\u0026nbsp;\u003c/strong\u003eThe authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eFunding:\u0026nbsp;\u003c/strong\u003eThis project was funded by the International Strategic Partnerships Fund \u0026ndash; ODA block-funded grant to Queen\u0026rsquo;s Belfast University\u003cstrong\u003e.\u0026nbsp;\u003c/strong\u003e- Department for the Economy NI (DfE) International Science Partnership Fund (ISPF) Official Development Assistance (ODA) Institutional Support Grant (ISG) - R3601NUR\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAuthors\u0026apos; contributions:\u0026nbsp;\u003c/strong\u003eConceptualization: all, Data curation: CVM, EdV and JAC, Formal analysis: all, Funding acquisition: all, Investigation: all, methodology: all, Project administration: EdV and JR, Resources: EdV and JR, Supervision \u0026ndash; EdV, JR and JAC, Validation: all, Visualization: CVM and JAC, Writing \u0026ndash; original draft: All, Writing \u0026ndash; review and editing: \u0026nbsp;all.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAcknowledgements:\u0026nbsp;\u003c/strong\u003eWe sincerely thank the participants of the Colibr\u0026iacute; Project across Colombia for generously sharing their experiences and perspectives.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAuthors\u0026apos; information:\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eCindy V. Mendieta:\u0026nbsp;\u003c/strong\u003ehttps://orcid.org/0000-0001-9536-586X\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eEsther de Vries:\u0026nbsp;\u003c/strong\u003ehttps://orcid.org/0000-0002-5560-2258\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eJose A. Calvache:\u0026nbsp;\u003c/strong\u003ehttps://orcid.org/0000-0001-9421-3717\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eSam H. Ahmedzai:\u0026nbsp;\u003c/strong\u003ehttps://orcid.org/0000-0002-2028-8510\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eGillian Prue:\u0026nbsp;\u003c/strong\u003ehttps://orcid.org/0000-0003-2198-3731\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eJoanne Reid:\u0026nbsp;\u003c/strong\u003ehttps://orcid.org/0000-0001-5820-862X\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\n\u003cli\u003eMinisterio de Salud y Protecci\u0026oacute;n Social, Instituto de Evaluaci\u0026oacute;n Tecnol\u0026oacute;gica en Salud. https://www.minsalud.gov.co/sites/rid/Lists/BibliotecaDigital/RIDE/DE/CA/gpc-completa-cuidados-paliativos-adopcion.pdf. 2016. p. 1\u0026ndash;412 Gu\u0026iacute;a de Pr\u0026aacute;ctica Cl\u0026iacute;nica para la atenci\u0026oacute;n de pacientes en Cuidado Paliativo (adopci\u0026oacute;n). \u003c/li\u003e\n\u003cli\u003eDavis M, Pennell N. The Role of Palliative Care in Lung Cancer. In: IASLC Thoracic Oncology. 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Microsoft Forms. \u003c/li\u003e\n\u003cli\u003ePontificia Universidad Javeriana, Universidad del Cauca, Queens Belfast University, Hospital Universitario San Jos\u0026eacute; de Popay\u0026aacute;n, Universidad de Sheffield. https://www.proyectocolibri.co/podcast-videos. 2023. Proyecto colibr\u0026iacute;. \u003c/li\u003e\n\u003cli\u003eGunawan J, Marzilli C, Aungsuroch Y. Establishing appropriate sample size for developing and validating a questionnaire in nursing research. Belitung Nurs J. 2021 Oct 28;7(5):356\u0026ndash;60. \u003c/li\u003e\n\u003cli\u003ePalinkas LA, Horwitz SM, Green CA, Wisdom JP, Duan N, Hoagwood K. Purposeful Sampling for Qualitative Data Collection and Analysis in Mixed Method Implementation Research. Administration and Policy in Mental Health and Mental Health Services Research. 2015 Sep 6;42(5):533\u0026ndash;44. \u003c/li\u003e\n\u003cli\u003eMartin-Romera A, Molina Ruiz E. Valor del conocimiento pedag\u0026oacute;gico para la docencia en Educaci\u0026oacute;n Secundaria: dise\u0026ntilde;o y validaci\u0026oacute;n de un cuestionario. Estudios Pedag\u0026oacute;gicos . 2017;XLIII(2):195\u0026ndash;220. \u003c/li\u003e\n\u003cli\u003eR Core Team. https://www.R-project.org/. 2024. R: A Language and Environment for Statistical Computing. \u003c/li\u003e\n\u003cli\u003eJalal Khidhir R, Hussein Rassul T. Assessing the Validity of Experts\u0026rsquo; Value Judgment over Research Instruments. ZANCO Journal of Humanity Sciences. 2023 Oct 10;27(5). \u003c/li\u003e\n\u003cli\u003eWild D, Grove A, Martin M, Eremenco S, McElroy S, Verjee-Lorenz A, et al. Principles of Good Practice for the Translation and Cultural Adaptation Process for Patient-Reported Outcomes (PRO) Measures: Report of the ISPOR Task Force for Translation and Cultural Adaptation. Value in Health. 2005 Mar;8(2):94\u0026ndash;104. \u003c/li\u003e\n\u003cli\u003eZou S. Research on the Cultural Equivalence in Translation. In: Atlantis Press, editor. 6th International Conference on Management, Education, Information and ControL. 2016. p. 1026\u0026ndash;9. \u003c/li\u003e\n\u003cli\u003eMokkink LB, Elsman EBM, Terwee CB. COSMIN guideline for systematic reviews of patient-reported outcome measures version 2.0. Quality of Life Research. 2024 Nov 28;33(11):2929\u0026ndash;39. \u003c/li\u003e\n\u003cli\u003eKaasa S, Loge JH, Aapro M, Albreht T, Anderson R, Bruera E, et al. Integration of oncology and palliative care: a Lancet Oncology Commission. Lancet Oncol. 2018 Nov;19(11):e588\u0026ndash;653. \u003c/li\u003e\n\u003cli\u003eG\u0026oacute;mez de la Fuente RG, Sanz M. Estudio contrastivo de los cuantificadores de cantidad y grado del castellano, guaran\u0026iacute; paraguayo y japon\u0026eacute;s. Propuesta pedag\u0026oacute;gica para hablantes de japon\u0026eacute;s [PhD thesis]. [Kobe]: Universidad de Estudios Extranjeros de Kobe; 2024. \u003c/li\u003e\n\u003cli\u003eLipski JM. Geographical and Social Varieties of Spanish: An Overview. In: The Handbook of Hispanic Linguistics. Wiley; 2012. p. 1\u0026ndash;26. \u003c/li\u003e\n\u003cli\u003eCruchinho P, L\u0026oacute;pez-Franco MD, Capelas ML, Almeida S, Bennett PM, Miranda da Silva M, et al. Translation, Cross-Cultural Adaptation, and Validation of Measurement Instruments: A Practical Guideline for Novice Researchers. J Multidiscip Healthc. 2024 May;Volume 17:2701\u0026ndash;28. \u003c/li\u003e\n\u003cli\u003eComisi\u0026oacute;n de la Verdad. Hay futuro si hay verdad : Informe Final de la Comisi\u0026oacute;n para el Esclarecimiento de la Verdad, la Convivencia y la No Repetici\u0026oacute;n. 1st ed. Bogot\u0026aacute;; 2022. 1\u0026ndash;200 p. \u003c/li\u003e\n\u003cli\u003eS\u0026aacute;nchez-C\u0026aacute;rdenas MA, Le\u0026oacute;n MX, Rodr\u0026iacute;guez-Campos LF, Vargas-Escobar LM, Cabezas L, Tamayo-D\u0026iacute;az JP, et al. Accessibility to palliative care services in Colombia: an analysis of geographic disparities. BMC Public Health. 2024 Jun 21;24(1):1659. \u003c/li\u003e\n\u003cli\u003ePergolizzi J, LeQuang JAK, Wagner M, Varrassi G. Challenges in Palliative Care in Latin America: A Narrative Review. Cureus. 2024 May 20; \u003c/li\u003e\n\u003cli\u003eMaffoni M, Argentero P, Giorgi I, Hynes J, Giardini A. Healthcare professionals\u0026rsquo; moral distress in adult palliative care: a systematic review. BMJ Support Palliat Care. 2019 Sep;9(3):245\u0026ndash;54. \u003c/li\u003e\n\u003cli\u003eDionne-Odom JN, Ornstein KA, Kent EE. What do family caregivers know about palliative care? Results from a national survey. Palliat Support Care. 2019 Dec 8;17(6):643\u0026ndash;9. \u003c/li\u003e\n\u003cli\u003eAsociaci\u0026oacute;n Cuidados Paliativos de Colombia. https://hdl.handle.net/20.500.12495/13445. 2022. Construyendo un entorno positivo para los cuidados paliativos en Colombia: Plan Nacional de cuidados Paliativos 2022-2026. \u003c/li\u003e\n\u003cli\u003eMcConnell T, Mendieta C V., de Vries E, Calvache JA, Prue G, Ahmedzai S, et al. Developing research priorities for palliative care in Colombia: a priority setting partnership approach. BMC Palliat Care. 2024 Aug 1;23(1):194. \u003c/li\u003e\n\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[{"identity":"4d5f6a99-557c-4ee9-8df0-c9dc42f45fc1","identifier":"10.13039/501100000873","name":"Queen's University Belfast","awardNumber":"R3601NUR","order_by":0}],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":true,"hideJournal":true,"highlight":"","institution":"Queen’s Belfast University","isAcceptedByJournal":false,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true},"keywords":"SPARC, Holistic needs assessment, Palliative Care, Colombia, validation","lastPublishedDoi":"10.21203/rs.3.rs-8703055/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-8703055/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003ch2\u003eBackground:\u003c/h2\u003e \u003cp\u003ePalliative Care (PC) aims to improve the quality of life of individuals with life-threatening illnesses through the early identification and management of holistic needs. Many Colombians in need of PC die without having access to it. When we previously adapted and validated the Sheffield Profile for Assessment and Referral to Care for Spanish-speaking populations (SPARC-Sp), users reported unmet needs and challenges in comprehension and self-administration, particularly among those with lower literacy levels. We designed, culturally adapted, and validated a Colombia-specific module, SPARC-Sp-Col, as an enhancement to SPARC-Sp, to better capture the holistic PC needs of Colombian patients.\u003c/p\u003e\u003ch2\u003eMethods:\u003c/h2\u003e \u003cp\u003eWe used a five-step qualitative methodology: (\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e) preliminary adaptation of a Colombia-specific module as add-on to SPARC-Sp for the Colombian context; (\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e) online expert panel review; (\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e) integration of feedback and iterative refinement; (\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e) cognitive interviews with patients; and (\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e) focus groups with healthcare professionals, patients, and caregivers from across Colombia.\u003c/p\u003e\u003ch2\u003eResults:\u003c/h2\u003e \u003cp\u003eThe iterative adaptation process led to the refinement of item language for improved clarity and cultural resonance, while maintaining semantic equivalence with its original version. We included 17 new items to reinforce existing domains and a dedicated Colombia-specific module to address unmet local needs (5 of them) including housing conditions, violence and navigating the health care system. The evaluation of the resulting tool, SPARC-Sp-Col, demonstrated good content validity according to Aiken's V (\u0026gt;\u0026thinsp;0.5), reflective of feedback from expert consensus, allied and social healthcare professionals, patient and caregivers.\u003c/p\u003e\u003ch2\u003eConclusions:\u003c/h2\u003e \u003cp\u003eSPARC-Sp-Col is a culturally adapted, content-validated instrument that expands SPARC-Sp by incorporating a Colombian-specific module. It enables a more accurate and context-sensitive assessment of the holistic care needs of cancer patients in Colombia. Its development marks a key step toward improving the timely and equitable delivery of PC in a country where access to appropriate support is often lacking.\u003c/p\u003e","manuscriptTitle":"Design, adaptation and content validation of the Sheffield Profile for Assessment and Referral for Care in Colombian Spanish (SPARC-Sp-Col)","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2026-01-29 00:53:43","doi":"10.21203/rs.3.rs-8703055/v1","editorialEvents":[{"type":"communityComments","content":0}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"0dd7f15b-3e11-40e5-8c85-74a963aed4a6","owner":[],"postedDate":"January 29th, 2026","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"posted","subjectAreas":[{"id":61777266,"name":"Epidemiology"}],"tags":[],"updatedAt":"2026-01-29T00:53:44+00:00","versionOfRecord":[],"versionCreatedAt":"2026-01-29 00:53:43","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-8703055","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-8703055","identity":"rs-8703055","version":["v1"]},"buildId":"XKTyCvWXoU3ODBz1xrDgd","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}