{"paper_id":"4df3903c-a963-4e1f-b34d-6cb3ffead058","body_text":"Patient and contact nurse perceptions regarding patient participation during encounters prior to cancer treatment-a cross-sectional study | 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 Patient and contact nurse perceptions regarding patient participation during encounters prior to cancer treatment-a cross-sectional study Bodil Westman, Karin Bergkvist, Andreas Karlsson Rosenblad, Lena Sharp, and 1 more This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-8603011/v1 This work is licensed under a CC BY 4.0 License Status: Under Review Version 1 posted 8 You are reading this latest preprint version Abstract Background Contact nurses in cancer care play a key role in providing information about planned treatment and care. However, little is known about how their communication skills influence patients’ ability to participate actively in their care. There is also limited knowledge about contact nurses’ capacity to engage patients in decision-making related to information sharing and self-management. This study aimed to examine the level of agreement between patients and contact nurses regarding perceived patient participation during pre-treatment encounters and to identify factors influencing agreement or disagreement. Methods A cross-sectional assessment was conducted with 63 cancer patient–contact nurse pairs at an oncology outpatient clinic in a large university hospital. Patients and contact nurses completed the Dyadic OPTION scale immediately after a scheduled encounter prior to treatment initiation. Before the encounter, patients also completed the Patient Activation Measure (PAM-13®), the Hospital Anxiety and Depression Scale (HADS), and study-specific questions. Data were analyzed using percentage agreement and linear regression, along with content analysis of an open-ended question about agreement on the main issues discussed. Results Agreement between patients and contact nurses varied, although most patients (95%) reported high satisfaction with the encounter. Depression symptoms were the primary factor associated with lower agreement. Higher agreement occurred when both parties reported discussing the same main problem. Disagreement was most often related to patients not being asked about their prior knowledge or preferred level of involvement in treatment and care. Conclusions Low agreement between patients’ and contact nurses’ perceptions of patient participation and of the issues discussed before treatment may lead to misunderstandings and missed information, posing a potential risk to patient safety. Contact nurses therefore need to proactively assess patients’ prior knowledge and preferences for involvement. Understanding patients’ existing knowledge and experiences enables nurses to tailor information more effectively, improving comprehension and opportunities for participation. Contact nurses should also ensure they have accurately understood each patient’s concerns and that patients fully comprehend the information provided. Ongoing development of communication skills and a stronger focus on effective information exchange are essential. Figures Figure 1 Background Adapting treatment and care-related information to align with the patients’ needs and levels of understanding is crucial for supporting informed health decisions and represents a cornerstone of person-centred care [1, 2]. Communication, as a process of interaction and information exchange, has been identified as a fundamental element of person-centred care [2-4]. Person-centred communication, founded on trust and mutual respect, involves addressing the patient’s needs, perspectives, and understanding of their situation [5, 6], actively listening to the patient, and focusing on strengthening their resources. This approach enhances the patient’s understanding and overall experience of their situation [2, 7]. For patients diagnosed with cancer, nurses’ communication skills have been found to impact both the patients’ satisfaction with their own care and their psychological well-being [8]. Additionally, the nurses’ support encourages patients to participate actively in their own care, which improves positive health outcomes [9, 10]. Patients often have substantial information needs at the time of cancer diagnosis, which should be tailored to their individual circumstances and accompanied by guidance using various informational resources [11]. How information is conveyed and understood plays a pivotal role, as miscommunication may result in conflicting expectations, intentions, and outcomes [4, 12-14]. Many patients prefer to take an active role in their own care and therefore need clear, concise information regarding potential treatment side-effects and effective management strategies [15, 16]. Overall, patients' satisfaction with their care, their capacity to cope with the disease and treatment as well as their ability to handle side-effects in daily life are strongly influenced by the relational quality of communications. This is especially important when addressing individual needs in the context of a newly diagnosed cancer [4, 6, 13]. The contact nurse in cancer care, a role established in Sweden during the 2010s [17], aims to improve information exchange and communication between patients and health care professionals. The contact nurse role also aims to enhance accessibility, continuity, safety, and active patient participation. Access to contact nurses in cancer care has been found to be associated with higher patient satisfaction, better possibilities for active participation in decisions regarding the patient’s own care as well as more appropriate and understandable information about the disease [18]. The first meeting between contact nurses and patients occurs at the time of, or shortly after, the patients receive their cancer diagnosis, with the contact nurses helping to clarify information about the diagnosis, planned treatment, and care, as well as offering psychological support. Their role extends into the treatment phase, ensuring continued support. Shared decision-making has been described as a collaborative process between health care professionals and patients where treatment and self-management decisions are made, while considering the patient's preferences [16, 19]. Research on shared decision-making in cancer care mainly focuses on medical treatment options [19, 20], but has also included decisions related to symptom management [21, 22]. Patients require support not only in expressing their needs and raising questions but also emotionally, in preparation for active involvement in decisions regarding their own care [23]. Patients’ reactions to a cancer diagnosis vary, but feelings of shock, fear, and denial are common. Anxiety and depression have been found to affect patients' ability to recall information [13, 14]. Information overload may be experienced, and the risk of missed information is not negligible [14, 24]. There is often a brief time window between receiving the diagnosis and the start of treatment, leaving limited time for the contact nurse to clarify and repeat information as well as for patients to fully process the provided information. A better understanding of the contact nurse’s ability to involve patients in decisions regarding information provision and self-management options prior to the start of cancer treatment is thus needed. Aim The primary aim of this study was to examine the level of agreement/disagreement between patients’ and contact nurses’ perception of patient participation in care encounters before the start of cancer treatment. In addition, we aimed to identify factors that may impact the level of agreement/disagreement. Methods Inclusion procedure Eligible patients were identified either during the referral review (for gynaecological and upper gastrointestinal cancers) or at a multidisciplinary conference (for gynaecological and head and neck cancers). Patients also needed to have a scheduled appointment with a contact nurse participating in the study. Those patients who agreed to be contacted by the researcher received written study information either by regular mail (sent by a secretary) or handed out in person by a nurse at the outpatient clinic after their physician appointment. Patients who consented were contacted within a week by the responsible researcher, who provided a verbal overview of the study and responded to any questions from the patients. Patients who gave oral informed consent to participate completed the questionnaires (described below). The researcher met with patients before their appointment with the contact nurse to obtain written informed consent and collect the completed questionnaires. The contact nurses received study information (verbal and in writing) from the researcher during dedicated meetings at their workplaces. Contact nurses who started their employment during the study period received individual information together with the information letter. The contact nurses who agreed to participate signed an informed consent form. Immediately following the encounter, the researcher met with both the patient and the contact nurse to distribute the dyadic OPTION scale (described below). Each pair completed the questionnaire separately and returned it to the researcher. In total, 63 patient-contact nurse pairs were included in the study. Questionnaires and instruments The Patient Activation Measure PAM-13 ® The Patient Activation Measure (PAM-13 ® ) was used to collect data on patients’ activation level. This instrument has been developed to measure how people estimate their knowledge, skills, beliefs, and confidence in taking an active role in their own care [25]. It has been widely used for measuring patient activation in different populations, including patients with cancer [26-28], and is validated in Swedish [29]. The instrument consists of 13 items with responses given on a four-point verbal scale (without predefined numeric scoring): “disagree strongly”, “disagree”, “agree” and “agree strongly”, as well as a “not applicable” option. Scores are transformed to a 0–100 scale and thereafter converted into 4 ordinal levels: PAM 1 ( Disengaged and overwhelmed ), PAM 2 ( Becoming aware but still struggling ), PAM 3 ( Taking actions and gaining control ), and PAM 4 ( Maintaining behaviours and pushing further ). Higher scores and levels indicate higher confidence in the respondent’s self-management ability [25]. The Hospital Anxiety and Depression Scale (HADS) The Hospital Anxiety and Depression Scale (HADS) [30] was used to measure the patients’ symptoms of anxiety and/or depression. HADS contains two subscales, measuring symptoms of anxiety (HADS-A) and depression (HADS-D), respectively, with seven items in each subscale. Scores for each item range from 0 to 3 points, with higher scores indicating a worse condition. A total subscale score of ≤ 7 points (out of a maximum of 21 points) denotes that there are no clinical symptoms of anxiety /depression, while a score of 8–21 points indicate clinical symptoms of anxiety /depression. The scale has been translated to Swedish and validated in a Swedish context [31, 32]. The dyadic OPTION scale To measure the extent to which health care professionals involve patients in shared decision-making, the OPTION scale has been developed [33, 34]. This instrument has been further developed into a dyadic version, the dyadic OPTION scale, in which both patients and health care professionals rate the perceived patient involvement in shared decision-making [35], offering a dual perspective to assess agreement in interactions during encounters. The questionnaire consists of 12 questions, with responses given on a four-point verbal scale, (“completely disagree”, “disagree”, “agree”, or “completely agree”) and one open-ended question ( What was the main problem you talked about? Please describe it in a few words ). The responses from each participant are summed to yield a score ranging from 12 to 48 points. The instrument is available in both a patient and a health care professionals’ version, aiming to capture both perspectives by using corresponding questions. The patient version has been translated into Swedish and validated within Swedish psychiatric care [36]. Study specific questions The study specific questionnaire (developed for the study by the research team and used in previous studies) regarding patients’ perceptions of their participation in the encounter included the following four questions: “Did the contact nurse use a language you understood (avoided medical words or terms)?”, “Did the contact nurse ask about your previous knowledge about your disease before providing information?”, “Are you satisfied with the conversation with the contact nurse?”, and “Have you been involved to the extent you wished in the decisions regarding your care today?”. The response format was a four-point verbal scale without predefined numeric scoring (“not at all”, “a little”, “quite a lot”, or “very much”). Additionally, demographic data on age (years), gender (male/female), and education level (college/university education yes/no) were collected from the patients. Contact nurses reported their education level as having a specialist nurse education (yes/no). Statistical analyses Descriptive statistics for the patients and contact nurses are presented as frequencies and percentages, n (%), for categorical data, while ordinal, discrete, and continuous data are reported as mean values with accompanying standard deviations (SDs). For the study specific questions, the responses were dichotomized as Yes (if responding “a little”, “quite a lot”, or “very much”) or No (if responding “not at all”). Analyses of the agreement between patient’s and contact nurse’s scores for the dyadic OPTION scale were conducted by calculating both simple and extended percentage agreements, as well as Cohen's kappa, for each of the 12 dyads separately. Percentage agreements are presented with tolerances of 0 and 1 steps, where the tolerance reflects the number of steps by which the patient-contact nurse pair may differ on the dyadic OPTION scale while still being considered in agreement. For instance, a tolerance of 0 steps signifies complete agreement, with both patient and contact nurse selecting the same response alternative, e.g. both giving the answer “disagree”. A tolerance of 1 step indicates a difference between the patient and the contact nurse where e.g. the patient may give the answer “completely disagree” while the contact nurse gives the answer “disagree”, which is still regarded as the patient and the contact nurse being in agreement at this tolerance level. In order to take the dependence within patient-contact nurse pairs caused by the same contact nurse occurring in several pairs into account, Cohen’s kappa is presented with accompanying P-values and 95% confidence intervals (CIs) calculated using the bootstrap percentile method with R = 10,000 bootstrap replicates. Associations between patient characteristics, scores from the HADS-A, HADS-D, and PAM-13 ® instruments as well as patient and contact nurse education level (independent variables) and differences (within patients-contact nurse pairs) in dyadic OPTION score (dependent variable) were analysed using adjusted and unadjusted linear regression models. The adjusted regression models were constructed by using a backward stepwise procedure with an inclusion P-value level of ≤ 0.20, after starting with all independent variables. Statistical analyses were performed using IBM SPSS 27 (IBM, Armonk, NY) and R version 4.3.1 or higher (R Foundation for Statistical Computing, Vienna, Austria) with two-sided P-values < 0.05 considered statistically significant. Missing values were in all analyses handled using pairwise deletion. Analysis of the of open-ended question The responses to the open-ended question in the dyadic OPTION scale ( What was the main problem you talked about? Please describe it in a few words ) of each patient-contact nurse pair were assessed using a manifest qualitative content analysis [37]. The answers from patients and contact nurses were read and labelled with a code separately by two researchers and then compared, to identify pairs with or without agreement of the content. Ethics approval Ethical approval to perform the study was obtained from the Swedish Ethical Review Authority (Dnr 2021-03751). Results Characteristics of the 63 patients and 18 contact nurses participating in the present study are presented in Table 1. Each contact nurse met between 1 and 8 patients. The participating patients were between 35 and 86 years old, with a mean (SD) age of 62 (12) years. Most patients (n = 47; 75%) were women, with a majority (n = 35; 56%) having a college/university education. Gynaecological cancer was the most common type of cancer (n = 30; 48%). Among the contact nurses, 67% (n = 12) had undergone specialist training. In total, 28 (45%) of the patients reported clinical symptoms of anxiety (HADS score ≥ 8 points) while 10 (16%) patients reported clinical symptoms of depression (HADS score ≥ 8 points). A total of 48 (76%) patients reported PAM scores at level 3 or 4, indicating a high activation level. Table 1. Characteristics of the 63 patients and 18 contact nurses included in the study. Group Variable Value Patients Age (years), mean (SD; min–max) 62 (12; 35–86) Gender, n (%) Female 47 (75) Education, n (%) University or college 35 (56) Diagnosis, n (%) Gynecological cancer 30 (48) Head & Neck cancer 27 (43) Upper gastrointestinal cancer 6 (9) Questionnaires HADS-A score (points), mean (SD) 7.59 (5.02) ≤ 7 points, n (%) 35 (55) ≥ 8 points, n (%) 28 (45) HADS-D score (points), mean (SD) 4.10 (3.47) ≤ 7 points, n (%) 53 (84) ≥ 8 points, n (%) 10 (16) PAM-13 ® level Low (level 1 or 2), n (%) 15 (24) High (level 3 or 4), n (%) 48 (76) Contact nurses Education, n (%) Specialist nurse 12 (67) Number of patients per contact nurse, n (%) 1–3 8 (44) 4–6 7 (39) 7–8 3 (17) Notes: HADS, Hospital Anxiety and Depression Scale; PAM, patient activation measure; SD, standard deviation. There were no missing values for any of the variables. Table 2. Percentage agreements and Cohens’s kappa for the 12 questions in the dyadic Option scale The dyadic Option scale Number of pairs Tolerance, steps Cohen’s kappa Open-ended question: Agreeing on content? Question 0 1 kappa 95% CI a P-value a,b Yes, n (%) c No, n (%) c P-value d 1. A health problem was identified, where it was made clear that a decision was needed. 60 41.7 76.7 0.079 -0.092; 0.249 0.373 13 (40.6) 12 (42.9) 1.000 2. More than one way to manage the health problem was described. 60 31.7 78.3 -0.108 -0.249; 0.027 0.119 14 (42.4) 5 (18.5) 0.057 3. Different sources of information (e.g., leaflets, websites, contact with other people) to help make the decision were offered. 63 14.3 44.4 0.001 -0.080; 0.085 0.963 5 (14.7) 4 (13.8) 1.000 4. Different options (including the possibility of doing nothing) were discussed. 59 30.5 59.3 0.084 -0.066; 0.238 0.283 8 (25.0) 10 (37.0) 0.399 5. The advantages, disadvantages and possible outcomes of options were discussed. 58 17.2 69.0 -0.163 -0.308; -0.017 0.030 6 (20.0) 4 (14.3) 0.732 6. Ideas or expectations about managing the health problem were discussed. 61 31.1 85.2 -0.121 -0.297; 0.051 0.170 10 (30.3) 9 (32.1) 1.000 7. Concerns or worries about managing the health problem were discussed. 61 31.1 80.3 -0.120 -0.252; 0.019 0.089 12 (36.4) 7 (25.0) 0.412 8. It was made sure that information had been understood. 62 48.4 100.0 -0.228 -0.403; -0.017 0.036 19 (55.9) 11 (39.3) 0.213 9. There were opportunities to ask questions. 62 75.8 98.4 -0.114 -0.184; -0.029 0.010 31 (91.2) 16 (57.1) 0.003 10. The preference to take part in the decision (or not) was respected. 60 26.7 78.3 0.039 -0.038; 0.128 0.342 9 (28.1) 7 (25.0) 1.000 11. During the consultation, a decision was made; or there was an agreement to postpone making the decision. 61 36.1 65.6 0.076 -0.064; 0.216 0.291 16 (48.5) 6 (21.4) 0.035 12. The possibility of coming back to the decision was discussed. 58 20.7 63.8 -0.063 -0.184; 0.075 0.350 6 (19.4) 6 (22.2) 1.000 Note: The maximum possible tolerance is 3 steps, in which the percentage agreement is 100% for all questions. Statistically significant P-values are given in bold . a Calculated using the bootstrap percentile method with R = 10,000 bootstrap replicates. b P-values for the null hypothesis that Cohen’s kappa = 0. c Of the 63 pairs, 34 (54.0%) pairs were deemed to agree on the content of the discussions in the encounter, according to the open-ended question, while 29 (46.0%) pairs were deemed to not agree. d P-values from Fisher’s exact test for differences between pairs agreeing (“yes”) and not agreeing (“no”) on the content of the discussions in the encounter, according to the open-ended question. Level of agreement on perceived participation In Table 2 the agreements (in percentage) on perceived patient participation within patient-contact nurse pairs are presented together with Cohen’s kappa (separately for the 12 questions in the dyadic OPTION scale). Question 9, “There were opportunities to ask questions”, reached an agreement of 75.8% at a tolerance of 0 steps (i.e., both patient and contact nurse reported the same response alternative). Question 3, “Different sources of information (e.g., leaflets, websites, contact with other people) to help make the decision were offered” and question 5, “The advantages, disadvantages, and possible outcomes of options were discussed”, reached complete agreements (a tolerance of 0 steps) of 14.3% and 17.2%, respectively. At a tolerance of 1 step (i.e., allowing for pairs to score response options with a one-step difference), the difference of agreement ranged from 100% for question 8, “It was made sure that information had been understood”, to 59.3% for question 4, “Different options (including the possibility of doing nothing) were discussed”. For Cohen’s kappa, question 5 in the dyadic OPTION scale, “The advantages, disadvantages and possible outcomes of options were discussed”, question 8, “It was made sure that information had been understood”, and question 9, “There were opportunities to ask questions”, reached statistically significant kappa values at -0.163 (P = 0.030), -0.228 (P = 0.036), and -0.114 (P = 0.010), respectively. However, it should be noted that since all these kappa values are negative, they imply that the observed agreement between patients and contact nurses was lower than what would have been expected to occur by chance. Analyses of responses to the open-ended question, “What was the main problem you discussed? Please describe it briefly”, showed that 54% (n = 34) of the patient-contact nurse pairs described not having discussed the similar ”main problem”. This level of agreement can be compared with the response to question 1, “A health problem was identified” (in the dyadic OPTION scale) which reached an agreement of 42% (n = 25) at a tolerance of 0 steps. After categorizing pairs as either “agreeing” or “not agreeing” on the main problem discussed during the encounter, statistically significant differences between “agreeing” and “non-agreeing” pairs were observed for question 9 (“There were opportunities to ask questions”), and question 11 (“During the consultation, a decision was made; or there was an agreement to postpone making the decision”). For “agreeing” pairs, 91.2% (n = 31) reported an agreement (tolerance 0 steps) to question 9 compared to 57.1% (n = 16) of the “non-agreeing” pairs (P = 0.003). For question 11, agreement was observed in 48.5% (n = 16) of the “agreeing” pairs whereas it was observed for 21.4% (n = 6) of the “non-agreeing” pairs (P = 0.035), see Table 2. Factors impacting the level of agreement The results from adjusted and unadjusted linear regression analyses of predictors of differences in agreement (scoring in the dyadic OPTION scale) within patient-contact nurse pairs are presented in Table 3. In both unadjusted and adjusted analyses, the HADS-D score was the only variable significantly associated with variations in scores on the dyadic OPTION scale, with P-values of 0.044 and 0.046, respectively. In the adjusted regression model the difference score in the dyadic OPTION scale within patient-contact nurse pairs increased on average with 0.721 (95% CI 0.014–1.427) points for each increment in the HADS-D score, after controlling for PAM score, patients having college/university education, and contact nurses having specialist nurse education (P = 0.046). Table 3. Regression results identifying predictors of Dyadic OPTION score differences between patients and contact nurses Unadjusted Adjusted a Variable β 95% CI P-value β 95% CI P-value Female 3.189 -2.560; 8.938 0.726 Not in model Age (years) -0.093 -0.301; 0.115 0.374 Not in model HADS-A score (points) 0.285 -0.217; 0.786 0.260 Not in model HADS-D score (points) 0.731 0.022; 1.441 0.044 0.721 0.014; 1.427 0.046 PAM-13 ® score (points) 0.082 -0.116; 0.281 0.410 0.135 -0.057; 0.326 0.166 College/university education -3.721 -8.718; 1.275 0.142 -3.709 -8.530; 1.111 0.129 Specialist nurse education 4.972 -1.142; 11.09 0.109 4.629 -1.301; 10.56 0.124 Notes: HADS, Hospital Anxiety and Depression Scale; PAM, patient activation measure. Statistically significant P-values are given in bold . a Adjusted for HADS-Depression, PAM-13®, patient education level (college/university education yes/no) and contact nurse education level (specialist nurse yes/no). Table 4. Patients responding to questions about perceived participation in the meeting with a contact nurse. Total Agreeing on content? Question Yes, n (%) Yes, n (%) No, n (%) Did the contact nurse use a language you understood (avoided medical words or terms)? 59 (94) 32 (94) 27 (93) Did the contact nurse ask what you knew about your illness before receiving new information? 27 (43) 17(50) 10 (35) Are you satisfied with the conversation with the contact nurse? 60 (95) 32(94) 28 (97) Have you been involved to the extent you wished for the decisions regarding your care today? 55 (87) 31 (91) 24 (83) Note: Response options converted to No (“not at all”) and Yes (“a little”, “quite a lot”, or “very much”). a Of the 63 pairs, 34 (54.0%) pairs were deemed to agree on the content of the discussions in the encounter, according to the open-ended question, while 29 (46.0%) pairs were deemed to not agree. Patients’ perceptions of their participation in the encounter Table 4 presents the patients’ responses to questions related to their perceptions of their participation in the encounter with the contact nurses (study specific questions). Most patients reported that the contact nurses used a language that the patients understood by “avoiding medical words and terminology” (n = 59; 94%), were satisfied with the conversation with the contact nurse (n = 60; 95%), and perceived that they were involved in decisions made to the extent they wished (n = 55; 87%). In contrast, less than half of the patients (n = 27, 43%) reported that they were asked about what they knew about their illness before the contact nurse provided information. Among pairs categorized as either “agreeing” or “not agreeing” on the main problem being discussed during the encounters, 10 (35%) out of 29 patients in the “non-agreeing” pairs reported that the contact nurse had inquired about their prior knowledge before introducing new information. Furthermore, 83% (n = 24) of patients in “non-agreeing” pairs reported that they had not been involved in decisions to the extent they preferred. However, almost all (n = 28; 97%) of the patients in “non-agreeing” pairs expressed being satisfied with the encounter with the contact nurse. Discussion In this cross-sectional study we investigated agreement between cancer patients’ and contact nurses’ perceptions of patients’ participation in care encounters prior to cancer treatment as well as factors contributing to the agreement/disagreement. Agreement within patient-contact nurse pairs was generally low, both in terms of the topics discussed during the encounters (open-ended question) and most questions in the dyadic OPTION scale. An increase in HADS-D scores was significantly associated with greater discrepancies in agreement. Results in context During the critical period between receiving a cancer diagnosis and the initiation of treatment, contact nurses meet with patients to provide information and support in preparation for the upcoming treatment phase. At this stage, a relationship is initiated whereby contact nurses assume a particular responsibility to ensure that the healthcare experience responds to each patient’s individual needs and preferences [5, 38]. Establishing agreement on the content of these encounters is therefore of considerable importance. A high level of agreement—defined as both patients and contact nurses selecting the same response option—for example regarding the opportunity to ask questions (dyadic OPTION question 9, Table 2), is valuable irrespective of whether the opportunity was perceived as high or low. Such agreement provides a shared foundation for subsequent communication. The opportunity to ask questions has been identified as an important facilitator of patient participation [5, 16]. Patients in agreeing pairs were significantly more likely to report sufficient opportunities to ask questions compared with those in non-agreeing pairs. However, it remains unclear whether contact nurses themselves recognized low agreement and whether they had the possibility to arrange follow-up meetings in cases where time constraints may have limited the initial encounter. Information needs have been reported to be high among newly diagnosed cancer patients [39], with experiences of both insufficient information and information overload described [40]. Only 43% (n = 27) of patients in our study reported that the contact nurses asked about their existing knowledge of their illness before providing additional information. Among patients in pairs who disagreed on the \"main problem\" in the open-ended question, an even lower percentage (35%; n = 10) reported that contact nurses had asked about their prior knowledge before presenting further information. This suggests that the information was not consistently tailored to individual patients’ existing knowledge or needs. As a result, some patients may have received too little or insufficient information, while others may have felt overwhelmed by receiving too much information. To prevent this, contact nurses should make the exploration of patients’ prior knowledge and preferences an explicit part of the consultation. Actively encouraging patients to recount the information they have received and to ask questions has been shown to improve comprehension and reduce anxiety, thereby supporting more effective communication and patient participation [13, 41]. It is also known that distress, anxiety, and depression impact the patient’s information recall, especially when a large amount of information is provided within a short time span [13]. Therefore, it is especially important that the contact nurses ask about prior knowledge and understanding, and adapt further information to individual needs, that is, to develop the information exchange. Findings from a related study, which included interviews with patients involved in the present study [38], highlighted the importance of assessing patients' existing knowledge before offering additional information. Having the opportunity to articulate ones previous knowledge and recall what has been communicated facilitates a deeper understanding of the situation [38]. The contact nurses' separate encounters with patients scheduled for curative surgery were arranged immediately after their encounters with the physicians, where the treatment was discussed (during which the contact nurses were present). This may have contributed to the contact nurses not inquiring about the patients' prior knowledge, though this may have been reflected on when treatment information was conveyed. However, the common starting point should have strengthened the consistency regarding what was discussed during the meeting. The question in the dyadic OPTION scale with the lowest agreement reported was “Different sources of information (e.g., leaflets, websites, contact with other people) to help make the decision were offered”. We can only speculate on the reasons for this. It is possible that some patients and contact nurses did, or did not, consider information on paper or web-based information, such as the individual care plans offered to cancer patients in this health-care region, as different sources of information. Another reason for disagreement may have been that patients included external sources of information alongside what was provided by the contact nurses. In the linear regression analyses, we used the HADS sub-scale scores as a continuous variable, an approach which has been found to better capture the variation in scoring than using cut-off values only showing if the score is above or below a specific cut-off threshold [42, 43]. The mean value for depression was comparable to Swedish population data (4.10 compared to 3.98 points), while the mean value for anxiety was considerably higher in our study (7.59 compared to 4.55 points) [44]. This could be expected, since the situation with a newly diagnosed cancer is stressful for most patients. Reported symptoms of depression emerged as the primary factor associated with the level of agreement, whereas no statistically significant association was observed for anxiety. In another study, including newly diagnosed cancer patients those with higher levels of anxiety expressed more concerns and asked more questions [45]. Depression symptoms and being less likely to communicate concerns have been reported to be related to low PAM scores [46, 47]. This highlights the importance of contact nurses’ communication skills and their ability to identify patients who, despite appearing quiet and refraining from asking questions, may need additional support, more time to process information, and/or an opportunity for a follow-up meeting. However, such actions should be initiated by the contact nurse, as patients often hesitate to reach out, not wanting to burden the nurses, who they perceive as having a heavy workload [48]. An interesting finding in our study was that just over half of the patient-contact nurse pairs described the discussion as addressing the same “main problem” (open-ended question), while only 41% reached complete agreement (tolerance of 0 steps) that a health problem had been identified where it was made clear that a decision was needed (dyadic OPTION scale, question 1). Despite this, an overwhelming majority (95%) of the patients were satisfied with the conversations. The reasons for this remain speculative. Although patients may initially express satisfaction with their conversations, their perception may change over time. As additional information is provided, and the patient search additional information themselves throughout the treatment period, they may come to realize that certain details were missing in earlier stages [39]. The risk of miscommunication during this phase of the cancer trajectory should also be emphasized, given the significant safety concerns associated with missed or misunderstood information. Patients may not always interpret information as intended by health care professionals [49]. Therefore, contact nurses must remain vigilant in their communication strategies, as misinterpretations can compromise treatment adherence and hinder effective self-management of side effects [41, 50]. Practical implications It is of the utmost importance that the information and communication between contact nurses and the patients are person-centred. Contact nurses should make efforts to confirm whether they have accurately grasped the individual patient’s concerns and ensure that the patients have comprehended the information provided. Identifying patients’ knowledge, expectations, and thoughts about their illness, planned treatment, and possible side-effects provide opportunities for adaptation of information and support, and give patients possibilities to take active part in their own care. Additionally, contact nurses should have the opportunity to offer follow-up meetings, as patients may hesitate to reach out if they perceive nurses to be overwhelmed by a heavy workload. Providing structured follow-up options may encourage open communication and ensure that patients receive the support they need. Strengths and limitations This study has several strengths, with one of the most important being that both participating parts, patients and contact nurses, responded to the dyadic OPTION scale immediately after their encounter. This approach reduces the risk of either party forgetting details or confusing appointments or information. Behaviour during an encounter is influenced by both parties [45], and capturing the perspectives of each party is therefore essential. It is also noted by Melbourne et al. [35] that optimal data collection from decision-making participants involves posing questions immediately following the encounter, utilizing a dual-perspective approach. Another strength of our study was the use of validated instruments and that patients were consecutively approached during the study recruitment periods. For the patients, the situation may be both intensive and stressful, and it is therefore a strength that 61% of eligible patients were included. Reasons for non-participation are reported. Limiting the number of patients per contact nurse helped mitigate the risk of undue influence from individual nurses on the overall findings. To our knowledge, the dyadic OPTION scale was the best available questionnaire at the time of initiating this study [35], although we found few studies having used it. Due to the scarcity of published research employing the dyadic OPTION scale, it was not possible to compare our findings directly with results from other studies using the same instrument. A key strength of the dyadic OPTION scale is that it allows comparisons of subjective assessments of participation from both patients and health care professionals, which should be considered a strength. However, some limitations must also be acknowledged. The consistently low agreement and negative kappa values observed raise concerns about the dyadic OPTION scale instrument’s validity in the oncology nursing context. The dyadic OPTION scale may not fully capture the nature of decisions made during nursing encounters. It is possible that neither patients nor contact nurses perceived that decisions were being made during these conversations, instead associating “decisions” primarily with medical choices such as treatment or medication. This raises important questions about whether the scale’s items adequately reflect the communicative realities of oncology nursing practice. Another limitation was that the Swedish version has not been validated in a cancer care context [36]. When analysing the open-ended question ( What was the main problem you talked about? Please describe it in a few words ) variations in wording occurred, such as the patient’s response (\"my upcoming treatment\") versus the contact nurse’s response (\"the chemotherapy treatment”) were interpreted as describing the same issue. However, as in all interpretations, there may have been misunderstandings of the short responses. Other limitations include the exclusion of patients who were not proficient in Swedish, as well as those who declined participation due to feeling overwhelmed—both of which may have influenced the results. Feelings of being overwhelmed are common among patients with low activation levels. Previous studies have shown that these individuals often report having fewer opportunities to ask questions when they do not understand the information provided or the plans being discussed [27]. This may also have influenced the results. The contact nurses may have felt evaluated in their professional role, prompting reflections on their own healthcare communication, which could potentially evoke feelings of inadequacy. Additionally, attitudes from colleagues or managers may have influenced their willingness or reluctance to participate in the study. Conclusions Even if most patients were satisfied with their encounters with contact nurses prior to cancer treatment, our results show generally low agreements regarding content and patient participation levels between patients and nurses. Reported symptoms of depression impacted the agreement negatively and did not seem to be picked up by the nurses. The results also showed that the nurses often seem to miss the opportunity to ask about the patient’s previous health-related knowledge and experiences, which may have had a negative impact on the patients’ level of participation during the encounter. A more person-centred communication, including asking open questions related to previous knowledge and experiences could foster active patient participation in cancer care. These findings highlight the broader relevance of person-centred communication across diverse healthcare settings, underscoring the need for all care professionals to actively ensure that they understand each patient's individual concerns. Abbreviations CI - confidence interval HADS - The Hospital Anxiety and Depression Scale HADS-A – anxiety symptoms HADS-D – depression symptoms PAM - Patient Activation Meassure SD – standard deviations Declarations Data availability Data are available upon reasonable request. Ethical restrictions related to participant confidentiality prohibit the authors from making the data set publicly available. During the consent process, participants were explicitly guaranteed that the data would only be seen by members of the study team. For any discussions about the data set, please contact the corresponding author. Ethics approval and consent to participate Ethical approval to perform the study was obtained from the Swedish Ethical Review Authority (Dnr 2021-03751). The study adhered to the principles of the Helsinki Declaration and Good Clinical Practice. All participants provided written informed consent to participate in the study. Funding This work was supported by Regional Cancer Centre Stockholm Gotland. Consent for publication Not applicable. Competing interests The authors declare no competing interests. References Ekman I, Swedberg K, Taft C, Lindseth A, Norberg A, Brink E, Carlsson J, Dahlin-Ivanoff S, Johansson I-L, Kjellgren K et al : Person-Centered Care — Ready for Prime Time . European Journal of Cardiovascular Nursing 2011, 10 (4):248–251. Gregory J: Understanding the communication skills that support nurses to provide person-centred care . Nursing standard 2024, 39 (2):61–66. Jenerette CM, Mayer DK: Patient-Provider Communication: the Rise of Patient Engagement . 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Cite Share Download PDF Status: Under Review Version 1 posted Reviewers agreed at journal 08 Mar, 2026 Reviews received at journal 02 Feb, 2026 Reviewers agreed at journal 23 Jan, 2026 Reviewers invited by journal 21 Jan, 2026 Editor invited by journal 19 Jan, 2026 Editor assigned by journal 18 Jan, 2026 Submission checks completed at journal 18 Jan, 2026 First submitted to journal 14 Jan, 2026 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. 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10:20:31\",\"extension\":\"html\",\"order_by\":18,\"title\":\"\",\"display\":\"\",\"copyAsset\":false,\"role\":\"acdc-reference\",\"size\":204389,\"visible\":true,\"origin\":\"\",\"legend\":\"\",\"description\":\"\",\"filename\":\"earlyproof.html\",\"url\":\"https://assets-eu.researchsquare.com/files/rs-8603011/v1/692dbf6e216d7c24dc5ab24b.html\"},{\"id\":101074249,\"identity\":\"24c16d32-8aad-4e8c-a784-a588e28aeab5\",\"added_by\":\"auto\",\"created_at\":\"2026-01-25 10:20:31\",\"extension\":\"png\",\"order_by\":1,\"title\":\"Figure 1\",\"display\":\"\",\"copyAsset\":false,\"role\":\"figure\",\"size\":106520,\"visible\":true,\"origin\":\"\",\"legend\":\"\\u003cp\\u003eFlowchart for inclusion of patients in the study\\u003c/p\\u003e\",\"description\":\"\",\"filename\":\"1.png\",\"url\":\"https://assets-eu.researchsquare.com/files/rs-8603011/v1/90e5b8e34a9850624f64f846.png\"},{\"id\":101298980,\"identity\":\"ad0ac5c6-3008-4eae-b071-912f41aa87f3\",\"added_by\":\"auto\",\"created_at\":\"2026-01-28 09:38:36\",\"extension\":\"pdf\",\"order_by\":0,\"title\":\"\",\"display\":\"\",\"copyAsset\":false,\"role\":\"manuscript-pdf\",\"size\":3073753,\"visible\":true,\"origin\":\"\",\"legend\":\"\",\"description\":\"\",\"filename\":\"manuscript.pdf\",\"url\":\"https://assets-eu.researchsquare.com/files/rs-8603011/v1/4df2b98b-8b8f-450f-b7c3-07a8341b4fa6.pdf\"}],\"financialInterests\":\"No competing interests reported.\",\"formattedTitle\":\"Patient and contact nurse perceptions regarding patient participation during encounters prior to cancer treatment-a cross-sectional study\",\"fulltext\":[{\"header\":\"Background\",\"content\":\"\\u003cp\\u003eAdapting treatment and care-related information to align with the patients\\u0026rsquo; needs and levels of understanding is crucial for supporting informed health decisions and represents a cornerstone of person-centred care [1, 2]. Communication, as a process of interaction and information exchange, has been identified as a fundamental element of person-centred care [2-4]. Person-centred communication, founded on trust and mutual respect, involves addressing the patient\\u0026rsquo;s needs, perspectives, and understanding of their situation [5, 6], actively listening to the patient, and focusing on strengthening their resources. This approach enhances the patient\\u0026rsquo;s understanding and overall experience of their situation [2, 7].\\u0026nbsp;\\u003c/p\\u003e\\n\\u003cp\\u003eFor patients diagnosed with cancer, nurses\\u0026rsquo; communication skills have been found to impact both the patients\\u0026rsquo; satisfaction with their own care and their psychological well-being [8]. Additionally, the nurses\\u0026rsquo; support encourages patients to participate actively in their own care, which improves positive health outcomes [9, 10]. Patients often have substantial information needs at the time of cancer diagnosis, which should be tailored to their individual circumstances and accompanied by guidance using various informational resources [11]. How information is conveyed and understood plays a pivotal role, as miscommunication may result in conflicting expectations, intentions, and outcomes [4, 12-14]. Many patients prefer to take an active role in their own care and therefore need clear, concise information regarding potential treatment side-effects and effective management strategies [15, 16]. Overall, patients\\u0026apos; satisfaction with their care, their capacity to cope with the disease and treatment as well as their ability to handle side-effects in daily life are strongly influenced by the relational quality of communications. This is especially important when addressing individual needs in the context of a newly diagnosed cancer [4, 6, 13].\\u0026nbsp;\\u003c/p\\u003e\\n\\u003cp\\u003eThe contact nurse in cancer care, a role established in Sweden during the 2010s [17], aims to improve information exchange and communication between patients and health care professionals. The contact nurse role also aims to enhance accessibility, continuity, safety, and active patient participation. Access to contact nurses in cancer care has been found to be associated with higher patient satisfaction, better possibilities for active participation in decisions regarding the patient\\u0026rsquo;s own care as well as more appropriate and understandable information about the disease [18]. The first meeting between contact nurses and patients occurs at the time of, or shortly after, the patients receive their cancer diagnosis, with the contact nurses helping to clarify information about the diagnosis, planned treatment, and care, as well as offering psychological support. Their role extends into the treatment phase, ensuring continued support.\\u003c/p\\u003e\\n\\u003cp\\u003eShared decision-making has been described as a collaborative process between health care professionals and patients where treatment and self-management decisions are made, while considering the patient\\u0026apos;s preferences [16, 19]. Research on shared decision-making in cancer care mainly focuses on medical treatment options [19, 20], but has also included decisions related to symptom management [21, 22]. Patients require support not only in expressing their needs and raising questions but also emotionally, in preparation for active involvement in decisions regarding their own care\\u0026nbsp;[23].\\u003c/p\\u003e\\n\\u003cp\\u003ePatients\\u0026rsquo; reactions to a cancer diagnosis vary, but feelings of shock, fear, and denial are common. Anxiety and depression have been found to affect patients\\u0026apos; ability to recall information [13, 14]. Information overload may be experienced, and the risk of missed information is not negligible [14, 24]. There is often a brief time window between receiving the diagnosis and the start of treatment, leaving limited time for the contact nurse to clarify and repeat information as well as for patients to fully process the provided information. A better understanding of the contact nurse\\u0026rsquo;s ability to involve patients in decisions regarding information provision and self-management options prior to the start of cancer treatment is thus needed.\\u0026nbsp;\\u003c/p\\u003e\\n\\u003ch2\\u003eAim\\u003c/h2\\u003e\\n\\u003cp\\u003eThe primary aim of this study was to examine the level of agreement/disagreement between patients\\u0026rsquo; and contact nurses\\u0026rsquo; perception of patient participation in care encounters before the start of cancer treatment. In addition, we aimed to identify factors that may impact the level of agreement/disagreement.\\u003c/p\\u003e\"},{\"header\":\"Methods\",\"content\":\"\\u003ch2\\u003eInclusion procedure\\u003c/h2\\u003e\\n\\u003cp\\u003eEligible patients were identified either during the referral review (for gynaecological and upper gastrointestinal cancers) or at a multidisciplinary conference (for gynaecological and head and neck cancers). Patients also needed to have a scheduled appointment with a contact nurse participating in the study. Those patients who agreed to be contacted by the researcher received written study information either by regular mail (sent by a secretary) or handed out in person by a nurse at the outpatient clinic after their physician appointment.\\u003c/p\\u003e\\n\\u003cp\\u003ePatients who consented were contacted within a week by the responsible researcher, who provided a verbal overview of the study and responded to any questions from the patients. Patients who gave oral informed consent to participate completed the questionnaires (described below). The researcher met with patients before their appointment with the contact nurse to obtain written informed consent and collect the completed questionnaires.\\u003c/p\\u003e\\n\\u003cp\\u003eThe contact nurses received study information (verbal and in writing) from the researcher during dedicated meetings at their workplaces. Contact nurses who started their employment during the study period received individual information together with the information letter. The contact nurses who agreed to participate signed an informed consent form.\\u0026nbsp;\\u003c/p\\u003e\\n\\u003cp\\u003eImmediately following the encounter, the researcher met with both the patient and the contact nurse to distribute the dyadic OPTION scale (described below). Each pair completed the questionnaire separately and returned it to the researcher. In total, 63 patient-contact nurse pairs were included in the study.\\u0026nbsp;\\u003c/p\\u003e\\n\\u003ch2\\u003eQuestionnaires and instruments\\u003c/h2\\u003e\\n\\u003cp\\u003e\\u003cem\\u003eThe Patient Activation Measure PAM-13\\u003csup\\u003e\\u0026reg;\\u003c/sup\\u003e\\u003c/em\\u003e\\u003cbr\\u003eThe Patient Activation Measure (PAM-13\\u003csup\\u003e\\u0026reg;\\u003c/sup\\u003e) was used to collect data on patients\\u0026rsquo; activation level. This instrument has been developed to measure how people estimate their knowledge, skills, beliefs, and confidence in taking an active role in their own care [25]. It has been widely used for measuring patient activation in different populations, including patients with cancer [26-28], and is validated in Swedish [29]. The instrument consists of\\u0026nbsp;13 items with responses given on a four-point verbal scale (without predefined numeric scoring): \\u0026ldquo;disagree strongly\\u0026rdquo;, \\u0026ldquo;disagree\\u0026rdquo;, \\u0026ldquo;agree\\u0026rdquo; and \\u0026ldquo;agree strongly\\u0026rdquo;, as well as a \\u0026ldquo;not applicable\\u0026rdquo; option. Scores are transformed to a 0\\u0026ndash;100 scale and thereafter converted into 4 ordinal levels: PAM 1 (\\u003cem\\u003eDisengaged and overwhelmed\\u003c/em\\u003e), PAM 2 (\\u003cem\\u003eBecoming aware but still struggling\\u003c/em\\u003e), PAM 3 (\\u003cem\\u003eTaking actions and gaining control\\u003c/em\\u003e), and PAM 4 (\\u003cem\\u003eMaintaining behaviours and pushing further\\u003c/em\\u003e). Higher scores and levels indicate higher confidence in the respondent\\u0026rsquo;s self-management ability\\u0026nbsp;[25].\\u003c/p\\u003e\\n\\u003cp\\u003e\\u003cem\\u003eThe Hospital Anxiety and Depression Scale (HADS)\\u003c/em\\u003e\\u0026nbsp;\\u003cbr\\u003eThe Hospital Anxiety and Depression Scale (HADS) [30] was used to measure the patients\\u0026rsquo; symptoms of anxiety and/or depression. HADS contains two subscales, measuring symptoms of anxiety (HADS-A) and depression (HADS-D), respectively, with seven items in each subscale. Scores for each item range from 0 to 3 points, with higher scores indicating a worse condition. A total subscale score of \\u0026le; 7 points (out of a maximum of 21 points) denotes that there are no clinical symptoms of anxiety /depression, while a score of 8\\u0026ndash;21 points indicate clinical symptoms of anxiety /depression. The scale has been translated to Swedish and validated in a Swedish context [31, 32].\\u0026nbsp;\\u003c/p\\u003e\\n\\u003cp\\u003e\\u003cem\\u003eThe dyadic OPTION scale\\u0026nbsp;\\u003c/em\\u003e\\u003cbr\\u003eTo measure the extent to which health care professionals involve patients in shared decision-making, the OPTION scale has been developed [33, 34]. This instrument has been further developed into a dyadic version, the dyadic\\u003cem\\u003e\\u0026nbsp;\\u003c/em\\u003eOPTION scale, in which both patients and health care professionals rate the perceived patient involvement\\u0026nbsp;in shared decision-making\\u0026nbsp;[35], offering a dual perspective to assess agreement in interactions during encounters. The questionnaire consists of 12 questions, with responses given on a four-point verbal scale, (\\u0026ldquo;completely disagree\\u0026rdquo;, \\u0026ldquo;disagree\\u0026rdquo;, \\u0026ldquo;agree\\u0026rdquo;, or \\u0026ldquo;completely agree\\u0026rdquo;) and one open-ended question (\\u003cem\\u003eWhat was the main problem you talked about? Please describe it in a few words\\u003c/em\\u003e). The responses from each participant are summed to yield a score ranging from 12 to 48 points. The instrument is available in both a patient and a health care professionals\\u0026rsquo; version, aiming to capture both perspectives by using corresponding questions. The patient version has been translated into Swedish and validated within Swedish psychiatric care\\u0026nbsp;[36].\\u003c/p\\u003e\\n\\u003cp\\u003e\\u003cem\\u003eStudy specific questions\\u003c/em\\u003e\\u003cbr\\u003e\\u0026nbsp;The study specific questionnaire (developed for the study by the research team and used in previous studies) regarding patients\\u0026rsquo; perceptions of their participation in the encounter included the following four questions:\\u0026nbsp;\\u003c/p\\u003e\\n\\u003cul\\u003e\\n \\u003cli\\u003e\\u0026ldquo;Did the contact nurse use a language you understood (avoided medical words or terms)?\\u0026rdquo;,\\u0026nbsp;\\u003c/li\\u003e\\n \\u003cli\\u003e\\u0026ldquo;Did the contact nurse ask about your previous knowledge about your disease before providing information?\\u0026rdquo;,\\u0026nbsp;\\u003c/li\\u003e\\n \\u003cli\\u003e\\u0026ldquo;Are you satisfied with the conversation with the contact nurse?\\u0026rdquo;, and\\u0026nbsp;\\u003c/li\\u003e\\n \\u003cli\\u003e\\u0026ldquo;Have you been involved to the extent you wished in the decisions regarding your care today?\\u0026rdquo;.\\u0026nbsp;\\u003c/li\\u003e\\n\\u003c/ul\\u003e\\n\\u003cp\\u003eThe response format was a four-point verbal scale without predefined numeric scoring (\\u0026ldquo;not at all\\u0026rdquo;, \\u0026ldquo;a little\\u0026rdquo;, \\u0026ldquo;quite a lot\\u0026rdquo;, or \\u0026ldquo;very much\\u0026rdquo;). Additionally, demographic data on age (years), gender (male/female), and education level (college/university education yes/no) were collected from the patients. Contact nurses reported their education level as having a specialist nurse education (yes/no).\\u003c/p\\u003e\\n\\u003ch2\\u003eStatistical analyses\\u003c/h2\\u003e\\n\\u003cp\\u003eDescriptive statistics for the patients and contact nurses are presented as frequencies and percentages, n (%), for categorical data, while ordinal, discrete, and continuous data are reported as mean values with accompanying standard deviations (SDs). For the study specific questions, the responses were dichotomized as Yes (if responding \\u0026ldquo;a little\\u0026rdquo;, \\u0026ldquo;quite a lot\\u0026rdquo;, or \\u0026ldquo;very much\\u0026rdquo;) or No (if responding \\u0026ldquo;not at all\\u0026rdquo;).\\u0026nbsp;\\u003c/p\\u003e\\n\\u003cp\\u003eAnalyses of the agreement between patient\\u0026rsquo;s and contact nurse\\u0026rsquo;s scores for the dyadic OPTION scale were conducted by calculating both simple and extended percentage agreements, as well as Cohen\\u0026apos;s kappa, for each of the 12 dyads separately. Percentage agreements are presented with tolerances of 0 and 1 steps, where the tolerance reflects the number of steps by which the patient-contact nurse pair may differ on the dyadic OPTION scale while still being considered in agreement. For instance, a tolerance of 0 steps signifies complete agreement, with both patient and contact nurse selecting the same response alternative, e.g. both giving the answer \\u0026ldquo;disagree\\u0026rdquo;. A tolerance of 1 step indicates a difference between the patient and the contact nurse where e.g. the patient may give the answer \\u0026ldquo;completely disagree\\u0026rdquo; while the contact nurse gives the answer \\u0026ldquo;disagree\\u0026rdquo;, which is still regarded as the patient and the contact nurse being in agreement at this tolerance level. In order to take the dependence within patient-contact nurse pairs caused by the same contact nurse occurring in several pairs into account, Cohen\\u0026rsquo;s kappa is presented with accompanying P-values and 95% confidence intervals (CIs) calculated using the bootstrap percentile method with R = 10,000 bootstrap replicates.\\u003c/p\\u003e\\n\\u003cp\\u003eAssociations between patient characteristics, scores from the HADS-A, HADS-D, and PAM-13\\u003cem\\u003e\\u003csup\\u003e\\u0026reg;\\u003c/sup\\u003e\\u003c/em\\u003e instruments as well as patient and contact nurse education level (independent variables) and differences (within patients-contact nurse pairs) in dyadic OPTION score (dependent variable) were analysed using adjusted and unadjusted linear regression models. The adjusted regression models were constructed by using a backward stepwise procedure with an inclusion P-value level of \\u0026le; 0.20, after starting with all independent variables. Statistical analyses were performed using IBM SPSS 27 (IBM, Armonk, NY) and R version 4.3.1 or higher (R Foundation for Statistical Computing, Vienna, Austria) with two-sided P-values \\u0026lt; 0.05 considered statistically significant. Missing values were in all analyses handled using pairwise deletion.\\u003c/p\\u003e\\n\\u003ch2\\u003eAnalysis of the of\\u0026nbsp;open-ended question\\u003c/h2\\u003e\\n\\u003cp\\u003eThe responses to the open-ended question in the dyadic OPTION scale (\\u003cem\\u003eWhat was the main problem you talked about? Please describe it in a few words\\u003c/em\\u003e) of each patient-contact nurse pair were assessed using a manifest qualitative content analysis [37]. The answers from patients and contact nurses were read and labelled with a code separately by two researchers and then compared, to identify pairs with or without agreement of the content.\\u003c/p\\u003e\\n\\u003ch2\\u003eEthics approval\\u003c/h2\\u003e\\n\\u003cp\\u003eEthical approval to perform the study was obtained from the Swedish Ethical Review Authority (Dnr 2021-03751).\\u0026nbsp;\\u003c/p\\u003e\"},{\"header\":\"Results\",\"content\":\"\\u003cp\\u003eCharacteristics of the 63 patients and 18 contact nurses participating in the present study are presented in Table 1. Each contact nurse met between 1 and 8 patients. The participating patients were between 35 and 86 years old, with a mean (SD) age of 62 (12) years. Most patients (n = 47; 75%) were women, with a majority (n = 35; 56%) having a college/university education. Gynaecological cancer was the most common type of cancer (n = 30; 48%). Among the contact nurses, 67% (n = 12) had undergone specialist training. In total, 28 (45%) of the patients reported clinical symptoms of anxiety (HADS score \\u0026ge; 8 points) while 10 (16%) patients reported clinical symptoms of depression (HADS score \\u0026ge; 8 points). A total of 48 (76%) patients reported PAM scores at level 3 or 4, indicating a high activation level.\\u003c/p\\u003e\\n\\u003cp\\u003e\\u003cstrong\\u003eTable 1.\\u003c/strong\\u003e Characteristics of the 63 patients and 18 contact nurses included in the study.\\u003c/p\\u003e\\n\\u003ctable border=\\\"0\\\" cellspacing=\\\"0\\\" cellpadding=\\\"0\\\"\\u003e\\n \\u003ctbody\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd valign=\\\"top\\\"\\u003e\\n \\u003cp\\u003e\\u003cstrong\\u003eGroup\\u003c/strong\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\"\\u003e\\n \\u003cp\\u003e\\u003cstrong\\u003eVariable\\u003c/strong\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\"\\u003e\\n \\u003cp\\u003e\\u003cstrong\\u003eValue\\u003c/strong\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd valign=\\\"top\\\"\\u003e\\n \\u003cp\\u003ePatients\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\"\\u003e\\n \\u003cp\\u003eAge (years), mean (SD; min\\u0026ndash;max)\\u0026nbsp;\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\"\\u003e\\n \\u003cp\\u003e62 (12; 35\\u0026ndash;86)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd valign=\\\"top\\\"\\u003e\\n \\u003cp\\u003e\\u0026nbsp;\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\"\\u003e\\n \\u003cp\\u003eGender, n (%)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\"\\u003e\\n \\u003cp\\u003e\\u0026nbsp;\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd valign=\\\"top\\\"\\u003e\\n \\u003cp\\u003e\\u0026nbsp;\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\"\\u003e\\n \\u003cul\\u003e\\n \\u003cli\\u003eFemale\\u003c/li\\u003e\\n \\u003c/ul\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\"\\u003e\\n \\u003cp\\u003e47 (75)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd valign=\\\"top\\\"\\u003e\\n \\u003cp\\u003e\\u0026nbsp;\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\"\\u003e\\n \\u003cp\\u003eEducation, n (%)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\"\\u003e\\n \\u003cp\\u003e\\u0026nbsp;\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd valign=\\\"top\\\"\\u003e\\n \\u003cp\\u003e\\u0026nbsp;\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\"\\u003e\\n \\u003cul\\u003e\\n \\u003cli\\u003eUniversity or college\\u003c/li\\u003e\\n \\u003c/ul\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\"\\u003e\\n \\u003cp\\u003e35 (56)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd valign=\\\"top\\\"\\u003e\\n \\u003cp\\u003e\\u0026nbsp;\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\"\\u003e\\n \\u003cp\\u003eDiagnosis, n (%)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\"\\u003e\\n \\u003cp\\u003e\\u0026nbsp;\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd valign=\\\"top\\\"\\u003e\\n \\u003cp\\u003e\\u0026nbsp;\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\"\\u003e\\n \\u003cul\\u003e\\n \\u003cli\\u003eGynecological cancer\\u003c/li\\u003e\\n \\u003c/ul\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\"\\u003e\\n \\u003cp\\u003e30 (48)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd valign=\\\"top\\\"\\u003e\\n \\u003cp\\u003e\\u0026nbsp;\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\"\\u003e\\n \\u003cul\\u003e\\n \\u003cli\\u003eHead \\u0026amp; Neck cancer\\u003c/li\\u003e\\n \\u003c/ul\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\"\\u003e\\n \\u003cp\\u003e27 (43)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd valign=\\\"top\\\"\\u003e\\n \\u003cp\\u003e\\u0026nbsp;\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\"\\u003e\\n \\u003cul\\u003e\\n \\u003cli\\u003eUpper gastrointestinal cancer\\u003c/li\\u003e\\n \\u003c/ul\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\"\\u003e\\n \\u003cp\\u003e6 (9)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd valign=\\\"top\\\"\\u003e\\n \\u003cp\\u003e\\u0026nbsp;\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\"\\u003e\\n \\u003cp\\u003e\\u003cem\\u003eQuestionnaires\\u0026nbsp;\\u003c/em\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\"\\u003e\\n \\u003cp\\u003e\\u0026nbsp;\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd valign=\\\"top\\\"\\u003e\\n \\u003cp\\u003e\\u0026nbsp;\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\"\\u003e\\n \\u003cp\\u003eHADS-A score (points), mean (SD)\\u0026nbsp;\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\"\\u003e\\n \\u003cp\\u003e7.59 (5.02)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd valign=\\\"top\\\"\\u003e\\n \\u003cp\\u003e\\u0026nbsp;\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\"\\u003e\\n \\u003cul\\u003e\\n \\u003cli\\u003e\\u0026le; 7 points, n (%)\\u003c/li\\u003e\\n \\u003c/ul\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\"\\u003e\\n \\u003cp\\u003e35 (55)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd valign=\\\"top\\\"\\u003e\\n \\u003cp\\u003e\\u0026nbsp;\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\"\\u003e\\n \\u003cul\\u003e\\n \\u003cli\\u003e\\u0026ge; 8 points,\\u0026nbsp;n (%)\\u003c/li\\u003e\\n \\u003c/ul\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\"\\u003e\\n \\u003cp\\u003e28 (45)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd valign=\\\"top\\\"\\u003e\\n \\u003cp\\u003e\\u0026nbsp;\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\"\\u003e\\n \\u003cp\\u003eHADS-D score (points), mean (SD)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\"\\u003e\\n \\u003cp\\u003e4.10 (3.47)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd valign=\\\"top\\\"\\u003e\\n \\u003cp\\u003e\\u0026nbsp;\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\"\\u003e\\n \\u003cul\\u003e\\n \\u003cli\\u003e\\u0026le; 7 points, n (%)\\u003c/li\\u003e\\n \\u003c/ul\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\"\\u003e\\n \\u003cp\\u003e53 (84)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd valign=\\\"top\\\"\\u003e\\n \\u003cp\\u003e\\u0026nbsp;\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\"\\u003e\\n \\u003cul\\u003e\\n \\u003cli\\u003e\\u0026ge; 8 points,\\u0026nbsp;n (%)\\u003c/li\\u003e\\n \\u003c/ul\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\"\\u003e\\n \\u003cp\\u003e10 (16)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd valign=\\\"top\\\"\\u003e\\n \\u003cp\\u003e\\u0026nbsp;\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\"\\u003e\\n \\u003cp\\u003ePAM-13\\u003csup\\u003e\\u0026reg;\\u003c/sup\\u003e level\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\"\\u003e\\n \\u003cp\\u003e\\u0026nbsp;\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd valign=\\\"top\\\"\\u003e\\n \\u003cp\\u003e\\u0026nbsp;\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\"\\u003e\\n \\u003cul\\u003e\\n \\u003cli\\u003eLow (level 1 or 2),\\u0026nbsp;n (%)\\u003c/li\\u003e\\n \\u003c/ul\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\"\\u003e\\n \\u003cp\\u003e15 (24)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd valign=\\\"top\\\"\\u003e\\n \\u003cp\\u003e\\u0026nbsp;\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\"\\u003e\\n \\u003cul\\u003e\\n \\u003cli\\u003eHigh (level 3 or 4),\\u0026nbsp;n (%)\\u003c/li\\u003e\\n \\u003c/ul\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\"\\u003e\\n \\u003cp\\u003e48 (76)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd valign=\\\"top\\\"\\u003e\\n \\u003cp\\u003eContact nurses\\u0026nbsp;\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\"\\u003e\\n \\u003cp\\u003eEducation, n (%)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\"\\u003e\\n \\u003cp\\u003e\\u0026nbsp;\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd valign=\\\"top\\\"\\u003e\\n \\u003cp\\u003e\\u0026nbsp;\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\"\\u003e\\n \\u003cul\\u003e\\n \\u003cli\\u003eSpecialist nurse\\u0026nbsp;\\u003c/li\\u003e\\n \\u003c/ul\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\"\\u003e\\n \\u003cp\\u003e12 (67)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd valign=\\\"top\\\"\\u003e\\n \\u003cp\\u003e\\u0026nbsp;\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\"\\u003e\\n \\u003cp\\u003eNumber of patients per contact nurse, n (%)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\"\\u003e\\n \\u003cp\\u003e\\u0026nbsp;\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd valign=\\\"top\\\"\\u003e\\n \\u003cp\\u003e\\u0026nbsp;\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\"\\u003e\\n \\u003cul\\u003e\\n \\u003cli\\u003e1\\u0026ndash;3\\u003c/li\\u003e\\n \\u003c/ul\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\"\\u003e\\n \\u003cp\\u003e8 (44)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd valign=\\\"top\\\"\\u003e\\n \\u003cp\\u003e\\u0026nbsp;\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\"\\u003e\\n \\u003cul\\u003e\\n \\u003cli\\u003e4\\u0026ndash;6\\u003c/li\\u003e\\n \\u003c/ul\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\"\\u003e\\n \\u003cp\\u003e7 (39)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd valign=\\\"top\\\"\\u003e\\n \\u003cp\\u003e\\u0026nbsp;\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\"\\u003e\\n \\u003cul\\u003e\\n \\u003cli\\u003e7\\u0026ndash;8\\u003c/li\\u003e\\n \\u003c/ul\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\"\\u003e\\n \\u003cp\\u003e3 (17)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003c/tbody\\u003e\\n\\u003c/table\\u003e\\n\\u003cp\\u003eNotes: HADS, Hospital Anxiety and Depression Scale; PAM, patient activation measure; SD, standard deviation. There were no missing values for any of the variables.\\u003c/p\\u003e\\n\\u003cp\\u003e\\u0026nbsp;\\u003c/p\\u003e\\n\\u003cp\\u003e\\u003cstrong\\u003eTable 2.\\u003c/strong\\u003e Percentage agreements and Cohens\\u0026rsquo;s kappa for the 12 questions in the dyadic Option scale\\u003c/p\\u003e\\n\\u003ctable border=\\\"0\\\" cellspacing=\\\"0\\\" cellpadding=\\\"0\\\" width=\\\"100%\\\"\\u003e\\n \\u003ctbody\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd valign=\\\"bottom\\\" style=\\\"width: 38px;\\\"\\u003e\\n \\u003cp\\u003e\\u003cstrong\\u003eThe dyadic Option scale\\u003c/strong\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd rowspan=\\\"2\\\" valign=\\\"bottom\\\" style=\\\"width: 10px;\\\"\\u003e\\n \\u003cp\\u003e\\u003cstrong\\u003eNumber of pairs\\u003c/strong\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd colspan=\\\"3\\\" valign=\\\"bottom\\\" style=\\\"width: 14px;\\\"\\u003e\\n \\u003cp\\u003e\\u003cstrong\\u003eTolerance, steps\\u003c/strong\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd colspan=\\\"2\\\" valign=\\\"bottom\\\" style=\\\"width: 14px;\\\"\\u003e\\n \\u003cp\\u003e\\u003cstrong\\u003eCohen\\u0026rsquo;s kappa\\u003c/strong\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd colspan=\\\"3\\\" valign=\\\"bottom\\\" style=\\\"width: 21px;\\\"\\u003e\\n \\u003cp\\u003e\\u003cstrong\\u003eOpen-ended question:\\u003cbr\\u003e\\u0026nbsp;Agreeing on content?\\u003c/strong\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd valign=\\\"bottom\\\" style=\\\"width: 38px;\\\"\\u003e\\n \\u003cp\\u003e\\u003cstrong\\u003eQuestion\\u003c/strong\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"bottom\\\" style=\\\"width: 4px;\\\"\\u003e\\n \\u003cp\\u003e\\u003cstrong\\u003e0\\u003c/strong\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"bottom\\\" style=\\\"width: 5px;\\\"\\u003e\\n \\u003cp\\u003e\\u003cstrong\\u003e1\\u003c/strong\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"bottom\\\" style=\\\"width: 5px;\\\"\\u003e\\n \\u003cp\\u003e\\u003cstrong\\u003ekappa\\u003c/strong\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"bottom\\\" style=\\\"width: 8px;\\\"\\u003e\\n \\u003cp\\u003e\\u003cstrong\\u003e95% CI\\u003c/strong\\u003e\\u003csup\\u003ea\\u003c/sup\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"bottom\\\" style=\\\"width: 6px;\\\"\\u003e\\n \\u003cp\\u003e\\u003cstrong\\u003eP-value\\u003c/strong\\u003e\\u003csup\\u003ea,b\\u003c/sup\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"bottom\\\" style=\\\"width: 7px;\\\"\\u003e\\n \\u003cp\\u003e\\u003cstrong\\u003eYes, n (%)\\u003c/strong\\u003e\\u003csup\\u003ec\\u003c/sup\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"bottom\\\" style=\\\"width: 7px;\\\"\\u003e\\n \\u003cp\\u003e\\u003cstrong\\u003eNo, n (%)\\u003c/strong\\u003e\\u003csup\\u003ec\\u003c/sup\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"bottom\\\" style=\\\"width: 6px;\\\"\\u003e\\n \\u003cp\\u003e\\u003cstrong\\u003eP-value\\u003c/strong\\u003e\\u003csup\\u003ed\\u003c/sup\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 38px;\\\"\\u003e\\n \\u003cp\\u003e1. A health problem was identified, where it was made clear that a decision was needed.\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 10px;\\\"\\u003e\\n \\u003cp\\u003e60\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 4px;\\\"\\u003e\\n \\u003cp\\u003e41.7\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 5px;\\\"\\u003e\\n \\u003cp\\u003e76.7\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 5px;\\\"\\u003e\\n \\u003cp\\u003e0.079\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 8px;\\\"\\u003e\\n \\u003cp\\u003e-0.092; 0.249\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 6px;\\\"\\u003e\\n \\u003cp\\u003e0.373\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 7px;\\\"\\u003e\\n \\u003cp\\u003e13 (40.6)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 7px;\\\"\\u003e\\n \\u003cp\\u003e12 (42.9)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 6px;\\\"\\u003e\\n \\u003cp\\u003e1.000\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 38px;\\\"\\u003e\\n \\u003cp\\u003e2. More than one way to manage the health problem was described.\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 10px;\\\"\\u003e\\n \\u003cp\\u003e60\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 4px;\\\"\\u003e\\n \\u003cp\\u003e31.7\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 5px;\\\"\\u003e\\n \\u003cp\\u003e78.3\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 5px;\\\"\\u003e\\n \\u003cp\\u003e-0.108\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 8px;\\\"\\u003e\\n \\u003cp\\u003e-0.249; 0.027\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 6px;\\\"\\u003e\\n \\u003cp\\u003e0.119\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 7px;\\\"\\u003e\\n \\u003cp\\u003e14 (42.4)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 7px;\\\"\\u003e\\n \\u003cp\\u003e5 (18.5)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 6px;\\\"\\u003e\\n \\u003cp\\u003e0.057\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 38px;\\\"\\u003e\\n \\u003cp\\u003e3. Different sources of information (e.g., leaflets, websites, contact with other people) to help make the decision were offered.\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 10px;\\\"\\u003e\\n \\u003cp\\u003e63\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 4px;\\\"\\u003e\\n \\u003cp\\u003e14.3\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 5px;\\\"\\u003e\\n \\u003cp\\u003e44.4\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 5px;\\\"\\u003e\\n \\u003cp\\u003e0.001\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 8px;\\\"\\u003e\\n \\u003cp\\u003e-0.080; 0.085\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 6px;\\\"\\u003e\\n \\u003cp\\u003e0.963\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 7px;\\\"\\u003e\\n \\u003cp\\u003e5 (14.7)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 7px;\\\"\\u003e\\n \\u003cp\\u003e4 (13.8)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 6px;\\\"\\u003e\\n \\u003cp\\u003e1.000\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 38px;\\\"\\u003e\\n \\u003cp\\u003e4. Different options (including the possibility of doing nothing) were discussed.\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 10px;\\\"\\u003e\\n \\u003cp\\u003e59\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 4px;\\\"\\u003e\\n \\u003cp\\u003e30.5\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 5px;\\\"\\u003e\\n \\u003cp\\u003e59.3\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 5px;\\\"\\u003e\\n \\u003cp\\u003e0.084\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 8px;\\\"\\u003e\\n \\u003cp\\u003e-0.066; 0.238\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 6px;\\\"\\u003e\\n \\u003cp\\u003e0.283\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 7px;\\\"\\u003e\\n \\u003cp\\u003e8 (25.0)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 7px;\\\"\\u003e\\n \\u003cp\\u003e10 (37.0)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 6px;\\\"\\u003e\\n \\u003cp\\u003e0.399\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 38px;\\\"\\u003e\\n \\u003cp\\u003e5. The advantages, disadvantages and possible outcomes of options were discussed.\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 10px;\\\"\\u003e\\n \\u003cp\\u003e58\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 4px;\\\"\\u003e\\n \\u003cp\\u003e17.2\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 5px;\\\"\\u003e\\n \\u003cp\\u003e69.0\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 5px;\\\"\\u003e\\n \\u003cp\\u003e-0.163\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 8px;\\\"\\u003e\\n \\u003cp\\u003e-0.308; -0.017\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 6px;\\\"\\u003e\\n \\u003cp\\u003e\\u003cstrong\\u003e0.030\\u003c/strong\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 7px;\\\"\\u003e\\n \\u003cp\\u003e6 (20.0)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 7px;\\\"\\u003e\\n \\u003cp\\u003e4 (14.3)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 6px;\\\"\\u003e\\n \\u003cp\\u003e0.732\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 38px;\\\"\\u003e\\n \\u003cp\\u003e6. Ideas or expectations about managing the health problem were discussed.\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 10px;\\\"\\u003e\\n \\u003cp\\u003e61\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 4px;\\\"\\u003e\\n \\u003cp\\u003e31.1\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 5px;\\\"\\u003e\\n \\u003cp\\u003e85.2\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 5px;\\\"\\u003e\\n \\u003cp\\u003e-0.121\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 8px;\\\"\\u003e\\n \\u003cp\\u003e-0.297; 0.051\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 6px;\\\"\\u003e\\n \\u003cp\\u003e0.170\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 7px;\\\"\\u003e\\n \\u003cp\\u003e10 (30.3)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 7px;\\\"\\u003e\\n \\u003cp\\u003e9 (32.1)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 6px;\\\"\\u003e\\n \\u003cp\\u003e1.000\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 38px;\\\"\\u003e\\n \\u003cp\\u003e7. Concerns or worries about managing the health problem were discussed.\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 10px;\\\"\\u003e\\n \\u003cp\\u003e61\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 4px;\\\"\\u003e\\n \\u003cp\\u003e31.1\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 5px;\\\"\\u003e\\n \\u003cp\\u003e80.3\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 5px;\\\"\\u003e\\n \\u003cp\\u003e-0.120\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 8px;\\\"\\u003e\\n \\u003cp\\u003e-0.252; 0.019\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 6px;\\\"\\u003e\\n \\u003cp\\u003e0.089\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 7px;\\\"\\u003e\\n \\u003cp\\u003e12 (36.4)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 7px;\\\"\\u003e\\n \\u003cp\\u003e7 (25.0)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 6px;\\\"\\u003e\\n \\u003cp\\u003e0.412\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 38px;\\\"\\u003e\\n \\u003cp\\u003e8. It was made sure that information had been understood.\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 10px;\\\"\\u003e\\n \\u003cp\\u003e62\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 4px;\\\"\\u003e\\n \\u003cp\\u003e48.4\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 5px;\\\"\\u003e\\n \\u003cp\\u003e100.0\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 5px;\\\"\\u003e\\n \\u003cp\\u003e-0.228\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 8px;\\\"\\u003e\\n \\u003cp\\u003e-0.403; -0.017\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 6px;\\\"\\u003e\\n \\u003cp\\u003e\\u003cstrong\\u003e0.036\\u003c/strong\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 7px;\\\"\\u003e\\n \\u003cp\\u003e19 (55.9)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 7px;\\\"\\u003e\\n \\u003cp\\u003e11 (39.3)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 6px;\\\"\\u003e\\n \\u003cp\\u003e0.213\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 38px;\\\"\\u003e\\n \\u003cp\\u003e9. There were opportunities to ask questions.\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 10px;\\\"\\u003e\\n \\u003cp\\u003e62\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 4px;\\\"\\u003e\\n \\u003cp\\u003e75.8\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 5px;\\\"\\u003e\\n \\u003cp\\u003e98.4\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 5px;\\\"\\u003e\\n \\u003cp\\u003e-0.114\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 8px;\\\"\\u003e\\n \\u003cp\\u003e-0.184; -0.029\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 6px;\\\"\\u003e\\n \\u003cp\\u003e\\u003cstrong\\u003e0.010\\u003c/strong\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 7px;\\\"\\u003e\\n \\u003cp\\u003e31 (91.2)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 7px;\\\"\\u003e\\n \\u003cp\\u003e16 (57.1)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 6px;\\\"\\u003e\\n \\u003cp\\u003e\\u003cstrong\\u003e0.003\\u003c/strong\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 38px;\\\"\\u003e\\n \\u003cp\\u003e10. The preference to take part in the decision (or not) was respected.\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 10px;\\\"\\u003e\\n \\u003cp\\u003e60\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 4px;\\\"\\u003e\\n \\u003cp\\u003e26.7\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 5px;\\\"\\u003e\\n \\u003cp\\u003e78.3\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 5px;\\\"\\u003e\\n \\u003cp\\u003e0.039\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 8px;\\\"\\u003e\\n \\u003cp\\u003e-0.038; 0.128\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 6px;\\\"\\u003e\\n \\u003cp\\u003e0.342\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 7px;\\\"\\u003e\\n \\u003cp\\u003e9 (28.1)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 7px;\\\"\\u003e\\n \\u003cp\\u003e7 (25.0)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 6px;\\\"\\u003e\\n \\u003cp\\u003e1.000\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 38px;\\\"\\u003e\\n \\u003cp\\u003e11. During the consultation, a decision was made; or there was an agreement to postpone making the decision.\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 10px;\\\"\\u003e\\n \\u003cp\\u003e61\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 4px;\\\"\\u003e\\n \\u003cp\\u003e36.1\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 5px;\\\"\\u003e\\n \\u003cp\\u003e65.6\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 5px;\\\"\\u003e\\n \\u003cp\\u003e0.076\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 8px;\\\"\\u003e\\n \\u003cp\\u003e-0.064; 0.216\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 6px;\\\"\\u003e\\n \\u003cp\\u003e0.291\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 7px;\\\"\\u003e\\n \\u003cp\\u003e16 (48.5)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 7px;\\\"\\u003e\\n \\u003cp\\u003e6 (21.4)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 6px;\\\"\\u003e\\n \\u003cp\\u003e\\u003cstrong\\u003e0.035\\u003c/strong\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 38px;\\\"\\u003e\\n \\u003cp\\u003e12. The possibility of coming back to the decision was discussed.\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 10px;\\\"\\u003e\\n \\u003cp\\u003e58\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 4px;\\\"\\u003e\\n \\u003cp\\u003e20.7\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 5px;\\\"\\u003e\\n \\u003cp\\u003e63.8\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 5px;\\\"\\u003e\\n \\u003cp\\u003e-0.063\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 8px;\\\"\\u003e\\n \\u003cp\\u003e-0.184; 0.075\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 6px;\\\"\\u003e\\n \\u003cp\\u003e0.350\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 7px;\\\"\\u003e\\n \\u003cp\\u003e6 (19.4)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 7px;\\\"\\u003e\\n \\u003cp\\u003e6 (22.2)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 6px;\\\"\\u003e\\n \\u003cp\\u003e1.000\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003c/tbody\\u003e\\n\\u003c/table\\u003e\\n\\u003cp\\u003eNote: The maximum possible tolerance is 3 steps, in which the percentage agreement is 100% for all questions. Statistically significant P-values are given in \\u003cstrong\\u003ebold\\u003c/strong\\u003e. \\u003csup\\u003ea\\u003c/sup\\u003e Calculated using the bootstrap percentile method with R = 10,000 bootstrap replicates.\\u003csup\\u003e\\u0026nbsp;b\\u003c/sup\\u003e P-values for the null hypothesis that Cohen\\u0026rsquo;s kappa = 0. \\u003csup\\u003ec\\u003c/sup\\u003e Of the 63 pairs, 34 (54.0%) pairs were deemed to agree on the content of the discussions in the encounter, according to the open-ended question, while 29 (46.0%) pairs were deemed to not agree. \\u003csup\\u003ed\\u003c/sup\\u003e P-values from Fisher\\u0026rsquo;s exact test for differences between pairs agreeing (\\u0026ldquo;yes\\u0026rdquo;) and not agreeing (\\u0026ldquo;no\\u0026rdquo;) on the content of the discussions in the encounter, according to the open-ended question.\\u003c/p\\u003e\\n\\u003cp\\u003e\\u0026nbsp;\\u003c/p\\u003e\\n\\u003ch2\\u003eLevel of agreement on perceived participation\\u0026nbsp;\\u003c/h2\\u003e\\n\\u003cp\\u003eIn Table 2 the agreements (in percentage) on perceived patient participation within patient-contact nurse pairs are presented together with Cohen\\u0026rsquo;s kappa (separately for the 12 questions in the dyadic OPTION scale). Question 9, \\u0026ldquo;There were opportunities to ask questions\\u0026rdquo;, reached an agreement of 75.8% at a tolerance of 0 steps (i.e., both patient and contact nurse reported the same response alternative). Question 3, \\u0026ldquo;Different sources of information (e.g., leaflets, websites, contact with other people) to help make the decision were offered\\u0026rdquo; and question 5, \\u0026ldquo;The advantages, disadvantages, and possible outcomes of options were discussed\\u0026rdquo;, reached complete agreements (a tolerance of 0 steps) of 14.3% and 17.2%, respectively. At a tolerance of 1 step (i.e., allowing for pairs to score response options with a one-step difference), the difference of agreement ranged from 100% for question 8, \\u0026ldquo;It was made sure that information had been understood\\u0026rdquo;, to 59.3% for question 4, \\u0026ldquo;Different options (including the possibility of doing nothing) were discussed\\u0026rdquo;.\\u0026nbsp;\\u003c/p\\u003e\\n\\u003cp\\u003eFor Cohen\\u0026rsquo;s kappa, question 5 in the dyadic OPTION scale, \\u0026ldquo;The advantages, disadvantages and possible outcomes of options were discussed\\u0026rdquo;, question 8, \\u0026ldquo;It was made sure that information had been understood\\u0026rdquo;, and question 9, \\u0026ldquo;There were opportunities to ask questions\\u0026rdquo;, reached statistically significant kappa values at -0.163 (P = 0.030), -0.228 (P = 0.036), and -0.114 (P = 0.010), respectively. However, it should be noted that since all these kappa values are negative, they imply that the observed agreement between patients and contact nurses was lower than what would have been expected to occur by chance.\\u003c/p\\u003e\\n\\u003cp\\u003eAnalyses of responses to the open-ended question, \\u0026ldquo;What was the main problem you discussed? Please describe it briefly\\u0026rdquo;, showed that 54% (n = 34) of the patient-contact nurse pairs described not having discussed the similar \\u0026rdquo;main problem\\u0026rdquo;. This level of agreement can be compared with the response to question 1, \\u0026ldquo;A health problem was identified\\u0026rdquo; (in the dyadic OPTION scale) which reached an agreement of 42% (n = 25) at a tolerance of 0 steps.\\u0026nbsp;\\u003c/p\\u003e\\n\\u003cp\\u003eAfter categorizing pairs as either \\u0026ldquo;agreeing\\u0026rdquo; or \\u0026ldquo;not agreeing\\u0026rdquo; on the main problem discussed during the encounter, statistically significant differences between \\u0026ldquo;agreeing\\u0026rdquo; and \\u0026ldquo;non-agreeing\\u0026rdquo; pairs were observed for question 9 (\\u0026ldquo;There were opportunities to ask questions\\u0026rdquo;), and question 11 (\\u0026ldquo;During the consultation, a decision was made; or there was an agreement to postpone making the decision\\u0026rdquo;). For \\u0026ldquo;agreeing\\u0026rdquo; pairs, 91.2% (n = 31) reported an agreement (tolerance 0 steps) to question 9 compared to 57.1% (n = 16) of the \\u0026ldquo;non-agreeing\\u0026rdquo; pairs (P = 0.003). For question 11, agreement was observed in 48.5% (n = 16) of the \\u0026ldquo;agreeing\\u0026rdquo; pairs whereas it was observed for 21.4% (n = 6) of the \\u0026ldquo;non-agreeing\\u0026rdquo; pairs (P = 0.035), see Table\\u0026nbsp;2.\\u003c/p\\u003e\\n\\u003ch2\\u003eFactors impacting the level of agreement\\u0026nbsp;\\u003c/h2\\u003e\\n\\u003cp\\u003eThe results from adjusted and unadjusted linear regression analyses of predictors of differences in agreement (scoring in the dyadic OPTION scale) within patient-contact nurse pairs are presented in Table 3. In both unadjusted and adjusted analyses, the HADS-D score was the only variable significantly associated with variations in scores on the dyadic OPTION scale, with P-values of 0.044 and 0.046, respectively. In the adjusted regression model the difference score in the dyadic OPTION scale within patient-contact nurse pairs increased on average with 0.721 (95% CI 0.014\\u0026ndash;1.427) points for each increment in the HADS-D score, after controlling for PAM score, patients having college/university education, and contact nurses having specialist nurse education (P = 0.046).\\u0026nbsp;\\u003c/p\\u003e\\n\\u003cp\\u003e\\u003cstrong\\u003eTable 3.\\u003c/strong\\u003e Regression results identifying predictors of Dyadic OPTION score differences between patients and contact nurses\\u003c/p\\u003e\\n\\u003ctable border=\\\"0\\\" cellspacing=\\\"0\\\" cellpadding=\\\"0\\\" width=\\\"605\\\" class=\\\"fr-table-selection-hover\\\"\\u003e\\n \\u003ctbody\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 170px;\\\"\\u003e\\n \\u003cp\\u003e\\u0026nbsp;\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd colspan=\\\"3\\\" valign=\\\"top\\\" style=\\\"width: 217px;\\\"\\u003e\\n \\u003cp\\u003e\\u003cstrong\\u003eUnadjusted\\u003c/strong\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd colspan=\\\"3\\\" valign=\\\"top\\\" style=\\\"width: 217px;\\\"\\u003e\\n \\u003cp\\u003e\\u003cstrong\\u003eAdjusted\\u003c/strong\\u003e\\u003csup\\u003ea\\u003c/sup\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 170px;\\\"\\u003e\\n \\u003cp\\u003e\\u003cstrong\\u003eVariable\\u003c/strong\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 57px;\\\"\\u003e\\n \\u003cp\\u003e\\u003cstrong\\u003e\\u0026beta;\\u003c/strong\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 95px;\\\"\\u003e\\n \\u003cp\\u003e\\u003cstrong\\u003e95% CI\\u003c/strong\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 66px;\\\"\\u003e\\n \\u003cp\\u003e\\u003cstrong\\u003eP-value\\u003c/strong\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 57px;\\\"\\u003e\\n \\u003cp\\u003e\\u003cstrong\\u003e\\u0026beta;\\u003c/strong\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 94px;\\\"\\u003e\\n \\u003cp\\u003e\\u003cstrong\\u003e95% CI\\u003c/strong\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 66px;\\\"\\u003e\\n \\u003cp\\u003e\\u003cstrong\\u003eP-value\\u003c/strong\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 170px;\\\"\\u003e\\n \\u003cp\\u003eFemale\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 57px;\\\"\\u003e\\n \\u003cp\\u003e3.189\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 95px;\\\"\\u003e\\n \\u003cp\\u003e-2.560; 8.938\\u0026nbsp;\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 66px;\\\"\\u003e\\n \\u003cp\\u003e0.726\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 57px;\\\"\\u003e\\n \\u003cp\\u003e\\u0026nbsp;\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 94px;\\\"\\u003e\\n \\u003cp\\u003e\\u003cem\\u003eNot in model\\u003c/em\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 66px;\\\"\\u003e\\n \\u003cp\\u003e\\u0026nbsp;\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 170px;\\\"\\u003e\\n \\u003cp\\u003eAge (years)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 57px;\\\"\\u003e\\n \\u003cp\\u003e-0.093\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 95px;\\\"\\u003e\\n \\u003cp\\u003e-0.301; 0.115\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 66px;\\\"\\u003e\\n \\u003cp\\u003e0.374\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 57px;\\\"\\u003e\\n \\u003cp\\u003e\\u0026nbsp;\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 94px;\\\"\\u003e\\n \\u003cp\\u003e\\u003cem\\u003eNot in model\\u003c/em\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 66px;\\\"\\u003e\\n \\u003cp\\u003e\\u0026nbsp;\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 170px;\\\"\\u003e\\n \\u003cp\\u003eHADS-A score (points)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 57px;\\\"\\u003e\\n \\u003cp\\u003e0.285\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 95px;\\\"\\u003e\\n \\u003cp\\u003e-0.217; 0.786\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 66px;\\\"\\u003e\\n \\u003cp\\u003e0.260\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 57px;\\\"\\u003e\\n \\u003cp\\u003e\\u0026nbsp;\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 94px;\\\"\\u003e\\n \\u003cp\\u003e\\u003cem\\u003eNot in model\\u003c/em\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 66px;\\\"\\u003e\\n \\u003cp\\u003e\\u0026nbsp;\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 170px;\\\"\\u003e\\n \\u003cp\\u003eHADS-D score (points)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 57px;\\\"\\u003e\\n \\u003cp\\u003e0.731\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 95px;\\\"\\u003e\\n \\u003cp\\u003e0.022; 1.441\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 66px;\\\"\\u003e\\n \\u003cp\\u003e\\u003cstrong\\u003e0.044\\u003c/strong\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 57px;\\\"\\u003e\\n \\u003cp\\u003e0.721\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 94px;\\\"\\u003e\\n \\u003cp\\u003e0.014; 1.427\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 66px;\\\"\\u003e\\n \\u003cp\\u003e\\u003cstrong\\u003e0.046\\u003c/strong\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 170px;\\\"\\u003e\\n \\u003cp\\u003ePAM-13\\u003csup\\u003e\\u0026reg;\\u003c/sup\\u003e score (points)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 57px;\\\"\\u003e\\n \\u003cp\\u003e0.082\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 95px;\\\"\\u003e\\n \\u003cp\\u003e-0.116; 0.281\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 66px;\\\"\\u003e\\n \\u003cp\\u003e0.410\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 57px;\\\"\\u003e\\n \\u003cp\\u003e0.135\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 94px;\\\"\\u003e\\n \\u003cp\\u003e-0.057; 0.326\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 66px;\\\"\\u003e\\n \\u003cp\\u003e0.166\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 170px;\\\"\\u003e\\n \\u003cp\\u003eCollege/university education\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 57px;\\\"\\u003e\\n \\u003cp\\u003e-3.721\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 95px;\\\"\\u003e\\n \\u003cp\\u003e-8.718; 1.275\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 66px;\\\"\\u003e\\n \\u003cp\\u003e0.142\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 57px;\\\"\\u003e\\n \\u003cp\\u003e-3.709\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 94px;\\\"\\u003e\\n \\u003cp\\u003e-8.530; 1.111\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 66px;\\\"\\u003e\\n \\u003cp\\u003e0.129\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 170px;\\\"\\u003e\\n \\u003cp\\u003eSpecialist nurse education\\u0026nbsp;\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 57px;\\\"\\u003e\\n \\u003cp\\u003e4.972\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 95px;\\\"\\u003e\\n \\u003cp\\u003e-1.142; 11.09\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 66px;\\\"\\u003e\\n \\u003cp\\u003e0.109\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 57px;\\\"\\u003e\\n \\u003cp\\u003e4.629\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 94px;\\\"\\u003e\\n \\u003cp\\u003e-1.301; 10.56\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 66px;\\\"\\u003e\\n \\u003cp\\u003e0.124\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003c/tbody\\u003e\\n\\u003c/table\\u003e\\n\\u003cp\\u003eNotes: HADS, Hospital Anxiety and Depression Scale; PAM, patient activation measure. Statistically significant P-values are given in \\u003cstrong\\u003ebold\\u003c/strong\\u003e. \\u003csup\\u003ea\\u003c/sup\\u003e Adjusted for HADS-Depression, PAM-13\\u0026reg;, patient education level (college/university education yes/no) and contact nurse education level (specialist nurse yes/no).\\u003c/p\\u003e\\n\\u003cp\\u003e\\u003cstrong\\u003eTable 4.\\u003c/strong\\u003e Patients responding to questions about perceived participation in the meeting with a contact nurse.\\u003c/p\\u003e\\n\\u003ctable border=\\\"0\\\" cellspacing=\\\"0\\\" cellpadding=\\\"0\\\" width=\\\"100%\\\"\\u003e\\n \\u003ctbody\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 4px;\\\"\\u003e\\n \\u003cp\\u003e\\u003cstrong\\u003e\\u0026nbsp;\\u003c/strong\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 51px;\\\"\\u003e\\n \\u003cp\\u003e\\u003cstrong\\u003e\\u0026nbsp;\\u003c/strong\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"bottom\\\" style=\\\"width: 14px;\\\"\\u003e\\n \\u003cp\\u003e\\u003cstrong\\u003eTotal\\u003c/strong\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd colspan=\\\"2\\\" valign=\\\"bottom\\\" style=\\\"width: 29px;\\\"\\u003e\\n \\u003cp\\u003e\\u003cstrong\\u003eAgreeing on content?\\u003c/strong\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 4px;\\\"\\u003e\\n \\u003cp\\u003e\\u003cstrong\\u003e\\u0026nbsp;\\u003c/strong\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"bottom\\\" style=\\\"width: 51px;\\\"\\u003e\\n \\u003cp\\u003e\\u003cstrong\\u003eQuestion\\u003c/strong\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"bottom\\\" style=\\\"width: 14px;\\\"\\u003e\\n \\u003cp\\u003e\\u003cstrong\\u003eYes, n (%)\\u003c/strong\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"bottom\\\" style=\\\"width: 14px;\\\"\\u003e\\n \\u003cp\\u003e\\u003cstrong\\u003eYes, n (%)\\u003c/strong\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"bottom\\\" style=\\\"width: 14px;\\\"\\u003e\\n \\u003cp\\u003e\\u003cstrong\\u003eNo, n (%)\\u003c/strong\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 4px;\\\"\\u003e\\n \\u003col\\u003e\\n \\u003cli\\u003e\\u0026nbsp;\\u003c/li\\u003e\\n \\u003c/ol\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 51px;\\\"\\u003e\\n \\u003cp\\u003eDid the contact nurse use a language you understood (avoided medical words or terms)?\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 14px;\\\"\\u003e\\n \\u003cp\\u003e59 (94)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 14px;\\\"\\u003e\\n \\u003cp\\u003e32 (94)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 14px;\\\"\\u003e\\n \\u003cp\\u003e27 (93)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 4px;\\\"\\u003e\\n \\u003col start=\\\"2\\\"\\u003e\\n \\u003cli\\u003e\\u0026nbsp;\\u003c/li\\u003e\\n \\u003c/ol\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 51px;\\\"\\u003e\\n \\u003cp\\u003eDid the contact nurse ask what you knew about your illness before receiving new information?\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 14px;\\\"\\u003e\\n \\u003cp\\u003e27 (43)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 14px;\\\"\\u003e\\n \\u003cp\\u003e17(50)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 14px;\\\"\\u003e\\n \\u003cp\\u003e10 (35)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 4px;\\\"\\u003e\\n \\u003col start=\\\"3\\\"\\u003e\\n \\u003cli\\u003e\\u0026nbsp;\\u003c/li\\u003e\\n \\u003c/ol\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 51px;\\\"\\u003e\\n \\u003cp\\u003eAre you satisfied with the conversation with the contact nurse?\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 14px;\\\"\\u003e\\n \\u003cp\\u003e60 (95)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 14px;\\\"\\u003e\\n \\u003cp\\u003e32(94)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 14px;\\\"\\u003e\\n \\u003cp\\u003e28 (97)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 4px;\\\"\\u003e\\n \\u003col start=\\\"4\\\"\\u003e\\n \\u003cli\\u003e\\u0026nbsp;\\u003c/li\\u003e\\n \\u003c/ol\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 51px;\\\"\\u003e\\n \\u003cp\\u003eHave you been involved to the extent you wished for the decisions regarding your care today?\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 14px;\\\"\\u003e\\n \\u003cp\\u003e55 (87)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 14px;\\\"\\u003e\\n \\u003cp\\u003e31 (91)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" style=\\\"width: 14px;\\\"\\u003e\\n \\u003cp\\u003e24 (83)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003c/tbody\\u003e\\n\\u003c/table\\u003e\\n\\u003cp\\u003eNote: Response options converted to No (\\u0026ldquo;not at all\\u0026rdquo;) and Yes (\\u0026ldquo;a little\\u0026rdquo;, \\u0026ldquo;quite a lot\\u0026rdquo;, or \\u0026ldquo;very much\\u0026rdquo;). \\u003csup\\u003ea\\u0026nbsp;\\u003c/sup\\u003eOf the 63 pairs, 34 (54.0%) pairs were deemed to agree on the content of the discussions in the encounter, according to the open-ended question, while 29 (46.0%) pairs were deemed to not agree.\\u003c/p\\u003e\\n\\u003ch2\\u003ePatients\\u0026rsquo; perceptions of their participation\\u0026nbsp;in the encounter\\u003c/h2\\u003e\\n\\u003cp\\u003eTable 4 presents the patients\\u0026rsquo; responses to questions related to their perceptions of their participation in the encounter with the contact nurses (study specific questions). Most patients reported that the contact nurses used a language that the patients understood by \\u0026ldquo;avoiding medical words and terminology\\u0026rdquo; (n = 59; 94%), were satisfied with the conversation with the contact nurse (n = 60; 95%), and perceived that they were involved in decisions made to the extent they wished (n = 55; 87%). In contrast, less than half of the patients (n = 27, 43%) reported that they were asked about what they knew about their illness before the contact nurse provided information.\\u0026nbsp;\\u003c/p\\u003e\\n\\u003cp\\u003eAmong pairs categorized as either \\u0026ldquo;agreeing\\u0026rdquo; or \\u0026ldquo;not agreeing\\u0026rdquo; on the main problem being discussed during the encounters, 10 (35%) out of 29 patients in the \\u0026ldquo;non-agreeing\\u0026rdquo; pairs reported that the contact nurse had inquired about their prior knowledge before introducing new information. Furthermore, 83% (n = 24) of patients in \\u0026ldquo;non-agreeing\\u0026rdquo; pairs reported that they had not been involved in decisions to the extent they preferred. However, almost all (n = 28; 97%) of the patients in \\u0026ldquo;non-agreeing\\u0026rdquo; pairs expressed being satisfied with the encounter with the contact nurse.\\u003c/p\\u003e\"},{\"header\":\"Discussion\",\"content\":\"\\u003cp\\u003eIn this cross-sectional study we investigated agreement between cancer patients\\u0026rsquo; and contact nurses\\u0026rsquo; perceptions of patients\\u0026rsquo; participation in care encounters prior to cancer treatment as well as factors contributing to the agreement/disagreement. Agreement within patient-contact nurse pairs was generally low, both in terms of the topics discussed during the encounters (open-ended question) and most questions in the dyadic OPTION scale. An increase in HADS-D scores was significantly associated with greater discrepancies in agreement.\\u003c/p\\u003e\\n\\u003cp\\u003e\\u003cem\\u003eResults in context\\u003c/em\\u003e\\u003c/p\\u003e\\n\\u003cp\\u003eDuring the critical period between receiving a cancer diagnosis and the initiation of treatment, contact nurses meet with patients to provide information and support in preparation for the upcoming treatment phase. At this stage, a relationship is initiated whereby contact nurses assume a particular responsibility to ensure that the healthcare experience responds to each patient\\u0026rsquo;s individual needs and preferences [5, 38]. Establishing agreement on the content of these encounters is therefore of considerable importance. A high level of agreement\\u0026mdash;defined as both patients and contact nurses selecting the same response option\\u0026mdash;for example regarding the opportunity to ask questions (dyadic OPTION question 9, Table 2), is valuable irrespective of whether the opportunity was perceived as high or low. Such agreement provides a shared foundation for subsequent communication.\\u0026nbsp;\\u003c/p\\u003e\\n\\u003cp\\u003eThe opportunity to ask questions has been identified as an important facilitator of patient participation [5, 16]. Patients in agreeing pairs were significantly more likely to report sufficient opportunities to ask questions compared with those in non-agreeing pairs. However, it remains unclear whether contact nurses themselves recognized low agreement and whether they had the possibility to arrange follow-up meetings in cases where time constraints may have limited the initial encounter.\\u003c/p\\u003e\\n\\u003cp\\u003eInformation needs have been reported to be high among newly diagnosed cancer patients [39], with experiences of both insufficient information and information overload described [40]. Only 43% (n = 27) of patients in our study reported that the contact nurses asked about their existing knowledge of their illness before providing additional information. Among patients in pairs who disagreed on the \\u0026quot;main problem\\u0026quot; in the open-ended question, an even lower percentage (35%; n = 10) reported that contact nurses had asked about their prior knowledge before presenting further information. This suggests that the information was not consistently tailored to individual patients\\u0026rsquo; existing knowledge or needs. As a result, some patients may have received too little or insufficient information, while others may have felt overwhelmed by receiving too much information. To prevent this, contact nurses should make the exploration of patients\\u0026rsquo; prior knowledge and preferences an explicit part of the consultation. Actively encouraging patients to recount the information they have received and to ask questions has been shown to improve comprehension and reduce anxiety, thereby supporting more effective communication and patient participation [13, 41]. It is also known that distress, anxiety, and depression impact the patient\\u0026rsquo;s information recall, especially when a large amount of information is provided within a short time span [13]. Therefore, it is especially important that the contact nurses ask about prior knowledge and understanding, and adapt further information to individual needs, that is, to develop the information exchange. Findings from a related study, which included interviews with patients involved in the present study [38], highlighted the importance of assessing patients\\u0026apos; existing knowledge before offering additional information. Having the opportunity to articulate ones previous knowledge and recall what has been communicated facilitates a deeper understanding of the situation [38]. The contact nurses\\u0026apos; separate encounters with patients scheduled for curative surgery were arranged immediately after their encounters with the physicians, where the treatment was discussed (during which the contact nurses were present). This may have contributed to the contact nurses not inquiring about the patients\\u0026apos; prior knowledge, though this may have been reflected on when treatment information was conveyed. However, the common starting point should have strengthened the consistency regarding what was discussed during the meeting.\\u003c/p\\u003e\\n\\u003cp\\u003eThe question in the dyadic OPTION scale with the lowest agreement reported was \\u0026ldquo;Different sources of information (e.g., leaflets, websites, contact with other people) to help make the decision were offered\\u0026rdquo;. We can only speculate on the reasons for this. It is possible that some patients and contact nurses did, or did not, consider information on paper or web-based information, such as the individual care plans offered to cancer patients in this health-care region, as different sources of information. Another reason for disagreement may have been that patients included external sources of information alongside what was provided by the contact nurses.\\u0026nbsp;\\u003c/p\\u003e\\n\\u003cp\\u003eIn the linear regression analyses, we used the HADS sub-scale scores as a continuous variable, an approach which has been found to better capture the variation in scoring than using cut-off values only showing if the score is above or below a specific cut-off threshold [42, 43]. The mean value for depression was comparable to Swedish population data (4.10 compared to 3.98 points), while the mean value for\\u0026nbsp;anxiety was considerably higher in our study (7.59 compared to 4.55 points)\\u0026nbsp;[44]. This could be expected, since the situation with a newly diagnosed cancer is stressful for most patients.\\u0026nbsp;\\u003c/p\\u003e\\n\\u003cp\\u003eReported symptoms of depression emerged as the primary factor associated with the level of agreement, whereas no statistically significant association was observed for anxiety. In another study, including newly diagnosed cancer patients those with higher levels of anxiety expressed more concerns and asked more questions [45]. Depression symptoms and being less likely to communicate concerns have been reported to be related to low PAM scores [46, 47]. This highlights the importance of contact nurses\\u0026rsquo; communication skills and their ability to identify patients who, despite appearing quiet and refraining from asking questions, may need additional support, more time to process information, and/or an opportunity for a follow-up meeting. However, such actions should be initiated by the contact nurse, as patients often hesitate to reach out, not wanting to burden the nurses, who they perceive as having a heavy workload [48].\\u003c/p\\u003e\\n\\u003cp\\u003eAn interesting finding in our study was that just over half of the patient-contact nurse pairs described the discussion as addressing the same \\u0026ldquo;main problem\\u0026rdquo; (open-ended question), while only 41% reached complete agreement (tolerance of 0 steps) that a health problem had been identified where it was made clear that a decision was needed (dyadic OPTION scale, question 1). Despite this, an overwhelming majority (95%) of the patients were satisfied with the conversations. The reasons for this remain speculative.\\u0026nbsp;Although patients may initially express satisfaction with their conversations, their perception may change over time. As additional information is provided, and the patient search additional information themselves throughout the treatment period, they may come to realize that certain details were missing in earlier stages\\u0026nbsp;[39]. The risk of miscommunication during this phase of the cancer trajectory should also be emphasized, given the significant safety concerns associated with missed or misunderstood information. Patients may not always interpret information as intended by health care professionals\\u0026nbsp;[49]. Therefore,\\u0026nbsp;contact nurses must remain vigilant in their communication strategies, as misinterpretations can compromise treatment adherence and hinder effective self-management of side effects\\u0026nbsp;[41, 50].\\u003c/p\\u003e\\n\\u003cp\\u003e\\u003cem\\u003ePractical implications\\u003c/em\\u003e\\u003c/p\\u003e\\n\\u003cp\\u003eIt is of the utmost importance that the information and communication between contact nurses and the patients are person-centred. Contact nurses should make efforts to confirm whether they have accurately grasped the individual patient\\u0026rsquo;s concerns and ensure that the patients have comprehended the information provided. Identifying patients\\u0026rsquo; knowledge, expectations, and thoughts about their illness, planned treatment, and possible side-effects provide opportunities for adaptation of information and support, and give patients possibilities to take active part in their own care. Additionally, contact nurses should have the opportunity to offer follow-up meetings, as patients may hesitate to reach out if they perceive nurses to be overwhelmed by a heavy workload. Providing structured follow-up options may encourage open communication and ensure that patients receive the support they need.\\u003c/p\\u003e\\n\\u003cp\\u003e\\u003cem\\u003eStrengths and limitations\\u003c/em\\u003e\\u003c/p\\u003e\\n\\u003cp\\u003eThis study has several strengths, with one of the most important being that both participating parts, patients and contact nurses, responded to the dyadic OPTION scale immediately after their encounter. This approach reduces the risk of either party forgetting details or confusing appointments or information. Behaviour during an encounter is influenced by both parties [45], and capturing the perspectives of each party is therefore essential. It is also noted by Melbourne et al. [35] that optimal data collection from decision-making participants involves posing questions immediately following the encounter, utilizing a dual-perspective approach.\\u003c/p\\u003e\\n\\u003cp\\u003eAnother strength of our study was the use of validated instruments and that patients were consecutively approached during the study recruitment periods. For the patients, the situation may be both intensive and stressful, and it is therefore a strength that 61% of eligible patients were included. Reasons for non-participation are reported. Limiting the number of patients per contact nurse helped mitigate the risk of undue influence from individual nurses on the overall findings.\\u003c/p\\u003e\\n\\u003cp\\u003eTo our knowledge, the dyadic OPTION scale was the best available questionnaire at the time of initiating this study [35], although we found few studies having used it. Due to the scarcity of published research employing the dyadic OPTION scale, it was not possible to compare our findings directly with results from other studies using the same instrument. A key strength of the dyadic OPTION scale is that it allows comparisons of subjective assessments of participation from both patients and health care professionals, which should be considered a strength. However, some limitations must also be acknowledged. The consistently low agreement and negative kappa values observed raise concerns about the dyadic OPTION scale instrument\\u0026rsquo;s validity in the oncology nursing context. The dyadic OPTION scale may not fully capture the nature of decisions made during nursing encounters. It is possible that neither patients nor contact nurses perceived that decisions were being made during these conversations, instead associating \\u0026ldquo;decisions\\u0026rdquo; primarily with medical choices such as treatment or medication. This raises important questions about whether the scale\\u0026rsquo;s items adequately reflect the communicative realities of oncology nursing practice. Another limitation was that the Swedish version has not been validated in a cancer care context [36].\\u0026nbsp;\\u003c/p\\u003e\\n\\u003cp\\u003eWhen analysing the open-ended question (\\u003cem\\u003eWhat was the main problem you talked about? Please describe it in a few words\\u003c/em\\u003e) variations in wording occurred, such as the patient\\u0026rsquo;s response (\\u0026quot;my upcoming treatment\\u0026quot;) versus the contact nurse\\u0026rsquo;s response (\\u0026quot;the chemotherapy treatment\\u0026rdquo;) were interpreted as describing the same issue. However, as in all interpretations, there may have been misunderstandings of the short responses.\\u0026nbsp;\\u003c/p\\u003e\\n\\u003cp\\u003eOther limitations include the exclusion of patients who were not proficient in Swedish, as well as those who declined participation due to feeling overwhelmed\\u0026mdash;both of which may have influenced the results. Feelings of being overwhelmed are common among patients with low activation levels. Previous studies have shown that these individuals often report having fewer opportunities to ask questions when they do not understand the information provided or the plans being discussed [27]. This may also have influenced the results. The contact nurses may have felt evaluated in their professional role, prompting reflections on their own healthcare communication, which could potentially evoke feelings of inadequacy. Additionally, attitudes from colleagues or managers may have influenced their willingness or reluctance to participate in the study.\\u0026nbsp;\\u003c/p\\u003e\"},{\"header\":\"Conclusions\",\"content\":\"\\u003cp\\u003eEven if most patients were satisfied with their encounters with contact nurses prior to cancer treatment, our results show generally low agreements regarding content and patient participation levels between patients and nurses. Reported symptoms of depression impacted the agreement negatively and did not seem to be picked up by the nurses. The results also showed that the nurses often seem to miss the opportunity to ask about the patient\\u0026rsquo;s previous health-related knowledge and experiences, which may have had a negative impact on the patients\\u0026rsquo; level of participation during the encounter. A more person-centred communication, including asking open questions related to previous knowledge and experiences could foster active patient participation in cancer care. These findings highlight the broader relevance of person-centred communication across diverse healthcare settings, underscoring the need for all care professionals to actively ensure that they understand each patient's individual concerns.\\u003c/p\\u003e\"},{\"header\":\"Abbreviations\",\"content\":\"\\u003cp\\u003eCI -\\u0026nbsp;confidence interval\\u003c/p\\u003e\\n\\u003cp\\u003eHADS -\\u0026nbsp;The Hospital Anxiety and Depression Scale\\u003c/p\\u003e\\n\\u003cp\\u003eHADS-A \\u0026ndash; anxiety symptoms\\u003c/p\\u003e\\n\\u003cp\\u003eHADS-D \\u0026ndash; depression symptoms\\u003c/p\\u003e\\n\\u003cp\\u003ePAM - Patient Activation Meassure\\u003c/p\\u003e\\n\\u003cp\\u003eSD \\u0026ndash; standard deviations\\u003c/p\\u003e\"},{\"header\":\"Declarations\",\"content\":\"\\u003cp\\u003eData availability\\u003c/p\\u003e\\n\\u003cp\\u003eData are available upon reasonable request. Ethical restrictions related to participant confidentiality prohibit the authors from making the data set publicly available. During the consent process, participants were explicitly guaranteed that the data would only be seen by members of the study team. For any discussions about the data set, please contact the corresponding author.\\u003c/p\\u003e\\n\\u003cp\\u003eEthics approval and consent to participate\\u003c/p\\u003e\\n\\u003cp\\u003eEthical approval to perform the study was obtained from the Swedish Ethical Review Authority (Dnr 2021-03751). The study adhered to the principles of the Helsinki Declaration and Good Clinical Practice. All participants provided written informed consent to participate in the study.\\u003c/p\\u003e\\n\\u003cp\\u003eFunding\\u003c/p\\u003e\\n\\u003cp\\u003eThis work was supported by Regional Cancer Centre Stockholm Gotland.\\u003c/p\\u003e\\n\\u003cp\\u003eConsent for publication\\u003c/p\\u003e\\n\\u003cp\\u003eNot applicable.\\u003c/p\\u003e\\n\\u003cp\\u003eCompeting interests\\u003c/p\\u003e\\n\\u003cp\\u003eThe authors declare no competing interests.\\u003c/p\\u003e\"},{\"header\":\"References\",\"content\":\"\\u003col\\u003e\\n\\u003cli\\u003eEkman I, Swedberg K, Taft C, Lindseth A, Norberg A, Brink E, Carlsson J, Dahlin-Ivanoff S, Johansson I-L, Kjellgren K\\u003cem\\u003e et al\\u003c/em\\u003e: \\u003cstrong\\u003ePerson-Centered Care \\u0026mdash; Ready for Prime Time\\u003c/strong\\u003e. \\u003cem\\u003eEuropean Journal of Cardiovascular Nursing \\u003c/em\\u003e2011, \\u003cstrong\\u003e10\\u003c/strong\\u003e(4):248\\u0026ndash;251.\\u003c/li\\u003e\\n\\u003cli\\u003eGregory J: \\u003cstrong\\u003eUnderstanding the communication skills that support nurses to provide person-centred care\\u003c/strong\\u003e. \\u003cem\\u003eNursing standard \\u003c/em\\u003e2024, \\u003cstrong\\u003e39\\u003c/strong\\u003e(2):61\\u0026ndash;66.\\u003c/li\\u003e\\n\\u003cli\\u003eJenerette CM, Mayer DK: \\u003cstrong\\u003ePatient-Provider Communication: the Rise of Patient Engagement\\u003c/strong\\u003e. \\u003cem\\u003eSeminars in oncology nursing \\u003c/em\\u003e2016, \\u003cstrong\\u003e32\\u003c/strong\\u003e(2):134\\u0026ndash;143.\\u003c/li\\u003e\\n\\u003cli\\u003eKourkouta L, Papathanasiou IV: \\u003cstrong\\u003eCommunication in nursing practice\\u003c/strong\\u003e. \\u003cem\\u003eMater Sociomed \\u003c/em\\u003e2014, \\u003cstrong\\u003e26\\u003c/strong\\u003e(1):65\\u0026ndash;67.\\u003c/li\\u003e\\n\\u003cli\\u003eKwame A, Petrucka PM: \\u003cstrong\\u003eA literature-based study of patient-centered care and communication in nurse-patient interactions: barriers, facilitators, and the way forward\\u003c/strong\\u003e. \\u003cem\\u003eBMC Nursing \\u003c/em\\u003e2021, \\u003cstrong\\u003e20\\u003c/strong\\u003e(1):158.\\u003c/li\\u003e\\n\\u003cli\\u003eTreiman K, McCormack L, Wagner L, Roach N, Moultrie R, Sanoff H, Bann C, Street RL, Jr., Ashok M, Reeve BB: \\u003cstrong\\u003eFactors affecting the communication experiences of newly diagnosed colorectal cancer patients\\u003c/strong\\u003e. \\u003cem\\u003ePatient education and counseling \\u003c/em\\u003e2018, \\u003cstrong\\u003e101\\u003c/strong\\u003e(9):1585\\u0026ndash;1593.\\u003c/li\\u003e\\n\\u003cli\\u003ePettersson ME, \\u0026Ouml;hl\\u0026eacute;n J, Friberg F, Hyd\\u0026eacute;n LC, Wallengren C, Sarenmalm EK, Carlsson E: \\u003cstrong\\u003ePrepared for surgery \\u0026ndash; 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A study of patients\\u0026rsquo; questions, cues and concerns in relation to observed shared decision-making in a cancer outpatient clinic\\u003c/strong\\u003e. \\u003cem\\u003ePatient education and counseling \\u003c/em\\u003e2018, \\u003cstrong\\u003e101\\u003c/strong\\u003e(3):399\\u0026ndash;405.\\u003c/li\\u003e\\n\\u003cli\\u003eMagnezi R, Glasser S, Shalev H, Sheiber A, Reuveni H: \\u003cstrong\\u003ePatient activation, depression and quality of life\\u003c/strong\\u003e. \\u003cem\\u003ePatient education and counseling \\u003c/em\\u003e2014, \\u003cstrong\\u003e94\\u003c/strong\\u003e(3):432\\u0026ndash;437.\\u003c/li\\u003e\\n\\u003cli\\u003eBlakemore A, Hann M, Howells K, Panagioti M, Sidaway M, Reeves D, Bower P: \\u003cstrong\\u003ePatient activation in older people with long-term conditions and multimorbidity: correlates and change in a cohort study in the United Kingdom\\u003c/strong\\u003e. \\u003cem\\u003eBMC health services research \\u003c/em\\u003e2016, \\u003cstrong\\u003e16\\u003c/strong\\u003e(1):582.\\u003c/li\\u003e\\n\\u003cli\\u003eChan EA, Wong F, Cheung MY, Lam W: \\u003cstrong\\u003ePatients\\u0026apos; perceptions of their experiences with nurse-patient communication in oncology settings: A focused ethnographic study\\u003c/strong\\u003e. \\u003cem\\u003ePloS one \\u003c/em\\u003e2018, \\u003cstrong\\u003e13\\u003c/strong\\u003e(6):e0199183.\\u003c/li\\u003e\\n\\u003cli\\u003eSullivan DR, Rosa WE, Rosenberg AR: \\u003cstrong\\u003eMiscommunication in Cancer Care-Do You Hear What I Hear?\\u003c/strong\\u003e \\u003cem\\u003eJAMA oncology \\u003c/em\\u003e2023, \\u003cstrong\\u003e9\\u003c/strong\\u003e(10):1335\\u0026ndash;1336.\\u003c/li\\u003e\\n\\u003cli\\u003eHyatt A, Shelly A, Cox R, Humphries E, Lock G, Varlow M: \\u003cstrong\\u003eHow can we improve information for people affected by cancer? A national survey exploring gaps in current information provision, and challenges with accessing cancer information online\\u003c/strong\\u003e. \\u003cem\\u003ePatient education and counseling \\u003c/em\\u003e2022, \\u003cstrong\\u003e105\\u003c/strong\\u003e(8):2763\\u0026ndash;2770.\\u003c/li\\u003e\\n\\u003c/ol\\u003e\"}],\"fulltextSource\":\"\",\"fullText\":\"\",\"funders\":[],\"hasAdminPriorityOnWorkflow\":false,\"hasManuscriptDocX\":true,\"hasOptedInToPreprint\":true,\"hasPassedJournalQc\":\"\",\"hasAnyPriority\":false,\"hideJournal\":false,\"highlight\":\"\",\"institution\":\"\",\"isAcceptedByJournal\":false,\"isAuthorSuppliedPdf\":false,\"isDeskRejected\":\"\",\"isHiddenFromSearch\":false,\"isInQc\":false,\"isInWorkflow\":false,\"isPdf\":false,\"isPdfUpToDate\":true,\"isWithdrawnOrRetracted\":false,\"journal\":{\"display\":true,\"email\":\"info@researchsquare.com\",\"identity\":\"bmc-nursing\",\"isNatureJournal\":false,\"hasQc\":true,\"allowDirectSubmit\":false,\"externalIdentity\":\"nurs\",\"sideBox\":\"Learn more about [BMC Nursing](http://bmcnurs.biomedcentral.com/)\",\"snPcode\":\"\",\"submissionUrl\":\"https://www.editorialmanager.com/nurs/default.aspx\",\"title\":\"BMC Nursing\",\"twitterHandle\":\"@BMC_series\",\"acdcEnabled\":true,\"dfaEnabled\":false,\"editorialSystem\":\"em\",\"reportingPortfolio\":\"BMC Series\",\"inReviewEnabled\":true,\"inReviewRevisionsEnabled\":true},\"keywords\":\"\",\"lastPublishedDoi\":\"10.21203/rs.3.rs-8603011/v1\",\"lastPublishedDoiUrl\":\"https://doi.org/10.21203/rs.3.rs-8603011/v1\",\"license\":{\"name\":\"CC BY 4.0\",\"url\":\"https://creativecommons.org/licenses/by/4.0/\"},\"manuscriptAbstract\":\"\\u003cp\\u003eBackground\\u003c/p\\u003e \\u003cp\\u003eContact nurses in cancer care play a key role in providing information about planned treatment and care. However, little is known about how their communication skills influence patients\\u0026rsquo; ability to participate actively in their care. There is also limited knowledge about contact nurses\\u0026rsquo; capacity to engage patients in decision-making related to information sharing and self-management. This study aimed to examine the level of agreement between patients and contact nurses regarding perceived patient participation during pre-treatment encounters and to identify factors influencing agreement or disagreement.\\u003c/p\\u003e \\u003cp\\u003eMethods\\u003c/p\\u003e \\u003cp\\u003eA cross-sectional assessment was conducted with 63 cancer patient\\u0026ndash;contact nurse pairs at an oncology outpatient clinic in a large university hospital. Patients and contact nurses completed the Dyadic OPTION scale immediately after a scheduled encounter prior to treatment initiation. Before the encounter, patients also completed the Patient Activation Measure (PAM-13\\u0026reg;), the Hospital Anxiety and Depression Scale (HADS), and study-specific questions. Data were analyzed using percentage agreement and linear regression, along with content analysis of an open-ended question about agreement on the main issues discussed.\\u003c/p\\u003e \\u003cp\\u003eResults\\u003c/p\\u003e \\u003cp\\u003e Agreement between patients and contact nurses varied, although most patients (95%) reported high satisfaction with the encounter. Depression symptoms were the primary factor associated with lower agreement. Higher agreement occurred when both parties reported discussing the same main problem. Disagreement was most often related to patients not being asked about their prior knowledge or preferred level of involvement in treatment and care.\\u003c/p\\u003e \\u003cp\\u003eConclusions\\u003c/p\\u003e \\u003cp\\u003eLow agreement between patients\\u0026rsquo; and contact nurses\\u0026rsquo; perceptions of patient participation and of the issues discussed before treatment may lead to misunderstandings and missed information, posing a potential risk to patient safety. Contact nurses therefore need to proactively assess patients\\u0026rsquo; prior knowledge and preferences for involvement. Understanding patients\\u0026rsquo; existing knowledge and experiences enables nurses to tailor information more effectively, improving comprehension and opportunities for participation. Contact nurses should also ensure they have accurately understood each patient\\u0026rsquo;s concerns and that patients fully comprehend the information provided. Ongoing development of communication skills and a stronger focus on effective information exchange are essential.\\u003c/p\\u003e\",\"manuscriptTitle\":\"Patient and contact nurse perceptions regarding patient participation during encounters prior to cancer treatment-a cross-sectional study\",\"msid\":\"\",\"msnumber\":\"\",\"nonDraftVersions\":[{\"code\":1,\"date\":\"2026-01-25 10:20:20\",\"doi\":\"10.21203/rs.3.rs-8603011/v1\",\"editorialEvents\":[{\"type\":\"communityComments\",\"content\":0},{\"type\":\"reviewerAgreed\",\"content\":\"308227687025216289295314993711076862082\",\"date\":\"2026-03-08T13:54:54+00:00\",\"index\":\"hide\",\"fulltext\":\"\"},{\"type\":\"editorInvitedReview\",\"content\":\"\",\"date\":\"2026-02-02T13:07:38+00:00\",\"index\":\"hide\",\"fulltext\":\"\"},{\"type\":\"reviewerAgreed\",\"content\":\"133854459526224646877631734969596379464\",\"date\":\"2026-01-23T09:05:18+00:00\",\"index\":\"hide\",\"fulltext\":\"\"},{\"type\":\"reviewersInvited\",\"content\":\"\",\"date\":\"2026-01-21T12:16:26+00:00\",\"index\":\"\",\"fulltext\":\"\"},{\"type\":\"editorInvited\",\"content\":\"\",\"date\":\"2026-01-19T11:43:29+00:00\",\"index\":\"\",\"fulltext\":\"\"},{\"type\":\"editorAssigned\",\"content\":\"\",\"date\":\"2026-01-19T03:26:40+00:00\",\"index\":\"\",\"fulltext\":\"\"},{\"type\":\"checksComplete\",\"content\":\"\",\"date\":\"2026-01-19T03:24:05+00:00\",\"index\":\"\",\"fulltext\":\"\"},{\"type\":\"submitted\",\"content\":\"BMC Nursing\",\"date\":\"2026-01-14T14:45:30+00:00\",\"index\":\"\",\"fulltext\":\"\"}],\"status\":\"published\",\"journal\":{\"display\":true,\"email\":\"info@researchsquare.com\",\"identity\":\"bmc-nursing\",\"isNatureJournal\":false,\"hasQc\":true,\"allowDirectSubmit\":false,\"externalIdentity\":\"nurs\",\"sideBox\":\"Learn more about [BMC Nursing](http://bmcnurs.biomedcentral.com/)\",\"snPcode\":\"\",\"submissionUrl\":\"https://www.editorialmanager.com/nurs/default.aspx\",\"title\":\"BMC Nursing\",\"twitterHandle\":\"@BMC_series\",\"acdcEnabled\":true,\"dfaEnabled\":false,\"editorialSystem\":\"em\",\"reportingPortfolio\":\"BMC Series\",\"inReviewEnabled\":true,\"inReviewRevisionsEnabled\":true}}],\"origin\":\"\",\"ownerIdentity\":\"fcda9adc-066f-4c38-879c-0967594195e9\",\"owner\":[],\"postedDate\":\"January 25th, 2026\",\"published\":true,\"recentEditorialEvents\":[],\"rejectedJournal\":[],\"revision\":\"\",\"amendment\":\"\",\"status\":\"under-review\",\"subjectAreas\":[],\"tags\":[],\"updatedAt\":\"2026-01-25T10:20:20+00:00\",\"versionOfRecord\":[],\"versionCreatedAt\":\"2026-01-25 10:20:20\",\"video\":\"\",\"vorDoi\":\"\",\"vorDoiUrl\":\"\",\"workflowStages\":[]},\"version\":\"v1\",\"identity\":\"rs-8603011\",\"journalConfig\":\"researchsquare\"},\"__N_SSP\":true},\"page\":\"/article/[identity]/[[...version]]\",\"query\":{\"redirect\":\"/article/rs-8603011\",\"identity\":\"rs-8603011\",\"version\":[\"v1\"]},\"buildId\":\"XKTyCvWXoU3ODBz1xrDgd\",\"isFallback\":false,\"isExperimentalCompile\":false,\"dynamicIds\":[84888],\"gssp\":true,\"scriptLoader\":[]}","source_license":"CC-BY-4.0","license_restricted":false}