Chronically ill Patients’ Perspectives on Support Services and Activities of Patient Organizations

Chronically ill Patients’ Perspectives on Support Services and Activities of Patient Organizations | 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 Chronically ill Patients’ Perspectives on Support Services and Activities of Patient Organizations Avi Zigdon, Eyal Eckhaus, Ofek Zigdon, Michal Rosenfeld This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-2341132/v1 This work is licensed under a CC BY 4.0 License Status: Posted Version 1 posted You are reading this latest preprint version Abstract Background: Evidence suggests that Patient Organizations (POs) are an important support factor in chronically ill patients' coping with their illness. This support differs significantly in topic, type, and style from the physician support, and they complement each other. Also, the chronically ill Patients' perspective on the activities and services offered by patient organizations has yet to be evaluated. This study aimed to identify and map the services and activities of all types of non-profit POs from the general chronically ill patient's perspective. Methods: Nineteen services and activities of POs were sampled from the activities of patient organizations in Israel and from scientific literature and evaluated by chronically ill patients in Israel. Questionnaires were distributed among patients with chronic diseases (N=1395) using snowball sampling. Results : Exploratory factor analysis (EFA) was performed, followed by confirmatory factor analysis (CFA) for convergent and discriminant validity. Findings showed that twelve services and activities suggested by patient organizations were found to represent chronically ill patients' needs and categorized into three groups: Interpersonal support (five items), patients' rights (three items), and medical information (four items).CFA showed a good fit for the observed data. CFI = 0.98, NFI = 0.97, TLI = 0.96, RMSEA = 0.058. Conclusions: Patient organizations complement services and activities that are not available in health systems. However, patient organizations need to tailor their services and activities to the needs of chronically ill patients, to whom they provide the services, in a beneficial manner that will allow them to maximize their ability to better manage their disease. Patient Organizations (PO) Patient Perspectives Chronically ill patients Patient-Oriented Questionnaire Services and Activities Figures Figure 1 Introduction Global morbidity and mortality are mainly caused by chronic diseases [ 1 ]. Patients diagnosed with a chronic disease feel disappointed with the quality of care, lack of availability of human resources, poor access to information, and inadequate responsiveness in the health care system [ 2 , 3 ]. They are interested in assuming a greater role in the management of their treatments [ 4 ]. Strategies that encourage patient involvement in managing their illness help to achieve the best possible care for the patient, streamline the work of healthcare providers, and shape health policies [ 5 , 6 ]. Effective communication and trust between patient and caregiver reduce health disparities and promotes health equality [ 7 ], and there is even evidence of the impact of patients' perceptions on the structures of health systems [ 8 , 9 ]. In recent decades, new conceptions of the patient's role in the therapeutic process have emerged [ 10 ]. These believe that it is of great importance for the patient to be placed at the center of the treatment process. The patient must be provided with all the tools and information needed to maintain active involvement in the decision-making process [ 10 ]. Patients occupy an important place in providing emotional support to other patients. But in recent years they have been offering other patients' guidance in the field of personal health, based on the experience they have acquired from managing similar health conditions, and the patient's experience has been defined as experiential knowledge acquired personally from the day-to-day management of the disease. The support offered by patients to other patients differs from the support offered by their physicians in type, style and topic, due to the different experience in managing the disease [ 11 ]. These organizations play an important role in supporting chronically ill patients. They are the connecting threads that facilitate communication of information between patients and health care providers. They provide telephone counseling, offer online social network support [ 12 ], provide medical rights information [ 6 ], and specialize in achieving the desires and needs of the patients [ 13 , 14 ]. They serve as an administrative link. They are funded by the government and health system [ 4 ]. They work to empower patients [ 6 ] and improve their health [ 15 ]. These organizations play an influential political role in shaping health policies. They assist in recruiting patients to accelerate research, financially supporting both patients and research programs [ 16 – 22 ]. They work to share evidence-based medical knowledge, experiences, and preferences in managing a particular disease [ 23 ]. In most organizations, services and activities are provided at little to no cost and some even serve as social support groups protecting the patient from the disease's negative effects on the quality of life [ 24 ]. Some POs have been set up by patients who share the same experiences and provide emotional and practical support from their own experiences [ 12 , 25 ]. Namely, Patient Advocacy Organizations (PAO) [ 15 ]; Patient Advocacy Groups (PAG) [ 26 ]; Support Groups (SG) [ 24 ]; Patient Organizations (PO) [ 6 ] and Group Education (GE) [ 23 ]. Research shows that patients who are members of Patient Organizations (POs) rate their health better, are more satisfied with their treatment, and are more knowledgeable about techniques and treatment innovation than people who are not members of POs [ 27 , 28 ]. However, some PO policies limit their capability of providing an ideal personalized plan of care for each patient as a result of their financial dependency on the pharmaceutical industry and medical device manufacturers [ 6 , 29 ]. The number of POs has increased in recent years, and they compete for funding and visibility [ 30 ]. To our knowledge, services and activities of POs have yet to be studied from the patient's perspective, notably the services, that assist the patient with managing their disease. The aims of this preliminary study were to identify and map the services and activities of all types of non-profit POs from the general chronically ill patient's perspective. Materials & Methods Study design A prospective study was conducted among chronically ill patients in Israel, to identify and map the services and activities suggested by POs from the chronically ill patients' perspective. The participants were sampled using snowball sampling by pre-instructed research assistants. All research participants were aged ≥ 18 years. Non-lucid participants or those with cognitive impairments were excluded from this study. The questionnaire was distributed to people who were likely to have a chronic illness from the general population. Every first stage participant directed the research assistants to second stage participants. The questionnaires were independently filled out by the participants after signing an informed consent form. The first question was: "Do you suffer from any disease?" If yes, the second question was: "What is the disease you are suffering from?”. If the self-reported disease was considered a chronic disease, the questionnaire was administered. Ethical Considerations The research ethics committee of the Ariel University (ref AU-AZ-20180307) reviewed and approved all aspects of this study. Written informed consent was obtained from all the participants prior to completing the questionnaire. Questionnaires were coded for anonymous data analysis. The type of disease and health status were self-reported by the participants. Participants The total amount of filled-in questionnaires was 1,876, of which 481 were excluded either because they were incomplete and missing data could not be obtained or the participant did not report a chronic illness. Of the valid 1,395 completed questionnaires, 842 (60.4%) were female participants and 553 (39.6%) were male participants. Furthermore, 23.7% were between the ages of 37–55 (n = 125 males; n = 206 females), 23.5% between the ages of 56–70 (n = 119 males; n = 209 females), and 52.8% were ≥ 71 years old (n = 309 males; n = 427 females). Additionally, data on gender, marital status, country of birth, nationality, educational level, reported health status, and type of disease were collected. Respondents’ characteristics are summarized in Table 1 . Table 1 Respondents’ characteristics (N = 1395) Respondents, n (%) Gender Female 842 (60.4) Male 553 (39.6) Marital Status Married/Partner 891 (63.9) Never Married 233 (16.7) Divorced 147 (10.5) Widowed 117 (8.4) Missing 7 (0.5) Country of Birth Israel 741 (53.1) Other 654 (46.9) Religion Jewish 990 (71) Muslim 292 (20.9) Christian 78 (5.6) Druze 11 (0.8) Other 24 (1.7) Education level University 555 (39.8) College 253 (18.1) High School or below 566 (40.6) Missing 21 (1.5) Reported Health Status Very Good 205 (14.7) Good 636 (45.6) Not so good 377 (27) Not good 114 (8.2) Bad 56 (4) Chronic disease Diabetes 397 (28.5) Cardiovascular disease 206 (14.8) Asthma or lung disease 161 (11.5) Cancer 108 (7.7) Arthritis 105 (7.5) Mental Disorders 103 (7.4) Osteoporosis 49 (3.5) Stroke (CVA) 44 (3.2) Crohn’s disease and ulcerative colitis 27 (1.9) Chronic kidney disease and renal failure 22 (1.6) Parkinson's disease 20 (1.4) Multiple Sclerosis (MS) 18 (1.3) Epilepsy 17 (1.2) Fibromyalgia 11 (0.8) Cystic fibrosis 4 (0.3) Other 103 (7.4) [Insert Table 1 . Respondents’ characteristics (N = 1395)] Measures The study questionnaire included 19 items that were developed based on the literature [ 6 , 12 – 14 , 16 – 23 ] and activities of POs in Israel (Table 2 ). In each of the questions, the participant was required to rate his or her answers on a 4-level ordinal scale (1-would not help at all to 4-would be very helpful). The research tool was content-validated by three PO managers, two Ph.D.-Level researchers, and a patient-rights specialist. After slight wording notes, appropriate changes were made into the items and the questionnaire was distributed. To test the reliability of item variables and the quality of variable comprehension, a pilot study was conducted among 40 chronically ill patients. The pilot study found a reliability level with Cronbach's α = 0.862 for all items and no wording problems were found. Table 2 Services and activities suggested by Patient Organizations: Patient-Oriented Questionnaire (POQ) On a scale from “1-would not help at all to 4-would be very helpful” Item Variable Q1 Attending medical conferences and seminars on the disease Q2 Receiving information about the disease and treatment Q3 Online medical information Q4 24/7 Hotline Q5 Patient social gatherings Q6 Personal support meetings with another PO member Q7 Phone consulting with a PO professional Q8 Support group meeting with other PO members Q9 Weekend holiday with other PO members and their families Q10 Online support forum Q11 Clubs (e.g. Pilates, supporting exercise) Q12 Patient rights information Q13 Assistance in utilizing patient rights Q14 Patient active involvement in research and new treatment development Q15 Financial support for treatments Q16 Professional caregiver (non-patient), trained and familiar with the health system Q17 Family member, trained and familiar with the health system Q18 Attend a course where you will learn to become better acquainted with your disease Q19 Experienced patient, trained and familiar with the health system Data Analysis Exploratory Factor Analysis (EFA) was performed first half of the data (696 participants), followed by Confirmatory Factor Analysis (CFA) for convergent and discriminant validity [ 31 ]. On the other half of the data (699 participants). This splitting technique confirms that the model developed by the EFA is consistent. Model fit was estimated using Comparative Fit Index (CFI), Tucker-Lewis Index (TLI), Normed-Fit Index (NFI), and Root Mean Square Error of Approximation (RMSEA) [ 32 ]. Values ​​of CFI, NFI, and TLI ≥ 0.95, and RMSEA ≤ 0.06 are considered a good fit [ 33 ]. We used SPSS v.24 for EFA and AMOS v.24 for CFA. Results Exploratory Factor Analysis Kaiser-Meyer-Olkin measure of sampling adequacy was 0.89 which was above the recommended value of 0.6, and Bartlett’s test of sphericity was statistically significant (χ 2 (105) = 4564.06, p < 0.001). A principle-components factor analysis of the 19 items using varimax rotations was then conducted. The literature varies for the minimum loading, ranging between 0.4 and 0.5. Therefore, for a rigorous solution we considered a minimum loading of 0.5. after suppressing loadings below 0.5 there were no cross loadings. Four items had low loadings and therefore suppressed, these were Q4, Q11, Q18, Q14. Eigen-values showed that each variable loaded onto three factors, explaining 60.45% of the variance. These were: (1) Interpersonal support, (2) Patients' rights, and (3) Medical information. Given these overall indicators, factor analysis was deemed to be suitable for the 15 items. Factor loadings is displayed in Table 3 . The items removed were: Q11- Clubs (e.g. Pilates, supporting exercise). Q14 - Patient active involvement in research and new treatment development. Q18- Attend a course where you will learn to become better acquainted with your disease. Q4 24/7 Hotline Table 3 Factor loadings based on a principal components' analysis with varimax rotation Item # Interpersonal support Patients' rights Medical information Q1 0.512 Q5 0.82 Q6 0.774 Q7 0.669 Q8 0.84 Q9 0.681 Q19 0.645 Q12 0.749 Q13 0.816 Q15 0.766 Q16 0.625 Q17 0.583 Q2 0.608 Q3 0.857 Q10 0.713 Note. Factor loadings < 0.5 were suppressed. Cronbach’s α examined reliability, namely internal consistency for the scales. The scales showed adequate alphas of 0.71 for medical information, 0.8 for patients' rights and 0.87 for interpersonal support. Scale α = 0.88 for the complete scale. Confirmatory Factor Analysis We used AMOS v.25 for the CFA. Three items (# 1,7,16) were removed to improve model fit. Next, items of each measure were loaded on a specific latent variable: three items for medical information, four items for patients' rights and five items for interpersonal support. CFA showed a good fit for the observed data. CFI = 0.98, NFI = 0.97, TLI = 0.96, RMSEA = 0.058, Chi-square = 121.6 (df = 36) (Figure. 1). Figure. 1 Groups of important services and activities given by POs. Every group is supported by the services and activities with the highest loadings in relation to the group. The higher loading values suggest a stronger correlation between the service or activity and the group. Discussions The services and activities of POs had yet to be studied from the patient's perspective, specifically those that assist the patient with managing their disease. This study investigated the contribution of PO services and activities from chronically ill patients' perspectives using structural comparison. CFA confirmed the structural validity of the model suggested in this study and found three main groups as important services given by POs: "interpersonal support", "medical information", and "patients' rights". "Interpersonal support" consists of five items regarding the patient's need to be in a social environment with similar patients. “Medical information” consists of three main cornerstones: information about the disease and treatment, online availability (e.g. forum, hotline), and online medical information. "Patients' rights" consists of four items focused on financial support. These finding represent the needs of patient during their chronic illness. Interpersonal support demonstrates the patients’ need for intimate human connections to other patients who identify with the same disease. Studies found that PO meetings play a protective role against negative disease effects and emphasize the necessity of face-to-face interactions [ 25 ]. Q7 (Phone consulting with a PO professional), which was excluded, supports the idea that since a PO-assigned advisor may resemble a physician-patient relationship (which is paternalistic) a PO-assigned advisor could be undesirable. Chronically ill patients want to have control and be involved in their disease management [ 24 ] and thus would avoid a paternalistic relationship with an advisor. Patients expect open communication with PO members, which allows two-way information transfer and deliberation about medical recommendations [ 23 ]. The results suggest that chronically ill patients want to receive medical information from their PO. This finding is similar to previous research that shows the high importance of medical information sharing in PO activity [ 14 ]. This study adds to existing literature that medical information must be delivered as confidentially as possible to maintain privacy. This finding is based upon the variables representing the group "medical information". Support for that can be found in the exclusion of Q1 (Attending medical conferences and seminars on the disease) from the model, which represents receiving information about the disease in a public manner. In such, the information is usually evidence-based. This study found that receiving medical information from POs is done online and isn't necessarily evidence-based. Moreover, the information can be received in a non-frontal fashion. Chronic patients prefer receiving informal medical information in a face-to-face manner from other experienced patients. This provides them with an intimate human connection while receiving medical information [ 12 , 25 ]. The evidence-based medical information found online is difficult to understand and raises anxiety among patients [ 23 ]. Patients' expressed four main desires from POs that have previously been reported: patients' rights information, patients' rights utilization, financial support for treatments, and family member training and familiarity with the healthcare system [ 6 , 14 ]. Patients' rights in Israel come into play especially with regards to finances [ 34 ] (e.g. allowances, medications, medical devices, income tax exemptions, discounts) and thus we can assume that the "patients' rights" group referred to the financial aspect of PO services. The support of a knowing family member was shown to be of high importance in the process of disease management, probably due to the high accessibility of the "source of information" regarding patients' rights to the chronically ill patient. Administrative efficiency also allows in the process of right utilization by the patient. Interestingly, the item "Patient active involvement in research and new treatment development" was excluded, and this may be because non-terminal patients or patients with many treatment options are not likely to participate in clinical trials [ 35 ]. This stems from the gaps between scientific research needs and patients' perspectives on research [ 16 ]. Improving and clarifying the understanding of research objectives, processes, and benefits to the overall public, will presumably lead to an increase in research participation [ 36 ]. Limitations The current study had some limitations which should be considered. Snowball sampling was not representative of the general chronically ill patient population and did not allow for a specific patient population to be reached. In this respect, researchers had to remove a relatively large group of study participants. Nevertheless, even though this study was not representative, the sampled group size was large enough for data analysis. The type of chronic illness was self-reported, and no clinical tests took place to confirm the participant was indeed suffering from a chronic illness. This study brought into play a variety of services and activities that POs gave to chronic patients, but it is possible that there were POs that gave additional services and activities that were not revealed in this study. The research population included patients with a variety of chronic diseases that showed a wide spectrum of services and activities. Had the research been conducted on a specific population with a single chronic disease, indeed, different outcomes may have appeared. Using the POQ – Patients Oriented Questionnaires in follow-up studies on POs that provide services and activities for chronically ill patients with the same disease will help focus PO activity, and minimize resources wasted on services and activities that are not needed by chronically ill patients. Conclusions Based upon this study conducted in Israel, we narrowed down 12 services and activities given by POs that were important to chronically ill patients in Israel. These services and activities were categorized into three groups: medical information, interpersonal support, and patients' rights. These categories allow us to better understand what chronically ill patients expect from POs. The POs need to focus their efforts and resources on handing out information about the disease and treatment, conducting personal support meetings and Family member training. They need to maximize resource efficiency for the benefit of patients and family alike. The use of the POQ will guide POs to provide services and activities focused on the genuine needs of chronically ill patients. Chronically ill patients will benefit to a greater extent from POs and optimize their ability to better manage their disease. This study tested the POQ on the general population of chronically ill patients, and further research is needed to test the POQ in different patient groups. Abbreviations PO Patient Organization POQ Patient-Oriented Questionnaire PAO Patient Advocacy Organizations PAG Patient Advocacy Groups SG Support Groups GE Group Education Declarations Acknowledgements Special thanks to Ermantine Adina Berkowitz for her help with language editing and reviewing our manuscript, and to Lerer Rotem for her administrative help during the research period Funding: This research did not receive any specific grant from funding agencies in the public, commercial, or non-profit sectors. Conflicts of interests: The authors declare no conflict of interest. Ethics approval: Ariel University’s research ethics committee (ref AU-AZ-20180307) reviewed and approved all aspects of this study. Consent to participate Written informed consent was obtained from all the participants prior to completing the questionnaire. Questionnaires were coded for anonymous data analysis. The type of disease and health status were self-reported by the participants. 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Int J of Environ Res Public Health. 2021;18(16):8628. https://doi.org/10.3390/ijerph18168628. Trauth JM, Musa D, Siminoff L, et al. Public attitudes regarding willingness to participate in medical research studies. J Health Soc Policy. 2000;12(2):23–43. https://doi.org/10.1300/J045v12n02_02. Sacristán JA, Aguarón A, Avendaño-Solá C, et al. Patient involvement in clinical research: why, when, and how. Patient Prefer Adherence. 2016;10:631–40. https://doi.org/10.2147/PPA.S104259. Cite Share Download PDF Status: Posted Version 1 posted You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. As a division of Research Square Company, we’re committed to making research communication faster, fairer, and more useful. We do this by developing innovative software and high quality services for the global research community. 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Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-2341132","acceptedTermsAndConditions":true,"allowDirectSubmit":true,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":158732314,"identity":"44831354-1931-49ea-ac55-26990b2504d5","order_by":0,"name":"Avi Zigdon","email":"data:image/png;base64,iVBORw0KGgoAAAANSUhEUgAAAZAAAAAyAQMAAABI0h/eAAAABlBMVEX///8AAABVwtN+AAAACXBIWXMAAA7EAAAOxAGVKw4bAAAAv0lEQVRIiWNgGAWjYFACxgaGDwwMPAzsYJ6EDFFaGGeAtDBDtPAQZQ8zWBlECwNhLfwzkps/29Tck+FnZmD88IPBgrAWiRuJDcY5x4p5JJsZmCV7iHLYmYMNyTlsCTwGhxkYpInyizxQy2GLfwk89ocZmH8TpcXgeGNjM2Mb0BZmBjbibDE8DtTR25fAI3GYsc2yx4AILXKH2R9/+PEtwZ6/vfnwjR8VdXIEtSABYDJgMCBFwygYBaNgFIwCnAAATy4uhnw7qoMAAAAASUVORK5CYII=","orcid":"https://orcid.org/0000-0003-1849-7206","institution":"Ariel University","correspondingAuthor":true,"submittingAuthor":false,"prefix":"","firstName":"Avi","middleName":"","lastName":"Zigdon","suffix":""},{"id":158732315,"identity":"375bebc3-7a71-43c3-a7e0-6e2af297ef21","order_by":1,"name":"Eyal Eckhaus","email":"","orcid":"","institution":"Ramat Gan Academic college","correspondingAuthor":false,"submittingAuthor":false,"prefix":"","firstName":"Eyal","middleName":"","lastName":"Eckhaus","suffix":""},{"id":158732316,"identity":"0aa59d19-2af8-48fc-86d6-ec37c1af3f14","order_by":2,"name":"Ofek Zigdon","email":"","orcid":"","institution":"Hebrew University of Jerusalem Faculty of Medicine","correspondingAuthor":false,"submittingAuthor":false,"prefix":"","firstName":"Ofek","middleName":"","lastName":"Zigdon","suffix":""},{"id":158732317,"identity":"a6f38730-9ea7-498c-a2fa-4af13f7ae568","order_by":3,"name":"Michal Rosenfeld","email":"","orcid":"","institution":"Ariel University School of Health Sciences","correspondingAuthor":false,"submittingAuthor":false,"prefix":"","firstName":"Michal","middleName":"","lastName":"Rosenfeld","suffix":""}],"badges":[],"createdAt":"2022-12-03 18:10:42","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-2341132/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-2341132/v1","draftVersion":[],"editorialEvents":[],"editorialNote":"","failedWorkflow":false,"files":[{"id":30284506,"identity":"a9dca29d-4853-48c1-9d43-f2f027aa1bab","added_by":"auto","created_at":"2022-12-13 21:30:41","extension":"png","order_by":1,"title":"Figure 1","display":"","copyAsset":false,"role":"figure","size":37671,"visible":true,"origin":"","legend":"\u003cp\u003eConfirmatory Factor Analysis of the Patient-Oriented Questionnaire. Fit of the model: CFI=0.98, NFI=0.97, TLI=0.96, RMSEA=0.058, chi-sqr=121.6 (df=36).\u003c/p\u003e","description":"","filename":"1.png","url":"https://assets-eu.researchsquare.com/files/rs-2341132/v1/2657ab904f212b815d7ff728.png"},{"id":40066185,"identity":"56b1e4b8-0186-498b-befc-789641bb6bff","added_by":"auto","created_at":"2023-07-15 07:42:50","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":353491,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-2341132/v1/212e3f95-eeb2-469f-a5ec-4d565a3e93b5.pdf"}],"financialInterests":"","formattedTitle":"Chronically ill Patients’ Perspectives on Support Services and Activities of Patient Organizations","fulltext":[{"header":"Introduction","content":"\u003cp\u003eGlobal morbidity and mortality are mainly caused by chronic diseases [\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e]. Patients diagnosed with a chronic disease feel disappointed with the quality of care, lack of availability of human resources, poor access to information, and inadequate responsiveness in the health care system [\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e, \u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e]. They are interested in assuming a greater role in the management of their treatments [\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e]. Strategies that encourage patient involvement in managing their illness help to achieve the best possible care for the patient, streamline the work of healthcare providers, and shape health policies [\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e, \u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e]. Effective communication and trust between patient and caregiver reduce health disparities and promotes health equality [\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e], and there is even evidence of the impact of patients' perceptions on the structures of health systems [\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e, \u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eIn recent decades, new conceptions of the patient's role in the therapeutic process have emerged [\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e]. These believe that it is of great importance for the patient to be placed at the center of the treatment process. The patient must be provided with all the tools and information needed to maintain active involvement in the decision-making process [\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e]. Patients occupy an important place in providing emotional support to other patients. But in recent years they have been offering other patients' guidance in the field of personal health, based on the experience they have acquired from managing similar health conditions, and the patient's experience has been defined as experiential knowledge acquired personally from the day-to-day management of the disease. The support offered by patients to other patients differs from the support offered by their physicians in type, style and topic, due to the different experience in managing the disease [\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eThese organizations play an important role in supporting chronically ill patients. They are the connecting threads that facilitate communication of information between patients and health care providers. They provide telephone counseling, offer online social network support [\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e], provide medical rights information [\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e], and specialize in achieving the desires and needs of the patients [\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e, \u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e]. They serve as an administrative link. They are funded by the government and health system [\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e]. They work to empower patients [\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e] and improve their health [\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e]. These organizations play an influential political role in shaping health policies. They assist in recruiting patients to accelerate research, financially supporting both patients and research programs [\u003cspan additionalcitationids=\"CR17 CR18 CR19 CR20 CR21\" citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e]. They work to share evidence-based medical knowledge, experiences, and preferences in managing a particular disease [\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e]. In most organizations, services and activities are provided at little to no cost and some even serve as social support groups protecting the patient from the disease's negative effects on the quality of life [\u003cspan citationid=\"CR24\" class=\"CitationRef\"\u003e24\u003c/span\u003e]. Some POs have been set up by patients who share the same experiences and provide emotional and practical support from their own experiences [\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e, \u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e]. Namely, Patient Advocacy Organizations (PAO) [\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e]; Patient Advocacy Groups (PAG) [\u003cspan citationid=\"CR26\" class=\"CitationRef\"\u003e26\u003c/span\u003e]; Support Groups (SG) [\u003cspan citationid=\"CR24\" class=\"CitationRef\"\u003e24\u003c/span\u003e]; Patient Organizations (PO) [\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e] and Group Education (GE) [\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eResearch shows that patients who are members of Patient Organizations (POs) rate their health better, are more satisfied with their treatment, and are more knowledgeable about techniques and treatment innovation than people who are not members of POs [\u003cspan citationid=\"CR27\" class=\"CitationRef\"\u003e27\u003c/span\u003e, \u003cspan citationid=\"CR28\" class=\"CitationRef\"\u003e28\u003c/span\u003e]. However, some PO policies limit their capability of providing an ideal personalized plan of care for each patient as a result of their financial dependency on the pharmaceutical industry and medical device manufacturers [\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e, \u003cspan citationid=\"CR29\" class=\"CitationRef\"\u003e29\u003c/span\u003e]. The number of POs has increased in recent years, and they compete for funding and visibility [\u003cspan citationid=\"CR30\" class=\"CitationRef\"\u003e30\u003c/span\u003e]. To our knowledge, services and activities of POs have yet to be studied from the patient's perspective, notably the services, that assist the patient with managing their disease. The aims of this preliminary study were to identify and map the services and activities of all types of non-profit POs from the general chronically ill patient's perspective.\u003c/p\u003e"},{"header":"Materials \u0026 Methods","content":"\u003cdiv id=\"Sec3\" class=\"Section2\"\u003e \u003ch2\u003eStudy design\u003c/h2\u003e \u003cp\u003eA prospective study was conducted among chronically ill patients in Israel, to identify and map the services and activities suggested by POs from the chronically ill patients' perspective. The participants were sampled using snowball sampling by pre-instructed research assistants. All research participants were aged\u0026thinsp;\u0026ge;\u0026thinsp;18 years. Non-lucid participants or those with cognitive impairments were excluded from this study. The questionnaire was distributed to people who were likely to have a chronic illness from the general population. Every first stage participant directed the research assistants to second stage participants. The questionnaires were independently filled out by the participants after signing an informed consent form.\u003c/p\u003e \u003cp\u003eThe first question was: \"Do you suffer from any disease?\" If yes, the second question was: \"What is the disease you are suffering from?\u0026rdquo;. If the self-reported disease was considered a chronic disease, the questionnaire was administered.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec4\" class=\"Section2\"\u003e \u003ch2\u003eEthical Considerations\u003c/h2\u003e \u003cp\u003e The research ethics committee of the Ariel University (ref AU-AZ-20180307) reviewed and approved all aspects of this study. Written informed consent was obtained from all the participants prior to completing the questionnaire. Questionnaires were coded for anonymous data analysis. The type of disease and health status were self-reported by the participants.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec5\" class=\"Section2\"\u003e \u003ch2\u003eParticipants\u003c/h2\u003e \u003cp\u003eThe total amount of filled-in questionnaires was 1,876, of which 481 were excluded either because they were incomplete and missing data could not be obtained or the participant did not report a chronic illness.\u003c/p\u003e \u003cp\u003eOf the valid 1,395 completed questionnaires, 842 (60.4%) were female participants and 553 (39.6%) were male participants. Furthermore, 23.7% were between the ages of 37\u0026ndash;55 (n\u0026thinsp;=\u0026thinsp;125 males; n\u0026thinsp;=\u0026thinsp;206 females), 23.5% between the ages of 56\u0026ndash;70 (n\u0026thinsp;=\u0026thinsp;119 males; n\u0026thinsp;=\u0026thinsp;209 females), and 52.8% were \u0026ge;\u0026thinsp;71 years old (n\u0026thinsp;=\u0026thinsp;309 males; n\u0026thinsp;=\u0026thinsp;427 females). Additionally, data on gender, marital status, country of birth, nationality, educational level, reported health status, and type of disease were collected. Respondents\u0026rsquo; characteristics are summarized in Table\u0026nbsp;\u003cspan refid=\"Tab1\" class=\"InternalRef\"\u003e1\u003c/span\u003e.\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab1\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 1\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eRespondents\u0026rsquo; characteristics (N\u0026thinsp;=\u0026thinsp;1395)\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"2\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003eRespondents, n (%)\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eGender\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eFemale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e842 (60.4)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eMale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e553 (39.6)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eMarital Status\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eMarried/Partner\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e891 (63.9)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eNever Married\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e233 (16.7)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eDivorced\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e147 (10.5)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eWidowed\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e117 (8.4)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eMissing\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e7 (0.5)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eCountry of Birth\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eIsrael\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e741 (53.1)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eOther\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e654 (46.9)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eReligion\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eJewish\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e990 (71)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eMuslim\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e292 (20.9)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eChristian\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e78 (5.6)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eDruze\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e11 (0.8)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eOther\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e24 (1.7)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eEducation level\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eUniversity\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e555 (39.8)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eCollege\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e253 (18.1)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eHigh School or below\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e566 (40.6)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eMissing\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e21 (1.5)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eReported Health Status\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eVery Good\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e205 (14.7)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eGood\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e636 (45.6)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eNot so good\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e377 (27)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eNot good\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e114 (8.2)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eBad\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e56 (4)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eChronic disease\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eDiabetes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e397 (28.5)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eCardiovascular disease\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e206 (14.8)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eAsthma or lung disease\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e161 (11.5)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eCancer\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e108 (7.7)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eArthritis\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e105 (7.5)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eMental Disorders\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e103 (7.4)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eOsteoporosis\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e49 (3.5)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eStroke (CVA)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e44 (3.2)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eCrohn\u0026rsquo;s disease and ulcerative colitis\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e27 (1.9)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eChronic kidney disease and renal failure\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e22 (1.6)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eParkinson's disease\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e20 (1.4)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eMultiple Sclerosis (MS)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e18 (1.3)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eEpilepsy\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e17 (1.2)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eFibromyalgia\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e11 (0.8)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eCystic fibrosis\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e4 (0.3)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eOther\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e103 (7.4)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cp\u003e[Insert Table\u0026nbsp;\u003cspan refid=\"Tab1\" class=\"InternalRef\"\u003e1\u003c/span\u003e. Respondents\u0026rsquo; characteristics (N\u0026thinsp;=\u0026thinsp;1395)]\u003c/p\u003e \u003cdiv id=\"Sec6\" class=\"Section3\"\u003e \u003ch2\u003eMeasures\u003c/h2\u003e \u003cp\u003eThe study questionnaire included 19 items that were developed based on the literature [\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e, \u003cspan additionalcitationids=\"CR13\" citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e, \u003cspan additionalcitationids=\"CR17 CR18 CR19 CR20 CR21 CR22\" citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e] and activities of POs in Israel (Table\u0026nbsp;\u003cspan refid=\"Tab2\" class=\"InternalRef\"\u003e2\u003c/span\u003e). In each of the questions, the participant was required to rate his or her answers on a 4-level ordinal scale (1-would not help at all to 4-would be very helpful). The research tool was content-validated by three PO managers, two Ph.D.-Level researchers, and a patient-rights specialist. After slight wording notes, appropriate changes were made into the items and the questionnaire was distributed.\u003c/p\u003e \u003cp\u003eTo test the reliability of item variables and the quality of variable comprehension, a pilot study was conducted among 40 chronically ill patients. The pilot study found a reliability level with Cronbach's α\u0026thinsp;=\u0026thinsp;0.862 for all items and no wording problems were found.\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab2\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 2\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eServices and activities suggested by Patient Organizations: Patient-Oriented Questionnaire (POQ)\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"2\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003eOn a scale from \u0026ldquo;1-would not help at all to 4-would be very helpful\u0026rdquo;\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eItem\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eVariable\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eQ1\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eAttending medical conferences and seminars on the disease\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eQ2\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eReceiving information about the disease and treatment\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eQ3\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eOnline medical information\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eQ4\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e24/7 Hotline\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eQ5\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003ePatient social gatherings\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eQ6\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003ePersonal support meetings with another PO member\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eQ7\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003ePhone consulting with a PO professional\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eQ8\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eSupport group meeting with other PO members\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eQ9\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eWeekend holiday with other PO members and their families\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eQ10\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eOnline support forum\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eQ11\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eClubs (e.g. Pilates, supporting exercise)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eQ12\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003ePatient rights information\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eQ13\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eAssistance in utilizing patient rights\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eQ14\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003ePatient active involvement in research and new treatment development\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eQ15\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eFinancial support for treatments\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eQ16\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eProfessional caregiver (non-patient), trained and familiar with the health system\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eQ17\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eFamily member, trained and familiar with the health system\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eQ18\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eAttend a course where you will learn to become better acquainted with your disease\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eQ19\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eExperienced patient, trained and familiar with the health system\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv id=\"Sec7\" class=\"Section2\"\u003e \u003ch2\u003eData Analysis\u003c/h2\u003e \u003cp\u003eExploratory Factor Analysis (EFA) was performed first half of the data (696 participants), followed by Confirmatory Factor Analysis (CFA) for convergent and discriminant validity [\u003cspan citationid=\"CR31\" class=\"CitationRef\"\u003e31\u003c/span\u003e]. On the other half of the data (699 participants). This splitting technique confirms that the model developed by the EFA is consistent. Model fit was estimated using Comparative Fit Index (CFI), Tucker-Lewis Index (TLI), Normed-Fit Index (NFI), and Root Mean Square Error of Approximation (RMSEA) [\u003cspan citationid=\"CR32\" class=\"CitationRef\"\u003e32\u003c/span\u003e]. Values ​​of CFI, NFI, and TLI\u0026thinsp;\u0026ge;\u0026thinsp;0.95, and RMSEA\u0026thinsp;\u0026le;\u0026thinsp;0.06 are considered a good fit [\u003cspan citationid=\"CR33\" class=\"CitationRef\"\u003e33\u003c/span\u003e]. We used SPSS v.24 for EFA and AMOS v.24 for CFA.\u003c/p\u003e \u003c/div\u003e"},{"header":"Results","content":"\u003cdiv id=\"Sec9\" class=\"Section2\"\u003e \u003ch2\u003eExploratory Factor Analysis\u003c/h2\u003e \u003cp\u003eKaiser-Meyer-Olkin measure of sampling adequacy was 0.89 which was above the recommended value of 0.6, and Bartlett\u0026rsquo;s test of sphericity was statistically significant (χ\u003csup\u003e2\u003c/sup\u003e (105)\u0026thinsp;=\u0026thinsp;4564.06, \u003cem\u003ep\u003c/em\u003e\u0026thinsp;\u0026lt;\u0026thinsp;0.001). A principle-components factor analysis of the 19 items using varimax rotations was then conducted. The literature varies for the minimum loading, ranging between 0.4 and 0.5. Therefore, for a rigorous solution we considered a minimum loading of 0.5. after suppressing loadings below 0.5 there were no cross loadings. Four items had low loadings and therefore suppressed, these were Q4, Q11, Q18, Q14.\u003c/p\u003e \u003cp\u003eEigen-values showed that each variable loaded onto three factors, explaining 60.45% of the variance. These were: (1) Interpersonal support, (2) Patients' rights, and (3) Medical information. Given these overall indicators, factor analysis was deemed to be suitable for the 15 items. Factor loadings is displayed in Table\u0026nbsp;\u003cspan refid=\"Tab3\" class=\"InternalRef\"\u003e3\u003c/span\u003e.\u003c/p\u003e \u003cp\u003eThe items removed were:\u003c/p\u003e \u003cp\u003e \u003cul\u003e \u003cli\u003e \u003cp\u003eQ11- Clubs (e.g. Pilates, supporting exercise).\u003c/p\u003e \u003c/li\u003e \u003cli\u003e \u003cp\u003eQ14 - Patient active involvement in research and new treatment development.\u003c/p\u003e \u003c/li\u003e \u003cli\u003e \u003cp\u003eQ18- Attend a course where you will learn to become better acquainted with your disease.\u003c/p\u003e \u003c/li\u003e \u003cli\u003e \u003cp\u003eQ4 24/7 Hotline\u003c/p\u003e \u003c/li\u003e \u003c/ul\u003e \u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab3\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 3\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eFactor loadings based on a principal components' analysis with varimax rotation\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"4\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"char\" char=\".\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cdiv align=\"char\" char=\".\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e \u003cdiv align=\"char\" char=\".\" class=\"colspec\" colname=\"c4\" colnum=\"4\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eItem #\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003eInterpersonal support\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c3\"\u003e \u003cp\u003ePatients' rights\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c4\"\u003e \u003cp\u003eMedical information\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eQ1\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e0.512\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eQ5\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e0.82\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eQ6\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e0.774\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eQ7\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e0.669\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eQ8\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e0.84\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eQ9\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e0.681\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eQ19\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e0.645\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eQ12\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e0.749\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eQ13\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e0.816\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eQ15\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e0.766\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eQ16\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e0.625\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eQ17\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e0.583\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eQ2\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c4\"\u003e \u003cp\u003e0.608\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eQ3\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c4\"\u003e \u003cp\u003e0.857\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eQ10\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c4\"\u003e \u003cp\u003e0.713\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cp\u003eNote. Factor loadings\u0026thinsp;\u0026lt;\u0026thinsp;0.5 were suppressed.\u003c/p\u003e \u003cp\u003eCronbach\u0026rsquo;s α examined reliability, namely internal consistency for the scales. The scales showed adequate alphas of 0.71 for medical information, 0.8 for patients' rights and 0.87 for interpersonal support. Scale α\u0026thinsp;=\u0026thinsp;0.88 for the complete scale.\u003c/p\u003e \u003cdiv id=\"Sec10\" class=\"Section3\"\u003e \u003ch2\u003eConfirmatory Factor Analysis\u003c/h2\u003e \u003cp\u003eWe used AMOS v.25 for the CFA. Three items (# 1,7,16) were removed to improve model fit. Next, items of each measure were loaded on a specific latent variable: three items for medical information, four items for patients' rights and five items for interpersonal support. CFA showed a good fit for the observed data. CFI\u0026thinsp;=\u0026thinsp;0.98, NFI\u0026thinsp;=\u0026thinsp;0.97, TLI\u0026thinsp;=\u0026thinsp;0.96, RMSEA\u0026thinsp;=\u0026thinsp;0.058, Chi-square\u0026thinsp;=\u0026thinsp;121.6 (df\u0026thinsp;=\u0026thinsp;36) (Figure. 1).\u003c/p\u003e \u003cp\u003e \u003c/p\u003e \u003cp\u003eFigure. 1 Groups of important services and activities given by POs. Every group is supported by the services and activities with the highest loadings in relation to the group. The higher loading values suggest a stronger correlation between the service or activity and the group.\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e"},{"header":"Discussions","content":"\u003cp\u003eThe services and activities of POs had yet to be studied from the patient's perspective, specifically those that assist the patient with managing their disease. This study investigated the contribution of PO services and activities from chronically ill patients' perspectives using structural comparison. CFA confirmed the structural validity of the model suggested in this study and found three main groups as important services given by POs: \"interpersonal support\", \"medical information\", and \"patients' rights\". \"Interpersonal support\" consists of five items regarding the patient's need to be in a social environment with similar patients. \u0026ldquo;Medical information\u0026rdquo; consists of three main cornerstones: information about the disease and treatment, online availability (e.g. forum, hotline), and online medical information. \"Patients' rights\" consists of four items focused on financial support.\u003c/p\u003e \u003cp\u003eThese finding represent the needs of patient during their chronic illness. Interpersonal support demonstrates the patients\u0026rsquo; need for intimate human connections to other patients who identify with the same disease. Studies found that PO meetings play a protective role against negative disease effects and emphasize the necessity of face-to-face interactions [\u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e]. Q7 (Phone consulting with a PO professional), which was excluded, supports the idea that since a PO-assigned advisor may resemble a physician-patient relationship (which is paternalistic) a PO-assigned advisor could be undesirable. Chronically ill patients want to have control and be involved in their disease management [\u003cspan citationid=\"CR24\" class=\"CitationRef\"\u003e24\u003c/span\u003e] and thus would avoid a paternalistic relationship with an advisor. Patients expect open communication with PO members, which allows two-way information transfer and deliberation about medical recommendations [\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eThe results suggest that chronically ill patients want to receive medical information from their PO. This finding is similar to previous research that shows the high importance of medical information sharing in PO activity [\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e]. This study adds to existing literature that medical information must be delivered as confidentially as possible to maintain privacy. This finding is based upon the variables representing the group \"medical information\". Support for that can be found in the exclusion of Q1 (Attending medical conferences and seminars on the disease) from the model, which represents receiving information about the disease in a public manner. In such, the information is usually evidence-based. This study found that receiving medical information from POs is done online and isn't necessarily evidence-based. Moreover, the information can be received in a non-frontal fashion. Chronic patients prefer receiving informal medical information in a face-to-face manner from other experienced patients. This provides them with an intimate human connection while receiving medical information [\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e, \u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e]. The evidence-based medical information found online is difficult to understand and raises anxiety among patients [\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e].\u003c/p\u003e \u003cp\u003ePatients' expressed four main desires from POs that have previously been reported: patients' rights information, patients' rights utilization, financial support for treatments, and family member training and familiarity with the healthcare system [\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e, \u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e]. Patients' rights in Israel come into play especially with regards to finances [\u003cspan citationid=\"CR34\" class=\"CitationRef\"\u003e34\u003c/span\u003e] (e.g. allowances, medications, medical devices, income tax exemptions, discounts) and thus we can assume that the \"patients' rights\" group referred to the financial aspect of PO services. The support of a knowing family member was shown to be of high importance in the process of disease management, probably due to the high accessibility of the \"source of information\" regarding patients' rights to the chronically ill patient. Administrative efficiency also allows in the process of right utilization by the patient. Interestingly, the item \"Patient active involvement in research and new treatment development\" was excluded, and this may be because non-terminal patients or patients with many treatment options are not likely to participate in clinical trials [\u003cspan citationid=\"CR35\" class=\"CitationRef\"\u003e35\u003c/span\u003e]. This stems from the gaps between scientific research needs and patients' perspectives on research [\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e]. Improving and clarifying the understanding of research objectives, processes, and benefits to the overall public, will presumably lead to an increase in research participation [\u003cspan citationid=\"CR36\" class=\"CitationRef\"\u003e36\u003c/span\u003e].\u003c/p\u003e \u003cdiv id=\"Sec12\" class=\"Section2\"\u003e \u003ch2\u003eLimitations\u003c/h2\u003e \u003cp\u003eThe current study had some limitations which should be considered. Snowball sampling was not representative of the general chronically ill patient population and did not allow for a specific patient population to be reached. In this respect, researchers had to remove a relatively large group of study participants. Nevertheless, even though this study was not representative, the sampled group size was large enough for data analysis. The type of chronic illness was self-reported, and no clinical tests took place to confirm the participant was indeed suffering from a chronic illness. This study brought into play a variety of services and activities that POs gave to chronic patients, but it is possible that there were POs that gave additional services and activities that were not revealed in this study. The research population included patients with a variety of chronic diseases that showed a wide spectrum of services and activities. Had the research been conducted on a specific population with a single chronic disease, indeed, different outcomes may have appeared. Using the POQ \u0026ndash; Patients Oriented Questionnaires in follow-up studies on POs that provide services and activities for chronically ill patients with the same disease will help focus PO activity, and minimize resources wasted on services and activities that are not needed by chronically ill patients.\u003c/p\u003e \u003c/div\u003e"},{"header":"Conclusions","content":"\u003cp\u003eBased upon this study conducted in Israel, we narrowed down 12 services and activities given by POs that were important to chronically ill patients in Israel. These services and activities were categorized into three groups: medical information, interpersonal support, and patients' rights. These categories allow us to better understand what chronically ill patients expect from POs. The POs need to focus their efforts and resources on handing out information about the disease and treatment, conducting personal support meetings and Family member training. They need to maximize resource efficiency for the benefit of patients and family alike. The use of the POQ will guide POs to provide services and activities focused on the genuine needs of chronically ill patients. Chronically ill patients will benefit to a greater extent from POs and optimize their ability to better manage their disease. This study tested the POQ on the general population of chronically ill patients, and further research is needed to test the POQ in different patient groups.\u003c/p\u003e"},{"header":"Abbreviations","content":"\u003cdiv class=\"DefinitionList\"\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003e\u003cb\u003ePO\u003c/b\u003e\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003ePatient Organization\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003e\u003cb\u003ePOQ\u003c/b\u003e\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003ePatient-Oriented Questionnaire\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003e\u003cb\u003ePAO\u003c/b\u003e\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003ePatient Advocacy Organizations\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003e\u003cb\u003ePAG\u003c/b\u003e\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003ePatient Advocacy Groups\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003e\u003cb\u003eSG\u003c/b\u003e\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003eSupport Groups\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003e\u003cb\u003eGE\u003c/b\u003e\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003eGroup Education\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003c/div\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003cstrong\u003e\u003cu\u003eAcknowledgements\u0026nbsp;\u003c/u\u003e\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eSpecial thanks to Ermantine Adina Berkowitz for her help with language editing and reviewing our manuscript, and to Lerer Rotem for her administrative help during the research period\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eFunding:\u0026nbsp;\u003c/strong\u003eThis research did not receive any specific grant from funding agencies in the public, commercial, or non-profit sectors.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConflicts of interests:\u0026nbsp;\u003c/strong\u003eThe authors declare no conflict of interest.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eEthics approval:\u0026nbsp;\u003c/strong\u003eAriel University\u0026rsquo;s research ethics committee (ref AU-AZ-20180307) reviewed and approved all aspects of this study.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConsent to participate\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eWritten informed consent was obtained from all the participants prior to completing the questionnaire. Questionnaires were coded for anonymous data analysis. The type of disease and health status were self-reported by the participants.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConsent for Publication\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eNot applicable\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eData Availability\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe data used in this study is available from the authors. However, Ariel University\u0026apos;s research ethics committee\u0026apos;s and the School of Health Sciences\u0026apos; approvals are required upon reasonable request.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAuthors\u0026apos; contributions\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eAll authors contributed to the conception of the research idea. The original draft of the manuscript was written by AZ. Conceptualization was by AZ and OZ; Methodology, investigation and validation was by AZ, and EE; Formal analysis and data curation was by EE; Writing review, editing and visualization was by AZ, EE, OZ and MR; AZ supervised the study.\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\u003cli\u003e\u003cspan\u003eWorld Health Organization. (2020). The top 10 causes of death. \u0026lt;background-color:#FF3300;uvertical-align:super;\u0026gt;https://www.who.int/news-room/fact-sheets/detail/the-top-10-causes-of-death\u0026lt;/background-color:#FF3300;uvertical-align:super;\u0026gt;\u0026lt;uvertical-align:super;\u0026gt;.\u0026lt;/uvertical-align:super;\u0026gt;\u0026lt;uvertical-align:super;\u0026gt; \u0026lt;/uvertical-align:super;\u0026gt;Accessed 25 October 2022.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eEliacin J, Fortney SK, Rattray NA, Kean J, Patients\u0026rsquo;. and caregivers\u0026rsquo; perspectives on healthcare navigation in Central Indiana, USA after brain injury. Health Soc Care Community. 2022;30(3):988\u0026ndash;97. \u0026lt;background-color:#CFBFB1;uvertical-align:super;\u0026gt;https://doi.org/10.1111/hsc.13275\u0026lt;/background-color:#CFBFB1;uvertical-align:super;\u0026amp;gt.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eAllvin R, Fjordkvist E, Blomberg K. 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Patient Prefer Adherence. 2016;10:631\u0026ndash;40. \u0026lt;background-color:#CFBFB1;uvertical-align:super;\u0026gt;https://doi.org/10.2147/PPA.S104259\u0026lt;/background-color:#CFBFB1;uvertical-align:super;\u0026amp;gt.\u003c/span\u003e\u003c/li\u003e\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":true,"highlight":"","institution":"","isAcceptedByJournal":false,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":true,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true},"keywords":"Patient Organizations (PO), Patient Perspectives, Chronically ill patients, Patient-Oriented Questionnaire, Services and Activities ","lastPublishedDoi":"10.21203/rs.3.rs-2341132/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-2341132/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003cp\u003e\u003cstrong\u003eBackground: \u003c/strong\u003eEvidence suggests that Patient Organizations (POs) are an important support factor in chronically ill patients' coping with their illness. This support differs significantly in topic, type, and style from the physician support, and they complement each other. Also, the chronically ill Patients' perspective on the activities and services offered by patient organizations has yet to be evaluated. This study aimed to identify and map the services and activities of all types of non-profit POs from the general chronically ill patient's perspective.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eMethods:\u003c/strong\u003e Nineteen services and activities of POs were sampled from the activities of patient organizations in Israel and from scientific literature and evaluated by chronically ill patients in Israel. Questionnaires were distributed among patients with chronic diseases (N=1395) using snowball sampling.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eResults\u003c/strong\u003e: Exploratory factor analysis (EFA) was performed, followed by confirmatory factor analysis (CFA) for convergent and discriminant validity. Findings showed that twelve services and activities suggested by patient organizations were found to represent chronically ill patients' needs and categorized into three groups: Interpersonal support (five items), patients' rights (three items), and medical information (four items).CFA showed a good fit for the observed data. CFI = 0.98, NFI = 0.97, TLI = 0.96, RMSEA = 0.058.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConclusions:\u003c/strong\u003e Patient organizations complement services and activities that are not available in health systems. However, patient organizations need to tailor their services and activities to the needs of chronically ill patients, to whom they provide the services, in a beneficial manner that will allow them to maximize their ability to better manage their disease.\u003c/p\u003e","manuscriptTitle":"Chronically ill Patients’ Perspectives on Support Services and Activities of Patient Organizations","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2022-12-13 21:30:36","doi":"10.21203/rs.3.rs-2341132/v1","editorialEvents":[{"type":"communityComments","content":0}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"6a2fa024-5ee6-426e-8db2-eb8e2971aa75","owner":[],"postedDate":"December 13th, 2022","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"posted","subjectAreas":[],"tags":[],"updatedAt":"2024-01-21T10:35:25+00:00","versionOfRecord":[],"versionCreatedAt":"2022-12-13 21:30:36","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-2341132","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-2341132","identity":"rs-2341132","version":["v1"]},"buildId":"rHA-KDH7Qsr4HCuvH75dn","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}