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

AbstractBackground: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.