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Background: Self-management strategies are crucial to patients with long-term conditions and can presumably promote patient participation, given that to patients, patient participation connotes opportunities for self-care (along with being engaged in an exchange of knowledge, a phrasing of joint goals and planning of care). So far, limited attention has been given to what components support self-management and what outcomes can be achieved. An exclusive self-management programme in primary healthcare entailed assessing its influence on patient participation. Aim: To describe the effects of a self-management programme on preferences for, and experiences of, patient participation in patients with chronic obstructive pulmonary disease or chronic heart failure. Methods: A randomized controlled trial with a six session intervention programme, including phrasing of individual action plans and group discussions on the patients' issues. The intervention group (n=59) received standard care and the self-management programme, and the control group (n=59) received standard care only. Data was collected at baseline and at three months and 12 months after the intervention started, using the Patient Preferences for Patient Participation (the 4Ps) measure. Results: No significant differences were found within the groups, or between the groups, in preferences and experiences of patient participation, either in summary score or at an item level. Conclusion: A self-management group programme led by trained primary healthcare staff in primary care did not serve as means to influence patients' experience of patient participation in the care of their long-term condition. Further studies are needed in regard to what facilitates patient participation in this setting and beyond.

The Patient Preferences for Patient Participation tool (The 4Ps) was developed to aid clinical dialogue and to help patients to 1) depict, 2) prioritise, and 3) evaluate patient participation with 12 pre-set items reiterated in the three sections. An earlier qualitative evaluation of The 4Ps showed promising results. The present study is a psychometric evaluation of The 4Ps in patients with chronic heart or lung disease (n = 108) in primary and outpatient care. Internal scale validity was evaluated using Rasch analysis, and two weeks test–retest reliability of the three sections using kappa/weighted kappa and a prevalence- and bias-adjusted kappa. The 4Ps tool was found to be reasonably valid with a varied reliability. Proposed amendments are rephrasing of two items, and modifications of the rating scale in Section 2. The 4Ps is suggested for use to increase general knowledge of patient participation, but further studies are needed with regards to its implementation.

Patient participation is a core element in legislation in most western countries today. From the patient’s perspective, patient participation includes respect, equality, sharing of knowledge, joint planning, and self-management. However, participation is not always experienced, and the patient’s experiences and preferences are seldom mapped. The general aim of this thesis was to enhance the knowledge on patient participation from the preferences of patients with long-term conditions in outpatient healthcare by evaluating a measure (The Patient Preferences for Patient Participation: the 4Ps) on patient participation and by investigating a self-management programme’s impact on patient participation. Qualitative evaluations of the 4Ps included Think Aloud interviews with patient experts (n = 11) and research experts (n = 10) in Study I. Psychometric evaluations were performed in Study II (n = 108) and after amendments in Study III (n = 150). Effects of the self-management programme on patient participation were investigated in a randomised controlled trial with the 4Ps as the outcome measure in Study III (n = 118), and in Study IV were influences investigated qualitatively in nine focus group interviews (n = 36). The 4Ps was found to be sufficiently valid and reliable. As measured with the 4Ps, patients with long-term conditions had both set preferences in and experiences of patient participation, regardless of randomised to a self-management programme or not. Qualitatively the programme was found to include patient participation and to influence self-management. The use of diverse methods was beneficial and complementary. The sufficiently valid and reliable 4Ps can fil the gap of a measure to map preferences for and experiences of patient participation. Patients with long-term conditions have set preferences for participation. The self-management programme can be applied to influence participation and future responsibilities.

BACKGROUND: Patients with chronic obstructive pulmonary disease (COPD) and chronic heart failure (CHF) seem to have several symptoms in common that impact health. However, methodological differences make this difficult to compare. AIM: Comparisons of symptoms, impact of symptoms on function and health between patients with COPD and CHF in primary health care (PHC). METHOD: The study is cross sectional, including patients with COPD (n=437) and CHF (n=388), registered in the patient administrative systems of PHC. The patients received specific questionnaires--the Memorial Symptom Assessment Scale, the Medical Research Council dyspnea scale, and the Fatigue Impact Scale--by mail and additional questions about psychological and physical health. RESULTS: The mean age was 70 ± 10 years and 78 ± 10 years for patients with COPD and CHF respectively (P=0.001). Patients with COPD (n=273) experienced more symptoms (11 ± 7.5) than the CHF patients (n=211) (10 ± 7.6). The most prevalent symptoms for patients with COPD were dyspnea, cough, and lack of energy. For patients with CHF, the most prevalent symptoms were dyspnea, lack of energy, and difficulty sleeping. Experience of dyspnea, cough, dry mouth, feeling irritable, worrying, and problems with sexual interest or activity were more common in patients with COPD while the experience of swelling of arms or legs was more common among patients with CHF. When controlling for background characteristics, there were no differences regarding feeling irritable, worrying, and sexual problems. There were no differences in impact of symptoms or health. CONCLUSION: Patients with COPD and CHF seem to experience similar symptoms. There were no differences in how the patients perceived their functioning according to their cardinal symptoms; dyspnea and fatigue, and health. An intervention for both groups of patients to optimize the management of symptoms and improve function is probably more relevant in PHC than focusing on separate diagnosis

Kersti Theander,1,2 Mikael Hasselgren,2,3 Kristina Luhr,4 Jeanette Eckerblad,5 Mitra Unosson,5 Ingela Karlsson1 1Department of Nursing, Faculty of Health Science and Technology, Karlstad University, Karlstad, Sweden; 2Primary Care Research Unit, County Council of Värmland, Karlstad, Sweden; 3Department of Medicine, Örebro University, Örebro, Sweden; 4Family Medicine Research Centre, Örebro County Council, Örebro, Sweden; 5Department of Social and Welfare Studies, Faculty of Health Sciences, Linköping University, Linköping, Sweden Background: Patients with chronic obstructive pulmonary disease (COPD) and chronic heart failure (CHF) seem to have several symptoms in common that impact health. However, methodological differences make this difficult to compare. Aim: Comparisons of symptoms, impact of symptoms on function and health between patients with COPD and CHF in primary health care (PHC). Method: The study is cross sectional, including patients with COPD (n=437) and CHF (n=388), registered in the patient administrative systems of PHC. The patients received specific questionnaires – the Memorial Symptom Assessment Scale, the Medical Research Council dyspnea scale, and the Fatigue Impact Scale – by mail and additional questions about psychological and physical health. Results: The mean age was 70±10 years and 78±10 years for patients with COPD and CHF respectively (P=0.001). Patients with COPD (n=273) experienced more symptoms (11±7.5) than the CHF patients (n=211) (10±7.6). The most prevalent symptoms for patients with COPD were dyspnea, cough, and lack of energy. For patients with CHF, the most prevalent symptoms were dyspnea, lack of energy, and difficulty sleeping. Experience of dyspnea, cough, dry mouth, feeling irritable, worrying, and problems with sexual interest or activity were more common in patients with COPD while the experience