Assessing and reporting patient participation by means of patient preferences and experiences.

BACKGROUND: Although patient participation is strongly associated with high quality of healthcare, valid means to measure and report a comprehensive notion of patient participation are scarce. The Patient Preferences for Patient Participation (4Ps) is a new healthcare practice and research tool, comprising patients' preferences as well as experiences. The 4Ps employs 12 items for the patient to conceptualise patient participation. The aim of this paper is to describe how the two perspectives of patient participation, namely preferences and experiences, can be combined to visualise and report preference-based patient participation. METHODS: With four response alternatives in each section, the 4Ps offers sixteen possible combinations of degree of match per item. Theoretical and clinical principles fostered a tentative order of six ranks and three levels of preference-based patient participation. To test the standard, statistical analyses for ordinal data were performed, using data from a randomised controlled trial evaluating an intervention aiming to improve patient participation. Further, structures for visualising the preference-based patient participation of individuals and groups were suggested. RESULTS: Data from the 4Ps demonstrated the individuals' preference-based patient participation, indicating either a match or a mismatch for each item. Mismatches represented either the experience of participation surpassing the patient's preferences, or the patient's preferences for patient participation not being established. At group level, the suggested approach for visualising and reporting the 4Ps demonstrated that the intervention group had a significantly higher proportion of sufficient preference-based patient participation for certain items than the control group. These results had not been identified earlier, when using the preferences and experiences of patient participation as separate measures. CONCLUSIONS: Ways to easily acquaint stakeholders with patients' preferences for patient participation are needed, in order for healthcare staff to better use resources to match the basic requirements of individuals and groups. While the 4Ps can guide professionals to patient participation as framed in legislations, concept analyses and by patients, a visualisation of the results is needed to capture preference-based patient participation. The proposed route to representing degree of match in preferences and experiences may also be relevant to other dimensions of quality of healthcare.

Effects of a self-management programme on patient participation in patients with chronic heart failure or chronic obstructive pulmonary disease: A randomized controlled trial.

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.

Patient participation during and after a self-management programme in primary healthcare - The experience of patients with chronic obstructive pulmonary disease or chronic heart failure.

OBJECTIVE: Patient participation is facilitated by patients' ability to take responsibility for and engage in health issues. Yet, there is limited research as to the promotion of these aspects of patient participation in long-term healthcare interactions. This paper describes patient participation as experienced by patients with chronic obstructive pulmonary disease (COPD) or chronic heart failure (CHF); the aim was to describe if and how a self-management programme in primary healthcare influenced patient participation. METHODS: Patients who had participated in a self-management programme were interviewed in nine focus groups (36 patients). Data was analysed using qualitative content analysis. RESULTS: Patients described equality in personal interactions, opportunities to share and discuss, and a willingness to share and learn to facilitate patient participation in a self-management programme. Consequently, patient participation was promoted by a match between the individuals' personal traits and the context. CONCLUSION: Features facilitating patient participation by means of sharing and assimilating knowledge and insights should be included in self-management programmes and in the care for patients with COPD and CHF. PRACTICE IMPLICATIONS: A self-management programme can complement regular primary care regarding enhanced understanding of one's disease and support patient participation and the patient's own resources in self-management.

The development and initial validation of a clinical tool for patients' preferences on patient participation--The 4Ps.

AIMS: To report on the development and initial testing of a clinical tool, The Patient Preferences for Patient Participation tool (The 4Ps), which will allow patients to depict, prioritize, and evaluate their participation in health care. BACKGROUND: While patient participation is vital for high quality health care, a common definition incorporating all stakeholders' experience is pending. In order to support participation in health care, a tool for determining patients' preferences on participation is proposed, including opportunities to evaluate participation while considering patient preferences. METHODS: Exploratory mixed methods studies informed the development of the tool, and descriptive design guided its initial testing. The 4Ps tool was tested with 21 Swedish researcher experts (REs) and patient experts (PEs) with experience of patient participation. Individual Think Aloud interviews were employed to capture experiences of content, response process, and acceptability. RESULTS: 'The 4Ps' included three sections for the patient to depict, prioritize, and evaluate participation using 12 items corresponding to 'Having Dialogue', 'Sharing Knowledge', 'Planning', and 'Managing Self-care'. The REs and PEs considered 'The 4Ps' comprehensible, and that all items corresponded to the concept of patient participation. The tool was perceived to facilitate patient participation whilst requiring amendments to content and layout. CONCLUSIONS: A tool like The 4Ps provides opportunities for patients to depict participation, and thus supports communication and collaboration. Further patient evaluation is needed to understand the conditions for patient participation. While The 4Ps is promising, revision and testing in clinical practice is required.

Symptoms and impact of symptoms on function and health in patients with chronic obstructive pulmonary disease and chronic heart failure in primary health care.

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 groups.