Abstract
BackgroundPatient participation is considered central for good healthcare. Yet, the concept is not fully understood when it comes to patients' experiences of participation in conjunction with their preferences, particularly in long‐term healthcare. The aim of this study was to investigate the extent and variation of preference‐based patient participation in patients with end‐stage kidney disease (ESKD).MethodsA cross‐sectional study was conducted with 346 patients in renal care. The main variables were patients' preferences for and experiences of patient participation, determined using the Patient Preferences for Patient Participation tool, the 4Ps. Analyses identified the degree of match between preferences and experiences, that is, the preference‐based patient participation measure.ResultsOverall, 57%–84% of the patients reached a sufficient level of preference‐based patient participation on the items, while 2%–12% reached an insufficient level. A mismatch indicated either less or more participation than preferred; for example, 40% had less experience than preferred for taking part in planning, and 40% had more than preferred for managing treatment.ConclusionThis study shows that, although many patients reach a sufficient level of preference‐based patient participation, this is not the case for all patients and/or attributes. Further opportunities for a mutual understanding of patients' preferences are needed for healthcare professionals to support person‐centred patient participation.Patient or Public ContributionThe 4Ps is manufactured in collaboration with people with experience of the patient role, and persons living with ESKD were engaged in identifying their preferences and experiences of participation in renal care.
Highlights
Worldwide, healthcare legislation and policies incorporate patients' rights to influence their own health, healthcare and treatment—often defined as ‘patient participation’.1,2 Patient participation is known to have positive outcomes for health[3]: Participation may enhance empowerment and satisfaction with care,[2] as well as independence[4] and self‐care management.[5]
This study investigated the extent and variation of preference‐based patient participation within the context of renal care
Patients with end‐stage kidney disease (ESKD) most often reached a good match between their preferences for and experiences of patient participation in renal care
Summary
Healthcare legislation and policies incorporate patients' rights to influence their own health, healthcare and treatment—often defined as ‘patient participation’.1,2 Patient participation is known to have positive outcomes for health[3]: Participation may enhance empowerment and satisfaction with care,[2] as well as independence[4] and self‐care management.[5]. The concept is not fully understood when it comes to patients' experiences of participation in conjunction with their preferences, in long‐term healthcare. The aim of this study was to investigate the extent and variation of preference‐based patient participation in patients with end‐stage kidney disease (ESKD). A mismatch indicated either less or more participation than preferred; for example, 40% had less experience than preferred for taking part in planning, and 40% had more than preferred for managing treatment. Further opportunities for a mutual understanding of patients' preferences are needed for healthcare professionals to support person‐centred patient participation. Patient or Public Contribution: The 4Ps is manufactured in collaboration with people with experience of the patient role, and persons living with ESKD were engaged in identifying their preferences and experiences of participation in renal care
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