Participation preferences of health service users in health care decision-making regarding rehabilitative care in Germany-A cross-sectional study

Abstract

Background: Involving patients and citizens in health care decision-making is considered increasingly important in Germany. Participatory structures have been implemented, especially in rehabilitative care. However, it is unknown whether and to what extent German patients and citizens want to participate in decisions that exceed their own medical treatment.

Objective: This study aimed to survey participation preferences and associated factors of health service users in decisions regarding rehabilitative care at micro, meso and macro levels.

Methods: A questionnaire was sent to 3872 former rehabilitants. We collected participation preferences using the Control Preference Scale or an adapted form. Possible influencing factors were examined using logistic regression models.

Results: The response rate was 5.7% (n = 217). At all decision-making levels, joint decision-making was preferred. At the macro level, preferences for actively participating were the highest. Preferences were significantly interrelated between decision-making levels. At the micro level, an orthopaedic indication significantly decreased the desire for participation compared to psychosomatic indications (odds ratio = 0.44, p = .019).

Discussion: Participants wanted to be equally involved in decision-making as experts. Higher preferences for active participation at the macro level might be due to dissatisfaction with the current health care organisation and lack of trust in politicians. Compared to the general public, our study sample was older (73.3% between 50 and 69 years) and more often chronically ill-factors associated with increased participation preferences in the literature.

Conclusion: Contrary to the identified preferences, participation opportunities in the German health care system are rare. Further research on participation preferences and structures that enable meaningful involvement are needed.

Keywords: health care decision-making; health policy; participation preferences; patient and public involvement; rehabilitation.