Decisional needs assessment of patients with complex care needs in primary care

Abstract

Rationale Patients with complex care needs who frequently use health services often face challenges in managing their health and with integrated care, leading to frequent decision making. These complex care needs require a good understanding of health issues and their impact on daily life. As the decisional needs of this particular clientele have yet to be described in scientific literature, they warrant further study. Objectives To assess the decision‐making needs of patients with complex care needs (PCCN) who frequently use health care services. Methods We performed a multicenter cross‐sectional qualitative descriptive study in four institutions of the health and social services network of Quebec (Canada). We enrolled a convenience sample of PCCNs who frequently use health care services, health care providers, case managers, and decision‐makers. We conducted interviews and focus groups and investigated decisional needs according to the Ottawa decision support framework: roles played and desired in the decision‐making process, facilitators, and barriers. We conducted qualitative data collection and qualitative deductive/inductive thematic analysis within and across participating groups. Results In total, 16 patients, 38 clinicians, six case managers, and 14 decision‐makers participated in the study. The decisional needs of this clientele are numerous, varied and different from those of the general population. We identified 26 decisional needs grouped under five themes. The most frequent decisions related to visiting the emergency department, moving to a nursing home, and adhering to a plan or treatment. In addition, we identified new themes such as patients' fear and mistrust of health professionals, differences of opinion between health professionals and health professionals' preconceived opinions of patients. Conclusion We observed a wide range of types of decisions that patients face and differences in decision‐making needs across participating groups. Our results should inform future research on the development of a patient decision aid tool.

Unterstützungsbedarf und -möglichkeiten für Hausärzte in der Versorgung von Patienten mit komplexem Bedarf: Eine Fragebogenerhebung Berliner Hausärzte

“…Sie konstatieren Schwierigkeiten bei Kommunikation und Kooperation an den ambulant-stationären sowie an den hausärztlich-fachärztlichen Schnittstellen, insbesondere in der Versorgung älterer und multimorbider Patienten [9]. Das Zusammenwirken von physischen, psychologischen und sozialen Problemen mit Verlust von Selbstständigkeit und Autonomie führen oftmals zu unadressierten, komplexen Bedarfen und einem erhöhten Auf-wand für die Koordinierung der Inanspruchnahme verschiedenster Versorger [10,11].…”

Step-by-step Strategies for an Integrated Patient-Oriented Research: Lessons Learned from a Multicentered Study

“…This paper objective is to enhance the current literature and to provide examples of day-to-day pre, per, and post POR activities. With a view of sharing our knowledge and contributing to improve training programs on POR, we present the POR strategies we used from a collaborative experience in a multicenter qualitative research project (Poitras et al, 2020). The present paper reports POR and lessons learned that emerged from a research project conducted between 2017 and 2019.…”

What older adults and their caregivers need for making better health-related decisions at home: a participatory mixed methods protocol

“…21 Understanding and assessing the decision making needs not only of patients, but also of their caregivers and health providers in home care, will inform us about ways to better engage older adults and their caregivers in SDM, and how healthcare providers’ can better support them to make decisions together that best reflects their preferences. Numerous studies have assessed the decisional needs of specific populations, such as patients needing complex care, 22 those with heart disease, 23 advanced kidney disease 24 and psoriasis. 25 However, no studies that assess the decisional needs of older adults receiving home care were identified in a recent systematic review.…”