Some patients with complex healthcare needs become high users of healthcare services. Case management allows these patients and their interprofessional team to work together to evaluate their needs, priorities and available resources. High-user patients must make an informed decision when choosing whether to engage in case management and currently there is no tool to support them.
The objective of this study was to develop and conduct a pilot alpha testing of a patient decision aid that supports high-user patients with complex needs and the teams who guide those patients in shared decision making when engaging in case management.
We chose a user-centered design to co-develop a patient decision aid with stakeholders informed by the Ottawa Research Institute and International Patient Decision Aid Standards frameworks. Perceptions and preferences for the patient decision aid’s content and format were assessed with patients and clinicians and were iteratively collected through interviews and focus groups. We developed a prototype and assessed its acceptability by using a think-aloud method and a questionnaire with three patient-partners, six clinicians and seven high-user patients with complex needs.
The three rounds of evaluation to assess the decision aid’s acceptability highlighted comments related to simplicity, readability and visual aspect. A section presenting clinical vignettes including story telling was identified as the most helpful.
We created and evaluated a patient decision aid. Considering the positive comments, we believe that this aid has the potential to help high-user patients with complex care needs make better choices concerning case management.
Plain Language Summary
Some patients are living with physical and mental health problems. They also may have handicaps and unsuitable backgrounds. This may lead them to use health services more often. Case management is a service offered by a team of health professionals. They help patients to decide what is important to them based on their values and preferences. Currently, no tools exist for that service. We built and assessed a tool to support patients in their decisions. With this tool, they think about engaging in case management or continuing with usual care. They can also postpone their decision to a later time. This tool will present data based on scientific studies about case management. It will help patients to clarify their values and preferences to make the best decision for them. This tool was built with a team of researchers, healthcare professionals, managers and patient-partners. It was built according to several guidelines. We met participants and they answered questions that helped us to build our tool. We also ensured the tool was acceptable to them. The most frequent comments were to make it simpler and to use simple vocabulary. The look was also important for the participants. The latter found that the section where patients could write their own story was useful. Patients also found that reading stories about other patients like them was helpful. Our tool will help patients with complex care needs make better choices concerning their health based on their values and scientific data.
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The authors thank all the patients that contributed to this research, the Quebec SPOR SUPPORT Unit. France Légaré holds the Canada Research Chair in Shared Decision Making and Knowledge Translation.
This research project was funded by the Quebec-SPOR SUPPORT Unit, a methodological platform of the Canadian Institutes of Health Research, Strategy for Patient-Oriented Research.
Conflicts of Interest/Competing Interests
Marie-Eve Poitra, France Légaré, Vanessa T. Vaillancourt, Isabelle Godbout, Annie Poirier, Karina Prévost, Claude Spence, Maud-Christine Chouinard, Hervé Tchala Vignon Zomahoun, Lobna Khadhraoui, José Massougbodji, Mathieu Bujold, Pierre Pluye and Catherine Hudon have no conflicts of interest that are directly relevant to the content of this article.
Ethics approval was obtained from the Ethics Committee of the Centre Intégré Universitaire de Santé et de Services Sociaux du Saguenay-Lac-Saint-Jean.
Availability of Data and Material
The datasets generated and/or analysed during the current study are available from the corresponding author on reasonable request.
Consent to participate
All participants gave their informed consent to participate in the study.
Consent to publish
All authors gave their consent to publish and approved the final version of the article.
MEP is the principal investigator of the study. She conceived the idea for the paper and led the writing. VTV and FL were major contributors to the drafting of the paper. CH is the principal author of the systematic review used to create the decision aid. FL, IG, MB, CP, AP, MCC, BD, PP, KP and CH were involved in the design, data collection and conduct of the study. HZTV, JM and LK were involved in the data extraction and analysis.
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Poitras, ME., Légaré, F., Tremblay Vaillancourt, V. et al. High Users of Healthcare Services: Development and Alpha Testing of a Patient Decision Aid for Case Management. Patient 13, 757–766 (2020). https://doi.org/10.1007/s40271-020-00465-0