Abstract
Integrating the patient's voice into research prioritization is essential for solving problems that patients care the most about in terms of health, symptom management, and survival. We used deliberative processes for adapting the existing model of protein-energy wasting (PEW) to one that includes stakeholder priorities, addressing gaps from the initial concept.
From September 2015- to December 2017, two diverse, deliberative panels of stakeholders (one for patients and one for clinicians) were recruited from local communities and national networks and met four times to provide an insight into developing a patient-centered model for PEW. After each stakeholder meeting, the research team added the factors and outcomes that reached consensus, using a content analysis. The stakeholder members were then able to confirm what had been collected from an earlier panel discussion and offer additional feedback. The final model was approved by stakeholders.
There were eight patient and twelve clinician stakeholders who participated in the panels. Factors and outcomes were only added or modified to the existing model, but none were deleted from the original PEW model. Critical factors identified by the stakeholders were ones related to lifestyle, treatment, and psychosocial aspects. The most important outcomes selected by stakeholders were living longer, staying out of the hospital, and being able to do more.
The approved patient-centered model for PEW represents a testable model for researchers which incorporates the patient's voice. Garnering this insight should assist in the prioritization of projects for a maximal value to patients and their families by future investigators.