Engaging patients, family caregivers and healthcare providers to develop metrics tailored to a palliative care population: a content validity process.

Background: Assessment of patient readiness for hospital discharge has been advocated as an important component of discharge preparation. However, no measures focused on hospital-to-home transitions for patients receiving a palliative approach to care, or the associated difficulties in coping at home after hospital discharge, have been developed to date. Using a co-design approach, the purpose of this study was to (1) adapt two scales to a palliative care population, one of which was developed to assess readiness for the hospital-to-home transition and another developed to assess difficulty in coping post-transition and to (2) test the content validity of both scales from the perspectives of patients, family caregivers, and healthcare providers. The scales chosen for adaptation were the Readiness for Hospital Discharge Scale and Post-Discharge Coping Difficulty Scale.

Methodology: The research team made initial adaptations to scale language prior to developing three parallel versions of each scale to be patient-, family caregiver-, and healthcare provider-facing. We conducted content validity testing of the items on both scales by asking each participant group to rate scale items on their usefulness, and to provide suggestions on ways items could be improved. We calculated the Item Content Validity Index and a modified Kappa statistic for each scale item, and calculated the Scale Content Validity Index for each of the three versions of the scales. Refinements were informed by qualitative feedback provided by participants during the content validity process. Final refinements were informed by members of a Patient and Family Advisory Council, and healthcare provider research team members.

Results: Moderate modifications were required to the three versions of both scales. Modifications included adding items, modifying item language, and adding examples in parentheses to enhance item context. Patients, family caregivers, and healthcare providers deemed the research team's initial modifications to the scales useful, as evidenced by each scale yielding a Scale Content Validity Index of higher than 0.5.

Conclusion: The methodology provided can be used as an example of ways to engage and leverage the experiences of healthcare system users and healthcare providers throughout the outcome measures development process. The next steps will be to utilize the adapted scales as intervention outcome measures in a subsequent implementation study.