AUTHOR=Gacki-Smith Jessica , Kuramitsu Brianna R. , Downey Max , Vanterpool Karen B. , Nordstrom Michelle J. , Luken Michelle , Riggleman Tiffany , Altema Withney , Fichter Shannon , Cooney Carisa M. , Dumanian Greg A. , Jensen Sally E. , Brandacher Gerald , Tintle Scott , Levan Macey , Gordon Elisa J. TITLE=Information needs and development of a question prompt sheet for upper extremity vascularized composite allotransplantation: A mixed methods study JOURNAL=Frontiers in Psychology VOLUME=13 YEAR=2022 URL=https://www.frontiersin.org/journals/psychology/articles/10.3389/fpsyg.2022.960373 DOI=10.3389/fpsyg.2022.960373 ISSN=1664-1078 ABSTRACT=Background

People with upper extremity (UE) amputations report receiving insufficient information about treatment options. Furthermore, patients commonly report not knowing what questions to ask providers. A question prompt sheet (QPS), or list of questions, can support patient-centered care by empowering patients to ask questions important to them, promoting patient-provider communication, and increasing patient knowledge. This study assessed information needs among people with UE amputations about UE vascularized composite allotransplantation (VCA) and developed a UE VCA-QPS.

Methods

This multi-site, cross-sectional, mixed-methods study involved in-depth and semi-structured interviews with people with UE amputations to assess information needs and develop a UE VCA-QPS. Qualitative data were analyzed by thematic analysis; quantitative data were analyzed by descriptive statistics. The initial UE VCA-QPS included 130 items across 18 topics.

Results

Eighty-nine people with UE amputations participated. Most were male (73%), had a mean age of 46 years, and had a unilateral (84%) and below-elbow amputation (56%). Participants desired information about UE VCA eligibility, evaluation process, surgery, risks, rehabilitation, and functional outcomes. After refinement, the final UE VCA-QPS included 35 items, across 9 topics. All items were written at a ≤ 6th grade reading level. Most semi-structured interview participants (86%) reported being ‘completely’ or ‘very’ likely to use a UE VCA-QPS.

Conclusion

People with UE amputations have extensive information needs about UE VCA. The UE VCA-QPS aims to address patients’ information needs and foster patient-centered care. Future research should assess whether the UE VCA-QPS facilitates patient-provider discussion and informed decision-making for UE VCA.