Information needs and development of a question prompt sheet for upper extremity vascularized composite allotransplantation: A mixed methods study

Jessica Gacki-Smith; Brianna R Kuramitsu; Max Downey; Karen B Vanterpool; Michelle J Nordstrom; Michelle Luken; Tiffany Riggleman; Withney Altema; Shannon Fichter; Carisa M Cooney; Greg A Dumanian; Sally E Jensen; Gerald Brandacher; Scott Tintle; Macey Levan; Elisa J Gordon

doi:10.3389/fpsyg.2022.960373

Information needs and development of a question prompt sheet for upper extremity vascularized composite allotransplantation: A mixed methods study

Front Psychol. 2022 Sep 5:13:960373. doi: 10.3389/fpsyg.2022.960373. eCollection 2022.

Authors

Jessica Gacki-Smith¹, Brianna R Kuramitsu¹, Max Downey², Karen B Vanterpool², Michelle J Nordstrom³, Michelle Luken⁴, Tiffany Riggleman⁴, Withney Altema⁴, Shannon Fichter⁴, Carisa M Cooney⁵, Greg A Dumanian⁶, Sally E Jensen⁷, Gerald Brandacher⁸, Scott Tintle⁹, Macey Levan^{10

8}, Elisa J Gordon¹¹

Affiliations

¹ Center for Health Services and Outcomes Research, Northwestern University Feinberg School of Medicine, Chicago, IL, United States.
² Center for Surgical and Transplant Applied Research, Department of Surgery, NYU Langone Health Transplant Institute, New York University Grossman School of Medicine, New York, NY, United States.
³ Center for Rehabilitation Sciences Research, Uniformed Services University of the Health Sciences, Walter Reed National Military Medical Center, Bethesda, MD, United States.
⁴ Henry M. Jackson Foundation, Center for Rehabilitation Sciences Research, Uniformed Services University of the Health Sciences, Walter Reed National Military Medical Center, Bethesda, MD, United States.
⁵ Department of Plastic and Reconstructive Surgery, Johns Hopkins University School of Medicine, Baltimore, MD, United States.
⁶ Department of Surgery, Northwestern University Feinberg School of Medicine, Chicago, IL, United States.
⁷ Department of Medical Social Sciences and Department of Surgery, Northwestern University Feinberg School of Medicine, Chicago, IL, United States.
⁸ Johns Hopkins University School of Medicine, Baltimore, MD, United States.
⁹ Uniformed Services University of the Health Sciences, Walter Reed National Military Medical Center, Bethesda, MD, United States.
¹⁰ Center for Surgical and Transplant Applied Research, Department of Surgery and Department of Population Health, NYU Langone Health Transplant Institute, New York University Grossman School of Medicine, New York, NY, United States.
¹¹ Department of Surgery-Division of Transplantation, Center for Health Services and Outcomes Research, Center for Bioethics and Medical Humanities, Northwestern University Feinberg School of Medicine, Chicago, IL, United States.

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.

Keywords: VCA; ethics; informed consent; patient-centered care; patient–clinician communication; treatment decision making; upper limb amputation.

Grants and funding

UL1 TR001422/TR/NCATS NIH HHS/United States