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*

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

7 Scopus citations

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.

Original languageEnglish
Article number960373
JournalFrontiers in Psychology
Volume13
DOIs
StatePublished - 5 Sep 2022
Externally publishedYes

Keywords

  • VCA
  • ethics
  • informed consent
  • patient-centered care
  • patient–clinician communication
  • treatment decision making
  • upper limb amputation

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