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

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

Journal

Frontiers in psychology
ISSN: 1664-1078
Titre abrégé: Front Psychol
Pays: Switzerland
ID NLM: 101550902

Informations de publication

Date de publication:
2022
Historique:
received: 02 06 2022
accepted: 20 07 2022
entrez: 22 9 2022
pubmed: 23 9 2022
medline: 23 9 2022
Statut: epublish

Résumé

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. 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. 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. 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.

Sections du résumé

Background UNASSIGNED
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 UNASSIGNED
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 UNASSIGNED
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 UNASSIGNED
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.

Identifiants

DOI: 10.3389/fpsyg.2022.960373 PMID: 36132190 PMC: PMC9484522
pubmed: 36132190
doi: 10.3389/fpsyg.2022.960373
pmc: PMC9484522
doi:

Types de publication

Journal Article

Langues

eng

Pagination

960373

Subventions

Organisme : NCATS NIH HHS
ID : UL1 TR001422
Pays : United States

Informations de copyright

Copyright © 2022 Gacki-Smith, Kuramitsu, Downey, Vanterpool, Nordstrom, Luken, Riggleman, Altema, Fichter, Cooney, Dumanian, Jensen, Brandacher, Tintle, Levan and Gordon.

Déclaration de conflit d'intérêts

The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

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Auteurs

Jessica Gacki-Smith (J)

Center for Health Services and Outcomes Research, Northwestern University Feinberg School of Medicine, Chicago, IL, United States.

Brianna R Kuramitsu (BR)

Center for Health Services and Outcomes Research, Northwestern University Feinberg School of Medicine, Chicago, IL, United States.

Max Downey (M)

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.

Karen B Vanterpool (KB)

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.

Michelle J Nordstrom (MJ)

Center for Rehabilitation Sciences Research, Uniformed Services University of the Health Sciences, Walter Reed National Military Medical Center, Bethesda, MD, United States.

Michelle Luken (M)

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.

Tiffany Riggleman (T)

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.

Withney Altema (W)

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.

Shannon Fichter (S)

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.

Carisa M Cooney (CM)

Department of Plastic and Reconstructive Surgery, Johns Hopkins University School of Medicine, Baltimore, MD, United States.

Greg A Dumanian (GA)

Department of Surgery, Northwestern University Feinberg School of Medicine, Chicago, IL, United States.

Sally E Jensen (SE)

Department of Medical Social Sciences and Department of Surgery, Northwestern University Feinberg School of Medicine, Chicago, IL, United States.

Gerald Brandacher (G)

Johns Hopkins University School of Medicine, Baltimore, MD, United States.

Scott Tintle (S)

Uniformed Services University of the Health Sciences, Walter Reed National Military Medical Center, Bethesda, MD, United States.

Macey Levan (M)

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.
Johns Hopkins University School of Medicine, Baltimore, MD, United States.

Elisa J Gordon (EJ)

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.

Classifications MeSH