Purpose <p>The purpose of this study was to understand health-related quality of life (HRQOL) factors for adults who experience major extremity trauma, including limb preservation and amputation, to guide the selection and creation of patient-reported outcome (PRO) measures.</p> Methods <p>A thematic content qualitative analysis was used to study service members (SMs) with a history of major extremity trauma and clinical providers with expertise in limb trauma, limb loss, and limb preservation/reconstruction. Focus groups were conducted at three Military Treatment Facilities and one Department of Veterans Affairs Medical Center.</p> Results <p>Fifty-six SMs and 34 clinicians participated. Thirty-six percent of focus group comments were coded under Physical Health, 31% Emotional Health, and 28% Social Participation. These results were largely consistent across clinicians and SMs, and clinical subgroups, with a few exceptions such as the relevance of fine motor tasks and prosthetic devices for SMs with upper extremity injury/limb loss, and orthotic devices for SMs with limb preservation/reconstruction.</p> Conclusion <p>Many HRQOL topics identified are shared with existing general PRO measures—including pain, physical function, anxiety, depression, anger, positive affect and well-being, fatigue, social participation, and loneliness—as well as rehabilitation-focused PRO measures—such as resilience, grief/loss, stigma, self-esteem, mobility, fine motor functioning, self-care, and independence. This qualitative research can be used to inform domains of HRQOL in need of new PRO measures for this population, including satisfaction with orthosis/prosthesis, satisfaction with physical abilities/athleticism, body image, future outlook, and vocational impact.</p>

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Health-related quality of life after major extremity trauma: qualitative research with military service members and clinicians to inform measurement of patient-reported outcomes

  • Callie E. Tyner,
  • Pamela A. Kisala,
  • Jerry Slotkin,
  • Matthew L. Cohen,
  • Jill M. Cancio,
  • Alison L. Pruziner,
  • Christopher L. Dearth,
  • David S. Tulsky

摘要

Purpose

The purpose of this study was to understand health-related quality of life (HRQOL) factors for adults who experience major extremity trauma, including limb preservation and amputation, to guide the selection and creation of patient-reported outcome (PRO) measures.

Methods

A thematic content qualitative analysis was used to study service members (SMs) with a history of major extremity trauma and clinical providers with expertise in limb trauma, limb loss, and limb preservation/reconstruction. Focus groups were conducted at three Military Treatment Facilities and one Department of Veterans Affairs Medical Center.

Results

Fifty-six SMs and 34 clinicians participated. Thirty-six percent of focus group comments were coded under Physical Health, 31% Emotional Health, and 28% Social Participation. These results were largely consistent across clinicians and SMs, and clinical subgroups, with a few exceptions such as the relevance of fine motor tasks and prosthetic devices for SMs with upper extremity injury/limb loss, and orthotic devices for SMs with limb preservation/reconstruction.

Conclusion

Many HRQOL topics identified are shared with existing general PRO measures—including pain, physical function, anxiety, depression, anger, positive affect and well-being, fatigue, social participation, and loneliness—as well as rehabilitation-focused PRO measures—such as resilience, grief/loss, stigma, self-esteem, mobility, fine motor functioning, self-care, and independence. This qualitative research can be used to inform domains of HRQOL in need of new PRO measures for this population, including satisfaction with orthosis/prosthesis, satisfaction with physical abilities/athleticism, body image, future outlook, and vocational impact.