Noting the critical gap in knowledge of evidence-based healthcare practices aimed at women with limb loss, a research team developed a comprehensive, survey-based needs assessment to determine the unique impact of limb loss on women, including their physical and psychosocial needs.
The researchers organized a bank of existing limb loss-specific and nonlimb loss-specific surveys around domains of general health, quality of life, prosthetic use and needs, psychosocial health and behaviors, and body image. The surveys were supplemented with written items to ensure coverage of the relevant domains. Written items were refined with a multidisciplinary expert panel and then internally tested on a small group of rehabilitation, engineering, and research professionals.
A diverse sample of 12 people with various levels of limb loss piloted the instrument and participated in cognitive interviews. Pilot testing resulted in the removal of 13 items from an existing survey for, redundancy, 13 written items were deleted, 42 written items were revised, and 17 written items were added.
Common themes were reviewed following cognitive interviews to help refine items and ensure adequate coverage of important topics and included:
- Post-limb loss changes in employment status
- Post-limb loss changes in role in their residence
- General health
For older participants and individuals with nontraumatic limb loss, respondents thought about health issues that caused the limb loss or could lead to future limb loss (e.g., diabetes, dysvascular disease) and the importance of managing their health. Many respondents also discussed the need for knowledgeable, multidisciplinary healthcare providers to help manage their overall healthcare.
- Mental health and support of others
- Women-specific challenges
Common themes regarding the specific needs of women with limb loss included challenges of hormonal changes, weight management, social isolation, and lack of participation in physical activities (e.g., sports, exercise). Women also expressed the need for mutual decision-making with their healthcare providers, specifically their prosthetists.
The final version of the survey-based needs assessment included 15 subsections. “The needs assessment will generate a subset of scores across several physical and psychosocial domains, which will help identify salient constructs related to health and well-being of women with limb loss,” the study’s authors wrote.
The open-access study, “Women with limb loss: rationale, design and protocol for a national, exploratory needs assessment to evaluate the unique physical and psychosocial needs of women with limb loss,” was published in BMJ Open.