RESUMO
BACKGROUND: Blood flow restriction (BFR) combined with low-load resistance training could minimize exercise barriers and offer strength and mobility improvements for people with advanced Multiple Sclerosis (MS); but patient experience has not been evaluated. PURPOSE: The purpose of this study was to assess the satisfaction, acceptability, and impact of combining low-load resistance training with BFR for individuals with advanced MS (Expanded Disability Status Scale: EDSS 6.0-7.0). METHODS: We used an interpretive phenomenological research design and post-intervention interviews to explore participant experiences of a novel low-load resistance training program with BFR. RESULTS: Interview participants (n = 14) were 55.4 ± 6.2 years old and were diagnosed with MS for 19.1 ± 10.7 years. Four themes were identified (satisfaction, acceptability, impact, program refinement) with 14 subthemes. Satisfaction was mixed based on overall expectations, yet all participants recommended the intervention. Acceptability was evidenced by all participants identifying comfortable/easy aspects, and modifiable elements that could improve comfort. Impact was evidenced with translation to everyday life activities, strength/self-efficacy/psychological improvements, effectiveness, and fatigue reduction. CONCLUSIONS: Participants found BFR combined with low-load resistance training to be satisfactory (mixed initial expectations), acceptable (comfortable/easy), and impactful (translating to life improvements). Areas for program refinement were identified that should be targeted in future iterations.
RESUMO
BACKGROUND: After lower limb amputation, several prosthesis design options exist. However, prosthesis design decisions do not always reflect a prosthesis user's needs, values, and preferences. OBJECTIVE: To develop a patient decision aid (PDA) prototype for prosthetists and new prosthesis users facing prosthesis design decisions after lower limb amputation, and to assess its usability, accuracy, and comprehensibility. STUDY DESIGN: Exploratory mixed methods. METHODS: PDA development was informed by a qualitative needs assessment and guided by the International Patient Decision Aid Standards. The PDA was evaluated by steering groups of experienced prosthesis users and prosthetic professionals (prosthetists and researchers) to test usability, accuracy, and comprehensibility through focus groups, individual interviews, and rating on a Likert scale ranging from 1 to 10. RESULTS: The resulting PDA included 6 sections: (1) Amputation and Early Recovery, (2) Communication, (3) Values, (4) Prosthesis Design, (5) Preferences, and (6) Prosthetic Journey. Usability, accuracy, and comprehensibility were rated as 9.2, 9.6, and 9.6, respectively, by prosthetic professionals, and 9.4, 9.6, and 9.6, respectively, by prosthesis users. DISCUSSION: The PDA incorporated guidance by relevant stakeholders and was rated favorably, emphasizing a need for shared decision-making support in prosthesis design. One challenge was determining the amount of information in the PDA, highlighting the diversity in end users' informational needs. Future iterations of the PDA should undergo beta testing in clinical settings. CONCLUSIONS: A standardized, iterative method was used to develop a PDA for new lower limb prosthesis users and prosthetists when considering prosthesis design decisions. The PDA was considered useable, accurate, and comprehensible.