A comparison of perceptions of quality of life among adults with spinal cord injury in the United States versus the United Kingdom

Abstract

Purpose To identify which aspects of life are most important to adults with spinal cord injury (SCI) and compare perspectives in the United States and the United Kingdom. Methods We conducted 20 in-depth interviews with adults with SCI (ten in the US and ten in the UK). Verbatim transcriptions were independently analyzed line-by-line by two coders using an inductive approach. Codes were grouped into themes about factors that constitute and affect quality of life (QOL). Results Five overarching themes emerged: describing QOL in the context of SCI; functional adjustment; medical care; financial resources; and socio-political issues. Twenty subthemes emerged on factors that affect QOL. Participants in both samples identified medical care as a key influence on QOL. The US group talked about a predominantly negative influence (e.g., fragmented primary and specialist care, insurance constraints, bureaucracy), whereas UK interviewees mentioned a predominantly positive influence (e.g., universal provision, including free and continuous care, free wheelchairs and home care, and length of rehabilitation commensurate with level of injury). Functional adjustment, such as physical and mental adjustment post-discharge and aging with SCI, was another important contributor to QOL, and varied by country. Most US interviewees reported poor knowledge about self-care post-discharge and poor quality of home adaptations compared to the UK group. Conclusions For adults living with SCI, good QOL is essential for successful rehabilitation. Differences between interviewees from the two countries in perceived medical care and functional adjustment suggest that factors affecting QOL may relate to broader health system characteristics.

Development and Psychometric Evaluation of a Fatigability Index for Full-Time Wheelchair Users With Spinal Cord Injury

“…[3][4][5][6][7][8][9][10][11][12][13][14][15][16][17] We conducted 20 in-depth interviews with adults with SCI who are full-time wheelchair users, exploring quality of life in the context of SCI, and preferences for different health outcome measures, with findings reported elsewhere. 20 The need for two separate scales emerged from these in-depth interviews. Physical fatigue was defined as reduced physical function due to wear or disease (tiredness and weakness are symptoms of fatigue).…”

“…23 The hypothesized structure was based on theories proposed by previous studies. 20,24 For the PF scale, we hypothesized five multi-item domains: "Health challenges," "Daily living challenges," "Mental tasks," "Access challenges," and "Seating challenges." The hypothesized structure for the MF scale included four multi-item domains: "Daily living challenges," "Access challenges," "Concentration challenges," and "Health challenges."…”

Quality-of-life after cholecystectomy in Kazakhstan and Sweden: comparative study based on the GIQLI questionnaire

“…Most previous studies on QoL after GSD surgery have concerned surgical approach [12][13][14][15][16] , patient-related factors 4,7 , or timing of the procedure [17][18][19] . Studies on the impact of cultural differences on QoL of patients with pathologies other than GSD have been performed [20][21][22][23] . In general these studies indicate that the healthcare system and disease perception may have an impact on self-reported outcome, even if surgical management and treatments are similar.…”

Preferences of adults with spinal cord injury for widely used health-related quality of life and subjective well-being measures

“…Transcripts were uploaded to Atlas.ti 30 to facilitate management, coding, analysis and interpretation of complex qualitative data, using grounded theory. These transcripts included both the first half of the interview, regarding QOL in the context of SCI, 18 and the second half, regarding survey preferences. Coding was performed in two rounds, each consisting of two coders coding independently.…”

“…Methods and findings from the first half of the interviews are discussed elsewhere. 18 The sequence in which the surveys were presented and discussed was varied randomly for each interviewee to control for order effects. 19,20 The interview prompt for the review of the surveys was: "We are going to look at 6 surveys that have been used to assess healthrelated quality of life, and well-being in adults with SCI.…”