Data were collected within communities in the metropolitan areas of Cape Town and Pretoria in the South African provinces of the Western Cape and Gauteng, respectively. The two provincial geographical settings differ in terms of health care system governance, availability and access to services. SCI participants utilizing public health care services in Cape Town and those accessing private health care in Pretoria were recruited.
Study design and sample
A descriptive cross-sectional survey was used to collect data. Non-probabilistic sampling was used to recruit participants aged 18 years and above with confirmed primary diagnosis of either traumatic or non-traumatic SCI. Participants were sampled from public and private registries in the respective health facilities. Individuals were excluded from the study if they had a severe cognitive impairment or if they were hospitalized at the time of the survey.
The Cape Town cohort (N=156) represented those using the public health care system and was part of an earlier epidemiological study. This study aimed to determine the incidence, cause, and injury characteristics of those with traumatic SCI during a one-year period (September 2013 to September 2014) . Contact details of those in the incidence cohort were kept and all who were still alive at the time of the survey were eligible to participate. Upon the receipt of ethical clearance of the current study, all participants were re-invited to participate in the cross-sectional study focusing on functioning and health systems. Of the overall 145 participants, 87 were available and were followed up. Apart from this cohort, an additional 69 participants were recruited from outpatients at the Western Cape Rehabilitation Centre and through peer supporters in the region. All participants completed formal inpatient rehabilitation and had returned for outpatient urologic clinic appointments or exercise therapy.
The private cohort (N=44) all attended Mediclinic Meulmed for their inpatient rehabilitation. All but two preferred to conduct the survey telephonically while the rest came to the rehabilitation facility to complete the survey, which was interview administered. The mean time duration since the injury was 9 years.
The survey was available in three languages, namely English, Afrikaans, and Isi-Xhosa and comprised 125 items, which took participants approximately 45-60 minutes to complete.
Outcome Measure: Data were collected using the WHO-QoL-BREF and the International Spinal Cord Survey (InSCI) Questionnaire.
The World Health Organization QoL (WHO-QoL-BREF) measures self-reported QoL from 5 items. This includes satisfaction with health, satisfaction with the ability to perform daily activities, satisfaction with yourself, satisfaction with personal relationships, and satisfaction with living conditions. An overall QoL was calculated using the above-mentioned items. Each participant was asked to rate their QoL over the past 14 days on a 5-point Likert scale (1, very dissatisfied to 5, very satisfied). Health systems indicators selected from the International Spinal Cord Survey based on the recommendations of the International Perspectives of Spinal Cord Injury  were linked to the items of WHO-QoL-BREEF. The following items from the International Spinal Cord Injury Survey questionnaire  were selected for the health system indicators: (1) Do you currently receive disability pension or similar benefits?; (2) Did you receive vocational rehabilitation after SCI?; (3) In the past 12 months, have you needed health care but did not get it?; (4) Access to public space, e.g. inaccessible public buildings, parks; (5) Social attitudes, e.g. stigma, prejudice, and ignorance; (6) Access to assistive devices, (short distance) e.g. stair, lifts, walking aids, or wheelchair; (7) Access to transportation (long distance) e.g. lack of adapted car or hard to use public transportation; (8) Reception of nursing care, e.g. home health care or personal assistance; (9)Access to medication, aids, and supplies, e.g. catheters, splints, pillows.
Health indicators 1-3 required a yes/no response while indicators 4-9, asked participants to say what influence the indicators had on their lives.
The Statistical Package for Social Sciences (SPSS) Version 26 was used to analyse the data.
Descriptive statistics summarize demographic (age, sex, marital status, educational level, work status, household income) and injury characteristics (type of injury, level of the injury, severity of the injury, time living with the injury), and outputs were presented as frequencies and percentages. Health system indicators were dichotomized by coding 1 for a positive meaning (e.g. had no influence, had access, received the services) and 0 for negative meaning (had influence, had no access, did not receive services). The responses on self-reported QoL from a 5-point scale (1, very dissatisfied to 5, very satisfied) were also dichotomized by coding 1 for positive meaning (Satisfied, very satisfied) and 0 for negative meaning (very dissatisfied, dissatisfied, neither satisfied nor dissatisfied). The overall QoL score was obtained by calculating the total score ranging from 0% to 100% of the 5 items using the WHO methodology , where higher values show a higher QoL. The frequencies and percentages of dichotomised data from health system indicators and self-reported QoL were calculated. The results of the 2 cohorts (private versus private) on health system indicators and self-reported QoL were then compared for differences. These were done by Cross-tabulation using a Chi-Square test- of independence. Correlation analyses were also done to assess for relationships between health system indicators and self-reported QoL of the study sample. A p-value at 0.05 was considered significant.