Psychological distress and user experiences with health care provision in persons living with spinal cord injury for more than 20 years

STUDY DESIGN: Descriptive cross-sectional and retrospective study.

OBJECTIVES: To gain more insight into the long-term health status in persons with traumatic spinal cord injury (SCI), especially perceived psychological distress as well as self-reports of utilization of healthcare services.

SETTING: Sunnaas Rehabilitation Hospital, Norway.

METHODS: In total, 147 persons with SCI were examined for more than 20 years and interviewed (in 2004/2005) using a self-administrated questionnaire and General Health Questionnaire (GHQ-20). Descriptive statistics and a logistic regression analysis were conducted to identify variables associated with psychological distress.

RESULTS: Most participants had received SCI follow-up health services at least once after initial rehabilitation; 34% were satisfied, 51% neutral and 18% unsatisfied with the health services provided. Concerning psychological distress, 34 persons were cases according to the GHQ-20. The cases did not differ from non-cases concerning demography, time since injury, injury aetiology, injury severity, marital status or employment status. The regression analysis revealed that cases were associated (P<0.05) with more use of SCI-specific follow-ups.

CONCLUSION: In a 20+ years' post-injury SCI population, psychological distress is common and associated with the use of follow-up services. The varying satisfaction of people with SCI about healthcare services is notable, as is the finding that 20% of people with paraplegia did not use specific SCI follow-up services. The experiences of people with SCI with healthcare services need further investigation, and there is also a need for studies that examine the effects of interventions aimed at improving services and patient satisfaction.