Abstract

Abstract Background Patients’ concerns were negatively associated with adaptation and outcomes in inflammatory bowel diseases (IBD), even when the disease is in remission. Concurrently, relatives overestimate patients’ worries with unknown implications on their quality of life (QoL).Our aim was to investigate the association among disease-related concerns, distress and QoL among family caregivers of adult IBD patients in remission. Methods One hundred and ninety-three consecutive IBD patient-caregiver dyads from the outpatient clinic of two referral centres were screened for eligibility. Dyads with psychiatric and other co morbidities were excluded. 66 patients were in remission and recruited. Patients’ concerns and caregivers’ distress were assessed by using the Rating Form of IBD patient Concerns (RFIPC) and the caregiver self-assessment questionnaire ‘How Are You?’ of the American Medical Association, respectively, whereas caregiver’s QoL was measured with the SF-36 questionnaire. Data are presented as median and range. The influence of population characteristics and patients’ concerns on caregivers’ distress and QoL were evaluated with linear regression. Results Sixty-six IBD patients (40[47] years, 51.5 % females, 37.9% full-time employment) and caregivers (47[33] years, 60% females, 60% 1st degree relative, 60% full-time employed) included in the analysis. Among patients, the median RFIPC score was 36.8 [43.52], whereas worries about the unknown nature of the disease, feeling out of control, having access to quality medical care, the fear of side effects and the energy level prevailed. Among caregivers, a median of 7 [14] hours were spent on care giving per week with 48.4 % of the caregivers developing distress and achieving low scores on sf-36. Among all examined variables, the increased level of concerns was the sole factor that was independently associated with increased distress (beta=0.947, p = 0.000) and low QoL (beta=–0.567–0.345, p = 0.000) in the caregivers’ population. Conclusion In remission, increased patients’ concerns was the only factor that was found to be strongly associated with increased level of distress and low QoL in family caregivers. Potential interventions might seek to provide support to those who care for IBD patients. References

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