Living with duchenne muscular dystrophy: medical, psychosocial and financial burden
| Autoři | |
|---|---|
| Rok publikování | 2020 |
| Druh | Konferenční abstrakty |
| Citace | |
| Popis | Demographic characteristics of the patients are shown in Table 1. The median age of respondents was 12.9 years with median age at diagnosis of 3.0 years and loss of ambulation at 9.5 years. Sixty-one respondents (96.8%) were at least annually examined by a neuromuscular specialist, while 80.6% of these patients were satisfied with the care provided and 69.8% felt they had been offered sufficient help at diagnosis. Sixty-five percent of respondents are part of a patient organization. Corticosteroids were never used by 28.6% of patients. However, 23.8% of respondents were less than 8 years old. Among non-ambulant patients, 10 out of 29 were still on corticoids. Nineteen patients were hospitalized at least once in the last year, with 85.2% of planned hospitalizations. Patients were seen by a physiotherapist on average once every two weeks while 85.7% of respondents exercised at least a few days a week. Out of 19 respondents who have completed their education, four finished high school and one had a college degree. Fifty respondents (79.4%) stated that the diagnosis decreases their quality of life. The respondents’ self-rated health status reported by visual analogue scale was on average 82.5 in children up to 5 years of age, then decreased with age until it reached 47.5 in respondents 18+ years old. The EQ-5D Utility Index markedly decreased from 0.712 in children under 5 years to 0.026 in 18+years group (Figure 1). We would like to stress that adult patients have EQ-5D index almost equal to 0 which indicates lower bound, i.e. death state; the quality of life of adult patients is thus severely impaired. In PedsQL, the worst-rated ability of DMD patients by both respondents and their parents was communication about the disease with professionals as well as non-professionals (Figure 2). Patients and their families also reported difficulties in organizing events such as family holidays or rest in general. Other most frequently reported complications were fatigue, leg pain and weight control. Highest rated abilities (i.e. the abilities imposing the least amount of difficulties) were swallowing and breathing. Regarding financial burden of DMD, caregivers stated that on average 20% of family’s income is spent on the care of DMD patient, monthly €54 on vitamins or other dietary supplements, €42 on medical devices, €41 on travel costs, €21 on medication and €39 on others (e.g. specialized exercise, shoes, insoles) (Figure 3). Family caregiver dedicates on average 16.3 hours/day to taking care of a DMD patient. Moreover, 64.5% caregivers are not employed most likely due to DMD caregiving. The average deterioration in labor productivity of employed carers is 37.7% (work impairment WPAI); usual activities are impaired by 47.8% in all caregivers (activity impairment WPAI) (Figure 4). |