Disability evaluation in patients with rare diseases in Spain: the importance of being in accord. BURQOL-RD Project

Abstract

Most of rare diseases lead to a certain level of disability. In Spain, disabled persons receive long-time benefits, but only if they possess a disability evaluation that officially certifies the degree of their disability. Sometimes, the affected persons can experience disagreement with the obtained evaluation. Our aim was to analyse the level of agreement among rare disease patients and caregivers in Spain with their official disability evaluation and its possible relationship with their health-related quality of life (HRQoL) and the general satisfaction with the national healthcare system (NHS). Data were collected from patients (n = 123) and caregivers (n = 74) as a part of BURQOL-RD Project that measured the burden of ten rare diseases in Europe. HRQoL was evaluated by the generic instrument EQ-5D. Satisfaction with NHS was measured on a scale from 1 to 10. Almost 30% of respondents did not agree with their disability evaluation. These persons expressed less satisfaction with NHS than those who were in accord with their evaluation (5.1 vs 6.8; p <0.0001). Patients’ and caregivers’ HRQoL was also worse for the disagreement group, but did not reach a statistical significance. Correctly evaluated degree of disability is fundamental and has many consequences for all affected parties. Disability evaluation rules should reflect the specificities of rare diseases.