The current study examines the impact of parental perceived stigma on the quality of life (QoL) of children with rare diseases in Romania. As rare diseases habitually affect a small portion of the population, they are frequently under-researched, underfunded and patients are often unsupported. Additionally, people with rare diseases often experience high levels of stigma. The present study uses the Paediatric Quality of Life Measure (PedsQL) and the Parental Perceptions of Public Attitudes Scale (PPPAS) to ascertain the parent/primary caregiver reported QoL in children with rare diseases (CwRD) and explore the relationship between stigma and QoL. Using two validated measures, this study identified that stigma has a statistically significant negative impact on QoL whilst controlling for the age, gender, education and employment status of the parent. Every SD increase of stigma (M = 3.35, SD = 1.12) results in a decrease of 0.268 SD of QoL (M = 36.04, SD = 18,13). Over 75% of responders reported physical QoL and low psychosocial health. Since parent/primary caregivers who experience higher levels of stigma are likely to report a lower (QoL) for their CwRD, coproduced interventions to address stigma should be considered by future research to support the physical and psychosocial QoL of CwRD in Romania.
Grunebaum et al. (Wed,) studied this question.