ArticleInternational journal of environmental research and public health2022
Quality of Life in Children with Prader-Willi Syndrome and the Impact of the Disease on the Functioning of Families.
Article in International journal of environmental research and public health, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 7 papers, 1 of them a synthesis that pooled it.
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Who cites it
7 citing papers in PubMed, 1 synthesis or guideline pooled it.
- The burden of illness in Prader-Willi syndrome: a systematic literature review.Orphanet journal of rare diseases · 2025Pooled it
- Hyperphagia in Prader-Willi syndrome: linking hypothalamic dysfunction to clinical assessment and management across the lifespan.Orphanet journal of rare diseases · 2026Review
- The impact of rare diseases on the quality of life in paediatric patients: current status.Frontiers in public health · 2025Review
- Stress and Quality of Life of Parents of Children With POLR3-Related Leukodystrophy: A Cross-Sectional Pilot Study.Journal of child neurology · 2025Article
- Psychological conditions of caregivers of adult subjects with Prader-Willi syndrome.Orphanet journal of rare diseases · 2024Article
- Mothering a Child With Complexity and Rarity: A Narrative Inquiry Exploring Prader-Willi Syndrome.Qualitative health research · 2024Article
- How Families Manage the Complex Medical Needs of Their Children withChildren (Basel, Switzerland) · 2023Article
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Authors and funding
2 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Objective: Prader−Willi (PWS; OMIM#176270) syndrome is a clinically distinct genetic disorder, caused by an abnormality in the 15q11-q13 region, referred to as the critical region. One of the most popular concepts existing in modern sciences, not only within psychology, but also in the aspect of all sciences that are related to human life and its course, is the quality of life (QoL). Though it is known that health-related quality of life in children with PWS can be reduced, less is understood about the impact on the family. We aimed to identify factors related to the quality of life of children with PWS and the impact of the disease on family functioning. Methods: A cross-sectional questionnaire survey. The subjects were 46 parents of children with PWS. The Computer Assisted Self-Interviewing (CASI) method was used; the Paediatric Quality of Life Inventory and the PedsQL Family Impact Module. Results: The PedsQL mean score was 49.0; (min−max: 5.6−90.8; SD = 16.8), with the highest scores in the Emotional Functioning (EF) (EF; 55.9; min−max: 5.0−100.0; SD = 22.0), and the lowest in the Social Functioning (SF) (SF; 42.7; min−max: 5.0−85.0; SD = 18.7) 56.4 (SD ± 14.7). The child’s age does not affect the quality of life, there were no statistically significant (p > 0.05). families have difficulties in performing daily activities (total score 27.6; SD 16.7), support family functioning (total score 28.9; SD 18.8) and effects physical domain (total score 27.7; SD 15.7). Conclusion: Research on the QoL of patients with PWS and their families is very important in order to assess the QoL, but also to provide the perspective of an active change in the perspective of a better treatment process, rehabilitation and communication in society.
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