Abstract
Parents caring for children with rare diseases fear the long-term progression of the child’s disease. The current study aims to systematically investigate the quality of life (QoL) in parents of children with different rare diseases. We performed a systematic literature search including quantitative studies on QoL of parents caring for children and adolescents with rare diseases in five databases (APA PsycArticles, APA PsycInfo, MEDLINE, PSYNDEXplus, and PubMed) published between 2000–2020. Of the 3985 titles identified, 31 studies met the inclusion criteria and were selected for narrative review. Studies were included if they investigated predictors of parental QoL or reported QoL compared to normative samples, parents of healthy children, or children with other chronic diseases. We used the Newcastle–Ottawa Scale to assess methodological quality. The systematic review revealed that parents of children with rare diseases experience reduced QoL compared to parents with healthy children and norm values. Psychosocial factors, beyond disease-specific predictors, were shown to influence parental QoL substantially and may thus present an essential aspect within interventions for this highly burdened group. Health care professionals should consider and address the impairment of parental QoL due to the child’s rare disease. We discuss insights into existing research gaps and improvements for subsequent work.
Highlights
Parents of children with rare diseases play a crucial role in the physical and emotional well-being of their affected child [1]
Parents of children with a rare disease even showed higher physical quality of life (QoL) compared to U.S female norms [29]
Another study found no significant difference between the QoL of parents of children with a rare disease and norm values of parents of healthy children [46]
Summary
Parents of children with rare diseases play a crucial role in the physical and emotional well-being of their affected child [1]. In the European Union, around 13.5 to 25 million children and adolescents are affected by one of over 5000–8000 different rare diseases [3]. Rare diseases are defined by a prevalence of less than 1:2000 [4]. Even though there is great heterogeneity in the complex disease patterns of rare diseases, the burden on the affected patients and their families is very similar [5,6]. The similar burden may stem from rare diseases mostly being severe, chronic, progressive, degenerative, and associated with a shortened life expectancy [2]
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