Quality of life in adults with Down syndrome: A mixed methods systematic review

Abstract

Background As the life expectancy of adults (aged ≥ 18 years) with Down syndrome increases for a plethora of reasons including recognition of rights, access, and technological and medical advances, there is a need to collate evidence about their quality of life. Objective Using Schalock and Verdugo’s multidimensional quality of life assessment model, this systematic review aimed to identify, synthesise and integrate the quantitative and qualitative evidence on quality of life in adults with Down syndrome via self-and proxy-reporting. Methods Five databases were systematically searched: MEDLINE, CINAHL, PsycINFO, Scopus, and Web of Science to identify relevant articles published between 1980 and 2022 along with grey literature and reference lists from relevant studies. A mixed methods systematic review was performed according to the Joanna Briggs Institute methodology using the convergent integrated approach. The review followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. Results Thirty-nine studies were included: 20 quantitative, 17 qualitative, and 2 mixed methods studies. The synthesised findings were grouped into the 8 core domains of quality of life: personal development, self-determination, interpersonal relations, social inclusion, rights, emotional, physical and material well-being. Of the 39 studies, 30 (76.92%) reported on emotional well-being and 10 (25.64%) on rights. Only 7 (17.94%) studies reported that adults with Down syndrome have a good quality of life centred around self-determination and interpersonal relations. Most adults with Down syndrome wanted to become more independent, have relationships, participate in the community, and exercise their human rights. Self-reported quality of life from adults with Down syndrome was rated higher than proxy reported quality of life. Discrepancies in quality of life instruments were discovered. Conclusion This review highlighted the need for a better systematic approach to improving the quality of life in adults with Down syndrome in targeted areas. Future research is required to evaluate self-and proxy-reporting methods and culture-specific quality of life instruments that are more appropriate for adults with Down syndrome. In addition, further studies should consider including digital assistive technologies to obtain self-reported quality of life data in adults with Down syndrome. International prospective register of systematic reviews registration number CRD42019140056.

Empowering Lives: Navigating the Landscape of Down Syndrome Support in Saudi Arabia

“…Furthermore, supporting the families of individuals with DS is an integral part of this long-term care approach. This support encompasses counseling services, providing educational resources about DS, and facilitating support groups where families can share experiences (Ijezie et al, 2023). As individuals with DS transition into adulthood, the focus shifts to maintaining health and fostering independence.…”

“…There are instances of students with DS achieving significant milestones, excelling in certain subjects, or even participating in mainstream extracurricular activities. These successes highlight the potential of these individuals when given the appropriate support and opportunities (Daunhauer et al, 2014;Ijezie et al, 2023). However, the journey is not without its challenges.…”

“…The severity of these health issues and the intellectual disability can vary significantly among individuals with DS (Bhattacharyya et al, 2010). Modern healthcare and early intervention programs have been instrumental in improving the quality of life and life expectancy of individuals with DS (Hendrix et al, 2021;Ijezie et al, 2023). With proper medical care, educational support, and social inclusion, many individuals with DS live into their 60s and beyond (Hendrix et al, 2021;Ijezie et al, 2023).…”

Inclusión Laboral De Personas Con Síndrome De Down: Experiencias en Un Servicio De Comida Inclusiva en La Región Del Biobío, Chile

“…La principal causa de DI congénita es el Síndrome de Down (en adelante SD), también conocido como trisonomía 21 debido a que dicha condición es resultado de la presencia de un cromosoma 21 extra, o parte de él (Ijezie et al, 2023). Su incidencia a nivel mundial es de 3,3 por cada 10.000 nacimientos (Antonarakis et al, 2020) y aunque no existen estudios pormenorizados sobre la tasa de incidencia en Chile, Nazer y Cifuentes, (2011), calculan una incidencia en Chile de 2,47 por cada 1.000 niños nacidos, lo que constituye un aumento de más del doble de la tasa reportada en 1972 y correspondería a la tasa de incidencia más alta de Latinoamérica (Nazer & Cifuentes, 2011).…”

Adapting a quality of life scale for children and young people with Down syndrome in Chile

“…A systematic review aimed to identify the evidence on QoL in adults with DS; 39 studies were included, with only 7 (17.94%) reported that adults with DS have a good QoL centered around self-determination and interpersonal relations. Most wanted to improve in their independence, relationships, participation in the community, and in the exercise of their human rights (Ijezie et al, 2023).…”