Interventions for improving clinical outcomes and health-related quality-of-life for people living with skeletal dysplasias: an evidence gap map.
Naomi MoyDarren FlynnJosefa HenriquezLuke B ConnellyLuke ValeFrancesco PaolucciPublished in: Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation (2023)
Most studies reported on clinical outcomes from surgery for people living with Achondroplasia. Consequently, there are gaps in the literature on the full range of treatment options (including no active treatment), outcomes and the lived experience of people living with other skeletal dysplasias. More research is warranted to examine the impact of treatments on health-related quality-of-life of people living with skeletal dysplasias, including their relatives to enable them to make preference- and valued based decisions about treatment.