biostudies-literatureUnknown11(1)Oliveira MRCNPq<h4>Objective</h4>To describe the perceptions of patients, their caregivers, and their healthcare providers to the development of a new specific instrument for assessment of the quality of life (QoL) in patients with mucopolysaccharidoses (MPS) using a qualitative focus group (FG) design. FGs were held in two Brazilian states (Rio Grande do Sul and Rio de Janeiro).<h4>Results</h4>Three versions of the new instrument were developed, each for a different age group: children (age 8-12 years), adolescents (age 13-17), and adults (age ≥ 18). The FGs mostly confirmed the relevance of items. All FGs unanimously agreed on the facets: School, Happiness, Life Prospects, Religiosity, Pain, Continuity of Treatment, Trust in Treatment, Relationship with Family, Relationship with Healthcare Providers, ABMC research notes28https://www.ebi.ac.uk/biostudies/studies/S-EPMC5769464biostudies-literatureQuality of life in mucopolysaccharidoses: construction of a specific measure using the focus group technique.PMC5769464Guerreiro LBSchwartz IOliveira MRMaia HRibeiro MCosta LSAcosta ARocha NSfalseQuality of life in mucopolysaccharidoses: construction of a specific measure using the focus group technique.<h4>Objective</h4>To describe the perceptions of patients, their caregivers, and their healthcare providers to the development of a new specific instrument for assessment of the quality of life (QoL) in patients with mucopolysaccharidoses (MPS) using a qualitative focus group (FG) design. FGs were held in two Brazilian states (Rio Grande do Sul and Rio de Janeiro).<h4>Results</h4>Three versions of the new instrument were developed, each for a different age group: children (age 8-12 years), adolescents (age 13-17), and adults (age ≥ 18). The FGs mostly confirmed the relevance of items. All FGs unanimously agreed on the facets: School, Happiness, Life Prospects, Religiosity, Pain, Continuity of Treatment, Trust in Treatment, Relationship with Family, Relationship with Healthcare Providers, A2018-01-01T00:00:00Z2018 Jan2025-04-19T02:01:27.579Z2019-03-26T22:58:33ZS-EPMC57694642933499310.1186/s13104-018-3157-4