{"database":"biostudies-literature","file_versions":[],"scores":null,"additional":{"omics_type":["Unknown"],"volume":["11(1)"],"submitter":["Oliveira MR"],"funding":["CNPq"],"pubmed_abstract":["Objective
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).Results
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, A"],"journal":["BMC research notes"],"pagination":["28"],"full_dataset_link":["https://www.ebi.ac.uk/biostudies/studies/S-EPMC5769464"],"repository":["biostudies-literature"],"pubmed_title":["Quality of life in mucopolysaccharidoses: construction of a specific measure using the focus group technique."],"pmcid":["PMC5769464"],"pubmed_authors":["Guerreiro LB","Schwartz I","Oliveira MR","Maia H","Ribeiro M","Costa LS","Acosta A","Rocha NS"],"additional_accession":[]},"is_claimable":false,"name":"Quality of life in mucopolysaccharidoses: construction of a specific measure using the focus group technique.","description":"Objective
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).Results
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, A","dates":{"release":"2018-01-01T00:00:00Z","publication":"2018 Jan","modification":"2025-04-19T02:01:27.579Z","creation":"2019-03-26T22:58:33Z"},"accession":"S-EPMC5769464","cross_references":{"pubmed":["29334993"],"doi":["10.1186/s13104-018-3157-4"]}}