Quality of life in mucopolysaccharidoses: construction of a specific measure using the focus group technique.

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

SUBMITTER: Oliveira MR 

PROVIDER: S-EPMC5769464 | biostudies-literature | 2018 Jan

REPOSITORIES: biostudies-literature