The QOLISSY project in Portugal

The QOLISSY – Quality of Life in Short Stature Youth project was conducted simultaneously in five European countries (France, Germany, Spain, Sweden and the UK), and funded by Pfizer Ltd., Specialty Care MDG, Endocrinology, with the aim of developing a cross-cultural disease-specific health-related quality of life (HrQoL) measure for children and adolescents with short stature, aged 8-18 years-old, as well as for parents of children aged 4-18 years-old. The European QoLISSY project comprised three phases, namely: focus-groups with item generation, pilot test with cognitive debriefing and field test with re-test with a total of over 1000 patients and parents.

Within a sequential approach, the QOLISSY project in Portugal is aimed at translating and cross-culturally validating the patient- and parent-report versions of the QOLISSY questionnaires to the Portuguese population. The validation procedures in Portugal will include three phases: (1) translation of the QOLISSY questionnaires into Portuguese language; (2) semantic validation of items and response scales and pilot-study; and (3) field test of psychometric properties of the Portuguese versions of QOLISSY questionnaires.

The participants will be recruited at the Pediatric Service of the São João Hospital Center, E.P.E. The sample will comprise children and adolescents with short stature (growth hormone deficiency or idiopathic short stature) between 8 and 18 years of age, as well as parents of 4-18 year-old children. In addition to the QOLISSY questionnaires, the assessment protocol will include instruments for assessing generic and chronic-generic quality of life and its psychosocial determinants.

The availability of the Portuguese versions of the QOLISSY questionnaires will allow the reliable and valid assessment of health outcomes as reported by the pediatric patients with short stature and by their parents in future research and clinical practice in the Portuguese context.