Tests & Measures: A Resource for Pediatric Physical Therapy Practitioners

Pediatric Quality of Life Inventory (PedsQL) Article Summary

PedsQL Article: Assessing gastro-intestinal related quality of life in cystic fibrosis: Validation of PedsQL GI in children and their parents

Boon M, Claes I, Havermans T, et al. Assessing gastro-intestinal related quality of life in cystic fibrosis: Validation of PedsQL GI in children and their parents. PLoS One. 2019;14(12):e0225004. Published 2019 Dec 20. doi:10.1371/journal.pone.0225004

Purpose: To validate a cystic fibrosis-specific quality of life questionnaire in pediatric patients with CF by comparing the PedsQL GI (Pediatric Quality of Life Inventory, Gastrointestinal Symptoms Scales and Module) to other QOL questionnaires such as the cystic fibrosis QOL questionnaire (CFQ-R) and visual analogue scale (VAS).

Population: 248 children and their parents in Europe. The children included in the study had cystic fibrosis and ranged from 24 months to 18 years old and all had pancreatic insufficiency and were being treated with pancreatic enzyme replacement therapy (PERT).

Methods: A 3 month prospective observational study with a 3 month follow up period. The children in the trial were compared with healthy controls used from data in the US. Intraclass correlation coefficient, beta mixed regression and confidence intervals were used to assess reliability among the questionnaires used in the study.

Outcome Measure: PedsQL GI, CFQ-R and VAS; both parents and children filled out the questionnaires, separately. The questionnaires were filled out at the start of the study and after 3 months. They also collected each of the following at the start of the study and month 3: spirometry, height, weight, BMI, and PERT dosage.

Intervention: No interventions were performed

Results: PedsQL GI was found to be a reliable outcome measure with “excellent” test-retest reliability. The study also suggested that children and their parents perceive the child’s CF symptoms similarly. The subscales used the PedsQL GI were found to be specific to children with CF.

Strengths: The authors found that the existing PedsQL GI questionnaire is valid to use in children with CF. This meant that the subscales in the questionnaire are applicable to symptoms and experiences that children with CF have. This questionnaire had more subscales used compared to other outcome measures; also has less categories with ceiling effects.

Limitations: The control group was not specifically matched similarly to the children in the study. The authors did not have data about BMI, height, weight, etc. in the controls. Known-group differences were not studied. Further research need about the response of the questionnaire to an intervention. I personally thought this article was difficult to follow with the amount of complexity of the questionnaires and abbreviations used.

Conclusion: Overall, the results showed that the PedsQL GI questionnaire is appropriate to use in children with CF since the subscales proved to be specific to CF symptoms. It was also interesting to see that children and their parents perceive severity of the child’s CF symptoms similarly and also reminds healthcare providers of the burden of GI problems that children and parents face.