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Prospective Psychometric Validation of the Swahili Translated and Adapted Pediatric Patient Reported Outcomes Version
Hutton Chapman1, Jacqueline Kamanga2, Heronima J Kashaigili2,3
1Duke University Hospital, 2301 Erwin Rd., Durham, North Carolina, USA.
Insights
A Swahili version of the Pediatric Patient-Reported Outcomes Common Terminology Criteria for Adverse Events (PRO-CTCAE) survey was validated in Tanzania. This tool supports better pediatric cancer research and care in Swahili-speaking regions.
Area of Science:
- Pediatric Oncology
- Clinical Trials
- Health Disparities
Background:
- Significant disparities exist in pediatric cancer outcomes in low- and middle-income countries (LMICs).
- Patient-reported outcomes (PROs) are crucial for clinical trials but lack validated surveys in LMICs.
- A Swahili translation of the Pediatric PRO-CTCAE was developed for use in Tanzania.
Purpose of the Study:
- To prospectively validate the Swahili Ped-PRO-CTCAE survey.
- To support the use of this validated PRO tool in Swahili-speaking settings.
- To improve the quality of clinical research for pediatric cancer patients in Tanzania.
Main Methods:
- Prospective psychometric validation of the Swahili Ped-PRO-CTCAE.
- Enrollment of 41 pediatric cancer patients at Bugando Medical Centre, Tanzania.
- Administration of Swahili Ped-PRO-CTCAE and concurrent CTCAE provider assessment.
- Statistical analysis using R, including internal consistency and concurrent validity assessments.
Main Results:
- 49 surveys were collected, with 8 participants completing repeat surveys.
- High internal consistency (polychoric correlation coefficients ≥0.5) within symptom domains.
- Strong concurrent validity demonstrated by high Spearman correlation coefficients (≥0.5) between survey and provider assessments.
- Principal component analysis indicated one component explained >70% of variance for most symptoms.
Conclusions:
- The Swahili Ped-PRO-CTCAE is feasible for administration in a pediatric cancer population in Tanzania.
- Psychometric evaluation supports the validity of the Swahili translation.
- This validated tool can enhance clinical research and patient care for Swahili-speaking pediatric cancer patients.
Background:
High quality clinical research is necessary in order to address the significant disparities in pediatric cancer outcomes seen in low- and middle-income countries (LMICs). Patient reported outcomes are now recognized as a critical part of many clinical trials, however, use of patient reported outcomes (PROs) in LMICs is limited by the lack of thoroughly translated and validated PRO surveys. To address this gap in Tanzania, we subsequently undertook the prospective psychometric validation of a recently translated Swahili Ped-PRO-CTCAE survey in order to support its use in Swahili speaking settings.
Methodology:
Between June and September, 2023, 41 patients seen in the pediatric oncology clinic at Bugando Medical Centre, in Mwanza, Tanzania, were enrolled. Patients or their parents, as age appropriate, were administered the Swahili Ped-PRO-CTCAE. Simultaneously, a CTCAE provider assessment was completed. Descriptive statistical and psychometric analysis of survey results was performed using R.
Results:
49 surveys were collected, with 8 participants repeating surveys at later clinic visits. Internal consistency within symptom domains was supported by polychoric correlation coefficients all ≥0.5 with most ≥0.7. Principle component analysis of all evaluable symptom domains demonstrated one component explained >70% of the cumulative variance for most symptoms. Concurrent validity was supported as nearly all Spearman correlation coefficients between Ped-PRO-CTCAE questions and relevant provider assessment questions were all ≥0.5.
Conclusions:
Administration of the Swahili translated and adapted Ped-PRO-CTCAE in a representative Swahili speaking pediatric cancer patient population proved feasible and psychometric evaluation of survey results support the validity of the translation.
