Translation, psychometric validation, and baseline results of the Patient‐Reported Outcomes Measurement Information System (PROMIS) pediatric measures to assess health‐related quality of life of patients with pediatric lymphoma in Malawi

Abstract

Translation and cultural validation of the PROMIS-25 into Chichewa for Malawi was successful. Baseline HRQoL for patients with pediatric lymphoma in Malawi is poor for all domains except peer relationships. This emphasizes an urgent need to address HRQoL among children undergoing cancer treatment in SSA using self-reported instruments validated within the local context.

Pediatric lymphoma patients in Malawi present with poor health-related quality of life at diagnosis, and improve throughout treatment and follow-up across all Pediatric PROMIS-25 domains.

“…We measured HRQoL among pediatric lymphoma patients using the Chichewa Pediatric PROMIS-25 instrument at diagnosis, and found our patients had poor HRQoL at diagnosis compared to the PROMIS pediatric reference population of children with cancer in the United States. 20 We extend our prior observations to describe longitudinal changes in HRQoL from diagnosis through active treatment and follow-up, to demonstrate the feasibility of using PROs in SSA, and to explore if PROMIS measures can be predictive of survival.…”

“…We previously reported Chichewa translation and validation of the Pediatric PROMIS-25 survey. 20 The Chichewa Pediatric PROMIS-25 short form was administered at diagnosis (at the time of study enrollment prior to initiation of chemotherapy), during active treatment (within 30 days of last receiving chemotherapy, typically on day 0 of the next scheduled chemotherapy) and at follow-up (patients returning for a scheduled follow-up clinic visit between 6 months and 2 years after treatment completion). If patients progressed or relapsed and were receiving second line chemotherapy at the time of the PROMIS-25 administration, then this was categorized as active treatment.…”

“…The parent-proxy version was used for children 5-7 years old, cognitively impaired, or too ill to complete the questionnaire themselves. 20,[25][26][27] Questionnaires were read aloud to the child/parent via a non-provider research assistant trained in survey methodology and recorded on a paper form. This modification was deemed necessary in our setting due to low literacy in the target population.…”

“…[17][18][19] In prior work, our group has translated and validated the Pediatric PROMIS-25 questionnaire into Chichewa, Malawi's national language, which was the first Pediatric PROMIS translation and validation into a Bantu language for use in SSA. 20 The Pediatric PROMIS-25 is a short form composed of 25 questions assessing mental, physical, and social components of HRQoL. We measured HRQoL among pediatric lymphoma patients using the Chichewa Pediatric PROMIS-25 instrument at diagnosis, and found our patients had poor HRQoL at diagnosis compared to the PROMIS pediatric reference population of children with cancer in the United States.…”

Translation and validation of the Korean version of PROMIS® pediatric and parent proxy measures for emotional distress

“…The PROMIS pediatric self-report and parent-proxy item banks have been developed to assess physical, mental, and social health in youth aged 8 to 17 years [9–12]. The PROMIS Pediatric and Parent Proxy scales were adapted and validated in different languages, showing good psychometric properties [13, 14].…”