Growth hormone & IGF research : official journal of the Growth Hormone Research Society and the International IGF Research Society · 2026
An assessment of the global usability of quality-of-life questionnaires in children receiving recombinant growth hormone therapy.
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Kapczuk A, Ali S R, Alimussina M, Alves I, Biersmasz N, Chen S C, Gilmer A, Grieve E, Højby M, Koltowska-Haggstrom M, Maghnie M, Maniatis A, Quitmann J, Tedesco C, Vitali D, Miller B, Ahmed S F
Аннотация
BACKGROUND: In the field of childhood growth hormone therapy (rhGH), patient and parent/observer-reported outcome measures (PROMs) are rarely used routinely.
AIM: To identify barriers and facilitators for the global implementation of PROMs for evaluating QoL in children receiving rhGH.
METHODS: PROMs used in childhood rhGH therapy that were identified through a narrative literature search and expert group consultation were evaluated on reporter's perspective, language availability, administration mode, cost, age range, and completion time.
RESULTS: Of the 50 PROMs identified, 13 were excluded due to methodological limitations. Of the remaining 37, that included 26 generic and 11 condition-specific PROMs, 16 (43%) were available in self-report and parent-proxy formats in over 30 languages and 24 (65%) had a reported completion time less than 15 min. The median lower age limit was 7 yrs (range: 3.0, 12.7). Of the 37, 7 (19%) were free to use, 12 (32%) required a fee, and for 18 (49%), the cost was unclear or varied between clinical practice and research. The mostly commonly represented domains in the condition-specific PROMs included "physical functioning & symptoms" and "emotional & mental health". Fees for condition-specific PROMs were often not explicit, and none were unconditionally free of charge. Overall, generic PROMS tended to rank higher across the six usability parameters than condition-specific tools.
CONCLUSION: Cost and unclear fee structures represent barriers to the routine use of condition-specific PROMs for assessing rhGH therapy in real-world settings. Whilst both, generic and condition-specific PROMs play important complementary roles, the former are more likely to exhibit characteristics that support global implementation.
AIM: To identify barriers and facilitators for the global implementation of PROMs for evaluating QoL in children receiving rhGH.
METHODS: PROMs used in childhood rhGH therapy that were identified through a narrative literature search and expert group consultation were evaluated on reporter's perspective, language availability, administration mode, cost, age range, and completion time.
RESULTS: Of the 50 PROMs identified, 13 were excluded due to methodological limitations. Of the remaining 37, that included 26 generic and 11 condition-specific PROMs, 16 (43%) were available in self-report and parent-proxy formats in over 30 languages and 24 (65%) had a reported completion time less than 15 min. The median lower age limit was 7 yrs (range: 3.0, 12.7). Of the 37, 7 (19%) were free to use, 12 (32%) required a fee, and for 18 (49%), the cost was unclear or varied between clinical practice and research. The mostly commonly represented domains in the condition-specific PROMs included "physical functioning & symptoms" and "emotional & mental health". Fees for condition-specific PROMs were often not explicit, and none were unconditionally free of charge. Overall, generic PROMS tended to rank higher across the six usability parameters than condition-specific tools.
CONCLUSION: Cost and unclear fee structures represent barriers to the routine use of condition-specific PROMs for assessing rhGH therapy in real-world settings. Whilst both, generic and condition-specific PROMs play important complementary roles, the former are more likely to exhibit characteristics that support global implementation.