Development of an international standard set of patient-centred outcome measures for overall paediatric health: a consensus process

Algurén, Beatrix; Ramirez, Jessily; Salt, Matthew; Sillett, Nick; Myers, Stacie N.; Alvarez-Cote, Albie; Butcher, Nancy J.; Canêo, Luiz Fernando; Céspedes, Jaime; Chaplin, John; Ng, Kee Chong; García‐García, Juan José; Hazelzet, Jan A.; Klassen, Anne F.; Turquetto, Aida Luiza Ribeiro; Mew, Emma; Morris, Michael; Offringa, Martin; O’Meara, Matthew; Papp, James M; Rodrigo, Carlos; Switaj, Timothy L; Valencia-Mayer, Catalina; Jenkins, Kathy J.

doi:10.1136/archdischild-2020-320345

Cited by 20 publications

(15 citation statements)

References 11 publications

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“…Another process of developing an Overall Paediatric Health Standard Set [OPH-SS] of outcome measures which matters to young people and their families, internationally, was also published in 2020. 19 The current study complements both papers, as this paper looks at both children and adolescents, as well as desired research priorities in terms of treatments, as well as outcomes.…”

Section: Introductionmentioning

confidence: 85%

Priorities for research in child and adolescent anxiety and depression: a priority setting partnership with youth and professionals

et al. 2021

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Background: A starting point for evaluating the effectiveness of treatments should be to identify evidence gaps. Furthermore, such evaluations should consider the perspectives of patients, clinicians and carers to ensure relevance and potentially influence future research initiatives. Methods: Our approach, inspired by the James Lind Alliance methods, involved three steps. First, we performed a document analysis by identifying interventions and outcomes in two recently published overviews of systematic reviews, which summarised the effects of interventions for anxiety and depression in children and adolescents. Second, we surveyed children and adolescents with personal experiences of depression or anxiety as well as clinicians, and asked them to suggest treatments and outcomes associated with uncertainty. Finally, we facilitated a consensus process where clinicians and youth mental health patient representatives were invited to prioritise research uncertainties in separate consensus processes. Results: The survey included 674 respondents who reported a total of 1267 uncertainties. Independent coding by four investigators revealed 134 suggestions for treatments of anxiety, 90 suggestions for treatments of depression, 84 for outcomes of interventions for anxiety and 71 suggestions for outcomes of interventions for depression. Two separate priority setting workshops with eight clinicians and ten youth resulted in four independent top ten priority lists. Conclusion: Top ten lists of treatments and outcome domains of anxiety and depression in children and adolescents was identified by youth and clinicians. The results may influence the research agenda, and ultimately benefit patients.

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Section: Introductionmentioning

confidence: 85%

Priorities for research in child and adolescent anxiety and depression: a priority setting partnership with youth and professionals

et al. 2021

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“…The OPH standard set covers outcomes from birth to 24 years of age, irrespective of the medical condition. After 5 years of age, children initially followed by this outcomes set can transition to the OPH set to measure the relevant outcomes into adolescence [22]. Furthermore, there are data that shows that the consequences of premature birth can extend far into adulthood, like predisposition to metabolic syndrome, leading to earlier an onset of cardiovascular disease, or reduced pulmonary capacity, leading to Color version available online limited respiratory capacity compared to healthy-born peers.…”

Section: Discussionmentioning

confidence: 99%

Standardized Outcome Measures for Preterm and Hospitalized Neonates: An ICHOM Standard Set

Schouten¹,

Haupt²,

Ramirez³

et al. 2022

Neonatology

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Introduction: Approximately, one in ten infants is born preterm or requires hospitalization at birth. These complications at birth have long-term consequences that can extend into childhood and adulthood. Timely detection of developmental delay through surveillance could enable tailored support for these babies and their families. However, the possibilities for follow-up are limited, especially in middle- and low-income countries, and the tools to do so are either not available or too expensive. A standardized and core set of outcomes for neonates, with feasible tools for evaluation and follow-up, could result in improving quality, enhance shared decision-making, and enable global benchmarking. Methods: The International Consortium for Health Outcomes Measurement (ICHOM) convened an international working group, which was comprised of 14 health-care professionals (HCP) and 6 patient representatives in the field of neonatal care. An outcome set was developed using a three-round modified Delphi process, and it was endorsed through a patient representative-validation survey and an HCP survey. Results: A literature review revealed 1,076 articles and 26 registries which were screened for meaningful outcomes, patient-reported outcome measures, clinical measures, and case mix variables. This resulted in a neonatal set with 21 core outcomes covering three domains (physical, social, and mental functioning) and 14 tools to assess these outcomes at three timepoints. Discussion: This set can be implemented globally and it will allow comparison of outcomes across different settings and countries. The transparent consensus-driven development process which involved stakeholders and professionals from all over the world ensures global relevance.

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“…For quantitative studies, a list of PROMs administered to children with cancer was extracted. To ensure that all relevant PROMs were included, the list was cross-checked against a list of 112 measures collected for the development of the ICHOM Standard Set for Pediatric Health Assessment [ 18 ]. Subsequently, a comprehensive list of items from all PROMs was extracted [MR].…”

Section: Methodsmentioning

confidence: 99%

“…Despite the increased awareness of the importance of HRQOL in children with cancer, PROMs are still rarely used in clinical trials [ 16 , 17 ]. While a generic Standard Set for Pediatric Health Assessment has recently been published [ 18 ], no cancer-specific core outcome set has yet been defined. Available HRQOL instruments differ considerably in terms of content [ 19 ] and have been criticized for mostly focusing on negative aspects (i.e., impairments instead of functional ability) [ 20 ].…”

Section: Introductionmentioning

confidence: 99%

Updating our understanding of health-related quality of life issues in children with cancer: a systematic review of patient-reported outcome measures and qualitative studies

Rothmund

Sodergren²,

Rohde³

et al. 2022

Qual Life Res

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Background Health-related quality of life (HRQOL) is a key concept in pediatric oncology. This systematic review aims to update the conceptual HRQOL model by Anthony et al. (Qual Life Res 23(3):771–789, 2014), covering physical, emotional, social and general HRQOL aspects, and to present a comprehensive overview of age- and disease-specific HRQOL issues in children with cancer. Methods Medline, PsychINFO, the Cochrane Database for Systematic Reviews (CDSR), and the COSMIN database were searched (up to 31.12.2020) for publications using patient-reported outcome measures (PROMs) and qualitative studies in children with cancer (8–14-year) or their parents. Items and quotations were extracted and mapped onto the conceptual model for HRQOL in children with cancer mentioned above. Results Of 2038 identified studies, 221 were included for data extraction. We identified 96 PROMS with 2641 items and extracted 798 quotations from 45 qualitative studies. Most items and quotations (94.8%) could be mapped onto the conceptual model. However, some adaptations were made and the model was complemented by (sub)domains for ‘treatment burden’, ‘treatment involvement’, and ‘financial issues’. Physical and psychological aspects were more frequently covered than social issues. Discussion This review provides a comprehensive overview of HRQOL issues for children with cancer. Our findings mostly support the HRQOL model by Anthony et al. (Qual Life Res 23(3):771–789, 2014), but some adaptations are suggested. This review may be considered a starting point for a refinement of our understanding of HRQOL in children with cancer. Further qualitative research will help to evaluate the comprehensiveness of the HRQOL model and the relevance of the issues it encompasses.

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Development of an international standard set of patient-centred outcome measures for overall paediatric health: a consensus process

Cited by 20 publications

References 11 publications

Priorities for research in child and adolescent anxiety and depression: a priority setting partnership with youth and professionals

Priorities for research in child and adolescent anxiety and depression: a priority setting partnership with youth and professionals

Standardized Outcome Measures for Preterm and Hospitalized Neonates: An ICHOM Standard Set

Updating our understanding of health-related quality of life issues in children with cancer: a systematic review of patient-reported outcome measures and qualitative studies

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