International consensus on a standard set of outcome measures for child and youth anxiety, depression, obsessive-compulsive disorder, and post-traumatic stress disorder

Krause, Karolin Rose; Chung, Sophie; Adewuya, Abiodun O.; Albano, Anne Marie; Babins-Wagner, Rochelle; Birkinshaw, Laura; Brann, Peter; Creswell, Cathy; Delaney, Kathleen R.; Falissard, Bruno; Forrest, Christopher B.; Hudson, Jennifer L.; Ishikawa, Shin‐ichi; Khatwani, Meghna; Kieling, Christian; Krause, Judi; Malik, Kanika; Martínez, Vania; Mughal, Faraz; Ollendick, Thomas H.; Ong, Say How; Patton, George C; Ravens‐Sieberer, Ulrike; Szatmári, Péter; Thomas, Evie; Walters, Lucas; Young, Bryan D.; Zhao, Yue; Wolpert, Miranda

doi:10.1016/s2215-0366(20)30356-4

Cited by 86 publications

(73 citation statements)

References 101 publications

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“…Services wishing to embed routine outcome monitoring face the challenge of having to identify the most important outcomes to measure, as well as the most suitable measurement instruments to track these outcomes. Notably, such instruments should be feasible, acceptable, valid, and reliable [21]. In addition, consultations with youth, families, and clinicians indicate that outcome measurement should be tailored to individual cases, and assess change holistically [22][23][24].…”

Section: Introductionmentioning

confidence: 99%

Are We Comparing Apples with Oranges? Assessing Improvement Across Symptoms, Functioning, and Goal Progress for Adolescent Anxiety and Depression

Krause

Edbrooke‐Childs

Singleton

et al. 2021

Child Psychiatry Hum Dev

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Strategies for comparing routinely collected outcome data across services or systems include focusing on a common indicator (e.g., symptom change) or aggregating results from different measures or outcomes into a comparable core metric. The implications of either approach for judging treatment success are not fully understood. This study drew on naturalistic outcome data from 1641 adolescents with moderate or severe anxiety and/or depression symptoms who received routine specialist care across 60 mental health services in England. The study compared rates of meaningful improvement between the domains of internalizing symptoms, functioning, and progress towards self-defined goals. Consistent cross-domain improvement was observed in only 15.6% of cases. Close to one in four (24.0%) young people with reliably improved symptoms reported no reliable improvement in functioning. Inversely, one in three (34.8%) young people reported meaningful goal progress but no reliable symptom improvement. Monitoring systems that focus exclusively on symptom change risk over- or under-estimating actual impact, while aggregating different outcomes into a single metric can mask informative differences in the number and type of outcomes showing improvement. A move towards harmonized outcome measurement approaches across multiple domains is needed to ensure fair and meaningful comparisons.

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Section: Introductionmentioning

confidence: 99%

Are We Comparing Apples with Oranges? Assessing Improvement Across Symptoms, Functioning, and Goal Progress for Adolescent Anxiety and Depression

Krause

Edbrooke‐Childs

Singleton

et al. 2021

Child Psychiatry Hum Dev

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“…The assessment of life impact can provide important complementary information [5][6][7]63,64]. Two recent initiatives have highlighted functioning as a core outcome to track when evaluating clinical care for paediatric anxiety and depression [9], and when measuring youth mental health outcomes in population surveys [65]. Yet, difficulties have been reported with identifying a gold standard measure [9].…”

Section: Discussionmentioning

confidence: 99%

“…Two recent initiatives have highlighted functioning as a core outcome to track when evaluating clinical care for paediatric anxiety and depression [9], and when measuring youth mental health outcomes in population surveys [65]. Yet, difficulties have been reported with identifying a gold standard measure [9]. This scoping umbrella review does not aim to yield an authoritative summary of which instrument provides the best measurement properties.…”

Section: Discussionmentioning

confidence: 99%

“…Impaired daily functioning has been shown to influence help-seeking and health providers' decisions about the type of care an individual should receive [3,4]. Assessing life impact can also help contextualize changes in symptom severity scores when assessing treatment efficacy and effectiveness [5][6][7][8][9][10]. From a public health perspective, consideration of life impact has moved common mental health conditions like depression to the fore of public health agendas, by showcasing that the associated burden of disease is comparable to that of cardiovascular or respiratory diseases [2].…”

Section: Introductionmentioning

confidence: 99%

“…Researchers wishing to assess the life impact of mental health difficulties in young people further face the challenge of selecting the most appropriate instrument. A recent scoping review identified 14 different measures of global functioning, three measures of condition-specific impairment, and 14 measures of health-related quality of life (HRQoL), across 257 treatment studies for child and youth anxiety, depression, obsessive-compulsive disorder (OCD) and post-traumatic stress disorder (PTSD) [9]. Several reviews provide overviews of available instruments [28][29][30][31][32][33][34], their measurement properties and feasibility characteristics, but these have tended to be domain-specific (e.g., focusing only on HRQoL); consequently, a comprehensive overview of life impact measures is lacking.…”

Section: Introductionmentioning

confidence: 99%

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Assessing the Impact of Mental Health Difficulties on Young People’s Daily Lives: Protocol for a Scoping Umbrella Review of Measurement Instruments

Krause

Chung

Rodak

et al. 2021

Preprint

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Introduction: An important consideration for determining the severity of mental health symptoms is their impact on youth's daily lives. Those wishing to assess life impact face several challenges: First, various measurement instruments are available, including of global functioning, health-related quality of life (HRQoL), and well-being. Existing reviews have tended to focus on one of these domains; consequently, a comprehensive overview is lacking. Second, the extent to which such instruments truly capture distinct concepts is unclear. Third, many available scales conflate symptoms and their impact, thus undermining much needed analyses of associations between the two. Methods and analysis: A scoping umbrella review will examine existing reviews of life impact measures for use with 6-24-year-olds in the context of mental health and well-being research. We will systematically search five bibliographic databases (MEDLINE, Embase, APA PsycINFO, CINAHL, Web of Science), and conduct systematic record screening, data extraction and charting based on methodological guidance by the Joanna Briggs Institute (JBI). Data synthesis will involve the tabulation of scale characteristics, feasibility, and measurement properties, and the use of summary statistics to synthesize how these instruments operationalize life impact. Ethics and dissemination: This study will provide a comprehensive road map for researchers and clinicians seeking to assess life impact in youth mental health, providing guidance in navigating available measurement options. We will seek to publish the findings in a leading peer-reviewed journal in the field. Formal research ethics approval will not be required. Registration details: This protocol was registered prospectively with the Open Science Framework (osf.io/jfqdv).

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Core Outcome Sets in Child Health

Lei

Shen

Yang³

et al. 2022

JAMA Pediatr

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ImportanceDeveloping core outcome sets is essential to ensure that results of clinical trials are comparable and useful. A number of core outcome sets in pediatrics have been published, but a comprehensive in-depth understanding of core outcome sets in this field is lacking.ObjectiveTo systematically identify core outcome sets in child health, collate the diseases to which core outcome sets have been applied, describe the methods used for development and stakeholder participation, and evaluate the methodological quality of existing core outcome sets.Evidence ReviewMEDLINE, SCOPUS, Cochrane Library, and CINAHL were searched using relevant search terms, such as clinical trials, core outcome, and children, along with relevant websites, such as Core Outcome Measures in Effectiveness Trials (COMET). Four researchers worked in teams of 2, performed literature screening and data extraction, and evaluated the methodological quality of core outcome sets using the Core Outcome Set–Standards for Development (COS-STAD).FindingsA total of 77 pediatric core outcome sets were identified, mainly developed by organizations or researchers in Europe, North America, and Australia and mostly from the UK (22 [29%]) and the US (22 [29%]). A total of 77 conditions were addressed; the most frequent International Classification of Diseases, 11th Revision category was diseases of the digestive system (14 [18%]). Most of the outcomes in pediatric core outcome sets were unordered (34 [44%]) or presented in custom classifications (29 [38%]). Core outcome sets used 1 or more of 8 development methods; the most frequent combination of methods was systematic review/literature review/scoping review, together with the Delphi approach and consensus for decision-making (10 [14%]). Among the 6 main types of stakeholders, clinical experts were the most frequently involved (74 [100%]), while industry representatives were rarely involved (4 [5%]). Only 6 core outcome sets (8%) met the 12 criteria of COS-STAD.Conclusions and RelevanceFuture quality of pediatric core outcome sets should be improved based on the standards proposed by the COMET initiative, while core outcome sets methodology and reporting standards should be extended to pediatric populations to help improve the quality of core outcome sets in child health. In addition, the COMET outcome taxonomy should also add items applicable to children.

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International consensus on a standard set of outcome measures for child and youth anxiety, depression, obsessive-compulsive disorder, and post-traumatic stress disorder

Cited by 86 publications

References 101 publications

Are We Comparing Apples with Oranges? Assessing Improvement Across Symptoms, Functioning, and Goal Progress for Adolescent Anxiety and Depression

Are We Comparing Apples with Oranges? Assessing Improvement Across Symptoms, Functioning, and Goal Progress for Adolescent Anxiety and Depression

Assessing the Impact of Mental Health Difficulties on Young People’s Daily Lives: Protocol for a Scoping Umbrella Review of Measurement Instruments

Core Outcome Sets in Child Health

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