Towards standardization of person-reported outcomes (PROs) in pediatric diabetes research: A consensus report.

Autor: Barnard-Kelly K; Southern Health NHS Foundation Trust, Southampton, UK., Marrero D; Indiana University School of Public Health, Bloomington, Indiana, USA., de Wit M; Amsterdam UMC, Netherlands, Amsterdam Public Health, Mental Health, Amsterdam, the Netherlands., Pouwer F; Department of Psychology, University of Southern Denmark, Copenhagen, Denmark.; Steno Diabetes Center Odense, Odense, Denmark.; Department of Medical Psychology, Amsterdam UMC, Amsterdam, The Netherlands., Khunti K; Diabetes Research Centre, University of Leicester, Leicester, UK., Hermans N; Research Institute of the Diabetes Academy Mergentheim (FIDAM), Bad Mergentheim, Germany.; Department of Clinical Psychology and Psychotherapy, University of Bamberg, Bamberg, Germany., Pierce JS; Center for Healthcare Delivery Science, Nemours Children's Hospital, Orlando, Florida, USA., Laffel L; Joslin Diabetes Center, Inc., Boston, Massachusetts, USA., Holt RIG; University of Southampton, Southampton, UK., Battelino T; University Medical Center Ljubljana, and Faculty of Medicine, University of Ljubljana, Ljubljana, Slovenia., Naranjo D; Stanford University School of Medicine, Stanford, California, USA., Fosbury J; Psychotherapist, Brighton, UK., Fisher L; University of California San Francisco, San Francisco, California, USA., Polonsky W; Behavioral Diabetes Institute, San Diego, California, USA., Weissberg-Benchell J; Northwestern University Feinberg School of Medicine, Chicago, Illinois, USA., Hood KK; Division of Endocrinology and Diabetes, Department of Pediatrics, Stanford University School of Medicine, Stanford, California, USA., Schnell O; Forschergruppe Diabetes e. V, Oberschleißheim, Germany., Messer LH; Barbara Davis Center, University of Colorado, Aurora, Colorado, USA.; Tandem Diabetes Care, San Diego, California, USA., Danne T; Breakthrough T1D, New York, New York, USA., Nimri R; The Jesse Z and Sara Lea Shafer Institute for Endocrinology and Diabetes, National Center for Childhood Diabetes, Schneider Children's Medical Center of Israel, Petah Tikva, Israel.; Israel and Sacker Faculty of Medicine, Tel-Aviv University, Tel-Aviv, Israel., Skovlund S; Evidera, London, UK., Mader JK; Division of Endocrinology and Diabetology, Department of Internal Medicine, Medical University of Graz, Graz, Austria., Sherr JL; Department of Pediatrics, Yale School of Medicine, Yale University, New Haven, Connecticut, USA., Schatz D; Diabetes Institute, University of Florida College of Medicine Past President, American Diabetes Association, Arlington, Florida, USA., O'Neill S; Diabetes UK, London, UK., Doble E; Patient author, Edinburgh, UK., Town M; Children with Diabetes, Cincinnati Children's Hospital, Cincinnati, Ohio, USA., Lange K; Department Medical Psychology, Hannover Medical School, Hannover, Germany., de Beaufort C; Centre Hospitalier de Luxembourg, Luxembourg, GD de Luxembourg, Technology and Medicine, University of Luxembourg, Esch-sur-Alzette, Luxembourg., Gonder-Frederick L; Center for Diabetes Technology, Center for Behavioral Health and Technology, Department of Psychiatry and Neurobehavioral Sciences, University of Virginia, Charlottesville, Virginia, USA., Jaser SS; Department of Pediatrics, Vanderbilt University Medical Center, Nashville, Tennessee, USA., Liberman A; Jesse Z. and Sara Lea Shafer Institute of Endocrinology and Diabetes, National Center for Childhood Diabetes, Schneider Children's Medical Center of Israel, Petah Tikva, Israel., Klonoff D; Mills-Peninsula Medical Center, Burlingame, California, USA., Elsayed NA; Health Care Improvement, American Diabetes Association, Harvard Medical School, Boston, Massachusetts, USA., Bannuru RR; Medical Affairs and QI Outcomes, American Diabetes Association, Arlington, Virginia, USA., Ajjan R; Leeds Diabetes Centre, Leeds, UK., Parkin C; CGParkin Communications, Inc., Clark County, Nevada, USA., Snoek FJ; Amsterdam UMC, Vrije Universiteit Amsterdam, Amsterdam, the Netherlands.
Jazyk: angličtina
Zdroj: Diabetic medicine : a journal of the British Diabetic Association [Diabet Med] 2024 Dec 17, pp. e15484. Date of Electronic Publication: 2024 Dec 17.
DOI: 10.1111/dme.15484
Abstrakt: Background: Diabetes ranks among the most common chronic conditions in childhood and adolescence. It is unique among chronic conditions, in that clinical outcomes are intimately tied to how the child or adolescent living with diabetes and their parents or carers react to and implement good clinical practice guidance. It is widely recognized that the individual's perspective about the impact of trying to manage the disease together with the burden of self-management should be addressed to achieve optimal health outcomes. Standardized, rigorous assessment of behavioural and mental health outcomes is crucial to aid understanding of person-reported outcomes alongside, and in interaction with, physical health outcomes. Whilst tempting to conceptualize person-reported outcomes as a focus on perceived quality of life, the reality is that health-related quality of life is multi-dimensional and covers indicators of physical or functional health status, psychological well-being and social well- being.
Methods: In this context, this Consensus Statement has been developed by a collection of experts in diabetes to summarize the central themes and lessons derived in the assessment and use of person-reported outcome measures in relation to children and adolescents and their parents/carers, helping to provide a platform for future standardization of these measures for research studies and routine clinical use.
Results: This consensus statement provides an exploration of person-reported outcomes and how to routinely assess and incorporate into clincial research.
(© 2024 Diabetes UK.)
Databáze: MEDLINE
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