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Towards the standardisation of adult person-reported outcome domains in diabetes research: A Consensus Statement development panel.
Barnard-Kelly, Katharine; Marrero, David; de Wit, Maartje; Pouwer, Frans; Khunti, Kamlesh; Hermans, Norbert; Pierce, Jessica S; Laffel, Lori; Holt, Richard I G; Battelino, Tadej; Naranjo, Diana; Fosbury, Jacqueline; Fisher, Lawrence; Polonsky, William; Weissberg-Benchell, Jill; Hood, Korey K; Schnell, Oliver; Messer, Laurel H; Danne, Thomas; Nimri, Revital; Skovlund, Soren E; Mader, Julia K; Sherr, Jennifer L; Schatz, Desmond; O'Neill, Simon; Doble, Emma; Town, Marissa; Lange, Karin; de Beaufort, Carine; Gonder-Frederick, Linda; Jaser, Sarah S; Liberman, Alon; Klonoff, David; ElSayed, Nuha A; Bannuru, Raveendhara R; Parkin, Christopher G; Snoek, Frank.
Afiliação
  • Barnard-Kelly K; BHR Ltd, Fareham, UK.
  • Marrero D; University of Arizona, Tucson, Arizona, USA.
  • de Wit M; Amsterdam UMC, Amsterdam, The Netherlands.
  • Pouwer F; Department of Psychology, University of Southern Denmark, Odense, Denmark.
  • Khunti K; Steno Diabetes Center Odense, Odense, Denmark.
  • Hermans N; Department of Medical Psychology, Amsterdam UMC, Amsterdam, The Netherlands.
  • Pierce JS; University of Leicester, Leicester, UK.
  • Laffel L; Research Institute of the Diabetes Academy Mergentheim (FIDAM), Mergentheim, Germany.
  • Holt RIG; Center for Healthcare Delivery Science, Nemours Children's Hospital, Orlando, Florida, USA.
  • Battelino T; Joslin Diabetes Center, Boston, Massachusetts, USA.
  • Naranjo D; University of Southampton, Southampton, UK.
  • Fosbury J; Faculty of Medicine, University Medical Center Ljubljana, University of Ljubljana, Ljubljana, Slovenia.
  • Fisher L; Stanford University School of Medicine, San Francisco, California, USA.
  • Polonsky W; United Kingdom Council for Psychotherapy, London, UK.
  • Weissberg-Benchell J; University of California San Francisco, San Francisco, California, USA.
  • Hood KK; Behavioral Diabetes Institute, San Diego, California, USA.
  • Schnell O; Pritzker Department of Psychiatry and Behavioral Health, Northwestern University Feinberg School of Medicine, Ann and Robert H. Lurie Children's Hospital of Chicago, Chicago, Illinois, USA.
  • Messer LH; Department of Pediatrics, Division of Endocrinology and Diabetes, Stanford University School of Medicine, Palo Alto, California, USA.
  • Danne T; Forschergruppe Diabetes e. VMunich, Munich, Germany.
  • Nimri R; Barbara Davis Center, University of Colorado, Boulder, Colorado, USA.
  • Skovlund SE; Tandem Diabetes Care, San Diego, California, USA.
  • Mader JK; Diabetes-Center for Children and Adolescents, Hannover, Germany.
  • Sherr JL; 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.
  • Schatz D; Israel and Sacker Faculty of Medicine, Tel-Aviv University, Tel-Aviv, Israel.
  • O'Neill S; Evidera, London, UK.
  • Doble E; Division of Endocrinology and Diabetology, Department of Internal Medicine, Medical University of Graz, Graz, Austria.
  • Town M; Department of Pediatrics, Yale School of Medicine, Yale University, New Haven, Connecticut, USA.
  • Lange K; Diabetes Institute, University of Florida College of Medicine, Gainesville, Florida, USA.
  • de Beaufort C; American Diabetes Association, Gainesville, Florida, USA.
  • Gonder-Frederick L; Diabetes UK, London, UK.
  • Jaser SS; Patient Author, UK.
  • Liberman A; Children with Diabetes, Cincinnati Children's Hospital, Cincinnati, Ohio, USA.
  • Klonoff D; Hannover Medical School, Department Medical Psychology, Hannover, Germany.
  • ElSayed NA; Centre Hospitalier de Luxembourg, GD de Luxembourg, Technology and Medicine, University of Luxembourg, Luxembourg, Belgium.
  • Bannuru RR; Center for Diabetes Technology, Center for Behavioral Health and Technology, Department of Psychiatry and Neurobehavioral Sciences, University of Virginia, Charlottesville, Virginia, USA.
  • Parkin CG; Vanderbilt University Medical Center, Department of Pediatrics, Nashville, Tennessee, USA.
  • Snoek F; Jesse Z. and Sara Lea Shafer Institute of Endocrinology and Diabetes, National Center for Childhood Diabetes, Schneider Children's Medical Center of Israel, Petah Tikvah, Israel.
Diabet Med ; 41(8): e15332, 2024 Aug.
Article em En | MEDLINE | ID: mdl-38751219
ABSTRACT
Diabetes is unique among chronic diseases because clinical outcomes are intimately tied to how the person living with diabetes reacts to and implements treatment recommendations. It is further characterised by widespread social stigma, judgement and paternalism. This physical, social and psychological burden collectively influences self-management behaviours. It is widely recognised that the individual's perspective about the impact of trying to manage the disease and the burden that self-management confers must be addressed to achieve optimal health outcomes. Standardised, rigorous assessment of mental and behavioural health status, in interaction with physical health outcomes is crucial to aid understanding of person-reported outcomes (PROs). Whilst tempting to conceptualise PROs as an issue of perceived quality of life (QoL), in fact health-related QoL is multi-dimensional and covers indicators of physical or functional health status, psychological and social well-being. This complexity is illuminated by the large number of person reported outcome measures (PROMs) that have been developed across multiple psychosocial domains. Often measures are used inappropriately or because they have been used in the scientific literature rather than based on methodological or outcome assessment rigour. Given the broad nature of psychosocial functioning/mental health, it is important to broadly define PROs that are evaluated in the context of therapeutic interventions, real-life and observational studies. This report summarises the central themes and lessons derived in the assessment and use of PROMs amongst adults with diabetes. Effective assessment of PROMs routinely in clinical research is crucial to understanding the true impact of any intervention. Selecting appropriate measures, relevant to the specific factors of PROs important in the research study will provide valuable data alongside physical health data.
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Texto completo: 1 Coleções: 01-internacional Base de dados: MEDLINE Assunto principal: Qualidade de Vida / Diabetes Mellitus / Medidas de Resultados Relatados pelo Paciente Limite: Adult / Humans Idioma: En Revista: Diabet Med Assunto da revista: ENDOCRINOLOGIA Ano de publicação: 2024 Tipo de documento: Article

Texto completo: 1 Coleções: 01-internacional Base de dados: MEDLINE Assunto principal: Qualidade de Vida / Diabetes Mellitus / Medidas de Resultados Relatados pelo Paciente Limite: Adult / Humans Idioma: En Revista: Diabet Med Assunto da revista: ENDOCRINOLOGIA Ano de publicação: 2024 Tipo de documento: Article