Expert Consensus on a Definition for Children With Medical Complexity in England: A Modified Delphi Panel
Author(s)
Michelle Kukielka, MSc1, Joanne Martin, MSc2, Eleanor Willis, MSc3, Sam Levy, MA4, Manya Mirchandani, MSc5, Anna Willis, MPH5, Audrey Artignan, MPhil5.
1Roald Dahl's Marvellous Children's Charity, Amersham, United Kingdom, 2Royal Manchester Children’s Hospital/Managed Clinical Services, Manchester, United Kingdom, 3East and North Hertfordshire Teaching NHS Trust, Hertfordshire, United Kingdom, 4Manchester University NHS Foundation Trust, Manchester, United Kingdom, 5Costello Medical, London, United Kingdom.
1Roald Dahl's Marvellous Children's Charity, Amersham, United Kingdom, 2Royal Manchester Children’s Hospital/Managed Clinical Services, Manchester, United Kingdom, 3East and North Hertfordshire Teaching NHS Trust, Hertfordshire, United Kingdom, 4Manchester University NHS Foundation Trust, Manchester, United Kingdom, 5Costello Medical, London, United Kingdom.
OBJECTIVES: Children with Medical Complexity (CMC) are an emerging population of children with substantial and complex clinical care needs. Currently, the recognition and definition of CMC in England varies according to local practice, which limits the availability of accurate data needed to make strategic decisions regarding co-ordination and access to care. This study aimed to establish expert consensus on criteria for identification of CMC in England.
METHODS: A modified Delphi panel with three online survey rounds was conducted. Eligible participants included healthcare professionals in England with experience of managing or treating ≥20 CMC and ≥5 years of clinical experience. A targeted literature review was conducted to define the scope, and input from a clinically-experienced steering committee was sought to inform the content and interpretation of each survey round. Questions included free-text, categorical and Likert scale formats. Consensus was set at a predefined threshold of ≥70%.
RESULTS: Fifty-five participants completed the Round 1 survey, which comprised open-ended questions on local formal and informal guidance for defining CMC, as well as personal opinion. The responses were analysed qualitatively to draw out 13 individual criteria reported across 4 domains (clinical conditions; healthcare use; functional limitations/technology dependence; wider disease burden and patient needs). In Round 2, participants were asked for their level of agreement with each criterion; nine criteria reached the pre-specified consensus threshold. These were retained to form a case definition presented in Round 3, which obtained near total consensus (96.2% [n=51/53] participants agreed or strongly agreed). Consensus was also obtained on a minimum number of criteria/domains required to be met, allowing flexibility to identify this heterogeneous population.
CONCLUSIONS: The results from the modified Delphi panel offer unified criteria to assist in the systematic classification of CMC and present a framework for development of a clinical code.
METHODS: A modified Delphi panel with three online survey rounds was conducted. Eligible participants included healthcare professionals in England with experience of managing or treating ≥20 CMC and ≥5 years of clinical experience. A targeted literature review was conducted to define the scope, and input from a clinically-experienced steering committee was sought to inform the content and interpretation of each survey round. Questions included free-text, categorical and Likert scale formats. Consensus was set at a predefined threshold of ≥70%.
RESULTS: Fifty-five participants completed the Round 1 survey, which comprised open-ended questions on local formal and informal guidance for defining CMC, as well as personal opinion. The responses were analysed qualitatively to draw out 13 individual criteria reported across 4 domains (clinical conditions; healthcare use; functional limitations/technology dependence; wider disease burden and patient needs). In Round 2, participants were asked for their level of agreement with each criterion; nine criteria reached the pre-specified consensus threshold. These were retained to form a case definition presented in Round 3, which obtained near total consensus (96.2% [n=51/53] participants agreed or strongly agreed). Consensus was also obtained on a minimum number of criteria/domains required to be met, allowing flexibility to identify this heterogeneous population.
CONCLUSIONS: The results from the modified Delphi panel offer unified criteria to assist in the systematic classification of CMC and present a framework for development of a clinical code.
Conference/Value in Health Info
2025-11, ISPOR Europe 2025, Glasgow, Scotland
Value in Health, Volume 28, Issue S2
Code
EPH102
Topic
Epidemiology & Public Health
Topic Subcategory
Disease Classification & Coding
Disease
No Additional Disease & Conditions/Specialized Treatment Areas, Pediatrics