Discontinuation of follow-up care for young people with complex chronic conditions: conceptual definitions and operational components

BMC Health Services Research

Bengt Johansson¹  Ewa-Lena Bratt²  Sandra Skogby³  Philip Moons⁴  Eva Goossens⁵ 

[1] Department of Surgery and Perioperative Sciences, Umeå University, Umeå, Sweden;Institute of Health and Care Sciences, University of Gothenburg, Gothenburg, Sweden;Department of Paediatric Cardiology, Queen Silvia Children’s Hospital, Gothenburg, Sweden;Institute of Health and Care Sciences, University of Gothenburg, Gothenburg, Sweden;Department of Paediatric Cardiology, Queen Silvia Children’s Hospital, Gothenburg, Sweden;KU Leuven Department of Public Health and Primary Care, Leuven, Belgium;Institute of Health and Care Sciences, University of Gothenburg, Gothenburg, Sweden;KU Leuven Department of Public Health and Primary Care, Leuven, Belgium;Department of Paediatrics and Child Health, University of Cape Town, Cape Town, South Africa;KU Leuven Department of Public Health and Primary Care, Leuven, Belgium;Research Foundation Flanders, Brussels, Belgium;Center for Research and Innovation in Care, Faculty of Nursing, University of Antwerp, Antwerp, Belgium;Department of Patient Care Services, Antwerp University Hospital, Antwerp, Belgium;

关键词: Adolescent;    Young adult;    Chronic disease;    Delivery of health care;    Continuity of patient care: patient transfer;    Lost to follow-up;   

DOI  :  10.1186/s12913-021-07335-x

来源: Springer

【 摘 要 】

BackgroundA substantial proportion of young people with Complex Chronic Conditions (CCCs) experience some degree of discontinuation of follow-up care, which is an umbrella term to describe a broken chain of follow-up. Discontinuation of follow-up care is not clearly defined, and the great plethora of terms used within this field cannot go unnoticed. Terms such as “lost to follow-up”, “lapses in care” and “care gaps”, are frequently used in published literature, but differences between terms are unclear. Lack of uniformity greatly affects comparability of study findings. The aims of the present study were to (i) provide a systematic overview of terms and definitions used in literature describing discontinuation of follow-up care in young people with CCC’s; (ii) to clarify operational components of discontinuation of follow-up care (iii); to develop conceptual definitions and suggested terms to be used; and (iv) to perform an expert-based evaluation of terms and conceptual definitions.MethodsA systematic literature search performed in PubMed was used to provide an overview of current terms used in literature. Using a modified summative content analysis, operational components were analysed, and conceptual definitions were developed. These conceptual definitions were assessed by an expert panel using a survey.ResultsIn total, 47 terms and definitions were retrieved, and a core set of operational components was identified. Three main types of discontinuation of follow-up care emerged from the analysis and expert evaluation, conceptually defined as follows: Lost to follow-up care: “No visit within a defined time period and within a defined context, and the patient is currently no longer engaged in follow-up care”;Gap in follow-up care: “Exceeded time interval between clinic visits within a defined context, and the patient is currently engaged in follow-up care”; andUntraceability: “Failure to make contact due to lack of contact information”.ConclusionBy creating a common vocabulary for discontinuation of follow-up care, the quality of future studies could improve. The conceptual definitions and operational components provide guidance to both researchers and healthcare professionals focusing on discontinuation of follow-up care for young people with CCCs.

【 授权许可】

CC BY