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

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Skogby, Sandra,1989Gothenburg University,Göteborgs universitet,Institutionen för vårdvetenskap och hälsa,Institute of Health and Care Sciences (author)

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

Article/chapterEnglish2021

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2021-12-15
BioMed Central,2021
electronicrdacarrier

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LIBRIS-ID:oai:DiVA.org:umu-190860
https://urn.kb.se/resolve?urn=urn:nbn:se:umu:diva-190860URI
https://doi.org/10.1186/s12913-021-07335-xDOI
https://gup.ub.gu.se/publication/311114URI

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Language:English
Summary in:English

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Subject category:art swepub-publicationtype

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Background: A 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.Methods: A 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.Results: In 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”.Conclusion: By 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.

Subject headings and genre

MEDICIN OCH HÄLSOVETENSKAP Hälsovetenskap Hälso- och sjukvårdsorganisation, hälsopolitik och hälsoekonomi hsv//swe
MEDICAL AND HEALTH SCIENCES Health Sciences Health Care Service and Management, Health Policy and Services and Health Economy hsv//eng
MEDICIN OCH HÄLSOVETENSKAP Hälsovetenskap hsv//swe
MEDICAL AND HEALTH SCIENCES Health Sciences hsv//eng
Adolescent
Chronic disease
Continuity of patient care: patient transfer
Delivery of health care
Lost to follow-up
Young adult

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Bratt, Ewa-Lena,1970Gothenburg University,Göteborgs universitet,Institutionen för vårdvetenskap och hälsa,Institute of Health and Care Sciences(Swepub:gu)xbraew (author)
Johansson, BengtUmeå universitet,Klinisk fysiologi(Swepub:umu)bejo0003 (author)
Moons, Philip,1968Gothenburg University,Göteborgs universitet,Institutionen för vårdvetenskap och hälsa,Institute of Health and Care Sciences(Swepub:gu)xmooph (author)
Goossens, EvaKU 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 (author)
Göteborgs universitetInstitutionen för vårdvetenskap och hälsa (creator_code:org_t)

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In:BMC Health Services Research: BioMed Central21:11472-6963

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