Discontinuation of follow-up care for young people with complex chronic conditions: conceptual definitions and operational components
Adolescent; Aftercare; Chronic Disease; Continuity of patient care: patient transfer; Delivery of health care; Health Personnel; Lost to follow-up; Young adult
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"; and Untraceability: "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.
Skogby S; Bratt EL; Johansson B; Moons P; Goossens E
BMC Health Services Research
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1186/s12913-021-07335-x" target="_blank" rel="noreferrer noopener">10.1186/s12913-021-07335-x</a>
Attitude toward and current practice of transfer and transition of adolescents with congenital heart disease in the United States of America and Europe
Child; Humans; United States; Adult; Attitude of Health Personnel; Questionnaires; Continuity of Patient Care; Europe; adolescent; Adolescent Transitions; retrospective studies; Heart Defects; Congenital/therapy; Patient Transfer/statistics & numerical data
The objective of this study was to explore the current practice and attitudes of pediatric cardiologists in the United States and Europe on the transfer and transition of children with congenital heart disease (CHD). A survey among pediatric cardiology programs in the United States and Europe was undertaken. Sixty-nine centers completed and returned the 61-item questionnaire that was specifically devised for this survey. Of 69 participating centers, 74% reported that they transfer their patients to adult-focused care. When a center transfers its patients, 80% transfer them to a formalized Adult Congenital Heart Disease Program. The median age of transfer is 18 years. Comorbidities, pregnancy, and patient/family request to leave pediatric cardiology were identified as initiators for transfer. Complexity of the heart defect was relatively less important when deciding whether to transfer patients. Only one-third of the centers that transfer their patients provide a structured preparation for patients and family. Development of a formal transition program is planned at 59% of the centers that transfer patients. In conclusion, timely transfer and a structured transition process of children with CHD are not implemented in all pediatric cardiology programs. Health-care providers working in pediatric cardiology should make their transfer policies explicit and transition programs ought to be developed.
2009
Hilderson D; Saidi AS; Van Deyk K; Verstappen A; Kovacs AH; Fernandes SM; Canobbio MM; Fleck D; Meadows A; Linstead R; Moons P
Pediatric Cardiology
2009
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1007/s00246-009-9442-1" target="_blank" rel="noreferrer">10.1007/s00246-009-9442-1</a>
Implementation of transition programs can prevent another lost generation of patients with congenital heart disease
Child; Humans; Adult; Health Services Needs and Demand; Treatment Outcome; Program Development; Longevity; Morbidity; adolescent; Adolescent Transitions; Heart Defects; Continuity of Patient Care/organization & administration; Aftercare/organization & administration; Congenital/complications/epidemiology/prevention & control; Patient Education as Topic/organization & administration
Congenital heart disease is the most frequently occurring birth defect. To date, more than 90% of the children born with a heart defect reach adulthood. Since many patients are prone to residua and sequelae, lifelong specialized care is required. However, studies indicate that about one-half to three-quarters of the patients are lost to follow-up when they have grown up. This has resulted in a virtual lost generation. Lapse of care is associated with significant morbidity. Therefore, implementation of strategies to prevent patients from failing to continue regular follow-up is critical. It is argued that transition programs that inform patients about the rationale for ongoing follow-up and that teach them how to navigate the medical system can avoid another lost generation.
2008
Moons P; Hilderson D; Van Deyk K
European Journal Of Cardiovascular Nursing
2008
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1016/j.ejcnurse.2008.10.001" target="_blank" rel="noreferrer">10.1016/j.ejcnurse.2008.10.001</a>
The spectrum of adult congenital heart disease in Europe: morbidity and mortality in a 5 year follow-up period. The Euro Heart Survey on adult congenital heart disease
Female; Humans; Male; Pregnancy; Pregnancy Complications; Adult; Data Collection; Follow-Up Studies; Aged; Middle Aged; Survival Analysis; adolescent; Adolescent Transitions; Patient Acceptance of Health Care/statistics & numerical data; Heart Defects; Europe/epidemiology; Ambulatory Care/statistics & numerical data; Cardiovascular Agents/therapeutic use; Cardiovascular/mortality; Congenital/mortality
AIMS: To describe clinical and demographic characteristics at baseline of a European cohort of adults with congenital heart disease (CHD) and to assess mortality and morbidity in a 5 year follow-up period. METHODS AND RESULTS: Data collected as part of the Euro Heart Survey on adult CHD was analysed. This entailed information transcribed from the files of 4110 patients diagnosed with one of eight congenital heart conditions ('defects'), who consecutively visited the outpatient clinics of one of the participating centres in 1998. The patients were included retrospectively and followed until the end of 2003 for a median follow-up of 5.1 years. Notwithstanding their overall relatively good functional class and low mortality over the follow-up period, a considerable proportion of the patients had a history of endocarditis, arrhythmias, or vascular events. There were major differences between the eight defects, both in morbidity and regarding specific characteristics. Outcomes were worst in cyanotic defects and in the Fontan circulation, but a considerable proportion of the other patients also suffer from cardiac symptoms. In particular, arrhythmias are common. CONCLUSION: The spectrum of adult CHD in Europe emerging from this survey is one of a predominantly young population with substantial morbidity but relatively low mortality in a 5 year period.
2005
Engelfriet P; Boersma E; Oechslin E; Tijssen J; Gatzoulis MA; Thilen U; Kaemmerer H; Moons P; Meijboom F; Popelova J; Laforest V; Hirsch R; Daliento L; Thaulow E; Mulder B
European Heart Journal
2005
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1093/eurheartj/ehi396" target="_blank" rel="noreferrer">10.1093/eurheartj/ehi396</a>
Predictors Of Care Gaps In Adolescents With Complex Chronic Condition Transitioning To Adulthood
CONTEXT: Breaks in the delivery of health care (ie, [health]care gaps) occur in a large proportion of young people transitioning to adulthood. Developing interventions that prevent adolescents from dropping out of the medical system, as they leave pediatric care, requires an understanding of determinants of care gaps. OBJECTIVE: To ascertain determinants of care gaps in young people with chronic conditions as they transition to adulthood by performing a systematic literature search. DATA SOURCES: MEDLINE, CINAHL, and Embase were queried for pertinent peer-reviewed publications. STUDY SELECTION: Primary quantitative or mixed methods studies that aimed to identify determinants of care gaps in young people (aged 10–25 years) diagnosed with complex chronic conditions and written in English, French, or Dutch were selected. Ten publications satisfied these criteria. DATA EXTRACTION: For each publication, determinants of care gaps and quantitative results were extracted. Determinants were categorized into 4 groups using thematic analysis. Quantitative results were standardized, and raw data were converted into odds ratios. RESULTS: Overall, 11 risk factors and 9 protective factors for care gaps were identified. All factors were related to patient characteristics. Demographics, disease-related characteristics, health care services use, and patient health behaviors and beliefs were significant determinants of care gaps in adolescents with chronic conditions. LIMITATIONS: Large variability in study methods, statistical techniques, and study populations resulted in inconsistent study findings. CONCLUSIONS: This systematic review identified patient-related determinants of care gaps. Unfortunately, the internal and external validity of the study findings are limited, warranting future prospective, multilevel studies that address remaining knowledge gaps.
Goossens E; Bovijn L; Gewillig M; Budts W; Moons P
American Journal of Obstetrics & Gynecology
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
10.1177/0030222815598455