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

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.

Socioeconomic Factors and Quality of Life Perceived by Parents and Children with Complex Chronic Conditions in Spain

Health-related quality of life of children with complex chronic conditions could be affected by sociodemographic factors. Most studies focus exclusively on the parents’ perceptions of quality of life. This study aimed to determine the health-related quality of life of these children, according to their parents and the children themselves. A cross-sectional study was developed on children aged over five years with complex chronic conditions. Health-related quality of life, educational attainment, and social status were evaluated. A total of 101 children were included with a mean age of 10.48 years, and 35.6% were female. The most frequent disease was oncological (28.7%). Children perceived a better health-related quality of life, compared to their parents’ assessment: median difference −8.4 (95%CI: −9.2 to −3.8). Moreover, differences were observed by socioeconomic factors. Parents and children with complex chronic conditions perceive differently the health-related quality of life. Social determinants associate with an uneven perceived quality of life.

Outpatient Follow-up Care After Hospital Discharge of Children With Complex Chronic Conditions at a Rural Tertiary Care Hospital

Objective To determine factors associated with completion of recommended outpatient follow-up visits in children with complex chronic conditions (CCCs) following hospital discharge. Methods We retrospectively identified children aged 1 to 17 years diagnosed with a CCC who were discharged from our rural tertiary care children’s hospital between 2017 and 2018 with a diagnosis meeting published CCC criteria. Patients discharged from the neonatal intensive care unit and patients enrolled in a care coordination program for technology-dependent children were excluded. Results Of 113 eligible patients, 77 (68%) had outpatient follow-up consistent with discharge instructions. Intensive care unit (ICU) admission ( P = .020) and prolonged length of stay ( P = .004) were associated with decreased likelihood of completing recommended follow-up. Conclusions Among children with CCCs who were not already enrolled in a care coordination program, ICU admission was associated with increased risk of not completing recommended outpatient follow-up. This population could be targeted for expanded care coordination efforts.