Transition of children with life-limiting conditions to adult care and healthcare use: a systematic review
child; life-limiting condition; systematic review; Transition to adult care
Background: Improved survival has led to increasing numbers of children with life-limiting conditions transitioning to adult healthcare services. There are concerns that transition may lead to a reduction in care quality and increases in emergency care. This review explores evidence for differences in health or social care use post- versus pre-transition to adult services.
Jarvis SW; Roberts D; Flemming K; Richardson G; Fraser LK
Pediatric Research
1120
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/10.1038/s41390-021-01396-8" target="_blank" rel="noreferrer noopener">10.1038/s41390-021-01396-8</a>
Transition of children with life-limiting conditions to adult care and healthcare use: a systematic review
children; health care utilization; life-limiting conditions; Transition to adult care
Background: Improved survival has led to increasing numbers of children with life-limiting conditions transitioning to adult healthcare services. There are concerns that transition may lead to a reduction in care quality and increases in emergency care. This review explores evidence for differences in health or social care use post- versus pre-transition to adult services. Method(s): MEDLINE, EMBASE, CINAHL, PsychINFO and Social Science Citation Index were searched. Studies published in English since 1990 including individuals with any life-limiting condition post- and pre-transition and reporting a health or social care use outcome were included. Data were extracted and quality assessed by one reviewer with 30% checked by an independent reviewer. Result(s): Nineteen papers (18 studies) met the inclusion criteria. There was evidence for both increases and decreases (post- versus pre-transition) in outpatient attendance, inpatient admissions, inpatient bed days and health service costs; for increases in Emergency Department visits and for decreases in individuals receiving physiotherapy. Conclusion(s): Evidence for changes in healthcare use post- versus pre-transition is mixed and conflicting, although there is evidence for an increase in Emergency Department visits and a reduction in access to physiotherapy. More high-quality research is needed to better link changes in care to the transition. Impact: Evidence for changes in healthcare use associated with transition to adult services is conflicting.Emergency Department visits increase and access to physiotherapy decreases at transition.There are marked differences between care patterns in the United States and Canada. Copyright © 2021, The Author(s).
Jarvis SW; Roberts D; Flemming K; Richardson G; Fraser LK
Pediatric 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/10.1038/s41390-021-01396-8" target="_blank" rel="noreferrer noopener">10.1038/s41390-021-01396-8</a>
Measuring Quality of Dying, Death and End-Of-Life Care for Children and Young People: A Scoping Review of Available Tools
Hospice Care; Terminal Care; Adolescent; Child; Humans; Palliative Care; Quality of Life; Reproducibility of Results; Adolescent; Palliative Care; Quality of Death; Quality of Dying; Review; Terminal Care; Tools
BACKGROUND: The circumstances and care provided at the end of a child's life have a profound impact on family members. Although assessing experiences and outcomes during this time is challenging, healthcare professionals have a responsibility to ensure high quality of care is provided. AIM: To identify available tools which measure the quality of dying, death and end-of-life care for children and young people; describe the content, and data on validity and reliability of existing tools. DESIGN: Scoping review was conducted following the Arksey and O'Malley methodological framework. DATA SOURCES: Four electronic databases (MEDLINE, EMBASE, CINAHL and PsycINFO) and grey literature were searched for studies published in English (January 2000-June 2021). A review of reference lists and citation searching was also undertaken. Tools needed to include a focus on the 'dying' phase of illness (defined as the last month of life). RESULTS: From 2078 articles, a total of 18 studies, reporting on 11 tools were identified. All tools were completed by primary caregivers or healthcare professionals as 'proxy' assessments; all except one was undertaken after death. Question items about quality of life and preparation for death were found in all tools; items relating to cultural aspects of care, grief and financial costs were less common. Only 6/11 had undergone psychometric testing within a paediatric palliative care setting. CONCLUSIONS: Future research should include ways to adapt, refine and improve existing tools. Assessing their wider application in different clinical and cultural settings and conducting further psychometric assessment represent areas of focus.
Mayland CR; Sunderland KA; Cooper M; Taylor P; Powell PA; Zeigler L; Cox V; Gilman C; Turner N; Flemming K; Fraser LK
Palliative Medicine
2022
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/10.1177/02692163221105599" target="_blank" rel="noreferrer noopener">10.1177/02692163221105599</a>
Adult healthcare is associated with more emergency healthcare for young people with life-limiting conditions
Adolescent; Adult; Children; Cohort analysis; Diabetes mellitus; Hospital care; Retrospective studies
Background: Children with life-limiting conditions receive specialist paediatric care in childhood, but the transition to adult care during adolescence. There are concerns about transition, including a lack of continuity in care and that it may lead to increases in emergency hospital visits. Method(s): A retrospective cohort was constructed from routinely collected primary and hospital care records for young people aged 12-23 years in England with (i) life-limiting conditions, (ii) diabetes or (iii) no long-term conditions. Transition point was estimated from the data and emergency inpatient admissions and Emergency Department visits per person-year compared for paediatric and adult care using random intercept Poisson regressions. Result(s): Young people with life-limiting conditions had 29% (95% CI: 14-46%) more emergency inpatient admissions and 24% (95% CI: 12-38%) more Emergency Department visits in adult care than in paediatric care. There were no significant differences associated with the transition for young people in the diabetes or no long-term conditions groups. Conclusion(s): The transition from paediatric to adult healthcare is associated with an increase in emergency hospital visits for young people with life-limiting conditions, but not for young people with diabetes or no long-term conditions. There may be scope to improve the transition for young people with life-limiting conditions. Impact: There is evidence for increases in emergency hospital visits when young people with life-limiting conditions transition to adult healthcare.These changes are not observed for comparator groups - young people with diabetes and young people with no known long-term conditions, suggesting they are not due to other transitions happening at similar ages.Greater sensitivity to changes at transition is achieved through estimation of the transition point from the data, reducing misclassification bias. Copyright © 2022, The Author(s).
Jarvis S; Flemming K; Richardson G; Fraser L
Pediatric Research
2022
<a href="http://doi.org/10.1038/s41390-022-01975-3" target="_blank" rel="noreferrer noopener">10.1038/s41390-022-01975-3</a>