Available online 6 December 2023

Author links open overlay panel, , AbstractObjective

Examine the longitudinal association between family experiences of care coordination (FECC) and health-related quality of life (HR-QOL) for family caregivers of children with medical complexity (CMC).

Methods

Longitudinal survey of family caregivers of CMC between July 2018 and June 2020. Baseline data collected at initial contact with a regional complex care center; follow-up data 12-16 months later. Assessed receipt of care coordination and caregiver HR-QOL via FECC questionnaire and Center for Disease Control’s HR-QOL-14 measure, respectively. Baseline and follow-up results compared via McNemar’s and Wilcoxon signed-rank tests. Relationships between changes in FECC and changes in HR-QOL examined using multivariable logistic regression.

Results

Of 185 eligible, 136 caregivers enrolled and completed baseline surveys (74%) and 103 (76% initial sample) follow-up surveys. Caregivers reported significant improvements in 8 of 9 FECC measures after one year of care within a complex care center (all p<0.05). In contrast, caregiver HR-QOL (general health status, unhealthy days, symptom days) remained stable over the study period (all p>0.05) except for monthly days of poor sleep (baseline vs. follow-up median; 16 vs. 15 [p=0.05]). At both timepoints, >20% participants rated their general health status as fair-to-poor and >50% reported frequent poor sleep and fatigue. No significant associations observed between changes in FECC and changes in HR-QOL.

Conclusions

After receiving one year of care through a complex care center, CMC family caregivers report improvement in care coordination but not in HR-QOL. Caregivers’ continued mentally unhealthy days and negative mental symptom days highlight the need for a directed intervention.

WHAT’S NEW

Following the first year of enrollment in a complex care center, caregivers of children with medical complexity report improved experiences of care coordination but no changes in caregiver health-related quality of life.

Section snippetsINTRODUCTION

Children with medical complexity (CMC) have chronic and severe health conditions, major functional limitations, and significant health service needs. As a result, they have high health care utilization1 along with high rates of morbidity and mortality.2, 3 CMC typically receive the majority of their care from their family members, who provide direct medical care and arrange for care logistics in the setting of an uncertain prognosis and often with limited social or financial supports.4, 5

Study Design & Participants

This is a prospective cohort study examining the relationship between HR-QOL and experiences of care coordination among family caregivers of CMC. Between July 2018 and June 2019, we recruited family caregivers of CMC at the appointment during which they first established their child’s care at our academic pediatric institution’s complex care center. The complex care center at our institution (a quaternary pediatric hospital) was established in 2017 and is the only recognized patient-centered

Child and Caregiver Characteristics

Of the 205 caregivers presenting with their child as a new complex care center patient between July 2018 and June 2019, 185 were eligible for enrollment. Of those eligible, 136 enrolled and completed baseline survey instruments (74%), as discussed previously.9 Of those 136 caregivers, 103 completed follow-up surveys at least one-year following complex care center enrollment (76%). Of the 33 participants not completing follow-up surveys, 17 (51%) had not continued their child’s medical care at

DISCUSSION

In this longitudinal study of CMC family caregivers from before to one year after establishing their child’s care at a regional complex care center, we found that caregivers’ experiences of care coordination significantly improved. Over the same time period, however, the HR-QOL of our overall caregiver sample did not significantly change. Notably, we observed no significant associations between changes in care coordination experiences and improvements in caregiver HR-QOL, nor did we find any

Conclusion

Following one year of enrollment in a pediatric complex care center, family caregivers of CMC reported improved experiences of care coordination but no significant changes in HR-QOL overall or specifically among those experiencing improved care coordination. Despite improved care coordination for their child, family caregivers of CMC continue to report experiencing mentally unhealthy days and negative mental symptom days on par with elderly adults with chronic health conditions. Psychosocial

CONFLICTS OF INTEREST

The authors have no conflicts of interest to disclose.

FUNDING

Research reported in this publication was supported by the Health Resources and Services Administration (HRSA) under the National Research Service Award (NRSA) for Primary Care Research Award T32 HP22240 (KWH), National Palliative Care Research Center’s Kornfeld Scholars Program, and National Center for Advancing Translational Sciences (KL2TR001856). The content is solely the responsibility of the authors and does not necessarily represent the official views of HRSA or the institutions with

Declaration of Competing Interest

None

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© 2023 Published by Elsevier Inc. on behalf of Academic Pediatric Association