Publication Review of “Family Caregivers of Children with Medical Complexity: Health-Related Quality of Life and Experiences of Care Coordination”.

Naomi Lorch, Ph.D., P.T.

Article: Yu JA, Henderson C, Cook S, Ray K.  Family caregivers of children with medical complexity: health-related quality of life and experiences of care coordination. Academic Pediatrics; 2020 Nov-Dec;20(8):1116-1123. doi: 10.1016/j.acap.2020.06.014.

This paper examined whether the health-related quality of life (HR-QOL) of family members who care for children with medical complexity is associated with the quality of care coordination experienced by the caregiver.  The authors report that this is not a novel subject to study, but the research method of using surveys is different from previous studies.  Caregivers are likely to experience a variety of stressors that can affect their health and quality of life.  Contributing factors relate to organizing care for the child and providing direct medical care along with concerns about the child’s future and about socioeconomic difficulties.

One hundred thirty-six family caregivers of children with medical complexity, who were scheduled for their first appointment at a complex care clinic in western Pennsylvania between July 2018 and July 2019, participated in the study.  Children were eligible for the clinic if they had at least three chronic medical conditions or if they were dependent on technology (e.g. gastrostomy or ventilator).   A cross-sectional analysis was done with the results of two electronic surveys.  The first was the HR-QOL-14 survey by the Center for Disease Control.  This survey measures both overall physical and mental health days and symptom days (pain, depression, anxiety, and inadequate sleep) during the past 30 days.  The Family Experiences of Care Coordination (FECC) survey evaluates the quality of  care coordination over the past year. (Twelve out of the 20 questions, which related to outpatient coordination, were used.)  The association between care coordination and caregiver quality of life was determined through the use of negative binomial regression.

Results:  Caregiver reports indicated that during the past 30 days, the median number of physically unhealthy days was 2 and of mentally unhealthy days, 3.5.  Symptom days included 2 with feelings of depression, 7 with anxiety, 16 days without sufficient sleep, and 25 days when they did not feel full of energy.  There were fewer mentally unhealthy, anxious, and depressed days for those family caregivers (38 families) with a knowledgeable, supportive care coordinator who advocated for the child.  (Eighty-five out of the 136 families had a care coordinator, but only 44.7 of the coordinators provided this type of support.)  A shared care plan from the main provider (received by only 29.4% of caregivers) led to fewer mentally unhealthy and anxious days.  Caregivers who received an adequate written visit summary experienced fewer nights of insufficient sleep.  (Written summaries were received by 80.9% of caregivers, but only 42.7% of the summaries were reported to have appropriate content.)

Caregivers must remain vigilant to continuously monitor the child’s health.  They also need to determine whether medical decisions are based on accurate information about the child.  Anxiety and fatigue can interfere with adequate concentration on these tasks.

Limitations:  The study was cross-sectional and included a small number of participants.  It did not determine the direction of the association between quality of life and care coordination.  (It could be that a higher quality of life of the caregiver led to better ability to find appropriate care coordination.)  Results of the study may have been different if a more diverse population had been studied.  The study population was 85.3% white, all spoke English, and most of the participants were females.  Different periods of time  were assessed by the two survey instruments.  HR-QOL was measured over the past 30 days and care coordination over the past 12 months.

Comments:  This study has important implications for individuals from multiple disciplines involved in the care of children with medical complexity.   High quality care coordination can make a meaningful difference in the caregiver’s quality of life and that of the child.  Individuals providing care coordination need to know how important the quality of their services is for caregivers.  Finding and supporting a care coordinator who is competent, caring, and motivated can make a difference!  Shared care plans and adequate written visit summaries need to be provided whenever possible.  It is surprising how so many caregivers cope while they are experiencing anxiety, depression, inadequate sleep, and limited energy.  Are their efforts receiving adequate recognition?   Is there any way that more assistance can be provided for them?  All individuals who work with a child with medical complexity can provide support for the family and child and can work with the care coordinator.  Time for adequate communication, listening, and addressing of the family’s concerns is of vital importance for the medical care of the child and the quality of life of the entire family.  It is recommended that all who care about the welfare of the patients we treat and of their families consider how to integrate the findings of this study into daily practice.