A family-centric pediatric advance care planning intervention (FACE-TC) for teens with cancer had significantly positive effects on family perceptions of caregiving for their children with cancer and supported clinician-family discussions on this topic, according to results of a study published in Pediatrics.
Maureen E. Lyon, PhD, Center for Translational Research, Children’s National Hospital, and George Washington University, Washington, DC, and fellow researchers detailed the reason for the study.
“Little is known about how families respond to pediatric advance care abstract planning. Physicians are concerned that initiating pediatric advance care planning conversations with families is too distressing for families. We examined the effect of family centered pediatric advance care planning intervention for teens with cancer (FACE-TC) advance care planning on families’ appraisals of their caregiving, distress, and strain,” they wrote.
The FACE model of advance care planning—recognized by the National Cancer Institute—is an evidence-based, family centered intervention designed to help families and their adolescents and young adults with cancer engage in discussions about the goals of their cancer care and complete advance directives.
“In a pilot trial, researchers tested FACE with [adolescents and young adults] AYAs living with cancer, as well as a full trial with AYAs living with HIV, and demonstrated that conversations between families and their AYAs, although sad, were worthwhile and, for families’ of AYAs with HIV, decreased anxiety compared with controls. Yet, fear of distressing already burdened families continues to be a barrier to clinicians initiating [pediatric advance care planning] conversations,” wrote Lyon and colleagues.
In this multicenter, randomized controlled trial, they included dyads from 126 families of 126 adolescents and young adults randomized to an intervention of either three weekly sessions of FACE-TC or usual treatment. Only the family member, rather than the patient, was included in the study. Each completed eight visits over two years.
The mean age of the adolescents and young adults with cancer was 17 years, 57% were girls, and 79% were White. The majority of included family members were women (83%) and White (82%), with a mean age of 46 years. Over 50% had household incomes that were more than 200% of the Federal Poverty Level, and 58% had less than a college education.
At three months post-intervention, significantly increased positive caregiving appraisals were gathered from family members who underwent the FACE-TC intervention compared with those from the control group (β=0.19; 95% CI: 0.02-0.36; P=0.03).
Caregiver strain was positively associated with their child being on active treatment (β=0.47; 95% CI: 0.16 to 0.78; P=0.003). White families had less distress than families of color (β=−0.47; 95% CI: −0.9 to 0.04; P=0.03).
Lyon and colleagues found no significant associations between family member age, sex, and household income with caregiver appraisals.
They also found no between-group differences for strain (β=−0.14; 95% CI: −0.42 to 0.15; P=0.35) or distress (β=−0.01; 95% CI: −0.35 to 0.32; P=0.93), or family well-being (β=0.16; 95% CI: −0.07 to 0.38; P=0.17).
Upon performing linear regression controlled for age, sex, race, income, and active treatment of the young patient, researchers found that the intervention had a significant effect on families’ positive satisfaction with participation, compared with the control group (β=3.19; 95% CI: 1.74 to 4.63; P˂0.001), but no effects on emotional reactions (β=−0.80; 95% CI: −2.41 to 0.82; P=0.33).
Families with household incomes that fell below the Federal Poverty Level had more positive caregiving appraisals in both study arms, but persons of color were significantly more likely to experience caregiver distress.
“The finding may be associated with health disparities or other inequities and is consistent with evidence that racial and/or ethnic minority children and adolescents have a higher risk of death from treatment amenable cancer,” noted Lyon and fellow researchers.
They concluded: “In the largest and most scientifically rigorous intervention trial to date of [adolescents and young adults pediatric advance care planning] in cancer, families’ positive caregiving appraisals were significantly greater for FACE-TC families, compared with those in the control group. Although the effect size was small, the results from the satisfaction questionnaire confirm a positive outcome for FACE-TC families who, compared with those in the control group, overwhelmingly reported the experience as worthwhile, useful, and helpful, although strong feelings were elicited.”
These researchers added that they plan a future survey of clinicians whose patients participated in their trial.
In an accompanying editorial, Khaliah A. Johnson, MD, FAAP, of Pediatric Palliative Care, Children’s Healthcare of Atlanta and Grady Medical Center, and Department of Pediatrics, Emory University, Atlanta, Georgia, outlined the history of advance care planning.
“Advance care planning emerged as a medical practice and legal entity in the late 1960s, as more concerted efforts were made to address and document the wishes of individuals with life-threatening illness as they approached the end of life. The value of advance care planning has been well described in patients with a variety of serious illness, with evidence demonstrating that engaging in such conversations can lead to a greater sense of empowerment in patients, improve their quality of life, and potentially decrease their worries about the future,” she wrote.
Nevertheless, continued Johnson, clinicians often fail to address advance care planning with these patients and their families “either because of the lack of a structured approach to these discussions, concern for the emotions the discussions will stir in patients and families, or both.”
Johnson concluded: “The work by [Lyon] et al reminds us that as we become less afraid to engage in difficult conversations with our patients using well-validated approaches, we justly uphold our oath to strive for beneficence and avoid maleficence. Interventions like FACE-TC may help us to understand our patients better despite their background and life experience, strengthening the patient-clinician connection and the quality of care we provide.”
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Families randomly assigned to the FACE-TC pediatric advance care planning intervention had significantly more positive appraisal of caregiving and found the experience worthwhile, without undue distress or strain, compared with those in the control group.
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Researchers recommend clinicians have these conversations with families and young patients, despite their possible discomfort in doing so.
Liz Meszaros, Deputy Managing Editor, BreakingMED™
This study was funded by the United States National Institute of Nursing Research National Institutes of Health, and was facilitated by the services and resources provided by the National Institutes of Health National Center for Advancing Translational Sciences to Children’s National.
Lyon is receiving grant support from the American Cancer Society outside the submitted work to translate and adapt family centered pediatric advance care planning for teens with cancer for Spanish speaking adolescents and their families.
Johnson reported no conflicts of interest.
Cat ID: 138
Topic ID: 85,138,728,791,730,138,192,925
