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Advance Care Planning Among Adolescent Patients With HIV Lowers Symptoms, Suffering


Family-centered pediatric advance care planning increased and maintained agreement about goals of care longitudinally, which lowered adolescents’ physical symptoms and suffering.

Adolescents living with HIV face mortality rates higher than the general United States population. A recent study aimed to determine the effect of family-centered pediatric advance care planning on HIV-specific symptoms and found that the care planning increased and maintained agreement about goals of care longitudinally, which lowered adolescents’ physical symptoms and suffering.

The study was conducted at 6 US hospital-based HIV clinics with 105 adolescent-family dyads from July 2011 to June 2014. The participants were randomly assigned to receive 3 weekly sessions in either the family-centered pediatric advance care planning arm or the control arm.

Those in the care planning cohort answered a survey to set the stage for end-of-life conversations; discussed fears, values, spiritual and other beliefs, and goals with regard to death and dying; and decided which person the patient wanted to make healthcare decisions for him or her and the kind of medical treatment they wanted.

“Family-centered pediatric advance care planning protocol is grounded in transactional stress and coping theory, whereby problem solving provides some control in low-control situations. Evidence supports the effects of problem-focused coping on survival among adult patients with cancer,” the authors explained. “Perceived control is associated with decreased pain and buffered mortality risk. Social support is associated with HIV-related symptom reduction and decreased mortality risk.”

Controls documented developmental history, went through safety tips, and received counseling on exercise and nutrition. The patients and their families independently completed questionnaires at 3, 6, 12, and 18 months postintervention.

The average age of patients was 17.8, 54% were male, and 93% were African American. A latent class analysis identified 2 latent HIV-symptom classes at 12 months, with 27% reporting higher symptoms and suffering and 73% having lower symptoms and suffering.

Specifically, the family-centered pediatric advance care planning cohort had a positive effect on dyadic treatment congruence and higher treatment congruence had a negative effect on the symptoms and suffering, according to the results. This demonstrated that the advance care planning decreased the likelihood of symptoms and suffering through better dyadic treatment congruence.

“Family-centered pediatric advance care planning successfully decreased symptom burden, a goal of patient-centered care. This model is responsive to calls for culturally sensitive interventions, a beneficial approach that effectively provided access to and provision of pediatric advance care planning to underserved racial and ethnic groups,” the authors concluded. “Study results provide an evidence base for effective pediatric advance care planning in pediatric, hospital-based HIV clinics to achieve quality improvement and to support policy recommendations to implement pediatric advance care planning as an individualized and structured part of care for interested families.”

The researchers suggested that these findings could help inform individuals and help create future interventions for young people with other illnesses.

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