Central Family Research Articles

Advance Care Planning for Children With Rare Diseases: A Pilot RCT.

Pediatric rare diseases are often life-limiting conditions and/or require constant caregiving. Investigators assessed the initial efficacy of the FAmily CEntered (FACE) pediatric advance care planning (pACP), FACE-Rare, intervention on families' quality of life. A pilot-phase, single-blinded, intent-to-treat, randomized controlled clinical trial enrolled families from 1 pediatric quaternary hospital between 2021 and 2023. Intervention families received 3 weekly 60-minute (FACE-Rare pACP) sessions: (1) Carer Support Needs Assessment Tool or Action Plan, (2) Carer Support Needs Assessment Tol Action Plan Review, and (3) Pediatric Next Steps: Respecting Choices pACP. Controls received treatment as usual (TAU). Outcome measures were Beck Anxiety Inventory, Family Appraisal of Caregiving, Functional Assessment of Chronic Illness Therapy (FACIT)-Spirituality, and health care utilization. Generalized mixed effect models with γ response assessed the intervention effect at 3-month follow-up. Children (n = 21) were aged 1 to 10 years, 48% male, 24% Black; and 100% technology dependent. Primary family caregivers (n = 21) were aged 30 to 43 years, 19% male, 19% Black; and 27% household income below the Federal poverty level. Dyads underwent 1:1 randomization: 9 to FACE-Rare and 12 to TAU. TAU caregivers reported statistically lower meaning and peace than FACE-Rare caregivers (0.9, P = .03, confidence interval [CI]: 0.75-0.99). Black caregivers reported significantly less caregiver distress (0.7, P = .04, CI: 0.47-0.98) than non-Black caregivers. Poor families reported more anxiety (3.5, P = .002, CI: 1.62-7.94), more caregiver strain (1.2, P = .006, CI: 1.07-1.42); and less family well-being (0.8, P = .02, CI: 0.64-0.95). FACE®-Rare was feasible, acceptable, safe, and demonstrated initial efficacy, providing greater feelings of meaning and peace to caregivers. Poverty impacted well-being. A multisite trial is needed to determine generalizability.

Utilizing the Newest Vital Sign (NVS) to Assess Health Literacy at a Regional Academic Medical Center's Family Medicine Clinic

Researchers examined the correlation between the physician's subjective assessment of health literacy rates and actual health literacy rates among patients as determined by the Newest Vital Sign (NVS). A sample of n = 150 patients, 18 years of age or older, were verbally interviewed using NVS tool before seeing their physician. After the physician met with the patient, the physician was asked to measure that patient's level of health literacy on a Likert-type scale and a “yes/no” scale. Frequency and percentage statistics were performed in SPSS to describe the distributions of patient and physician responses. Between-subjects statistics were used. Analysis of the patient surveys revealed one in 4 patients has a high likelihood of low health literacy. Analysis revealed there were significant positive correlations between physician response to perception of a patient's low health literacy risk and NVS survey responses. Despite the risk of limited literacy, 97.3% of physicians perceived the patient to understand what the physician was saying. Physicians should use teach-back and other health literacy principles with each patient, regardless of perceived risk.

Family-Centered Advance Care Planning: What Matters Most for Parents of Children with Rare Diseases.

Few studies have described the goals and wishes of parents caring for their children with rare diseases, specifically when children are unable to communicate their preferences directly. The purpose of this study was to describe the parent’s understanding of their child’s illness, goals of care, and what mattered most to their child from the parent’s perspective. Six families completed a feasibility study of the FAmily CEntered (FACE)-Rare pACP intervention. Qualitative content analysis was performed on transcripts of videotaped responses to the Respecting Choices Next Steps pACP Conversation facilitated conversation guide about the goals of care. Codes were grouped into themes, with direct participant quotations representing the themes. Five themes emerged: getting out and moving freely; feeling included and engaged; managing symptoms and disease burden; coordinating care among many care team members; and managing today and planning for the future. In the context of pACP, families reported that what mattered most to their children included the freedom of movement and human connection and engagement, while parents strived to be effective caregivers and advocates for their child with a rare and severely disabling disease.

Clinical Effect of an Improved Post-Operative Feeding Protocol “in Transition” Infants of Congenital Heart Disease with Pulmonary Hypertension

Background: To achieve successful management of infants with congenital heart disease (CHD) together with pulmonary hypertension (PH), postoperative care, especially feeding care is vital in addition to surgery. Postoperative feeding is comprised of three stages: feeding in the intensive care unit, feeding in the general ward and family feeding, in which the general ward is considered as the “transitional stage”. At present, there is little research on the optimal mode of feeding care for the transitional stage, and there is no universally recognized and accepted protocol. Methods: We retrospectively analyzed 114 CHD infants with PH who underwent family-centered (FC) feeding care from July 2017 to December 2018, and prospectively studied 122 CHD infants with the same baseline level who adopted the improved mode, nurse-parent-driven (NPD) feeding mode from January 2019 to June 2020. The feasibility and efficacy of NPD as a “transitional” feeding nursing mode in CHD infants with PH were compared with the FC cohort by observing and analyzing the stress of family caregivers, feeding-related complications, the proportion of breastfeeding, improvement of nutritional status, acquisition of knowledge and skills of feeding care, inpatient’s satisfaction rating and prognosis. Results: When compared with the FC feeding care, the NPD mode significantly reduced the burden of family caregivers, improved the rate of feeding care knowledge and skills and inpatient’s satisfaction rating, reduced the incidence of improper feeding-related complications, and enhanced the proportion of breastfeeding and nutritional status of infants at the “transitional stage” (all P < 0.05). The self-assessment score of care ability of family caregivers and weight gain of children in the NPD group were significantly higher than those in the FC group (all P < 0.05) during the follow-up. Conclusions: As a transitional mode of feeding in CHD infants with PH, NPD feeding care is superior to the conventional FC mode, which therefore can be adopted as a standard protocol in clinical practice.

The effect of family-centered empowerment model and participatory care model on quality of life in children with thalassemia major: A quasi-experimental study

Purpose: This aimed to compare the effect of family-centered (FC) empowerment model and participatory care model on quality of life (QoL) in children with thalassemia major. Methods: This quasi-experimental pre- post-test study was conducted on three groups, including the FC empowerment, the participatory care model and control. The study samples consisted of thalassemia children who met the inclusion criteria. The samples were randomly divided into three by lot. Data was collected using a demographic questionnaire and the Pediatric Quality of Life Inventory. The control group received routine care only. The intervention program was implemented for four sessions of 45 minutes during two weeks (two sessions per week) in the conference hall of the hospital. The data were analyzed analysis of covariance with the Bonferroni post hoc test. The significance level was set at < 0.05. Results: A significant difference in the means of physical (p=0.002), social (P<0.001), and educational (p = 0.001) dimensions among FC, participatory model, or control group. However, there was no significant difference in the means of emotional dimension among the study groups (p=0.316). Conclusions: The FC empowerment model was not superior to the participatory care model except in the educational dimension of the QoL of children with thalassemia.

The role of religiousness and spirituality in health-related quality of life of persons living with HIV: A latent class analysis.

Understanding how religion and spirituality influence health-related quality of life (HRQoL) is important for developing holistic, patient-centered treatment. This study determined distinct latent classes of religiousness/spirituality for adult persons living with HIV (PLWH) and associations between latent class membership and HRQoL. Baseline data was collected from 223 patients in the FAmily CEntered (FACE) Advance Care Planning (ACP) clinical trial for PLWH. Patients completed the Brief Multidimensional Measurement of Religiousness/Spirituality (BMMRS-adapted), Patient Health Questionnaire (PHQ-9), Medical Outcome Study-HIV Survey (MOS-HIV) and the Palliative care Outcome Scale (POS). The optimal number of latent classes was determined by comparing K-Class model with (K-1)-Class model iteratively. The relationship between latent class membership, HRQoL and demographic characteristics was assessed. Patients were 56.1% male, 86.1% Black/African American, aged 22-77 (Mean=50.83). 75.3% were Christian. LCA identified three classes: traditionally religious (35%), privately religious (47.1%), and spiritual but not religious (17.9%). MOS-HIV mental health (p < 0.001), MOS-HIV quality of life (p = 0.014) and MOS-HIV health transition (p = 0.016) scores were significantly higher among patients who were traditionally religious. These patients were more likely to be 40+ years and Black. Patients in the privately religious group had the lowest levels of mental health and HRQoL. Understanding how religiousness and spirituality influence HRQoL can help the medical community develop holistic, patient-centered and culturally-sensitive interventions that could improve outcomes for PLWH and potentially mitigate the impact of health disparities within the Black and LGBTQ communities.

Shared spiritual beliefs between adolescents with cancer and their families.

FAmily CEntered (FACE) Advance Care Planning helps family decision makers to understand and honor patients' preferences for future health care, if patients cannot communicate. Spiritual well-being is a key domain of pediatric oncology care and an integral dimension of pediatric advance care planning. As part of four-site randomized controlled trial of FACE for teens with cancer, the functional assessment of chronic illness therapy-spiritual well-being- version 4 (FACIT-Sp-EX-4) was completed independently by 126 adolescents with cancer/family dyads. The prevalence-adjusted and bias-adjusted kappa (PABAK) measured congruence on FACIT-Sp-EX-4. Adolescents (126) had mean age of 16.9years, were 57% female and 79% White. Religious/spiritual classifications were: Catholic (n=18), Protestant (n=76), Mormon (n=3), none/atheist (n=22), other (n=5), and unknown (n=2). Agreement at item level between spiritual well-being of adolescents and families was assessed. Three items had ≥90% agreement and Excellent PABAK: "I have a reason for living," "I feel loved," "I feel compassion for others in the difficulties they are facing." Three items had <61% agreement and Poor PABAK: "I feel a sense of harmony within myself," "My illness has strengthened my faith or spiritual beliefs," "I feel connected to a higher power (or God)." Dyadic congruence was compared by social-demographics using median one-way analysis. Male family members (median=72%) were less likely to share spiritual beliefs with their adolescent than female family members (median=83%), P=.0194. Family members may not share spiritual beliefs with adolescents and may be unaware of the importance of spiritual well-being for adolescents.

Is it safe and worthwhile? A multi-site randomized clinical trial of FAmily CEntered (FACE) pediatric advance care planning for adolescents with cancer and their families.

10557 Background: Many clinicians express concern that pediatric ACP (pACP) is too distressful for families. We describe the effect of FAmily CEntered pACP for Teens with Cancer (FACE-TC) on families’ self-reported experience. Methods: A 4-site, intent-to-treat, longitudinal, randomized clinical trial recruited adolescent/family dyads from hospital-based cancer-specialty clinics from 2016-2019. Adolescent/family dyads were screened/assented/consented/enrolled and randomized at a 2:1 ratio to either FACE-TC or Treatment as Usual control. FACE-TC is three weekly, 60-minute sessions with a certified facilitator (ACP survey; Next Steps: Respecting Choices Interview; Five Wishes advance directive). Satisfaction Questionnaire measured 7 positive (useful, helpful, load off my mind, satisfied, something I needed to do, courageous, worthwhile) and 6 emotional reactions (scared, hurtful, harmful, too much to handle, angry, sad). It was administered by a trained/blinded research assistant immediately following the Respecting Choices interview or 3 weeks post-baseline for controls. Results: Family participants were: primarily mothers (75%); mean age 46 years; 83% female; 82% white. Household income was ≤100% Federal poverty level for 26%; 58% had less than a Bachelor’s degree. Attendance was 92% for three FACE sessions. FACE families (N = 116) compared to controls were more likely to report the study was “worthwhile” (97% vs. 86%, 0 = 0.0245); “useful” (97% vs. 83%, p = 0.0102); “helpful” (96% vs. 79%, p = 0.0079); and “something I needed to do” (84% vs. 55%, p = 0.0006). FACE families (Mean 28.1, SD 3.3) reported higher positive subscale scores than control families (Mean 24.9, SD 4.4) (β = 2.98, p = 0.0001). No significant differences were found for age, gender, race, household income, or adolescent on active treatment. There were no differences between FACE or control dyads on the 6 emotional reactions subscale score. Conclusions: Among a geographically, economically diverse families, FACE pACP was safe and worthwhile. Clinicians can be assured that a structured facilitated pACP intervention, although emotionally intense, did not unduly distress families who found the experience overwhelmingly worthwhile. Results fill the gap about how to successfully engage families in pACP with their adolescent child. Clinical trial information: NCT02693665.

Effect of FAmily CEntered (FACE) advance care planning (ACP) on families’ appraisals of caregiving for their teens with cancer.

e22533 Background: Little is known about how well family caregivers respond to participating in pACP. The research objective was to understand the effect of FAmily CEntered pediatric Advance Care Planning (FACE pACP) for teens with cancer (FACE-TC) on families’ appraisals of caregiving for their child over time. Methods: 126 adolescent/family dyads were randomized to either FACE-TC intervention or treatment as usual control. FACE-TC is three weekly, 60-minute pACP sessions with a trained/certified facilitator. Family Appraisal of Caregiving Questionnaire subscales assessed outcomes. Generalized Estimating equations (GEE) model was used to examine outcome change over time. The effect of intervention on the change was examined by the interaction between time and intervention. Results: 126 adolescent/family dyads completed baseline assessments. 102 dyads completed the 3-month assessment. Adolescents were mean age of 17 years (range 14-20); 57% female; 79% Caucasian. Family participants were mean age 46 (range 19-67); 83% female; 82% Caucasian. Positive caregiving appraisals subscale items are “Caring for __ is satisfying; It is a privilege to care for __; Caring for __ has made me feel closer to him/her; I am able to comfort __ when he/she needs it; I feel confident I can handle most problems in caring for __; I feel useful in my relationship with __; I am committed to caring for __”. FACE pACP significantly increased positive caregiving appraisals at 3 months post-intervention, compared to controls, (β = 0.20, Confidence Interval = 0.03-0.37, p = 0.0189). No significant differences were found between groups for the subscales: burden, distress or family well-being. Conclusions: FACE pACP significantly increased positive caregiver appraisals compared to controls. The family caregiver’s role is critical for the well-being of teens with cancer. Findings identified positive aspects of caregiving in the context of pACP without increasing caregiver burden or distress. Clinical trial information: NCT02693665.

“Being healthy and living life as if I never had cancer”: The meaning of “living well” from adolescents with cancer.

e22532 Background: Extensive resources are devoted to discovering novel cancer treatments. Meanwhile, patient priorities and experiences must also be addressed. Specifically, among adolescents with cancer, patients’ definitions of “living well” may elucidate treatment preferences, guide care teams and families, and influence future behavioral interventions. The objective was to develop an empirical definition of “living well” for adolescents with cancer to enhance shared decision-making. Methods: Video recordings were analyzed from the Next Steps: Respecting Choices interviews with n = 30 adolescents ages 14-21 years with cancer and their families, a subsample of N = 126 adolescent/family dyads participating in a randomized clinical trial, FAmily CEntered (FACE) Advance Care Planning. Interviews were transcribed, verified and anonymized. A phenomenological analytic method was used to identify psychological meaning in participants’ statements. Results: Adolescents with cancer conceptualize living well as meaning maintaining physical, mental and emotional health, while engaging in purposeful, typical, adolescent-appropriate activities with people important to the adolescents. This has four components: living mindfully; living an identity as a healthy adolescent; spending time with friends and family; and living a purposeful life without depression. Living well means most often enjoying these activities while spending time with family and friends. An exemplary quotation is, “...being able to have a life where everything is going good, and being able to live healthy...gets rid of some of your worries not only for yourself but for your friends and family...less worries means a less stressful life...” Conclusions: By determining what “living well” means to adolescents with cancer, care teams and families can more easily understand patients’ priorities. A firm grasp on patients’ definitions of “living well” could relieve significant burden from families and increase families’ willingness to honor adolescent treatment preferences. Findings may guide future psychosocial interventions. Clinical trial information: NCT01670461.

Novel Insights into Autism Knowledge and Stigmatizing Attitudes Toward Mental Illness in Dutch Youth and Family Center Physicians

Professionals’ limited knowledge on mental health and their stigmatizing attitudes toward mental illness can delay the diagnosis of autism. We evaluated the knowledge on Autism Spectrum Disorder (ASD) and stigmatizing attitudes in 93 physicians at Dutch Youth and Family Centers (YFC). These physicians screen for psychiatric symptoms in children. We show that their general ASD knowledge scored 7.1 (SD 1.2), but their specific ASD knowledge was only 5.7 (SD 1.7) (weighted means on 1–10 scale, 1 = least knowledge, 10 = most knowledge). Our physicians had positive attitudes toward mental illness (CAMI scores 2.18 (SD 0.33) to 2.22 (SD 0.40) on a 5-point Likert scale) but they had higher levels of stigmatizing attitudes than other Western healthcare professionals. Their levels were considerably lower than in non-Western professionals. We found no relations between ASD knowledge, stigmatizing attitudes and demographic variables. In conclusion, ASD knowledge and stigmatizing attitudes toward mental illness in Dutch YFC physicians require attention.

Effect of FAmily CEntered (FACE) Advance Care Planning (ACP) on Families’ Appraisals of Caregiving for their Teens with Cancer (SA510B)

Effect of FAmily CEntered (FACE) Advance Care Planning (ACP) on Families’ Appraisals of Caregiving for their Teens with Cancer (SA510B)

Longitudinal Impact of FAmily CEntered (FACE) Advance Care Planning (ACP) Communication on Willingness to Limit Treatments among Adults Living with HIV/AIDS: A Randomized Clinical Trial

Longitudinal Impact of FAmily CEntered (FACE) Advance Care Planning (ACP) Communication on Willingness to Limit Treatments among Adults Living with HIV/AIDS: A Randomized Clinical Trial

The Efficacy of FAmily CEntered (FACE) Advance Care Planning on Congruence in End-of-Life Treatment Preferences Between Adults Living with HIV and their Surrogates Over Time

The Efficacy of FAmily CEntered (FACE) Advance Care Planning on Congruence in End-of-Life Treatment Preferences Between Adults Living with HIV and their Surrogates Over Time

FAmily-CEntered (FACE) Advance Care Planning Among African-American and Non-African-American Adults Living With HIV in Washington, DC: A Randomized Controlled Trial to Increase Documentation and Health Equity

ContextNo prospective studies address disease-specific advance care planning (ACP) for adults living with HIV/AIDS. ObjectiveTo examine the efficacy of FAmily-CEntered (FACE) ACP in increasing ACP and advance directive documentation in the medical record. MethodsLongitudinal, two-arm, randomized controlled trial with intent-to-treat design recruited from five hospital-based outpatient HIV clinics in Washington, DC. Adults living with HIV and their surrogate decision-makers (N = 233 dyads) were randomized to either an intensive facilitated two-session FACE ACP (Next Steps: Respecting Choices goals of care conversation and Five Wishes advance directive) or healthy living control (conversations about developmental/relationship history and nutrition). ResultsPatients (n = 223) mean age: 51 years, 56% male, 86% African-American. One hundred ninety-nine dyads participated in the intervention. At baseline, only 13% of patients had an advance directive. Three months after intervention, this increased to 59% for the FACE ACP group versus 17% in the control group (P < 0.0001). Controlling for race, the odds of having an advance directive in the medical record in the FACE ACP group was approximately seven times greater than controls (adjusted odds ratio = 6.58, 95% CI: 3.21–13.51, P < 0.0001). Among African-Americans randomized to FACE, 58% had completed/documented advance directives versus 20% of controls (P < 0.0001). ConclusionsThe FACE ACP intervention significantly improved ACP completion and advance directive documentation in the medical record among both African-American and non-African-American adults living with HIV in Washington, DC, providing health equity in ACP, which can inform best practices.

Quality of life of persons living with HIV and congruence with surrogate decision-makers.

Physicians and caregivers rate patient quality of life (QOL) lower than patients rate their own QOL. This study investigated discrepancies between self-assessments of patient QOL by adults with HIV and their surrogate decision-makers. We collected baseline data from 223 adult dyads in the FAmily-CEntered (FACE) Advance Care Planning (ACP) clinical trial, consisting of HIV positive patients and their chosen surrogates. Participants independently completed the Medical Outcome Study-HIV Survey (MOS-HIV) and the Palliative care Outcome Scale (POS). We used Wilcoxon Signed-Rank Test to assess differences in overall patient-surrogate means. We used Prevalence Adjusted Bias Adjusted Kappa (PABAK) statistics to assess dyadic agreement, with surrogate HIV status and cohabitation status as grouping variables. Patients were 56.1% male, 86.1% Black/African-American, aged 22-77 (mean = 50.83, SD = ± 12.33). Surrogates were 43.8% male, 84.1% Black/African-American, aged 18-82 (mean = 49.73, SD = ± 14.22). 46.2% of surrogates lived with the patient. 64.6% of surrogates reported negative HIV status. Surrogates were more likely to state patients were ill, p = 0.032. Among patient-surrogate dyads, most QOL assessments showed poor (0.00-0.39) or fair (0.40-0.59) agreement and agreement tended to be even poorer among patient-surrogate dyads where the surrogate had a shared HIV diagnosis. QOL discrepancies are said to arise from healthy surrogates overestimating the effects of chronic illness. In this novel assessment, many surrogates had a shared HIV diagnosis, without increased agreement. These findings highlight the challenge of accurately assessing patient QOL by surrogates, even when there is a shared HIV diagnosis. Improved communication is needed between patients and surrogates about the patients' representation of illness. National Clinical Trial Number: NCT01775436.

Strengthening Family Counseling Services at Healthy Family Support Centers for Families in Crisis

Strengthening Family Counseling Services at Healthy Family Support Centers for Families in Crisis

FAmily CEntered (FACE) advance care planning: Study design and methods for a patient-centered communication and decision-making intervention for patients with HIV/AIDS and their surrogate decision-makers

Although the human immunodeficiency virus/acquired immunodeficiency syndrome (HIV/AIDS) has become a chronic illness, disease-specific advance care planning has not yet been evaluated for the palliative care needs of adults with HIV/AIDS. This prospective, longitudinal, randomized, two-arm controlled clinical trial aims to test the efficacy of FAmily CEntered advance care planning among adults living with AIDS and/or HIV with co-morbidities on congruence in treatment preferences, healthcare utilization, and quality of life. The FAmily CEntered intervention arm is two face-to-face sessions with a trained, certified facilitator: Session 1) Disease-Specific Advance Care Planning Respecting Choices Interview; Session 2) Completion of advance directive. The Healthy Living Control arm is: Session 1) Developmental/Relationship History; Session 2) Nutrition. Follow-up data will be collected at 3, 6, 12, and 18 months post-intervention. A total of 288 patient/surrogate dyads will be enrolled from five hospital-based, out-patient clinics in Washington, District of Columbia. Participants will be HIV positive and ≥21years of age; surrogates will be ≥18years of age. Exclusion criteria are homicidality, suicidality, psychosis, and impaired cognitive functioning. We hypothesize that this intervention will enhance patient-centered communication with a surrogate decision-maker about end of life treatment preferences over time, enhance patient quality of life and decrease health care utilization. We further hypothesize that this intervention will decrease health disparities for Blacks in completion of advance directives. If proposed aims are achieved, the benefits of palliative care, particularly increased treatment preferences about end-of-life care and enhanced quality of life, will be extended to people living with AIDS.

How Are You Feeling? Assessing the Agreement between HIV+ Adolescents' Reports of Quality of Life with Their Families'

To examine the effect of an intervention on QOL improvement and agreement between adolescents and family ratings. Data were collected from the FAmily CEntered (FACE) Advance Care Planning randomized clinical trial between July 2011 and August 2013. Eligibility criteria were HIV positive, knew diagnosis, and a consenting family member. Participants were recruited from hospital-based outpatient adolescent clinics at three urban sites. Adolescent/family dyads were randomized into either the FACE intervention or the Healthy Living Control (HLC). We analyzed adolescent self-report (n = 72) and family (n = 72) self-report of perception of child's QOL, using the Peds Quality of Life Inventory™4.0 (PedsQoL) at Baseline and 3-month post intervention. Four domains – Physical, Emotional, Social, and School, as well as Total Score were assessed. Higher scores equal higher QOL. 144 participants (n = 72 adolescent/family dyads) were enrolled. Adolescents' mean age was 18 years; 43% female; 94.4% Black/African American; 70.8% perinatally infected. Family participant's mean age was 44 years (range 20 – 77). Randomization was successful. The intervention did not statistically significantly increase QOL among Control vs. FACE adolescents in a 3-month observation period (Total Score--Control = 82.1 vs. FACE = 77.9; Physical--84.6 vs. 84.1; Emotional--78.0 vs. 69.8; Social--94.3 vs. 86.9; School--69.8 vs. 66.1). However, agreement between adolescents' and family's ratings increased from Baseline to 3-month follow-up in two domains for FACE adolescents: 1.Emotional QOL Congruence increased from 0.21 to 0.61 (ICC Difference = 0.41) for FACE dyads vs. decrease in congruence for HLC dyads from 0.49 to 0.41 [Interclass Correlation Coefficients (ICC) difference -0.09]. 2. Social QOL Congruence increased from 0.41 to 0.62 (ICC Difference = 0.21) for FACE dyads with a comparable increase for HLC dyads from -0.02 to 0.2 (ICC Difference = 0.22). Physical QOL Congruence increased slightly for both FACE dyads from 0.4 to 0.43 (ICC Difference = 0.03) and HLC dyads from 0.5 to 0.59 (ICC Difference = 0.09). School QOL Congruence decreased for FACE dyads from 0.51 to 0.08 (-0.43 ICC Difference) and increased from 0.66 to 0.82 for HLC dyads (0.16 ICC Difference). At baseline perinatally infected adolescents vs. behaviorally infected adolescents reported significantly higher QOL in two domains: Emotional (= 84.4 vs. = 73.3; p = 0.041) and Physical (= 91.0 vs. = 84.5, p = 0.058), otherwise there were no significant differences between them. Understanding adolescents' QOL may influence family decision-making with respect to future healthcare utilization and end-of-life care. The FACE intervention increased communication in all domains, but School QOL, where adolescents denied problems and families reported problems. Higher Physical and Emotional QOL among perinatally infected adolescents was unexpected. This might represent a measure of their access to medical and mental health care from birth in comprehensive “one-stop” hospital-based clinics.

Longitudinal Pediatric Palliative Care: Quality of Life & Spiritual Struggle (FACE): Design and methods

As life expectancy increases for adolescents ever diagnosed with AIDS due to treatment advances, the optimum timing of advance care planning is unclear. Left unprepared for end-of-life (EOL) decisions, families may encounter miscommunication and disagreements, resulting in families being charged with neglect, court battles and even legislative intervention. Advanced care planning (ACP) is a valuable tool rarely used with adolescents. The Longitudinal Pediatric Palliative Care: Quality of Life & Spiritual Struggle study is a two-arm, randomized controlled trial assessing the effectiveness of a disease specific FAmily CEntered (FACE) advanced care planning intervention model among adolescents diagnosed with AIDS, aimed at relieving psychological, spiritual, and physical suffering, while maximizing quality of life through facilitated conversations about ACP. Participants will include 130 eligible dyads (adolescent and family decision-maker) from four urban cities in the United States, randomized to either the FACE intervention or a Healthy Living Control. Three 60-minute sessions will be conducted at weekly intervals. The dyads will be assessed at baseline as well as 3-, 6-, 12-, and 18-month post-intervention. The primary outcome measures will be in congruence with EOL treatment preferences, decisional conflict, and quality of communication. The mediating and moderating effects of threat appraisal, HAART adherence, and spiritual struggle on the relationships among FACE and quality of life and hospitalization/dialysis use will also be assessed. This study will be the first longitudinal study of an AIDS-specific model of ACP with adolescents. If successful, this intervention could quickly translate into clinical practice.