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

BACKGROUND AND OBJECTIVE: 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. METHODS: 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. RESULTS: 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). CONCLUSIONS: 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.

Examining the Cultural Appropriateness of Advance Care Planning Tools for Adolescents and Young Adults With Cancer: An Example of Cross-Cultural Adaptation of the Voicing My CHOiCES Tool.

Advance care planning (ACP) is crucial in supporting optimal, patient-centered care for adolescents and young adults (AYAs) with life-limiting illnesses and can reduce unwanted outcomes at end-of-life. While several ACP tools and interventions have been designed for AYAs, most of these were developed in the United States of America (USA). This paper describes a study designed to adapt the AYA ACP tool, Voicing My CHOiCES (VMC), for the Australian population. A 2-stage mixed methods approach was used. Stage 1 involved a multiperspective interview to determine changes for the new Australian VMC. Participants were AYAs between the ages of 15 to 25, healthcare professionals, and parents. For each section, participants responded to questions targeting the helpfulness and usefulness of the items as well as open-ended questions about any suggested content or formatting changes. Stage 2 used think-aloud interviews asking AYA cancer patients and survivors aged between 15 and 39 years to respond to proposed changes for the Australian VMC. Stage 1 participants suggested changes to all pages of VMC, with proposed changes being based around language, content, and format. Stage 2 participants qualitatively confirmed the acceptability of these changes. Our data suggests that even between similar Western cultures, significant adaptations can be made to make ACP tools more culturally appropriate. More research is needed to further adapt ACP tools like VMC for culturally and linguistically diverse groups and to ensure these tools can be accessed by all AYAs with life-limiting illness.

Recruitment and retention challenges and strategies in randomized controlled trials of psychosocial interventions for children with cancer and their parents: a collective case study.

In pediatric oncology there are few examples of successful recruitment and retention strategies in psychosocial care research. This study aims to summarize experiences, challenges, and strategies for conducting randomized controlled trials (RCTs) of psychosocial intervention studies among children with cancer and their parent(s). We conducted a collective case study. To identify the cases, Pubmed and two trial registries were searched for ongoing and finished RCTs of psychosocial intervention studies for children with cancer and their parents. Online semi-structured expert interviews discussing recruitment and retention challenges and strategies were performed with principal investigators and research staff members of the identified cases. Nine studies were identified. Investigators and staff from seven studies participated, highlighting challenges and strategies within three major themes: eligibility, enrollment and retention. Regarding eligibility, collaborating constructively with healthcare professionals and involving them before the start of the study were essential. Being flexible, training the research staff, enabling alignment with the participants' situation, and providing consistency in contact between the research staff member and the families were important strategies for optimizing enrollment and retention. All studies followed a stepped process in recruitment.  Conclusion: Although recruitment and retention in some selected studies were successful, there is a paucity of evidence on experienced recruitment and retention challenges in pediatric psychosocial research and best practices on optimizing them. The strategies outlined in this study can help researchers optimize their protocol and trial-implementation, and contribute to better psychosocial care for children with cancer and their parents.  Trial Registration: This study is not a clinical trial. What is Known: • Performing RCTs is challenging, particularly in pediatric psychosocial research when both the child and parent are targeted. Recruitment and retention are common concerns. In pediatric oncology, there are few examples of successful recruitment and retention strategies in psychosocial care research. What is New: • Key strategies to collaborate constructively with healthcare professionals were outlined. Being flexible, training the research staff, alignment with the participant's situations and providing consistency in contact between the research staff member and the families were considered as essential strategies.

Special Issue: Psychosocial Considerations for Children and Adolescents Living with a Rare Disease.

This Special Issue of the journal Children constitutes an opportune moment to reflect on the psychosocial needs of children living with rare diseases and of their families [...].

Effect of the Family-Centered Advance Care Planning for Teens with Cancer Intervention on Sustainability of Congruence About End-of-Life Treatment Preferences: A Randomized Clinical Trial.

Importance: The effect of pediatric advance care planning (pACP) on the sustainability of end-of-life treatment preference congruence between adolescents with cancer and their families has not been examined. Objective: To evaluate the longitudinal efficacy of the Family-Centered Advance Care Planning for Teens with Cancer (FACE-TC) intervention to sustain adolescent-family congruence about end-of-life treatment preferences. Design, Setting, and Participants: This multisite, assessor-blinded, randomized clinical trial enrolled adolescents with cancer (aged 14-21 years) and their family members from 4 pediatric hospitals between July 16, 2016, and April 30, 2019. Participants were randomized 2:1 to FACE-TC (intervention group) or treatment as usual (control group) and underwent 5 follow-up visits over an 18-month postintervention period. Intention-to-treat analyses were conducted from March 9, 2021, to April 14, 2022. Exposures: Adolescent-family dyads randomized to the FACE-TC group received 3 weekly 60-minute sessions consisting of the discussion and/or completion of the Lyon Family-Centered Advance Care Planning Survey (session 1), Respecting Choices Next Steps pACP conversation (session 2), and Five Wishes advance directive (session 3). Dyads in the control group received treatment as usual. Both groups received pACP information. Main Outcomes and Measures: Congruence was measured by completion of the Statement of Treatment Preferences (a document that discusses 4 hypothetical clinical situations and treatment choices for each scenario: continue all treatments, stop all efforts to keep me alive, or unsure) after session 2 (time 1) and at 3 months (time 2), 6 months (time 3), 12 months (time 4), and 18 months (time 5) after intervention. The influence of FACE-TC on the trajectory of congruence over time was measured by longitudinal latent class analysis. Results: A total of 252 participants (126 adolescent-family dyads) were randomized. Adolescents (mean [SD] age, 17 [1.9] years) and family members (mean [SD] age, 46 [8.3] years) were predominantly female (72 [57%] and 104 [83%]) and White individuals (100 [79%] and 103 [82%]). There was an 83% (104 of 126) retention at the 18-month assessment. Two latent classes of congruence over time were identified: high-congruence latent class (69 of 116 [60%]) and low-congruence latent class (47 of 116 [41%]). The dyads in the FACE-TC group had a 3-fold odds of being in the high-congruence latent class (odds ratio [OR], 3.22; 95% CI, 1.09-9.57) compared with the control group. Statistically significant differences existed at 12 months (ß [SE] = 1.17 [0.55]; P = .03]) but not at 18 months (OR, 2.08; 95% CI, 0.92-4.69). In the high-congruence latent class, good agreement (agreement on 2 or 3 of 4 situations) increased over 12 months. White adolescents and families had significantly greater odds of congruence than a small population of American Indian or Alaska Native, Asian, Black or African American, Hispanic or Latino, or multiracial adolescents and families (OR, 3.97; 95% CI, 1.07-14.69). Conclusions and Relevance: Results of this trial showed that, for those who received the FACE-TC intervention, the families' knowledge of their adolescents' end-of-life treatment preferences was sustained for 1 year, suggesting yearly follow-up sessions. Race and ethnicity-based differences in the sustainability of this knowledge reflect a difference in the effect of the intervention and require further study. Trial Registration: ClinicalTrials.gov Identifier: NCT02693665.

Adolescent and Young Adult Initiated Discussions of Advance Care Planning: Family Member, Friend and Health Care Provider Perspectives.

Background and Aims: End-of-life (EoL) discussions can be difficult for seriously ill adolescents and young adults (AYAs). Researchers aimed to determine whether completing Voicing My CHOiCES (VMC)-a research-informed advance care planning (ACP) guide-increased communication with family, friends, or health care providers (HCPs), and to evaluate the experience of those with whom VMC was shared. Methods: Family, friends, or HCPs who the AYAs had shared their completed VMC with were administered structured interviews to assess their perception of the ACP discussion, changes in their relationship, conversation quality, and whether the discussion prompted changes in care. Open-ended responses underwent thematic analysis. Results: One-month post-completion, 65.1% of AYA had shared VMC completion with a family member, 22.6% with a friend, and 8.9% with an HCP. Among a sample of respondents, family (47%) and friends (33%) reported a positive change in their relationship with the AYA. Participant descriptions of the experience fell into five themes: positive experience (47%), difficult experience (44%), appreciated a guide to facilitate discussion (35%), provided relief (21%), and created worry/anxiety (9%). Only 1 HCP noted a treatment change. Family (76%), friends (67%), and HCP (50%) did not think the AYA would have discussed EoL preferences without completing VMC. Conclusions: VMC has potential to enhance communication about ACP between AYA and their family and friends, though less frequently with HCPs. Participants reported a positive change in their relationship with the AYA after discussing VMC, and described experiencing the conversation as favorable, even when also emotionally difficult.

The Transition to Adulthood for Youth Living with Rare Diseases.

More children with rare diseases survive into adulthood. The transition period to adult healthcare presents many challenges for pediatric rare diseases. Few adolescents or their families receive any transitional support for the transition to adult healthcare or for their maturing psychosocial needs. Understanding the challenges in the transition process is critical to ensure that interventions designed to improve the transition are holistic and meet the needs of the youth and their families. Few transition programs are in place to meet the needs of those youth with rare diseases who cannot participate in medical decision making or who live independently because of severe disabilities and comorbidities. We searched the literature on preparation and outcomes for youth living with rare diseases in PubMed, CINAHL, and PsychInfo, excluding publications before 2010. The results revealed seven studies specific to rare diseases, special needs, or chronic conditions. Next, we discussed transition with experts in the field, GotTransition.org, and citation chaining, yielding a total of 14 sources. The barriers and challenges to transition were identified. Articles discussing solutions and interventions for transition in medically complex children were categorized care coordination or transition readiness. A large portion of children with rare disease are underserved and experience health disparities in transition.

An Intervention in Congruence for End-of-Life Treatment Preference: A Randomized Trial.

BACKGROUND AND OBJECTIVES: There is a gap in family knowledge of their adolescents' end-of-life (EOL) treatment preferences. We tested the efficacy of Family Centered Advance Care Planning for Teens with Cancer (FACE-TC) pediatric advance care planning (to increase congruence in EOL treatment preferences. METHODS: Adolescents with cancer/family dyads were randomized into a clinical trial from July 2016 to April 2019 at a 2:1 ratio: intervention (n = 83); control (n = 43) to either 3 weekly sessions of FACE-TC (Lyon Advance Care Planning Survey; Next Steps: Respecting Choices Interview; Five Wishes, advance directive) or treatment as usual (TAU). Statement of Treatment Preferences measured congruence. RESULTS: Adolescents' (n = 126) mean age was 16.9 years; 57% were female and 79% were White. FACE-TC dyads had greater overall agreement than TAU: high 34% vs 2%, moderate 52% vs 45%, low 14% vs 52%, and P < .0001. Significantly greater odds of congruence were found for FACE-TC dyads than TAU for 3 of 4 disease-specific scenarios: for example, "a long hospitalization with low chance of survival," 78% (57 of 73) vs 45% (19 of 42); odds ratio, 4.31 (95% confidence interval, 1.89-9.82). FACE-TC families were more likely to agree to stop some treatments. Intervention adolescents, 67% (48 of 73), wanted their families to do what is best at the time, whereas fewer TAU adolescents, 43% (18 of 42), gave families this leeway (P = .01). CONCLUSIONS: High-quality pediatric advance care planning enabled families to know their adolescents' EOL treatment preferences.

"It Is a Whole Different Life from the Life I Used to Live": Assessing Parents' Support Needs in Paediatric Palliative Care.

AIMS: This feasibility study aimed to systematically identify and address the support needs of parents of children with life-limiting illnesses and to assess whether the systematic approach was acceptable and relevant to parents. METHODS: The CSNAT (Paediatric) intervention consisted of two assessment visits with the paediatric palliative care team, 2-8 weeks apart, comprising conversations about sources for support in a tertiary children hospital in Western Australia (2018-2019). Audio-recorded telephone interviews were conducted with parents, and inductive thematic analysis was undertaken. RESULTS: All 28 parents who were involved in the intervention agreed to be interviewed. Five themes summarised their experience: caregiving challenges, perceived gaps and feelings of isolation; the usefulness and practicality of the systematic assessment; emotional responses to self-reflection; feelings of validation and empowerment; and received supports responsive to their needs. CONCLUSIONS: Parents appreciated the value of this systematic approach in engaging them in conversations about their needs and solutions to address them. While clinical service support was affirmed by parents, they were left wanting in other areas of practical, psychosocial, and emotional support. Palliative care services need to build stronger partnerships with supportive community networks through compassionate communities volunteer models of care to address the non-clinical needs of these families.

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.

Family caregivers of children and adolescents with rare diseases: a novel palliative care intervention.

OBJECTIVE: To develop and pilot test a palliative care intervention for family caregivers of children with rare diseases (FAmily-CEntered pediatric Advance Care Planning-Rare (FACE-Rare)). METHODS: FACE-Rare development involved an iterative, family-guided process including review by a Patient and Family Advisory Council, semistructured family interviews and adaptation of two evidence-based person-centred approaches and pilot testing their integration. Eligible families were enrolled in FACE-Rare (the Carer Support Needs Assessment Tool (CSNAT) Approach Paediatric sessions 1 and 2; plus Respecting Choices Next Steps pACP intervention sessions 3 and 4). Satisfaction, quality of communication and caregiver appraisal were assessed. RESULTS: Parents were mean age 40 years, and children 7 years. Children's diseases were rare enough that description would identify patients. All children were technology dependent. Telemedicine, used with four of seven families, was an effective engagement strategy and decreased subject burden. Families found FACE-Rare valuable following a strategy that first elicited palliative care needs and a support plan. Eight families were approached for pilot testing. Of the seven mothers who agreed to participate, six began session 1, and of those, 100% completed: all four FACE-Rare sessions, baseline and 2-week postintervention assessments, and a written pACP which described their preferences for medical decision-making to share with their providers. 100% reported FACE-Rare was helpful. The top three CSNAT concerns were: knowing what to expect in the future, having enough time for yourself and financial issues. Benchmarks were achieved and questionnaires were acceptable to parents and thus feasible to use in a larger trial. CONCLUSIONS: FACE-Rare provides an innovative, structured approach for clinicians to deliver person-centred care.

The intersectionality of gender and poverty on symptom suffering among adolescents with cancer.

BACKGROUND: To determine if the intersectionality of gender and poverty is associated with health disparities among adolescents with cancer. We hypothesized unobserved latent classes of patients exist with respect to cancer-related symptoms; and class classification varies by gender-poverty combinations. PROCEDURE: Cross-sectional data were collected among adolescents with cancer and families (N = 126 dyads) at four tertiary pediatric hospitals. Adolescents were aged 14-21 years, English speaking, cancer diagnosis, not developmentally delayed, psychotic, homicidal, suicidal, or severely depressed. Latent class analysis and multinomial logit models were used for analysis. Patient-Reported Outcomes Measurement Information System (PROMIS) pediatric symptom measures, Short forms, evaluated anxiety, depressive symptoms, pain interference, and fatigue. Family-reported household income used 2016 Federal Poverty Level (FPL) guidelines. RESULTS: Three distinct groups of patients were identified using PROMIS symptom patterns: High Distress-25%; High Physical/Low Psychological Distress-14%; and Low Distress-62%. Female adolescents living in households with incomes at or below the 2016 FPL had 30 times the odds of being classified in the High Distress class (higher probabilities of experiencing anxiety, depressive symptoms, pain interference, and fatigue) compared to those in the High Physical/Low Psychological Distress class (female and poverty: AOR = 30.27, 95% CI 1.23, 735.10), and this was statistically significant (ß = 3.41, 95% CI 0.21, 6.60; p = .04) but not compared to those in Low Distress. CONCLUSION: Adolescent females with cancer with households in poverty had significantly greater odds of experiencing high symptom distress, compared to those with high physical but low psychological distress. More comprehensive screening and intervention, as needed, may decrease disparities.

Pediatric Advance Care Planning and Families' Positive Caregiving Appraisals: An RCT.

BACKGROUND AND OBJECTIVES: Little is known about how families respond to pediatric advance care 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. METHODS: In a randomized clinical trial with adolescents with cancer and their families conducted from July 2016 to April 2019 in 4 tertiary pediatric hospitals, adolescents and family dyads were randomly assigned at a 2:1 intervention/control ratio to either the 3 weekly sessions of FACE-TC (Advance Care Planning Survey; Next Steps: Respecting Choices; Five Wishes) or treatment-as-usual. Only the family member was included in this study. Generalized estimating equations assessed the intervention effect measured by Family Appraisal of Caregiving Questionnaire. RESULTS: Families' (n = 126) mean age was 46 years; 83% were female, and 82% were white. FACE-TC families significantly increased positive caregiving appraisals at 3-months postintervention, compared with those in the control group (ß = .35; 95% confidence interval [CI] 0.19 to 0.36; P = .03). No significant differences were found between groups for strain (ß = -.14; 95% CI = -0.42 to 0.15; P = .35) or distress (ß = -.01; CI = -0.35 to 0.32; P = .93). CONCLUSIONS: Families benefited from participation in FACE-TC, which resulted in positive appraisals of their caregiving for their child with cancer, while not significantly burdening them with distress or strain. Clinicians can be assured of the tolerability of this family-supported model.

Advance Care Planning-Complex and Working: Longitudinal Trajectory of Congruence in End-of-Life Treatment Preferences: An RCT.

CONTEXT: The effect of advance care planning (ACP) interventions on the trajectory of end-of-life treatment preference congruence between patients and surrogate decision-makers is unstudied. OBJECTIVE: To identify unobserved distinctive patterns of congruence trajectories and examine how the typology of outcome development differed between ACP and controls. METHODS: Multisite, assessor-blinded, intent-to-treat, randomized clinical trial enrolled participants between October 2013 to March 2017 from 5 hospital-based HIV clinics. Persons living with HIV(PLWH)/surrogate dyads were randomized to 2 weekly 60-minute sessions: ACP (1) ACP facilitated conversation, (2) advance directive completion; or Control (1) Developmental/relationship history, (2) Nutrition/Exercise. Growth Mixed Modeling was used for 18-month post-intervention analysis. FINDINGS: 223 dyads (N = 449 participants) were enrolled. PLWH were 56% male, aged 22 to 77 years, and 86% African American. Surrogates were 56% female, aged 18 to 82 years, and 84% African American. Two latent classes (High vs. Low) of congruence growth trajectory were identified. ACP influenced the trajectory of outcome growth (congruence in all 5 AIDS related situations) by latent class. ACP dyads had a significantly higher probability of being in the High Congruence latent class compared to controls (52%, 75/144 dyads versus 27%, 17/62 dyads, p = 0.001). The probabilities of perfect congruence diminished at 3-months post-intervention but was then sustained. ACP had a significant effect (ß = 1.92, p = 0.006, OR = 7.10, 95%C.I.: 1.729, 26.897) on the odds of being in the High Congruence class. CONCLUSION: ACP had a significant effect on the trajectory of congruence growth over time. ACP dyads had 7 times the odds of congruence, compared to controls. Three-months post-intervention is optimal for booster sessions.

What Do Adults With HIV Want? End-of-Life Care Goals, Values and Beliefs by Gender, Race, Sexual Orientation.

OBJECTIVE: We examined factors influencing end-of-life care preferences among persons living with HIV (PLWH). METHODS: 223 PLWH were enrolled from 5 hospital-based clinics in Washington, DC. They completed an end-of-life care survey at baseline of the FACE™-HIV Advance Care Planning clinical trial. FINDINGS: The average age of patients was 51 years. 56% were male, 66% heterosexual, and 86% African American. Two distinct groups of patients were identified with respect to end-of-life care preferences: (1) a Relational class (75%) who prioritized family and friends, comfort from church services, and comfort from persons at the end-of-life; and (2) a Transactional/Self-Determination class (25%) who prioritized honest answers from their doctors, and advance care plans over relationships. African Americans had 3x the odds of being in the Relational class versus the Transactional/Self-determination class, Odds ratio = 3.30 (95% CI, 1.09, 10.03), p = 0.035. Males were significantly less likely to be in the relational latent class, Odds ratio = 0.38 (CI, 0.15, 0.98), p = 0.045. Compared to non-African-Americans, African-American PLWH rated the following as important: only taking pain medicines when pain is severe, p = 0.0113; saving larger doses for worse pain, p = 0.0067; and dying in the hospital, p = 0.0285. PLWH who were sexual minorities were more afraid of dying alone, p = 0.0397, and less likely to only take pain medicines when pain is severe, p = 0.0091. CONCLUSION: Integrating culturally-sensitive palliative care services as a component of the HIV care continuum may improve health equity and person-centered care.

Provider Discussion about Lifestyle by Cancer History: A Nationally Representative Survey.

BACKGROUND: Providers are uniquely positioned to encourage health-promoting behaviors, particularly among cancer survivors where patients develop trust in providers. METHODS: We utilized the National Health Interview Survey to identify adults who reported a visit to a provider in the prior year (44,385 individuals with no cancer history and 4,792 cancer survivors), and reported prevalence of provider discussions on weight loss, physical activity, diet, and smoking. We used generalized linear mixed models to examine predicted prevalence of provider lifestyle discussions by cancer history overall, and among those who do not meet body mass index (BMI), activity, or smoking guidelines. RESULTS: Among those with a BMI of 25-<60 kg/m2, 9.2% of those with a cancer history and 11.6% of those without a cancer history reported being told to participate in a weight loss program (P < 0.001). Overall, 31.7% of cancer survivors and 35.3% of those with no cancer history were told to increase their physical activity (P < 0.001). Only 27.6% of cancer survivors and 32.2% of those with no cancer history reported having a general discussion of diet (P < 0.001). Among smokers, 67.3% of cancer survivors and 69.9% of those with no cancer history reported counseling on smoking (P = 0.309). CONCLUSIONS: Fewer cancer survivors, who are at increased risk for health complications, are reporting provider discussions about critical lifestyle issues than those with no cancer history. IMPACT: Our nationally representative results suggest that providers are missing an opportunity for influencing patient lifestyle factors, which could lead to mitigation of late and long-term effects of treatment.

The Effect of FAmily-CEntered (FACE®) Pediatric Advanced Care Planning Intervention on Family Anxiety: A Randomized Controlled Clinical Trial for Adolescents With HIV and Their Families.

Clinicians fear pediatric advance care planning (pACP) for adolescents is too distressing for families. Multisite longitudinal randomized controlled trial of adolescents with HIV tested the effect of FAmily-CEntered (FACE®) pACP intervention on families' anxiety and depression. One hundred five adolescent/family dyads were randomized to FACE® (n = 54 dyads) or control (n = 51 dyads). Families were 90% African American, 37% HIV-positive, and 22% less than high school educated. Families reported lower anxiety 3 months post-FACE® intervention than control (ß = -4.71, 95% confidence interval [CI] = [-8.20, -1.23], p = .008). Male family members were less anxious than female family members (ß = -4.55, 95% CI = [-6.96, -2.138], p ≤ .001). Family members living with HIV reported greater depressive symptoms than HIV-uninfected families (ß = 3.32, 95% CI = [0.254, 6.38], p = .034). Clinicians can be assured this structured, facilitated FACE® pACP model minimized family anxiety without increasing depressive symptoms. Adolescent/family dyads should be invited to have access to, and provision of, evidence-based pACP as part of patient-centered/family-supported care in the HIV continuum of care.

The profile and support needs of parents in paediatric palliative care: comparing cancer and non-cancer groups.

BACKGROUND: Parents of children with life-limiting illnesses experience considerable burden and distress, yet few interventions have targeted their well-being. OBJECTIVES: Evaluate the use and feasibility of the Paediatric Carer Support Needs Assessment Tool (pCSNAT) in assessing and addressing parents' needs caring for cancer and non-cancer conditions. Carer well-being outcomes were also tested. METHODS: A non-randomised prospective intervention pilot study. Twenty-eight parents (out of 42 approached) and 5 health professionals working in paediatric palliative care services in Western Australia (2018-2019) completed the pilot study. RESULTS: Two-thirds of eligible parents completed the study. The highest support needs included having time for yourself; practical help in the home; knowing what to expect in the future; financial, legal or work issues; and knowing who to contact if you are concerned. Almost all needs were considerably more pronounced for the non-cancer group. The pCSNAT seemed feasible and outcomes demonstrated a tendency to improve. CONCLUSION: Using the pCSNAT provided a concise and comprehensive 'one stop shop' for health professionals to evaluate difficulties encountered by parents. The disadvantages reported by the non-cancer group warrant increased attention. Paediatric palliative care should adopt routine assessment of parents' support needs to anticipate early and tailored supports including partnerships with the community.

Shared spiritual beliefs between adolescents with cancer and their families.

BACKGROUND: 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. PROCEDURE: 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. RESULTS: Adolescents (126) had mean age of 16.9 years, 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. CONCLUSIONS: Family members may not share spiritual beliefs with adolescents and may be unaware of the importance of spiritual well-being for adolescents.