Ensuring Intervention Fidelity of an Attention Control Arm in a Multisite Randomized Controlled Trial.

BACKGROUND: Intervention fidelity is a critical element of randomized controlled trials, yet reporting of intervention fidelity among attention control arms is limited. Lack of fidelity to attention control procedures can affect study outcomes by either overestimating or underestimating the efficacy of the intervention under examination. OBJECTIVES: This brief report describes the approach researchers took to promote fidelity to the attention control arm of a pediatric palliative care randomized controlled trial funded by the National Institutes of Health. METHODS: The Informational Meetings for Planning and Coordinating Treatment trial aims to determine the efficacy of a communication intervention that uses care team dyads (i.e., physicians partnered with nurses or advanced practice providers) to engage parents of children with cancer who have a poor prognosis in structured conversations about prognostic information, goals of care, and care planning. The intervention is compared with an attention control arm, which provides parents with structured conversations on common pediatric cancer education topics, such as talking to their child about their cancer, clinical trials, cancer treatment, side effects, and so forth. National Institutes of Health guidelines for assessing and implementing strategies to promote intervention fidelity were used to design (a) the attention control arm of a randomized controlled trial, (b) related attention control arm training, and (c) quality assurance monitoring. RESULTS: Attention control study procedures were designed to mirror that of the intervention arm (i.e., same number, frequency, and time spent in study visits). Cluster randomization was used to allocate care team dyads to one arm of the randomized controlled trial. Care team dyads assigned to the attention control arm participated in online training sessions to learn attention control procedures, the different roles of research team members, and quality assurance methods. Fidelity to attention control procedures is assessed by both the interveners themselves and a quality assurance team. DISCUSSION: Study design, training, and delivery are all critical to attention control fidelity. Baseline training often needs to be supplemented with booster training when time gaps occur between study start-up and implementation. Quality assurance procedures are essential to determine whether interveners consistently deliver attention control procedures correctly.

Demand-only patient-controlled analgesia for treatment of acute vaso-occlusive pain in sickle cell disease.

BACKGROUND: Sickle cell disease (SCD) is a chronic illness that is associated with frequent admissions for vaso-occlusive episodes (VOE). Opioids are frequently utilized in pain management, but dosing is often provider dependent. Opioids cause both short-term and long-term side effects, so the minimal effective dose is desired. This study examined demand-only patient-controlled analgesia (PCA) in pediatric patients. METHODS: A new clinical practice guideline (CPG) for a single institution was implemented, which eliminated basal infusion dosing for PCAs on hospital admission. The primary aim of this retrospective study was to evaluate length of stay (LOS) before and after implementation of a CPG of demand-only PCA and, in a selected subpopulation, addition of short-term methadone. Secondary aims included opioid utilization, acute chest syndrome (ACS), and hypoxia. Inclusion criteria included SCD, ≤21 years of age, uncomplicated VOE admission, and ≥ 3 and ≤ 8 hospital admissions for SCD pain control within one calendar year. RESULTS: LOS decreased postintervention (7.2 ± 5.1 vs 4.5 ± 3.8 days, P < 0.001). Mean total opioid utilization in morphine equivalents mg/kg markedly decreased between the cohorts (13.3 ± 33.8 vs 3.6 ± 3.0, P < 0.001). ACS (21.9% vs 2.8%, P = 0.004) and hypoxia (28% vs 6.9%, P< 0.001) decreased significantly as well. CONCLUSION: Bolus PCA dosing of opioids resulted in decreased LOS and reductions in opioid utilization, hypoxia, and ACS.

COMPLETE (Communication Plan Early Through End of Life): Development of a Research Program to Diminish Suffering for Children at End of Life.

While overall survival has improved significantly for children with cancer over the past 75 years, cancer remains the leading cause of death from disease among children and adolescents. Further, despite the many advances in medical and nursing care, children with cancer still experience significant physical and emotional suffering over the course of their illness, especially at the end of life (EOL). Children endure significant rates of high-intensity medical interventions (e.g., intubation, intensive care unit admission) at the EOL despite many parents, adolescents, and young adult patients identifying home as their preferred location of death. Hospice care has the potential to ease suffering at the EOL and facilitate home deaths, and yet, most children still die in acute care settings without hospice care. Numerous barriers prevent timely enrollment in hospice among children with cancer who are in the EOL period. This report describes the development and testing of a palliative care/EOL communication intervention designed to overcome some of these barriers and improve EOL outcomes (i.e., earlier hospice enrollment, less use of high-intensity medical interventions, reduced pain and suffering) among children with cancer and their parents (i.e., less emotional distress and uncertainty, improved hope and healthcare satisfaction).

Dietary intake and micronutrient deficiency in children with cancer.

Data regarding micronutrient deficiencies in children with cancer are lacking. We measured micronutrients in a subset of children with cancer (n = 23) participating in a randomized trial of the neutropenic diet. Ninety-six percent of children had ≥1 micronutrient deficiency and 39% had ≥3 micronutrient deficiencies. Eighty-six percent of children had vitamin C deficiency, 87% had 25-hydroxyvitamin D deficiency, 50% had zinc deficiency, and 13% had vitamin A deficiency. Dietary intake did not correlate with micronutrient deficiency status. More data are needed regarding the prevalence and etiology of micronutrient deficiencies in children with cancer to further understand their implications and treatment.

A randomized trial of the effectiveness of the neutropenic diet versus food safety guidelines on infection rate in pediatric oncology patients.

BACKGROUND: The neutropenic diet (ND) is prescribed to avoid introduction of bacteria into a host's gastrointestinal tract and reduce infection. Due to a lack of evidence to support the ND, there continues to be debate among pediatric oncologists regarding its usefulness. This prospective randomized controlled trial evaluated the difference in neutropenic infection rates in pediatric oncology patients randomized to Food and Drug Administration approved food safety guidelines (FSGs) versus the ND plus FSGs during one cycle of chemotherapy. PROCEDURE: Pediatric patients receiving cancer treatment with myelosuppressive chemotherapy were eligible. Neutropenic infection was the primary outcome and defined as (i) fever with neutropenia or (ii) hospital admission and treatment for clinical infection and neutropenia. The rate of neutropenic infection was compared with Student's t-test for independent samples. Documented infections were identified by comprehensive chart review and compared between groups using a χ2 test. RESULTS: One hundred fifty patients were randomly assigned to FSGs (n = 73) or ND + FSGs (n = 77). The most common diagnoses were acute lymphoblastic leukemia (32%) and sarcoma (32%). There was no significant difference between the groups in the percentage of patients who developed neutropenic infection: FSGs 33% versus ND + FSGs 35% (P = 0.78). Patients randomized to ND + FSGs reported that following the diet required more effort than those on FSGs alone. CONCLUSION: The ND offers no benefit over FSGs in the prevention of infection in pediatric oncology patients undergoing myelosuppressive chemotherapy and adherence requires more effort for patients and families. Institutions caring for children with cancer should consider replacing ND guidelines with FSGs.

Prospective Evaluation of Physical Contact with Critically Ill Child on Caregiver Spiritual Wellbeing.

OBJECTIVES: To evaluate whether a pediatric intensive care unit initiative promoting physical contact between caregiver and patient improves caregiver spiritual wellbeing. The secondary objectives were to evaluate caregiver perceptions of care before and after the initiative and to follow unplanned extubation rate as a marker of safety of the initiative. We hypothesized that caregiver spiritual wellbeing and caregiver perceptions of care would improve with implementation of our physical contact initiative known as Project ROSE (Reach Out, Soothe, and Embrace). STUDY DESIGN: Project ROSE was a practice change initiative promoting physical contact between caregiver and hospitalized child in an academic quaternary care pediatric intensive care unit. Caregivers' spiritual wellbeing and perceptions of care were surveyed at days 1 and 4, then compared pre- and postimplementation of the unit-wide initiative. Wilcoxon rank sum tests compared groups (pre- and post-Project ROSE). A total of 331 caregivers returned surveys. RESULTS: We analyzed 331 surveys (pre, n = 174/post, n = 157). Caregiver spiritual wellbeing at enrollment (day 1) was no different between groups (P = .47). Caregiver spiritual wellbeing on day 4 was greater in the postintervention group (pre 40.0 [32.0, 44.0] vs post 42.0 [37.5, 45.0] P = .03). Caregiver perceptions of care improved postintervention. There was no change in the unplanned extubation rate between groups. CONCLUSION: Project ROSE improved caregiver spiritual wellbeing and perceptions of care, was implemented safely, addresses a need in family-centered care of critically ill pediatric patients, and merits consideration for integration into practice.

Day One Talk: parent preferences when learning that their child has cancer.

PURPOSE: The discussion that occurs between a pediatric oncologist and a family when they first learn about their child's new diagnosis of cancer is known as the "Day One Talk." Few studies have addressed parent preferences when learning that their child has been diagnosed with cancer. The objective of this study is to assess what information parents of children with newly diagnosed cancer believe is important to learn during the Day One Talk. METHODS: In this cross-sectional study, a survey tool based on expert opinion was created to assess parents' views of components of the Day One Talk including its content, length, and setting, as well as whether the child should be present for the initial talk and which staff should be present for the talk. RESULTS: Sixty-two parents of children with newly diagnosed cancer participated. Ninety-seven percent believed that the Day One Talk is extremely important. Ninety percent believed that the word "cancer" should be used during the Day One Talk. Seventy-seven percent believed that the pediatric oncologist should provide specific numbers regarding cure rates for the patient's diagnosis. Eighty-four percent of parents do not believe that children younger than 14 should be present. CONCLUSIONS: These results suggest that parents of children with cancer have certain preferences regarding the Day One Talk. When conducting the Day One Talk, providers should elicit parent preferences regarding these issues in order to best meet families' needs.

Decreasing Burnout and Improving Work Environment: The Impact of Firgun on a Pediatric Hematopoietic Cell Transplant Team.

PURPOSE: Oncology teams are challenged by BO, which may be alleviated by meaningful recognition. In this study, firgun-altruistic acknowledgment-was implemented on a pediatric hematopoietic cell transplant unit to evaluate its impact on staff and work environment. METHODS: In this longitudinal, mixed-methods pilot study, interdisciplinary inpatient hematopoietic cell transplant providers received web-based firgun education. Electronic administration of validated surveys occurred at baseline and 8 weeks, including Perceived Stress Scale, Professional Quality of Life Scale, Maslach Burnout Inventory, Workplace Civility Index, Areas of Work Life Survey, and WHO-5. Weekly e-mails reminded participants to practice and log firgun. Wilcoxon signed test for paired data compared pre/post results. Interviews conducted at project completion were coded using MaxQDA software. RESULTS: Forty-two participants enrolled; 25 completed pre/post surveys; eight were interviewed. At study end, participants reported feeling less nervous and stressed (P = .008), and less difficulty coping (P = .01; Perceived Stress Scale), while noting increased acknowledgment of others' work (P = .04) and seeking constructive feedback (P = .04; Workplace Civility Index). Marked BO was not evident overall on the Maslach Burnout Inventory; however, emotional exhaustion subscale mean (SD) scores improved from pre (19.4 [8.6]) to post (16 [6.3; P = .02]) and individual items illustrated decreased fatigue (P = .008), frustration (P = .04), and feeling "at the end of my rope" (P = .001). Postintervention participants noted increased receipt of recognition (P = .02; Areas of Work Life Survey), decreased feeling "bogged down" (P = .02), decreased affective stress (P = .04), and negative pre-occupations (P = .04; Professional Quality of Life Scale). Qualitative analysis revealed themes of improved confidence at work and enhanced feelings of trust and teamwork. CONCLUSION: Firgun is a tool that can potentially reduce BO and stress in interdisciplinary providers, facilitate teamwork, and promote positive work environments in clinical oncology and beyond.

In-person and virtual adaptation of an interprofessional palliative care communications skills training course for pediatric oncology clinicians.

Purpose: Effective, empathic communication is crucial for pediatric oncology clinicians when discussing palliative and end-of-life (PC/EOL) care with parents of children with cancer. Unfortunately, many parents report inadequate communication at these distressing times. This study evaluates the communication skills training (CST) clinicians received to deliver a PC/EOL communication intervention as part of a multi-site randomized-controlled trial (RCT). Methods: Clinicians from eight sites formed dyads (one physician and one nurse [RN] or advanced practice provider [APP]) and were trained over 3 days (in-person or virtually). Training was adapted from VitalTalk™ and included didactic instruction, videos, visual aids, and dedicated time to practice with simulated patients. Study participants completed a confidential, post-training online evaluation survey. A self-reported quality assurance checklist was used to measure fidelity to the communication protocol when delivered to parents during the RCT. Results: Thirty clinicians completed training; 26 completed post-training surveys including twelve (46.1%) physicians, 8 (30.8%) RNs and 6 (23.1%) APPs. Most were female (65.4%); white (80.8%), not Latinx (88.5%); 40-50 years old (53.9%); and in practice over 10 years (65.4%). Nine (34.6%) trained in-person; the rest trained virtually. Ninety-two percent reported the course was valuable or very valuable for developing their PC/EOL communication skills and 96% reported learning something new. Dyads trained virtually had similar fidelity to those trained in-person (95% and 90% respectively) when delivering the PC/EOL communication intervention to parents. Conclusion: This PC/EOL CST was valuable for improving pediatric oncology clinicians' communication skills, successfully implemented in-person and virtually, and translated effectively into practice.

Mediators and Moderators of Active Music Engagement to Reduce Traumatic Stress Symptoms and Improve Well-being in Parents of Young Children With Cancer.

OBJECTIVE: This trial examined the effects of proximal/distal mediators and moderators of an Active Music Engagement (AME) intervention on young child/parent distress, quality of life, and family function outcomes. METHODS: Child/parent dyads (n = 125) were randomized to AME or Audio-storybooks attention control condition. Each group received 3 sessions with a credentialed music therapist for 3 consecutive days with data collection at baseline, post-intervention (T2), and 30-days later (T3). Potential proximal mediators included within session child and parent engagement. Potential distal mediators included changes in perceived family normalcy, parent self-efficacy, and independent use of play materials. Potential moderators included parent/child distress with prior hospitalizations, parent traumatic stress screener (PCL-6), and child age. Outcomes included child emotional distress and quality of life; parent emotion, traumatic stress symptoms (IES-R), well-being; and family function. Mediation effects were estimated using ANCOVA, with indirect effects estimated using the percentile bootstrap approach. Moderation effects were tested by including appropriate interaction terms in models. RESULTS: No significant mediation effects were observed. Child distress with prior hospitalizations moderated AME effects for IES-R intrusion subscale scores at T2 (P = .01) and avoidance subscale scores at T3 (P = .007). Traumatic stress screener scores (PCL-6) moderated intervention effects for IES-R hyperarousal subscale scores at T2 (P = .01). There were no moderation effects for child age. CONCLUSIONS: AME is a promising intervention for mitigating traumatic stress symptoms and supporting well-being in parents of children with cancer, particularly for parents who screen high for traumatic stress and whose children are more highly distressed with hospitalization.

Extracorporeal membrane oxygenation in adults receiving haematopoietic cell transplantation: an international expert statement.

Combined advances in haematopoietic cell transplantation (HCT) and intensive care management have improved the survival of patients with haematological malignancies admitted to the intensive care unit. In cases of refractory respiratory failure or refractory cardiac failure, these advances have led to a renewed interest in advanced life support therapies, such as extracorporeal membrane oxygenation (ECMO), previously considered inappropriate for these patients due to their poor prognosis. Given the scarcity of evidence-based guidelines on the use of ECMO in patients receiving HCT and the need to provide equitable and sustainable access to ECMO, the European Society of Intensive Care Medicine, the Extracorporeal Life Support Organization, and the International ECMO Network aimed to develop an expert consensus statement on the use of ECMO in adult patients receiving HCT. A steering committee with expertise in ECMO and HCT searched the literature for relevant articles on ECMO, HCT, and immune effector cell therapy, and developed opinion statements through discussions following a Quaker-based consensus approach. An international panel of experts was convened to vote on these expert opinion statements following the Research and Development/University of California, Los Angeles Appropriateness Method. The Appraisal of Guidelines for Research and Evaluation statement was followed to prepare this Position Paper. 36 statements were drafted by the steering committee, 33 of which reached strong agreement after the first voting round. The remaining three statements were discussed by all members of the steering committee and expert panel, and rephrased before an additional round of voting. At the conclusion of the process, 33 statements received strong agreement and three weak agreement. This Position Paper could help to guide intensivists and haematologists during the difficult decision-making process regarding ECMO candidacy in adult patients receiving HCT. The statements could also serve as a basis for future research focused on ECMO selection criteria and bedside management.

Interdisciplinary Collaborative Care to Manage Total Pain in Children with Cancer.

The pain and suffering of children with cancer became national news in the winter of 2000 with the publication of Wolfe's landmark paper in the New England Journal of Medicine, "Symptoms and Suffering Children with Cancer" [...].

Hyponatremia with Antidepressant: A Rare Side Effect from Duloxetine in a Child with Acute Leukemia.

Duloxetine is indicated for the treatment of chemotherapy-induced neuropathic pain in adults. It is also indicated for anxiety, depression, and fibromyalgia in children. A rare side effect of syndrome of inappropriate antidiuretic hormone (SIADH) secretion has been reported in adults, but not in pediatrics or pediatric oncology patients. We present the case of a 10-year-old child with acute lymphoblastic leukemia, who developed SIADH after duloxetine was given for chemotherapy-induced neuropathic pain and comorbid anxiety. The SIADH resolved after duloxetine was stopped. This case highlights a rare side effect of duloxetine and caution should be taken when prescribing duloxetine to children.

Pain and Analgesia in Children with Cancer after Hemipelvectomy: A Retrospective Analysis.

A paucity of data exists centering on the pain experience of children following hemipelvectomy performed for primary bone and soft tissue sarcomas. In this study, we aimed to describe the incidence, severity, and evolution of perioperative pain and function in pediatric oncology patients undergoing hemipelvectomy, and, additionally, we sought to detail the analgesic regimens used for these patients perioperatively. A retrospective chart review was conducted, studying cancer patients, aged 21 years and under, who underwent hemipelvectomy at MD Anderson Cancer Center (MDACC) from 2018 to 2021. Primary outcomes included the evolution of pain throughout the perioperative course, as well as the route, type, dose, and duration of analgesic regimens. Eight patients were included in the analysis. The mean age at operation was 13 ± 2.93 years. All patients received opioids and acetaminophen. The mean pain scores were highest on post-operative day (POD)0, POD5, and POD 30. The mean opioid use was highest on POD5. A total of 75% of patients were noted to be ambulating after hemipelvectomy. The mean time to ambulation was 5.33 ± 2.94 days. The combination of acetaminophen with opioids, as well as adjunctive regional analgesia, non-steroidal anti-inflammatory drugs, gabapentin, and/or ketamine in select patients, appeared to be an effective analgesic regimen, and functional outcomes were excellent in 75% of patients.

Bereaved Parent Perspectives on End-of-Life Conversations in Pediatric Oncology.

BACKGROUND: Professional education pertaining to end-of-life care with pediatric oncology patients is limited. Pediatric trainees learn about end-of-life conversations largely from the provider's perspective. Bereaved parents can inform the education of oncologists and the interdisciplinary team by sharing their perceptions and preferences through personal narratives. METHODS: The aim of this project was to enhance the healthcare teams' understanding of bereaved parents' end-of-life care preferences through narratives. Bereaved parents were recruited from our institution's Pediatric Supportive Care Committee membership. Parents were tasked with identifying elements of care that were of the greatest importance to them, based upon their personal experiences during their child's end-of-life care. Narratives were analyzed using standard qualitative methods. RESULTS: Parents of five patients participated, including four mothers and three fathers. Ten themes summarizing essential elements of end-of-life care were identified, including early ongoing and stepwise prognostic disclosure, honoring the child's voice, support of hope and realism, anticipatory guidance on dying, and continued contact with the bereaved. CONCLUSION: Bereaved parents emphasize the need for providers to have ongoing honest conversations that support realism and hope that can help them to best prepare for their child's end of life and to remain in contact with them after death.

Extracorporeal membrane oxygenation in children receiving haematopoietic cell transplantation and immune effector cell therapy: an international and multidisciplinary consensus statement.

Use of extracorporeal membrane oxygenation (ECMO) in children receiving haematopoietic cell transplantation (HCT) and immune effector cell therapy is controversial and evidence-based guidelines have not been established. Remarkable advancements in HCT and immune effector cell therapies have changed expectations around reversibility of organ dysfunction and survival for affected patients. Herein, members of the Extracorporeal Life Support Organization (ELSO), Pediatric Acute Lung Injury and Sepsis Investigators (PALISI) Network (HCT and cancer immunotherapy subgroup), the Pediatric Diseases Working Party of the European Society for Blood and Marrow Transplantation (EBMT), the supportive care committee of the Pediatric Transplantation and Cellular Therapy Consortium (PTCTC), and the Pediatric Intensive Care Oncology Kids in Europe Research (POKER) group of the European Society of Pediatric and Neonatal Intensive Care (ESPNIC) provide consensus recommendations on the use of ECMO in children receiving HCT and immune effector cell therapy. These are the first international, multidisciplinary consensus-based recommendations on the use of ECMO in this patient population. This Review provides a clinical decision support tool for paediatric haematologists, oncologists, and critical care physicians during the difficult decision-making process of ECMO candidacy and management. These recommendations can represent a base for future research studies focused on ECMO selection criteria and bedside management.

Career burnout among pediatric oncologists.

BACKGROUND: Burnout is a work-related syndrome consisting of emotional exhaustion, depersonalization, and diminished feelings of personal accomplishment. Physicians who care for patients with life-threatening illnesses are at high risk for developing burnout. This survey evaluates the prevalence of burnout among pediatric oncologists, and assesses risk factors associated with the development of burnout. PROCEDURE: A questionnaire was sent via email to 1,047 practicing pediatric oncologists. The survey included the 22 question Maslach Burnout Inventory (MBI), as well as questions regarding work-related and lifestyle-related factors associated with developing burnout. RESULTS: Four hundred ten pediatric oncologists (40%) responded to the survey. Thirty-eight percent of pediatric oncologists had high levels of burnout on the MBI, while 72% had at least moderate levels of burnout. Women (47% vs. 32%, P < 0.004) and physicians practicing for <10 years (50% vs. 33%, P < 0.004) had significantly higher rates of burnout. Physicians who reported satisfaction with their lives outside of work were less likely to have burnout (odds ratio 0.238, 0.143-0.396, P < 0.001). The availability of a forum for debriefing, and services for physicians affected by burnout were both associated with lower rates of burnout (24% vs. 46%, P < 0.001 and 23% vs. 46%, P < 0.001). Thirty-six percent of respondents reported their institution has a forum for debriefing and 40% of respondents reported their institution has services available for physicians experiencing symptoms of burnout. CONCLUSIONS: Approximately three quarters of pediatric oncologists experience burnout. Further research is needed on the effectiveness of interventions aimed at preventing and treating work-related burnout.

Sporadic fatal insomnia in a young woman: a diagnostic challenge: case report.

BACKGROUND: Sporadic fatal insomnia (sFI) and fatal familial insomnia (FFI) are rare human prion diseases. CASE PRESENTATION: We report a case of a 33-year-old female who died of a prion disease for whom the diagnosis of sFI or FFI was not considered clinically. Following death of this patient, an interview with a close family member indicated the patient's illness included a major change in her sleep pattern, corroborating the reported autopsy diagnosis of sFI. Genetic tests identified no prion protein (PrP) gene mutation, but neuropathological examination and molecular study showed protease-resistant PrP (PrPres) in several brain regions and severe atrophy of the anterior-ventral and medial-dorsal thalamic nuclei similar to that described in FFI. CONCLUSIONS: In patients with suspected prion disease, a characteristic change in sleep pattern can be an important clinical clue for identifying sFI or FFI; polysomnography (PSG), genetic analysis, and nuclear imaging may aid in diagnosis.

Psychosocial needs of ethnic minority, inner-city, pediatric cancer patients.

PURPOSE: Limited data are available regarding the psychosocial impact of cancer on families of culturally diverse backgrounds living in medically underserved communities. The unique psychosocial needs of families of children with cancer from an ethnically diverse inner-city population is the focus of this study. METHODS: The prevalence of psychosocial needs among a multi-cultural, inner-city sample of children and adolescents with cancer and their parents was assessed using a modified version of the Psychosocial Needs Assessment Survey. All patients were recruited from the Children's Hospital at Montefiore located in Bronx, NY, a designated medically underserved community. RESULTS: Seventy-eight percent of parents reported unmet informational needs. The three most commonly endorsed informational needs by parents and children were regarding dietary management of acute side effects, late effects of having cancer and secondary cancer prevention. Less educated parents reported greater unmet supportive, practical, and spiritual needs than those with more education. Fathers had greater informational and practical needs than mothers and younger parents had more practical needs than older parents. Endorsement of spiritual needs was lower for both children and parents compared with supportive, informational, or practical needs. CONCLUSIONS: Given the high prevalence of reported unmet informational needs, efforts should be made to provide patients and families with education tailored to their informational needs and level of education. This population may benefit from psychoeducational interventions, including community-based informational and peer support groups. Such interventions may augment efforts to lessen health gaps experienced in this population.