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Many children with complex chronic medical conditions (CCC), though living longer, die prematurely. Little is known about family economic hardship during end of life (EOL), nor associated differences in patterns of care. To describe the prevalence, experience, and characteristics of families of patients with CCC who report great economic hardship (GEH), and associations with end-of-life care patterns and suffering. We conducted a 183-item cross-sectional survey of bereaved parents of patients cared for at Boston Children's Hospital and chart reviews for each patient. Fifteen survey items on economic hardship related to financial and material hardships including food, housing, and utility insecurity. A total of 114 bereaved parents completed the survey (54% response rate) and economic hardship data was analyzed for 105. Nearly a fifth reported GEH. This group was characterized by fewer two parent households. Children from families with GEH had spent more time hospitalized than those without GEH. Economic burden on families of children with CCC correlates with higher health care utilization demonstrating the need for ameliorative resources and preventative measures. [ABSTRACT FROM AUTHOR]

Despite high rates of mortality among infants in the Southern U.S., little is known about the timing of pediatric palliative care (PPC), the intensity of end-of-life care, and whether there are differences among sociodemographic characteristics. To describe PPC patterns and treatment intensity during the last 48 hours of life among neonatal intensive care unit (NICU) patients in the Southern U.S. who received specialized PPC. Medical record abstraction of infant decedents who received PPC consultation in two NICUs (in Alabama and Mississippi) from 2009 to 2017 (n = 195) including clinical characteristics, palliative and end-of-life care characteristics, patterns of PPC, and intensive medical treatments in the last 48 hours of life. The sample was racially (48.2% Black) and geographically (35.4% rural) diverse. Most infants died after withdrawal of life-sustaining interventions (58%) and had do not attempt resuscitation orders documented (75.9%); very few infants enrolled in hospice (6.2%). Initial PPC consult occurred a median of 13 days after admission and a median of 17 days before death. Infants with a primary diagnosis of genetic or congenital anomaly received earlier PPC consultation (P = 0.02) compared to other diagnoses. In the last 48 hours of life, NICU patients received intensive interventions including mechanical ventilation (81.5%), CPR (27.7%) and surgeries or invasive procedures (25.1%). Black infants were more likely to receive CPR compared to White infants (P = 0.04). Overall, PPC consultation occurred late in NICU hospitalizations, infants received high-intensity medical interventions in the last 48 hours of life, and there are disparities in intensity of treatment interventions at end of life. Further research is needed to explore if these patterns of care reflect parent preferences and goal concordance. [ABSTRACT FROM AUTHOR]

Context: The majority of seriously ill children do not have access to specialist pediatric palliative care (PPC) services nor to clinicians trained in primary PPC. The Education in Palliative and End-of-Life Care (EPEC)-Pediatrics curriculum and dissemination project was created in 2011 in response to this widespread education and training need. Since its implementation, EPEC-Pediatrics has evolved and has been disseminated worldwide.Objectives: Assessment of past EPEC-Pediatrics participants' ("Trainers") self-reported PPC knowledge, attitudes, and skills; use of the curriculum in teaching; and feedback about the program's utility and future direction.Methods: From 2011 to 2019 survey of EPEC-Pediatrics past conference participants, using descriptive and content analyses.Results: About 172 of 786 (22% response rate) EPEC-Pediatrics past participants from 59 countries across six continents completed the survey. Trainers, including Master Facilitators (MFs), used the curriculum mostly to teach interdisciplinary clinicians and reported improvement in teaching ability as well as in attitude, knowledge, and skills (AKS) in two core domains of PPC: communication and pain and symptom management. The most frequently taught modules were about multimodal management of distressing symptoms. Trainers suggested adding new content to the current curriculum and further expansion in low-medium income countries. Most (71%) reported improvements in the clinical care of children with serious illnesses at their own institutions.Conclusion: EPEC-Pediatrics is a successful curriculum and dissemination project that improves participants' self-reported teaching skills and AKS's in many PPC core domains. Participating clinicians not only taught and disseminated the curriculum content, they also reported improvement in the clinical care of children with serious illness. [ABSTRACT FROM AUTHOR]

Context: Coronavirus disease 2019 (COVID-19) has impacted most elements of daily life, including the provision of support after a child's death and the experience of parental bereavement.Objectives: This study aims to examine ways in which COVID-19 has affected the bereavement experiences of parents whose children died of cancer before the pandemic.Methods: Parents who participated in a survey-based study examining the early grief experience were invited to complete a semistructured interview. During the interview, which focused on examining the current support for parents and other family members within the first several years after the child's death, participants were asked how COVID-19 has impacted their life and bereavement.Results: Fifteen of 33 eligible parents completed the interview; 14 were white and non-Hispanic, five were males. Parents participated an average of 19 (range 12-34) months after their child's death. COVID-19 was addressed in 13 interviews. Eleven codes were used to describe interview segments; the most commonly used codes were change in support, no effect, familiarity with uncertainty/ability to cope, and change in contact with care/research team.Conclusion: Parents identified multiple and variable ways-both positive, negative, and neutral-how COVID-19 has affected their bereavement. Many parents commented on feeling more isolated because of the inability to connect with family or attend in-person support groups, whereas others acknowledged their experience has made them uniquely positioned to cope with the uncertainty of the current situation. Clinicians must find innovative ways to connect with and support bereaved parents during this unique time. [ABSTRACT FROM AUTHOR]

1. Describe the roles shared by AYAs and parents of seriously ill children within the medical system 2. Describe the roles unique to AYAs and parents of seriously ill children and how these roles affect their care experiences Adolescentsand young adults (AYAs) with serious illnesses and parents of seriously ill children interact closely and frequently with the medical system. For AYAs who become the primary managers of their own medical care, this transition comes with the adoption of new roles and responsibilities previously held by their parent or guardian. To explore and compare the self-described roles of seriously ill AYAs parents of seriously ill children within the medical system. Semistructured interviews were conducted with parents and seriously ill AYAs at 2 centers from December 2018 to April 2019. An interdisciplinary team conducted thematic analysis. A comprehensive coding structure was created and each transcript coded independently by 2 coders achieving high interrater reliability (kappa > 0.85). We present findings related to self-described roles in the context of serious illness. The sample included 9 parents and 7 AYAs. Three primary role types were identified for both parents and AYAs: Informational roles included teacher, learner, and planner; social-emotional roles included sources of strength, support, or hope and worrier; action roles included advocate, decision maker, and communicator. Roles unique to parents included protector and medical care provider, and the role of medical care owner was unique to AYAs. AYAsbalance a similarly complex set of roles as parents of seriously ill children within the medical system. Although significant overlap exists between their self-described roles, the experiences of AYAs and parents in these shared roles can differ and present unique challenges. An understanding of the multidimensional roles held by AYAs and parents of children with serious illness may better equip healthcare providers to support these patients and families and provides insights into ways in which we can optimize their care experiences. [ABSTRACT FROM AUTHOR]

Context: Improving end-of-life care for children with complex chronic conditions (CCCs) requires parental perspectives. The vulnerability of bereaved parents has historically been a research barrier and studies describing their research participation experience are lacking.Objectives: To examine the research participation experience of bereaved parents of children with CCCs and to identify factors associated with distress or benefit.Methods: In this cross-sectional study, parents of deceased children who received care at Boston Children's Hospital between 2006 and 2015 completed survey questions describing their research participation experience after completing the Survey About Caring for Children with CCCs. Multivariable logistic regression was used to identify factors associated with perceived distress or benefit with participation. Free responses were analyzed using qualitative techniques.Results: One hundred fourteen (54%) of 211 eligible parents completed the survey a median of 3.9 years (interquartile range, 2.1-6.5) after their child's death. Most parents felt comfortable (78%) and reported benefit (88%) from survey participation. Only 6% of parents reported "a great deal" of distress with participation, and of those, 67% still found it beneficial. Being at least moderately spiritual was associated with benefit (adjusted odds ratio 7.12 [95% CI: 1.58-32.1]), while parental decisional regret was associated with distress (adjusted odds ratio 3.41 [95% CI: 1.33-8.72]). Benefit was the most common domain identified, with parents expressing appreciation for the opportunity to help others and share their story.Conclusion: A majority of parents responded to questions about their child's end-of-life care without significant distress. When present, distress was often accompanied by a perception that participation was beneficial. [ABSTRACT FROM AUTHOR]

Research on concurrent parent and patient-reported outcomes has primarily focused on reaching agreement. However, little is known about how to interpret and address discrepancies, which are not uncommon, between both viewpoints. To explore parents' perspectives on reporting about child symptoms and quality of life (QoL) concurrently with their child in the context of pediatric advanced cancer. This qualitative study was embedded in the PediQUEST Response Study, a randomized controlled trial of timely palliative care integration in children with advanced cancer. Over 18 weeks, study dyads (children ≥5 years old and one parent) completed weekly e-PROs assessing symptoms and QoL. Using a grounded theory approach, we ran a secondary analysis of end-of-study semi-structured parent interviews to examine their views on concurrent reporting of symptoms. Out of 110 randomized dyads included in this analysis, 77 parents completed an exit interview. Most were White non-Hispanic mothers. Parent reflections on concurrent reporting of child symptoms and QoL are summarized in the following themes: symptom experience is subjective, parent and child viewpoints are unique, parents ask fewer questions as they adapt to child treatment, and children may hesitate to share symptoms. To better grasp their child's experience, parents developed proactive communication strategies. Interviewed parents acknowledged that parent report and child self-report are distinct and complementary. Their perspectives provide guidance to clinicians and researchers about the implementation and interpretation of concurrent outcomes measurement in pediatric advanced cancer care. Clinicaltrials.gov NCT03408314. [ABSTRACT FROM AUTHOR]

1. Identify and mitigate barriers to initiating advance care planning discussions with adolescents and young adults with advanced cancer and their caregivers. 2. Utilize a brief video-based advance care planning video as part of a multimodal strategy to engage adolescents and young adults with cancer in goals of care discussions to promote preference-based end of life care. A brief video-based advance care planning (ACP) tool is effective in prompting further discussions among adolescents and young adults (AYAs) with cancer and their caregivers about their care preferences in advanced illness. Clinicians can use these tools as a gentle nudge to initiate discussions about care preferences. Advance care planning (ACP) discussions can help adolescents and young adults (AYAs) communicate their preferences to their caregivers and clinical team, yet little is known about willingness to hold conversations, content, and evolution of care preference. This mixed methods study of an advance care planning video-based tool in adolescents and young adults (AYAs) with cancer and their caregivers had two objectives: 1) to assess changes in AYA and caregiver care preferences and reasons for these changes over time, and 2) to explore factors influencing engagement in advance care planning discussions and content of these discussions in the three months following the intervention. Convergent, mixed methods design of data from a 1:1 pilot randomized control trial of a 10 minute video based tool. We phoned participants 3 months post-intervention to assess care preferences and query if any ACP conversations occurred. Quantitative analysis of care preferences immediately following and three months after the intervention synthesized with content analysis of real-time notes from the study team from the three month visit. Forty-five AYAs and 40 caregivers completed the 3-month follow-up. Nearly half of AYAs and caregivers changed their care preference from post-intervention to follow-up. Increased reflection and learning on the topic (n=45) prompted preference change, with participants often noting the nuanced and context-specific nature of these decisions (n=20). Most AYAs (60%) and caregivers (65%) engaged in ACP conversation(s), often with a family member. Disease-related factors (n=8), study participation (n=8), and a desire for shared understanding (n=6) were common reasons for initiating discussions. Barriers included disease status (n=14) and timing (n=12). ACP discussions focused on both specific wishes for treatment (n=26) and general conversations about goals and values (n=18). AYAs and caregivers acknowledged the complexity of ACP decisions, pinpointing obstacles and aids for these discussions. Clinicians should support a personalized approach to ACP that captures these nuances, promoting ACP as an iterative, longitudinal, and collaborative process. AYAs and caregivers recognize the complexity, nuance, and context-specific nature of ACP decisions, along with the associated emotional aspects. Future research can explore how clinicians can support these nuances among AYAs and promote ACP as an ongoing, longitudinal process. [ABSTRACT FROM AUTHOR]

Electronic patient-reported outcomes (e-PROs) in pediatric oncology may be useful to track patients' symptoms and quality of life (QoL). However, implementation in the clinical setting is limited and few studies have examined child and parent perspectives on e-PRO usage. This brief report aims to explore child and parent perspectives on the benefits of using e-PROs to routinely report on symptoms and QoL. We analyzed qualitative data embedded within the PediQUEST Response trial, a randomized controlled trial aimed at early palliative care integration for children with advanced cancer and their parents. Study dyads, made up of a child and their parent, completed weekly surveys assessing symptoms and QoL for 18 weeks, and were invited to participate in an audio-recorded exit interview to share study feedback. Interview transcripts were analyzed with a thematic analysis approach, with emergent themes centered on the benefits of e-PRO usage reported here. Of 154 total randomized participants, we collected 147 exit interviews representing 105 child participants. Interviewed children (n=47) and parents (n=104) were mostly White and non-Hispanic. Two predominant themes emerged regarding e-PRO benefits:1) raised reflection and awareness of self and others' experiences, and 2) increased communication and connection between parents and children or between study dyads and care teams through survey prompted discussion. Advanced pediatric cancer patients and their parents found benefit in completing routine e-PROs as they promoted greater reflection and awareness and increased communication. These results may inform further integration of e-PROs in routine pediatric oncology care. [ABSTRACT FROM AUTHOR]

Care for children as they near the end of life is difficult and very complex. More difficult still are the decisions regarding what interventions are and are not indicated during these trying times. Occasionally, families of children who are nearing the end of life disagree with the assessment of the medical team regarding these interventions. In rare cases, the medical team can be moved to enact a do not attempt resuscitation order against the wishes of the patient's parents. This article presents one such illustrative case and discusses the ethical issues relevant to such challenging clinical scenarios. The authors posit that such a unilateral do not attempt resuscitation order is only appropriate in very limited circumstances in pediatric care. Instead, focus should be placed on open discussion between parents and members of the clinical team, shared decision making, and maintenance of the clinician-parent relationship while simultaneously supporting members of the clinical team who express discomfort with parental decisions. The authors propose an alternative framework for approaching such a conflict based on clinician-parent collaboration and open communication. [ABSTRACT FROM AUTHOR]

Hospital-based pediatric palliative care (PPC) may help optimize referrals to community-based hospice and home-based palliative care (HBPC) for children with serious illness, yet little is known about their referral practices. To describe community-based program referrals from a PPC team, identifying factors associated with referral type, and potential misalignment between patient needs and referral received. Chart abstraction of patients seen in 2017 by the PPC team of a large, urban children's hospital, followed for at least 6 months or until death, including clinical and demographic characteristics, and referrals to hospice and HBPC. Of the 302 study-eligible patients, 25% died during the hospitalization of the first 2017 visit. Of the remaining 228 patients, 42 (18.4%) were referred to HBPC and 58 (25.4%) to hospice. Excluding patients referred to hospice care, only one-third with demographic eligibility were referred to HBPC; those seen in the ICU were least likely to be referred. Over half of the 58 patients referred to hospice died within the study period (n = 34, 58.6%); descendants were more likely to have cancer (P = 0.002) and less likely to have a neurologic (P = 0.021) diagnosis. Despite demographic eligibility, a minority of patients seen by a hospital-based PPC team received referrals for hospice or HBPC. Children discharged from an ICU and those with neurologic conditions may be at higher risk of missing referrals best aligned with their needs. Future research should identify and address causes of referral misalignment. Advocacy for programs adaptable to patients' changing needs may also be needed. [ABSTRACT FROM AUTHOR]

Bereaved parents may have heightened risk for decisional regret; however, little is known about regret early in bereavement. We characterized decisional regrets endorsed by parents of children who died from cancer within the first two years of their bereavement. We analyzed responses from a cross-sectional, dual site study of parents six to 24 months from their child's death. Parents indicated whether they had regrets about decisions made at the end of their child's life (yes/no/I don't know) and elaborated with free text. We used content analysis to identify recurrent categories in parents' responses. A total of 125 parents of 88 children completed the survey; 123 responded to the decisional regret item and 84 (63%) elaborated with free text. Forty-seven (38%) parents reported decisional regret(s), 61 (50%) indicated no regret(s), and 15 (12%) were unsure. Parental free-text responses related to five categories: treatments, including those pursued and/or not pursued (n = 57), decision-making processes (n = 35), relationships with their child and care team (n = 26), child suffering (n = 10), and end-of-life characteristics (n = 6). The relative frequency of categories was similar in parents with and without decisional regret, but self-blame was more common in responses from parents with decisional regret. Many bereaved parents endorse decisional regret in early bereavement. Treatments and decision-making processes were most cited among parents both with and without regret. Identifying factors associated with heightened parental risk of decisional regret using longitudinal study is an important focus of future research. [ABSTRACT FROM AUTHOR]

1. Identify the need to assess care preferences of young adults with advanced cancer, including assessment of their readiness to engage in advance care planning (ACP) 2. Describe ACP preferences, decisional conflict, and readiness to engage in ACP discussions of young adults with advanced cancer Young adults (YAs) with advanced cancer often receive intensive medical care at the end of life (EOL), yet it is unclear whether this care is goal concordant. Advance care planning (ACP) can facilitate goal-concordant care, yet little is known about YA EOL preferences and readiness for ACP. To assess the ACP preferences, decisional conflict, and readiness to engage in ACP discussions of YAs with advanced cancer. Analysis of baseline survey data from a pilot randomized controlled trial of an ACP tool for YAs aged 18-39 with cancer that had progressed beyond initial treatment. Among 40 YA participants, most identified as female (55%), White (82.5%), and non-Hispanic (90%). Most YAs preferred life-prolonging care (75%), with fewer opting for selective (12.5%) and comfort-focused measures (12.5%). While 67.5% of YAs reported wanting CPR and 55% wanting intubation in the setting of advanced uncurable disease, a proportion reported they were unsure (CPR, 12.5%; intubation, 20%). The average decisional conflict (SURE scale) score was 2.8 (SD = 1.42; 4 = no conflict, 0 = high conflict). Although 52.5% had designated a healthcare proxy and 37.5% had discussed their wishes with their proxy, few had talked with their doctor (12.5%) or signed official documents specifying their wishes (12.5%). However, some reported they were either thinking about or planning to talk with their proxy (22.5%) or doctor (35%), or sign official documents specifying their wishes (37.5%) within the next 6 months. Most YAs with advanced cancer indicated a preference for life-prolonging treatments even in very advanced disease, yet many reported conflict about the best choice for themselves. Although many YAs have not yet engaged in ACP discussions and actions, they report readiness to do so. By better understanding YA preferences and attitudes toward ACP discussions, clinicians and researchers can work to ensure patient wishes are communicated and care is goal concordant. [ABSTRACT FROM AUTHOR]

Outcomes: 1. Upon completion of this session, participants will be able to describe the role of intervention in the pediatric palliative care population and practice variations based on illness severity/type 2. Upon completion of this session, participants will be able to analyze barriers to collaboration between surgical and palliative care teams and devise contextually relevant solutions Seriously ill children receive both surgery and pediatric palliative care (PPC), but the nature of interactions between surgical and PPC teams is unknown. This study describes PPC pediatricians' experiences with and attitudes about PPC in surgical patients. A survey was administered to physician members of the Pediatric Interest Group of the American Academy of Hospice and Palliative Medicine. Seventy-one PPC physicians (69% female, 10.1 mean years of experience, 66% in academic practice) participated. Most (67%) reported that surgeons rarely/never consult the PPC service despite 93% believing it easy to do so and many (59%) having patients with serious or terminal surgical conditions. Most (84%) agreed that PPC and surgical interventions need not be mutually exclusive, and that invasive operations (84%) and even life-sustaining measures such as ECMO (67%) could be forms of PPC. PPC physicians report that surgeons have perceptions that limit PPC consultation, including parents will think the surgical team is giving up (62%), family hope will be undermined (53%), the PPC service provides no added value (46%), PPC and surgical teams have incongruent philosophies (45%), and PPC consultation will be unacceptable to parents (45%). PPC physicians perceive their services to be accessible but underutilized by surgeons caring for seriously ill children and perceive many barriers to consultation. They believe surgical intervention is compatible with and in some instances may be a form of palliative care. Findings suggest that improving engagement between surgical and PPC teams may be important to increasing PPC utilization for surgical patients. Future studies will include parallel surveys of pediatric surgeons to better delineate barriers to and opportunities for greater PPC integration in surgical care. [ABSTRACT FROM AUTHOR]

Context: Many adolescents and young adults (AYAs; 15-39 years) with cancer receive high intensity (HI) care at the end of life (EOL). Palliative care (PC) involvement in this population is associated with lower risk of HI-EOL care. Whether this association differs by specialized versus generalist PC (SPC, GPC) is unknown.Objectives: (1) To evaluate whether SPC had an impact on the intensity of EOL care received by AYAs with cancer; (2) to determine which subpopulations are at highest risk for reduced access to SPC.Methods: A decedent cohort of AYAs with cancer who died between 2000-2017 in Ontario, Canada was identified using registry and population-based data. The primary composite measure of HI-EOL care included any of: intravenous chemotherapy <14 days from death; more than one ED visit, more than one hospitalization or any ICU admission <30 days from death. Physician's billing codes were used to define SPC and GPC involvement.Results: Of 7,122 AYA decedents, 2,140 (30%) received SPC and 943 (13%) received GPC. AYAs who died in earlier years, those with hematologic malignancies, males and rural AYAs were least likely to receive SPC. No PC involvement was associated with higher odds of receiving HI-EOL care (odds ratio (OR) 1.5; p<0.0001). However, SPC was associated with the lowest risk of HI-EOL care (OR SPC versus GPC 0.8; p=0.007) and decreased odds of ICU admission (OR 0.7; p=0.006).Conclusion: SPC involvement was associated with the lowest risk of HI-EOL care in AYAs with cancer. However, access to SPC remains a challenge. [ABSTRACT FROM AUTHOR]

Context: Few data exist regarding clinician preparedness to participate in advance care discussions (ACD) and the practices surrounding these discussions for children with life-threatening conditions. Objectives: We sought to understand pediatric clinician preparedness to participate in ACD and the practices surrounding these discussions. Methods: A survey was administered to assess clinician attitudes and behaviors regarding ACD. Results: Two hundred sixty-six clinicians (107 physicians and 159 nurses) responded to the survey (response rate 53.6%). Seventy-five percent of clinicians felt prepared to participate in ACD. Most clinicians believed they were prepared to express empathy (98.8%), discuss goals of care for an adolescent patient (90.3%), and elicit a parent's hopes (90.3%). Conversely, several felt unprepared to discuss resuscitation status with school-aged (59.7%) and adolescent (48.5%) patients and to conduct a family conference (39.5%). The most frequent topics addressed were: parents' understanding of the patient's illness (75.5%), primary goals of the parent (75.1%), and the parents' understanding of prognosis (71.1%). Conversely, the topics least commonly discussed were as follows: belief system of the patient/family (22.0%), patient's hopes (21.2%), and the patient's perceptions of his/her quality of life (19.8%). Notably, 40% of clinicians believe that caring for patients with poor prognoses is depressing, and this was more common among less-experienced clinicians (P = 0.048). Conclusion: Many clinicians believe they are prepared to participate in ACD, but practices are not consistent with expert recommendations for optimal ACD. Educational interventions aimed at improving clinician knowledge, attitudes, and behavior, and greater clinician support may enhance health care provider ACD preparedness and skills. [ABSTRACT FROM AUTHOR]

Context: Increasingly, chronically critically ill (CCI) infants survive to discharge from Neonatal Intensive Care Units (NICUs). Little is known about their care intensity and the primary and specialty palliative care families receive at and following discharge.Objectives: To describe care intensity and primary and specialty palliative care received by NICU CCI infants at discharge and one year.Methods: Chart abstraction of CCI infants at three academic centers discharged at ≥42 weeks corrected gestational age with medical technology between 2016 and 2019, including demographics, care intensity, and primary and specialty palliative care received at discharge and one year.Results: Among 273 infants, NICU median stays were 45 [IQR 23-92] days. Primary diagnoses included congenital and/or genetic conditions (68.5%), prematurity (28.2%), and birth events (3.3%). At discharge, surgical feeding tubes (75.1%) and tracheostomies (24.5%) were the most common technologies. Infants received a median of 6 [IQR 4-9] medications and were followed by a median of 8 [IQR 7-9] providers. At one year, 91.4% continued with one or more technologies, similar numbers of medications and specialty providers. In the NICU, nearly all families had social work involvement, 78.8% had chaplaincy and 53.8% child life; 19.8% received specialty palliative care consultation. At one year, only 13.2% were followed by palliative care.Conclusions: CCI infants receive intensive medical care including multiple medical technologies, medications, and specialty follow up at discharge and remain complex at one year of life. Most receive primary interprofessional palliative care in the NICU, however these infants and their families may have limited access to specialty palliative care in the short- and long-term. [ABSTRACT FROM AUTHOR]

1. Develop ideas about ways to integrate palliative care into the care of children, adolescents, and young adults with advanced cancer. 2. Develop ideas about ways to integrate electronic patient reported outcome measures into the care of children, adolescents, and young adults with advanced cancer. PediQUEST Response is an intervention for children with advanced cancer that combines e-PROMS and specialty palliative care integration. Parents of children receiving the intervention reported better child quality of life compared to controls. This is the first RCT to show the positive impact of palliative care in pediatric oncology. Evidence about the impact of specialty pediatric palliative care (SPPC) is low.(1) Pediatric Quality of Life and Evaluation of Symptoms Technology Response to Pediatric Oncology Symptom Experience (PQ-Response) aims to integrate SPPC into the routine care of pediatric advanced cancer patients. To evaluate whether PQ-Response, compared to usual care, improves patient's health related quality of life (HRQoL) as reported by parents. Multisite, randomized (1:1; allocation concealed), controlled, un-blinded trial comparing PQ-Response (intervention) to usual cancer care (control) conducted at five large pediatric cancer centers.(2) Participants: Children ≥2 years old (+1 parent) with advanced cancer, SPPC "naïve," and receiving longitudinal care at the site. Interventions: PQ-Response combined the use of the PQ-web/app to provide feedback of patient- and parent-reported child symptoms and HRQoL to families and clinicians with integration of SPPC. Usual Cancer Care: participants answered PQ-surveys (no feedback provided) and received usual care. Procedures: Patients ≥5 years old and parents answered weekly PQ-Surveys assessing symptom distress and HRQoL (Pediatric Quality of Life Inventory 4.0 (PedsQL)). After a 2-week run-in period, dyads who answered ≥2 PQ-surveys/participant were randomized and followed for 16-weeks. Primary outcome: mean parent-reported patient HRQoL score (0-100, 100 better) over 16-weeks. Child-reported outcomes and symptom distress are not reported here. We enrolled 196 patients, 154 were randomized; analysis included 152 who reported ≥1 HRQoL score during follow-up (74 Intervention/ 78 Control). Child's mean age was 11 years, 49% were female, 45% had brain tumors, 39% solid tumors, and 16% hematologic malignancies. PQ-Response was associated with improvements in PedsQL total (3.4; 95%CI: 0.5, 6.4; p=0.024) and physical scores (4.5; 95%CI: 0.3, 8.7; p=0.034). PQ-Response was associated with improvement in child HRQoL. Integration of SPPC combined with routine feedback about symptoms and HRQoL leads to better child quality of life in pediatric advanced cancer. ClinicalTrials.gov (NCT03408314) – NINR/NIH Pediatrics Palliative care in oncology [ABSTRACT FROM AUTHOR]

1. Identify parental sociodemographic and child treatment and end-of-life factors associated with preserved parental social functioning, a key outcome in early bereavement. 2. Recognize elements of supportive interventions that may augment early bereavement social functioning in parents of children who died from cancer. Social functioning in bereaved parents is a key marker of psychosocial well being in early bereavement. Parental social functioning was associated with feeling prepared for their child's EOL and the absence of significant financial hardship. Interventions focused on reducing financial hardship and preparing families for EOL may improve bereavement outcomes. Parents who experience the death of a child from cancer experience life-long grief and are at risk of poor psychosocial and physical health outcomes. Early supportive interventions may improve parental social function, a strong marker of psychosocial wellbeing, even in the setting of ongoing distress. Yet we do not know which pre-death factors are associated with early bereavement parental social functioning and would therefore be potential intervention targets. In this study, we sought to determine which parental sociodemographic and child treatment and EOL characteristics were associated with parental social functioning early in bereavement. Parents of children from two centers who died from cancer 6 to 24 months prior were mailed a survey that included validated tools and additional Likert-scale based questions. We used univariable and multivariable logistic regressions to examine which parental sociodemographic and child treatment and end-of-life (EOL) factors were associated with preserved social functioning within the first 2 years following a child's death (defined as T score of ≥40 on the PROMIS Ability to Participate in Social Roles and Activities-Short Form). We assessed for elements household material hardship (HMH) using two questions and dichotomized responses into 'financial stability' (i.e., no HMH) and 'at least one element of HMH' identified. 128 parents representing 88 children completed the survey; most respondents identified as Female (63%), and White non-Hispanic (88%). In univariate analysis, white racial identified, secondary caregiver status, high satisfaction with family relationships, financial stability, ability to plan location of death, and feeling prepared for EOL circumstances were associated with preserved parental social functioning. In multivariate modeling, parents with financial stability were over 4x more likely than those with at least one element of HMH (adjusted odds ratio (AOR) of 4.73 (95% CI 1.64, 13.69), p< 0.004), and those that who were 'prepared for their child's end-of-life circumstances' were over 5x more likely than those parents who were 'not prepared' (AOR 5.46 (95% CI 1.87,15.87), p< 0.002) to have preserved social functioning. Preserved parental social functioning in early bereavement is associated with feeling prepared for their child's EOL and the absence of significant HMH. Interventions focused on educating parents on what to expect as their child nears EOL and on offsetting financial hardships may improve parental psychosocial and health outcomes in bereavement. This is the first study examine the role of pre-death factors on parental bereavement and novel in the focus, not on negative psychosocial outcomes, but instead on those parents who have preserved social functioning despite living through the death of their child. We have identified targets for future supportive interventions in cancer-bereaved parents. Family caregivers,/Pediatrics [ABSTRACT FROM AUTHOR]

1. After engaging with the research presentation, participants will apply and further refine the concepts of "doing instead," "flexing to accommodate," and "imagined future person," in research with children with cancer and other seriously ill children receiving disease-modifying treatments that may threaten social isolation and changes to other identity-forming/affirming activities. 2. During and after engaging with the research presentation, participants will critically consider strengths and weaknesses of the employed research methods (data generation via semi-structured interviews, theoretical sampling, and use of constant comparative analysis, wherein ongoing analysis influences data gathering) and theoretical sufficiency of the proposed concepts. Patients, parents, and clinicians promote and preserve quality of life (QoL) during childhood cancer treatment through "doing instead" (pursuing alternative meaningful activities) and "flexing to accommodate" (tailoring treatment sequence/setting to allow for meaningful activities). Guarding an imagined future person, who has lived beyond cancer, influences decisions to flex/not flex. Real-world strategies employed to promote and preserve quality of life (QoL) during childhood cancer are incompletely conceptualized,[ref 1-4] hampering measurement and intervention. We sought to delineate strategies to promote and preserve QoL during childhood cancer treatment. We conducted constant comparative inductive qualitative analysis informed by Grounded Theory precepts.[ref 5,6] Three non-clinicians (AFM, SES, ACR) conducted 70 semi-structured interviews with theoretically sampled participants (04/01/2021-09/01/2022) who were (1) English and/or Spanish-speaking adolescents 13- < 18 years old diagnosed with cancer within the prior 18 months, (2) parents of such children (2- < 18 years), and (3) pediatric oncology and/or palliative care clinicians who spent >=20% time caring for such children at two large U.S. centers. AFM & AMF wrote memos and coded independently and then jointly, building to the emergent categories. Nineteen parents, 6 adolescents and 45 clinicians [chaplains (n=4), child life specialists (n=4), nurses (n=11), nurse practitioners (n=7), physicians (n=13), psychologists (n=3), and social workers (n=3) participated. Participants' efforts took two main forms: (1) "doing instead," defined as alternative identity-preserving activities, e.g. a former star baseball player with fatigue and steroid myopathy during leukemia treatment becomes the team's student manager; and (2) "flexing to accommodate," wherein tailoring treatment sequence allows space/time for meaningful activities, e.g. rescheduling chemotherapy to enable travel. Participants imagined a future child/adolescent/adult who existed beyond cancer, seeing themselves as guardians of this uncertain future. "Flexing" was perceived as a potential threat to achieving the imagined future person. QoL during childhood cancer treatment is promoted and preserved through "doing instead" and "flexing to accommodate," while weighing perceived potential impacts on an imagined future iteration of the child. Adopting concepts of "doing instead" and "flexing to accommodate," plus explicit discussions of how such strategies might affect the imagined future may enhance communication and goal-setting. These concepts may also aid development of richer QoL interventions. Pediatrics/Qualitative and mixed methods research [ABSTRACT FROM AUTHOR]

1. Learners will identify potential opportunities related to their clinician roles that may facilitate psychosocial resources for families facing childhood cancer. 2. Learners will demonstrate increased knowledge related to systemic obstacles in the provision of psychosocial care for African American families with children diagnosed with cancer. Nurses have the collective voice to wield systemic change particularly as African American experiences in pediatric psychosocial research have been systematically excluded. To mitigate some of the healthcare inequities African Americans face, this presentation will address potential gaps in pediatric oncology nurses' role as interventionist to invigorate discussions about challenges when providing psychosocial care to African American families. Pediatric oncology nurses have the greatest potential to identify changes in parent psychosocial health that would benefit from intervention and provide psychosocial care given their longitudinal presence.1-3 To date, there has been almost no research focused on requisite knowledge and skills to deliver nurse-led psychosocial interventions to African American parents who face disparate distress due to structural racism (e.g., single-parent households, racial discrimination, income poverty, and unemployment). To elicit pediatric oncology nurses' perspectives on their role as interventionists while providing psychosocial care to African American families of children with cancer. Guided by tenets of grounded theory, we conducted a multisite qualitative study employing constant comparative inductive analysis. Audio-recorded 30-60 minute focus groups and individual interviews were conducted via secure video conference with purposively sampled pediatric oncology nurses. Collectively, 22 pediatric oncology nurses (mean [SD] age, 36 [8.6] years; 22 females [100%]) participated in 2 focus groups (4 participants each) and 14 individual interviews. Most were White (n=19, 86%), non-Hispanic (n=21, 95%), full-time (n=16, 72%), and bachelors-prepared (n=20, 91%) with an average of 12 years in pediatric oncology. Four overarching themes emerged: 1) Recognizing structurally differential care (historical trauma, race discordant care, implicit/explicit biases, stigmatizing language) 2) Facilitation of psychosocial resources and care team dynamics (longitudinal space, creating safe spaces, open communication with families), 3) Building back African American families' fragmented trust (holistic care, appreciating African American families' experiences) and 4) Inadequacies to psychosocial care provision (lack of nursing experience, competing work demands, difficulty with serious illness conversation). These experiences bolstered or obstructed their psychosocial care provision to African American families with children diagnosed with cancer. Nurses identified potential areas for nurse-targeted interventions (e.g., enhancement of nurse-parent interactions, mitigating interpersonal racism,4 learning serious illness conversation) to disrupt factors contributing to disparities in pediatric psychosocial care. Communication [ABSTRACT FROM AUTHOR]

1. Describe processes to facilitate systematic social needs evaluation in pediatric advanced cancer. 2. Define household material hardship and associations with parent outcomes. Our data demonstrate that it is feasible to screen for social needs in pediatric advanced cancer and that over half of families report unmet resource needs (housing, transportation, utilities, or food) at this inflection point in care. Parent caregivers living in poverty experience more distress during their child's cancer treatment compared to parents without poverty exposure. Our prior research demonstrates that household material hardship (HMH)– a modifiable measure of poverty including housing, food, transportation, and utility insecurities– is independently associated with severe psychologic distress among parents of children with newly diagnosed acute leukemia. The feasibility of systematic social needs screening to identify and address similar disparities in pediatric advanced cancer has not been established. Parents of children (< 18 years) with advanced cancer (defined as poor prognosis, new relapse/progression, early phase trial enrollment, or new palliative care consult) receiving care at a large pediatric cancer center were approached for participation following permission from the primary palliative care and/or oncology teams. Enrolled participants completed a two-timepoint social needs evaluation at enrollment and 12-weeks from initial survey completion. Surveys were completed electronically and are available in English and Spanish (and other languages with an interpreter). Feasibility was defined as >75% consent rate and >75% complete HMH data. From January through September 2023, N=37 potentially eligible participants were identified; primary teams declined approach for 5 participants. Among 32 eligible participants, 28 consented to participation (88%) and 27 have completed initial surveys (96%) with no missing HMH data. Participants include 22 mothers (81%). Self-reported racial/ethnic identities include 6 Asian participants (22%), 3 Black/African American participants (11%), and 5 Hispanic participants (19%). Over half of participants (N=14) report HMH. All eligible participants completed 12-week follow-up (N=9); 4 participants were ineligible due to their child's death. Systematic social needs screening is feasible in pediatric advanced cancer. Over half of families in this cohort report unmet basic resource needs compared to 1 in 3 families at childhood cancer diagnosis. Interventions to address social needs are urgently needed in pediatric advanced cancer. Scientific Research / Diversity, Equity, Inclusion, Belonging, Justice [ABSTRACT FROM AUTHOR]

1. Explain the role pediatric surgeons play in the care of children receiving palliative care 2. Express reactions to the data and propose how a new understanding of the incidence of surgical care in pediatric palliative care could change your practice of palliative care The nature of surgical care provided to patients receiving pediatric palliative care (PPC) is not defined, impeding clarification of the role of surgeons in caring for this population and uncovering an opportunity for more informed counseling regarding surgical intervention in palliative care. We sought to characterize the incidence, type, and likely purpose of surgical procedures provided to patients receiving PPC. Analyses included children enrolled in a multicenter prospective cohort study of patients receiving PPC. Data were collected between April 2017 and March 2021 and included administrative data regarding all surgical procedures received by the child. Patient demographic characteristics were collected directly from patients' parents. Procedures were categorized by likely purpose. Descriptive and regression analyses were performed. PPC patients (n = 602) averaged 7.1 years of age (SD 6.9). Most were White (72.7%) and non-Hispanic (84.7%) with at least one complex chronic condition (CCC) (99.0%). After initiation of PPC, 61.6% (n = 371) of patients underwent at least one operation (range: 1–71), with a median of 5 (IQR: 2–10). Hardware and catheter placement (38.6%) and biopsy (32.9%) were most common, although patients also underwent resection (9.2%), exploration (5.7%), repair of congenital conditions (cardiac 4.1%, noncardiac 2.4%), and rescue operations (2.4%). The most common operations were feeding tube exchange (6.9%), bone marrow biopsy (3.4%), pyloromyotomy (3.1%), and duodenal resection (2.6%). The odds of surgery did not differ by sex, race, or ethnicity (p >.05), but were associated with increasing age (0.19 more operations per year of age; 95% CI 0.09-0.28; p =.002 and having more CCC (for each additional CCC, the number of operations increased by 1.33; 95% CI 1.02-1.64, p < 0.001). Pediatric surgery is a significant component of the care of children receiving palliative care. Given our findings, developing surgeons' understanding of palliative care and building collaborative relationships between surgical and palliative care teams caring for this shared population is warranted. [ABSTRACT FROM AUTHOR]

Parents of children who die in the pediatric intensive care unit (PICU) carry memories of their child's suffering throughout a lifelong grieving experience. Given their prolonged time at the bedside, PICU nurses are poised to attend to dying children's suffering. We aimed to explore how PICU nurses identify, assess, and attend to EOL suffering. Interpretive descriptive qualitative study with thematic analysis of virtual focus groups from a geographically diverse sample of PICU nurses. Nurses participated in five focus groups (N = 19). Most identified as White (89%) females (95%) with a range of 1-24 years of PICU experience and involvement in >10 EOL care cases (89%). Nurses described approaches to suffering within five themes: 1) Identifying and easing perceptible elements; 2) Recognizing and responding to subtleties moment-to-moment; 3) Acclimating to family interdependence; 4) Synchronizing nurse in-the-room insight with systemic complexity; and 5) Accounting for ambiguity. Nurses detailed elements of suffering they could "fix" with straightforward, external interventions (e.g., pain medication). More complex tasks like optimizing care within familial and interprofessional team relationships while navigating psychosocial responses from children and families challenged nurses. Nurses attempted to minimize EOL suffering amidst ambiguity and complexity using internal processes including managing the environment and titrating moment-to-moment care. While physical suffering may be remedied with direct nursing care, holistically attending to EOL suffering in the PICU requires both bolstering external processes and strengthening PICU nurses' internal resources. Improving psychosocial training and optimizing interprofessional care systems could better support dying children and their families. [ABSTRACT FROM AUTHOR]

Context: Prospective cohort studies of individuals with serious illness and their family members, such as children receiving palliative care and their parents, pose challenges regarding data management.Objective: To describe the design and lessons learned regarding the data management system for the Pediatric Palliative Care Research Network's Shared Data and Research (SHARE) project, a multicenter prospective cohort study of children receiving pediatric palliative care (PPC) and their parents, and to describe important attributes of this system, with specific considerations for the design of future studies.Methods: The SHARE study consists of 643 PPC patients and up to two of their parents who enrolled from April 2017 to December 2020 at seven children's hospitals across the United States. Data regarding demographics, patient symptoms, goals of care, and other characteristics were collected directly from parents or patients at 6 timepoints over a 24-month follow-up period and stored electronically in a centralized location. Using medical record numbers, primary collected data was linked to administrative hospitalization data containing diagnostic and procedure codes and other data elements. Important attributes of the data infrastructure include linkage of primary and administrative data; centralized availability of multilingual questionnaires; electronic data collection and storage system; time-stamping of instrument completion; and a separate but connected study administrative database used to track enrollment.Conclusions: Investigators planning future multicenter prospective cohort studies can consider attributes of the data infrastructure we describe when designing their data management system. [ABSTRACT FROM AUTHOR]

Context: Since the publication of the IMPaCCT project in 2007, much effort has been made to develop new approaches to pediatric palliative care (PPC). Fifteen years later, it is time to redefine the standards in PPC.Objectives: An international group of experts in PPC has revised the standards in PPC through the GO-PPaCS project (Global Overview - PPC Standards). The goal was to update the PPC standards considering the specificity of different settings, resources, and emerging challenges. The present document is intended to reach all people directly or indirectly involved in PPC.Methods: A literature review in MEDLINE was conducted to expand on the fundamental points and current standards on PPC and to cover an international setting. The literature search (updated on the 15th of April 2021) was carried out using different combinations of keywords and focusing on papers published in English over the past 5 years (2016-2020), but older articles were considered when relevant. The consensus on the fundamental points, standards of care and paper contents was reached by open discussion.Results: Fundamental points were defined regarding the definition of PPC, eligibility criteria and the magnitude of the need for PPC, while standards were redefined for the following six areas: 1) clinical, developmental, psychological, social, ethical and spiritual needs; 2) end-of-life care; 3) care models and settings of care; 4) PPC in humanitarian emergencies; 5) care tools; and 6) education and training for healthcare providers.Conclusion: The present document, developed with the contribution of an international group of experts from different countries, experiences and models of care, provides fundamental points and standards for a wider implementation of PPC worldwide. [ABSTRACT FROM AUTHOR]

Context: Children, adolescents and young adults with cancer continue to experience significant symptom suffering throughout their illness.Objectives: To identify barriers to effective symptom management in pediatric advanced cancer.Methods: Using a qualitative multiple case study we refined the Pediatric Quality of Life and Evaluation of Symptoms Technology Response to the Pediatric Oncology Symptom Experience (PediQUEST Response), a pediatric palliative care (PPC) intervention. Twenty-three children aged ≥2 years old with advanced cancer, their parents and primary and PPC clinicians were enrolled. Children and parents reported symptoms weekly over 4-months using the Memorial Symptom Assessment Scale (MSAS) administered by an electronic system (PediQUEST). When symptom distress episodes (SDEs) were reported (MSAS symptom score ≥33) we studied symptom management processes using interviews of family members/clinicians, and chart abstractions. Data were coded and analyzed using grounded theory and NVivo software.Results: Children reported 308 SDEs within 193 surveys and parents 529 SDEs in 165 surveys administered. We conducted 85 and 88 interviews with families and clinicians respectively. While we confirmed the presence of known barriers, we identified a prominent theme, that symptoms were "normalized." Patients, parents, and all clinicians, including PPC specialists, got accustomed to high symptom burden and lacked expectations that distress could be alleviated. We defined "normalization of symptoms," as the process by which symptom related suffering is appraised as unavoidable.Conclusion: Normalization of symptoms is a pervasive barrier enacted by all involved in caring for children with advanced cancer. Strategies to overcome normalization are critical to ease child distress. [ABSTRACT FROM AUTHOR]

Content: Parents who experience the death of a child have significantly higher rates of psychological distress compared to non-bereaved parents. The effectiveness of current bereavement supports, and ideal types and timing of future supportive interventions aimed at improving negative sequalae are relatively unknown.Objectives: This interview-based study explored the early bereavement needs of 15 parents of children who died from cancer, including the bereavement support received, perceived barriers to support, and desired additional supportive interventions.Methods: Parents who previously participated in a survey-based study examining the early grief experience were invited to partake in a semi-structured interview. Interviews focused on examining bereavement support for parents within the first three years following the child's death and barriers to adequate support; transcribed interviews underwent thematic analysis.Results: Fifteen parents completed the interview; 14 parents (93%) were White and non-Hispanic, five were male. Parents participated on average 19 months (range 12-34) following their child's death. Parents identified numerous supports that were and were not helpful. Augmented informative materials, professional, organized, and religious/spiritual support, and connections with others were identified as key elements in a supportive intervention.Conclusion: Bereaved parents identified many supportive needs, most of which already exist at the community and institution level. Suggestions outlined by parents may provide a useful framework for developing novel supportive interventions and ways to tailor strategies to support bereaved parents. Researchers must continue to seek feedback from bereaved parents and families about their met and unmet needs and use this information to design early supportive bereavement interventions. [ABSTRACT FROM AUTHOR]

Context: Parents of patients with a serious illness experience psychological distress, which impacts parents' wellbeing and, potentially, their ability to care for their children. Parent psychological distress may be influenced by children's symptom burden and by families' financial difficulty.Objectives: This study examined the associations among parent psychological distress, parent-reported patient symptoms, and financial difficulty, seeking to determine the relative association of financial difficulty and of patient symptoms to parent psychological distress.Methods: Cross-sectional study of baseline data for 601 parents of 532 pediatric palliative care patients enrolled in a prospective cohort study conducted at seven US children's hospitals. Data included self-reported parent psychological distress and parent report of child's symptoms and family financial difficulty. We used ordinary least squares multiple regressions to examine the association between psychological distress and symptom score, between psychological distress and financial difficulty, and whether the degree of financial difficulty modified the relationship between psychological distress and symptom score.Results: The majority of parents were moderately to severely distressed (69%) or severely distressed (17%) and experienced some degree of financial difficulty (65%). While children's symptom scores and family financial difficulty together explained more of the variance in parental psychological distress than either variable alone, parental distress was associated more strongly, and to a larger degree, with financial difficulty than with symptom scores alone.Conclusions: Parent psychological distress was associated with parent-reported patient symptoms and financial difficulty. Future work should examine these relationships longitudinally, and whether interventions to improve symptom management and ameliorate financial difficulties improve parental outcomes. [ABSTRACT FROM AUTHOR]

Context: Few studies have explored the impact of the Coronavirus Pandemic (COVID-19) on the care of seriously ill children which may be especially affected due to the child's vulnerability, complexity of care, and high reliance on hospital-based care.Objective: To explore parental and adolescent perspectives on the impact of COVID-19 on care of seriously children.Methods: We recruited a convenience sample of families of seriously ill children between September and December 2020. The study involved a semi-structured interview through Zoom followed by an online sociodemographic survey. Interviews were transcribed and coded using the constant comparison method. The sample intended to represent diversity in child age and diagnoses, and family sociodemographic characteristics.Results: Sixty-four families were approached; 29 enrolled (response rate 45%), including 30 parents and three AYAs. Most parents and AYAs identified as white (62%). Some families reported new financial hardships, with 17.2% having difficulty paying bills after March 2020 compared to 6.9% before. Emerging themes from interviews included additional roles parents managed due to cancelled services or shifting to telehealth, increased isolation, high emotional distress due increased in-home demands, uncertainty, and visitor restrictions in medical facilities, and benefits and challenges to telehealth. One positive outcome was the use of a hybrid care model whereby families choose telehealth appointments and in-person services, when necessary.Conclusion: Families caring for seriously ill children during COVID-19 face increased challenges. Health systems should consider long-term telehealth/in-person hybrid care models that have potential to improve access to and satisfaction with care. [ABSTRACT FROM AUTHOR]

Context: Children with cancer and cardiac disease suffer with high symptom burden at end of life (EOL). Little is known about the EOL experience for children with other complex chronic conditions (CCCs).Objectives: To evaluate symptoms and suffering at EOL for children with noncancer, noncardiac CCCs as well as parental distress related to child suffering.Methods: This study is a secondary data analysis of a cross-sectional, single-center survey of bereaved parents of children with CCCs who died between 2006 to 2015. The primary outcome was parent-reported child suffering in the final two days of life.Results: Among 211 eligible parents contacted for participation, 114 completed the survey, and 99 had complete primary outcome data (participation rate 47%). Most children had congenital/chromosomal (42%) or progressive central nervous system (22%) conditions. Twenty-eight percent of parents reported high child suffering in the final two days of life. Parents reported that pain and difficulty breathing caused the greatest suffering for children and distress among themselves. Some parents also reported distress related to uncertainty about child suffering. Parents were less likely to report high child suffering if they were confident in knowing what to expect when their child was dying (AOR 0.20; 95% CI 0.07-0.60) or felt prepared for medical problems at EOL (AOR 0.12; 95% CI 0.04-0.42).Conclusion: Nearly one-third of parents of children with CCCs report high suffering in their child's final days of life. Parent preparedness was associated with lower perceived child suffering. Future research should target symptoms contributing to parent and child distress and assess whether enhancing parent preparedness reduces perceived child suffering. [ABSTRACT FROM AUTHOR]

Context: Interprofessional education (IPE) prepares clinicians for collaborative practice, yet little is known about the effectiveness of postgraduate IPE.Objectives: This is the first study to describe educational outcomes of an interprofessional fellowship in pediatric palliative care. Objectives were to understand the experiences of postgraduate trainees in an interprofessional, clinical environment and to evaluate program effect on interprofessional competencies.Methods: In this mixed-methodology study, we surveyed former fellows from 2002 to 2018 about their fellowship experience and perceived change in interprofessional skills. We performed qualitative semantic content analysis of fellows' responses about learning in an interprofessional context. We compared fellows' self-rated ability (5-point Likert scale), before and after fellowship, in 10 interprofessional competencies selected from the Interprofessional Education Collaborative's core competencies.Results: Response rate was 87% (41/47). Fifty-one percent of respondents were physicians, 29% were social workers, and 20% were nurse practitioners. Respondents reported significant improvement in all 10 competencies, with summed mean scores of 2.8 ± 0.6 prefellowship ("not very well prepared") and 4.4 ± 0.4 postfellowship ("very well" to "extremely well prepared") (t = 15.6, P< 0.0001). Effect size for each competency was greater than 1.9 (strong positive impact). The fellowship experience was characterized by dynamic educational relationships: peer relationships with interprofessional co-fellows, mentoring relationships with faculty, clinical relationships with patients and families, and collaborative relationships with the healthcare system. Benefits and challenges of IPE were associated with interprofessional roles, teamwork, patient care, and educational needs.Conclusion: This study demonstrates the feasibility and effectiveness of an interprofessional postgraduate fellowship in preparing clinicians for collaborative practice. [ABSTRACT FROM AUTHOR]

Context: Parents desire more opportunities for advance care planning (ACP), however, large-scale adoption of ACP for seriously ill children remains unrealized. Little is known about current approaches to ACP and strategies to circumvent existing barriers to ACP provision.Objective: To explore multidisciplinary clinician perceptions about perceived barriers and strategies to improve ACP provision.Design: Qualitative study including focus groups conducted with multidisciplinary clinicians at two centers from December 2018-April 2019. Iterative multi-stage thematic analyses were utilized to identify key contexts and themes pertaining to current approaches to ACP, as well as clinician perspectives on ACP barriers and improvement strategies.Results: Thirty-five clinicians (physicians, nurses, and psychosocial clinicians) participated in identifying both clinician and perceived patient and family barriers to initiating and engaging in ACP discussions, including mixed messaging, lack of knowledge of patient and family goals, prognostic uncertainty, poor prognostic awareness, unstandardized documentation, and family dynamics. Clinicians also identified strategies to overcome these barriers and to facilitate ACP discussions, including enhancing multidisciplinary communication, creation of a shared ACP communication framework, and formal training in ACP communication to normalize ACP throughout a child's disease trajectory.Conclusion: Despite ubiquitous recognition of the importance of ACP communication, various clinician- and parent-level barriers were identified which impede ACP in children with serious illness and their families. Improvement strategies should focus on formal clinician training on how to conduct and document longitudinal ACP discussions to ensure care is aligned with family goals and values. [ABSTRACT FROM AUTHOR]

Context: Among adults with cancer, measures for high quality end-of-life care (EOLC) include avoidance of hospitalizations near end of life. For children with cancer, no measures exist to evaluate or improve EOLC, and adult quality measures may not apply.Objective: We engaged key stakeholders to explore EOLC priorities for children with cancer and their families, and to examine relevance of existing adult EOLC quality measures for children with cancer.Methods: In a multicenter qualitative study, we conducted interviews and focus groups with: adolescents and young adults (AYAs) with advanced cancer, parents of children with advanced cancer, bereaved parents, and interdisciplinary healthcare professionals. We transcribed, coded, and employed thematic analysis to summarize findings.Results: We enrolled 54 stakeholders (25 parents [including 12 bereaved parents], 10 AYAs, and 19 healthcare professionals). Participants uniformly prioritized direct communication with children about preferences and prognosis, interdisciplinary care, symptom management, and honoring family preference for location of death. Many participants valued access to the emergency department or hospital for symptom management or supportive care, which diverges from measures for high quality EOLC in adults. Most wished to avoid mechanical ventilation and cardiopulmonary resuscitation. Notably, participants generally valued hospice; however, few understood hospice care or had utilized its services.Conclusion: Childhood cancer stakeholders define high quality EOLC primarily through person-centered measures, characterizing half of existing adult-focused measures as limited in relevance to children. Future research should focus on developing techniques for person-centered quality measurement to capture attributes of greatest importance to children with cancer and their families. [ABSTRACT FROM AUTHOR]

Background: The field of pediatric palliative care (PPC) continues to encounter challenges and opportunities to improving access to high-quality PPC services. In early 2019, a workshop identified 11 potential "next step" actions, and subsequently a national survey-based poll of members of the PPC community was conducted to prioritize these potential actions in terms of their "actionable importance."Methods: Invitations to the survey were distributed in October 2019 to interdisciplinary PPC health care professionals via email to two major listservs, one hosted by the Section of Hospice and Palliative Medicine of the American Academy of Pediatrics, the other by the Center to Advance Palliative Care. Respondents rated the "actionable importance" of items relative to each other via a discrete choice experiment. Median importance scores are reported for each item.Results: One hundred seventy-seven individuals responded to the survey. The majority (62.2%) were physicians, with nurses (16.4%), advanced practice nurses (7.9%), and social workers (7.3%) being the other most common responders. The top five potential actions, in descending rank order, were: Determine what parents value regarding PPC (median score of 17.8, out of a total score of all items of 100); Define and disseminate core primary PPC curriculum (median, 15.3); Develop PPC national representation strategy and tactics (median, 12.3); Create PPC-specific program development toolkit (median, 10.9); and, Analyze payment and financing ratios (median, 9.6).Conclusions: Those seeking to advance the field of PPC should take into account the findings from this study, which suggest that certain actions are more likely to have a beneficial impact on moving the field forward. [ABSTRACT FROM AUTHOR]

Telehealth can improve care for patients with progressive cancer enrolling in hospice. Coordinated telehealth visits (patient/family-hospital-hospice) may improve communication, satisfaction with and interdisciplinary hospice collaboration. This pilot examines the impact of three coordinated telehealth visits on these outcomes. This is a prospective pilot study of 0–29-year-old patients with cancer initiating hospice care between 2021-2023. Adult patients, caregivers, oncology and palliative care clinicians, hospice nurses and administrators were surveyed about feasibility and acceptability with telehealth (Technology Acceptance Model 2) after first and third telehealth visits. Hospice satisfaction (Consumer Assessment of Healthcare Providers and Systems) was completed by caregivers after visit 3 and during bereavement. Healthcare professionals completed the Assessment of Interprofessional Team Collaboration Scale II (AITCS-II). Survey responses were summarized and differences in scores were analyzed. Of 40 eligible patients, 24 enrolled, 19 completed visit 1, and 13 completed visit 3. Fourteen caregivers and two adult patients completed visit 1 surveys; nine caregivers and two adult patients completed visit 3 surveys. Participants highly rated telehealth acceptability after visit 1 (Median: 4.5, IQR: 4.0–4.7) and 3 (Median: 4.4, IQR: 4.0–4.7). Hospice services were rated as highly satisfactory at visit 3 (Median: 4.0, IQR: 3.7–4.0) and during bereavement (Median: 3.7, IQR: 3.5–4.0). Healthcare professionals (n = 85 surveys) reported excellent interprofessional collaboration (Hospital clinicians median: 99/115 and hospice teams 111/115). Participants found coordinated telehealth visits to be feasible, acceptable, and satisfactory. Telehealth may be utilized as an acceptable alternative to clinic visits and fosters hospital-hospice collaboration. [ABSTRACT FROM AUTHOR]

1. Describe two major patterns of symptom trajectories over time among children receiving palliative care services. 2. Identify three clinical and research implications of the two major symptom trajectory patterns observed in pediatric palliative care. Patients receiving pediatric palliative care services, broadly speaking, experience either persistent or declining levels of symptoms over the course of months-to-years of time, with the latter pattern associated with greater than 50% mortality. These findings provide prognostic information and prompt redoubled attention to improving symptom management regarding persistently elevated symptoms. A foundational goal of pediatric palliative care (PPC) is to relieve patient suffering attributable to various symptoms that occur during serious illness. While pediatric patients receiving PPC are known to experience often high levels of polysymptomatology, much less is known about how symptom levels change over time and how they relate to mortality. Identify patterns of symptom trajectories and association with mortality among patients receiving pediatric palliative care. 2-year cohort study of patients, birth to 30 years of age, receiving PPC services from 7 PPC programs across the United States with data collected at 0, 2, 6, 12, 18, and 24 months from 2017 to 2022. We identified latent group trajectories of total symptom score of 20 symptoms over time. Two symptom score trajectories were identified in this cohort of 603 patients. Just less than half (n= 287, 47.6%) demonstrated a "persistent" symptom trajectory. While individual patients in this group had symptoms scores that fluctuated up and down one measure to the next, their scores over months-to-years persisted in a stable range. By contrast, the other group (n= 316, 52.4%) demonstrated a "declining" symptom trajectory. Patients in this group initially had higher overall symptom scores that, while fluctuating, declined substantially over time. Patient age, conditions, race, and ethnicity were not associated with these patterns, but mortality was. While 8.4% of the persistent trajectory group died during the study period, more than half (52.4%) of the declining trajectory group died. Most but not all patients receiving PPC experience declining levels of symptoms over months-to-years, a pattern associated with high mortality; the remainder experience fluctuating but stably persistent symptom levels with much lower mortality. These findings provide prognostic information and prompt redoubled attention to improving symptom management regarding persistently elevated symptoms. Pediatrics/Pain and symptom control [ABSTRACT FROM AUTHOR]

1. Understand the relationship between household material hardship, social needs, and social determinants of health. 2. Describe the prevalence of household material hardship among families of children with advanced cancer care. Unmet social needs are independently associated with severe parental distress in upfront childhood cancer treatment. We demonstrate the feasibility of systematic social needs screening in advanced cancer as an essential first step to identifying and addressing similar disparities. In this single center cohort, over half of participants have unmet needs. Parent caregivers living in poverty experience more distress during their child's cancer treatment compared to parents without poverty exposure. Our prior research demonstrates that household material hardship (HMH) – a modifiable measure of poverty including housing, food, transportation, and utility insecurities – is independently associated with severe psychologic distress among parents of children with newly diagnosed acute leukemia. The feasibility of systematic social needs screening to identify and address similar disparities in pediatric advanced cancer has not been established. Our primary aim was to demonstrate the feasibility of systematic social needs screening in pediatric advanced cancer. We hypothesized that systematic screening would be feasible as defined as >/= 75% consent rate and >/= 75% complete household material hardship data. Parents of children (< 18 years) with advanced cancer (defined as poor prognosis, new relapse/progression, early phase trial enrollment, or new palliative care consult) receiving care at a large pediatric cancer center were approached for participation following permission from the primary palliative care and/or oncology teams. Enrolled participants completed a two-timepoint social needs evaluation at enrollment and 12-weeks from initial survey completion. Surveys were completed electronically and are available in English and Spanish (and other languages with an interpreter). Feasibility was defined as >75% consent rate and >75% complete HMH data. Study opened to accrual in January 2023 and is ongoing. From January through September 2023, N=37 potentially eligible participants were identified; primary teams declined approach for 5 participants. Among 32 eligible participants, 28 consented to participation (88%) and 27 have completed initial surveys (96%) with no missing HMH data. Participants include 22 mothers (81%). Self-reported racial/ethnic identities include 6 Asian participants (22%), 3 Black/African American participants (11%), and 5 Hispanic participants (19%). Over half of participants (N=14) report HMH. All eligible participants completed 12-week follow-up (N=9); 4 participants were ineligible due to their child's death. Systematic social needs screening is feasible in pediatric advanced cancer. Over half of families in this cohort report unmet basic resource needs compared to 1 in 3 families at childhood cancer diagnosis. Unmet social needs are highly prevalent in families of children with advanced cancer. Interventions to address social needs are urgently needed in pediatric advanced cancer. Pediatrics/Under served, under resourced populations [ABSTRACT FROM AUTHOR]

Context: The death of a child from cancer is a devastating event, placing bereaved parents at risk for both physical and psychosocial morbidities. Despite growing awareness of these outcomes and increased hospital-based support, bereaved parents continue to express a desire for additional assistance.Objectives: We examined parental perceptions of bereavement support from the clinical teams and institution and suggested modifications to hospital support strategies.Methods: We explored the answers to four questions on the bereavement support provided from the care team and institutional mailings from a larger survey, querying parents of children who died from cancer 6 to 24 months prior to participation. Answers were Likert scale based with additional free-text responses.Results: Forty-nine parents completed the survey (response rate 36%). The respondents were predominantly white (N = 43, 88%), female (N = 32, 65%), and non-Hispanic/Latino (N = 43, 88%). The mean length of time from child's death to completion was 13 months. Twenty-seven (55%) and 26 (53%) parents indicated that contact with care team and mailings, respectively, were at least a little helpful in their grief experience. In free-text responses, parents identified support outside the hospital (28 respondents), groups and events hosted by the hospital or hospice (8), contact with care team (3), and hospital mailings (1) as the most helpful. Findings support modifications to hospital support strategies.Conclusions: Bereaved parents request additional supportive services. Using the parents' perspective and recommendations, we outline options to augment support and provide a variety of supportive resources for bereaved parents to access in their own time. [ABSTRACT FROM AUTHOR]

Context: There are no validated Spanish tools to assess symptom burden in pediatric cancer. The Pediatric Memorial Symptom Assessment Scale (Pediatric-MSAS) is an English valid multidimensional and comprehensive instrument.Objectives: To validate Pediatric-MSAS-Spanish (MSAS-Child, MSAS-Teen, and MSAS-Caregiver versions) in patients with cancer treated in two public hospitals in Buenos Aires, Argentina.Methods: Cross-sectional study, classical psychometric theory. We recruited a convenience sample of 148 caregivers of children ≥ two years, 51 young children (seven to 12 years), and 48 adolescents (≥13 years). We assessed feasibility, comprehensibility, internal consistency, and convergent and known-groups validity.Results: Pediatric-MSAS-Spanish was feasible, acceptable, and comprehensible. Reliability of MSAS-total and subscale scores was satisfactory (Cronbach alpha: 0.90, 0.89, 0.71, respectively, for caregiver, teen, and child MSAS-total score). MSAS-total caregiver, teen, and child scores met a priori criteria for convergent validity correlating with Pediatric Quality of Life Inventory total scores (Spearman correlation (rs) = -0.59, -0.66, and -0.32, respectively) and visual -analogue well-being scores (rs = -0.63, -0.46, and -0.4, respectively). Caregiver-teen correlation was strong for total (rs = 0.78) and physical (rs = 0.85) scores, and moderate for global distress index (rs = 0.64) and psychological (rs = 0.45) scores. MSAS-total caregiver-child correlation was moderate (rs = 0.30) and Kappa analysis showed poor agreement. All MSAS-Caregiver scores and MSAS-Teen total and physical scores differentiated inpatients/outpatients and patients on/off-treatment, while MSAS-Teen psychological and global distress index subscales or MSAS-Child scores did not.Conclusion: Pediatric-MSAS-Spanish is feasible and reliable for assessing symptom burden in children with cancer. Validity of MSAS-Caregiver and MSAS-Teen was largely supported. Further work on MSAS-Child is warranted. [ABSTRACT FROM AUTHOR]

Context: Bereaved parents provide an important perspective for improving care for patients and families throughout the illness and after a child's death. However, involvement of bereaved parents in research studies is fraught with concerns over inflicting psychological distress and issues with study recruitment. Data on research strategies to engage parents early in their bereavement are limited.Objectives: To describe involvement of bereaved parents in the development of a comprehensive survey, examine the response rates with varying recruitment strategies and describe participation experiences of parent participants.Methods: Parents of children who endured the death of their child from cancer six to 24 months prior were invited to complete a 195-item survey examining their early grief experience.Results: Forty-nine of the 137 eligible parents from 36 different households completed the survey (response rate 36%). The respondents were predominantly white (N = 43; 88%), female (N = 32; 65%), and non-Hispanic (N = 43; 88%). The median length of time from child's death to survey completion was 11 months (range 7-26). Thirty parents (61%) indicated they were comfortable/very comfortable answering the survey, 40 (82%) answered that they experienced at least a little benefit from involvement, and 36 (73%) indicated they experienced at least some distress.Conclusion: Some parents of children who died of cancer are willing to participate in research early in their bereavement, and although most experience some distress, they are comfortable answering questions about their experience and benefit from participation. Recruitment strategies including personal outreach may result in better response rates. [ABSTRACT FROM AUTHOR]