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Background: 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., Objectives: 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., Methods: 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., Results: 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., Conclusion: 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., (Copyright © 2024 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Context: 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., Objectives: This brief report aims to explore child and parent perspectives on the benefits of using e-PROs to routinely report on symptoms and QoL., Methods: 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., Results: 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., Conclusion: 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., (Copyright © 2023 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Importance: While knowing the goals of care (GOCs) for children receiving pediatric palliative care (PPC) are crucial for guiding the care they receive, how parents prioritize these goals and how their priorities may change over time is not known., Objective: To determine parental prioritization of GOCs and patterns of change over time for parents of children receiving palliative care., Design, Setting, and Participants: A Pediatric Palliative Care Research Network's Shared Data and Research cohort study with data collected at 0, 2, 6, 12, 18, and 24 months in hospital, outpatient, or home settings from April 10, 2017, to February 15, 2022, at 7 PPC programs based at children's hospitals across the US. Participants included parents of patients, birth to 30 years of age, who received PPC services., Exposures: Analyses were adjusted for demographic characteristics, number of complex chronic conditions, and time enrolled in PPC., Main Outcomes: Parents' importance scores, as measured using a discrete choice experiment, of 5 preselected GOCs: seeking quality of life (QOL), health, comfort, disease modification, or life extension. Importance scores for the 5 GOCs summed to 100., Results: A total of 680 parents of 603 patients reported on GOCs. Median patient age was 4.4 (IQR, 0.8-13.2) years and 320 patients were male (53.1%). At baseline, parents scored QOL as the most important goal (mean score, 31.5 [SD, 8.4]), followed by health (26.3 [SD, 7.5]), comfort (22.4 [SD, 11.7]), disease modification (10.9 [SD, 9.2]), and life extension (8.9 [SD, 9.9]). Importantly, parents varied substantially in their baseline scores for each goal (IQRs more than 9.4), but across patients in different complex chronic conditions categories, the mean scores varied only slightly (means differ 8.7 or less). For each additional study month since PPC initiation, QOL was scored higher by 0.06 (95% CI, 0.04-0.08) and comfort scored higher by 0.3 (95% CI, 0-0.06), while the importance score for life extension decreased by 0.07 (95% CI, 0.04-0.09) and disease modification by 0.02 (95% CI, 0-0.04); health scores did not significantly differ from PPC initiation., Conclusions and Relevance: Parents of children receiving PPC placed the highest value on QOL, but with considerable individual-level variation and substantial change over time. These findings emphasize the importance of reassessing GOCs with parents to guide appropriate clinical intervention.

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., (Copyright © 2021 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Background: Adolescents and young adults (AYAs) with cancer receive high-intensity care and experience significant symptoms at the end of life. As novel cancer-directed therapies increase, AYAs with advanced cancer may face multiple treatment options, each with unique risk/benefit profiles. To augment the AYAs' voice in the decision-making process, we developed MyPref, an adaptive conjoint analysis-based tool., Procedure: We conducted a three-staged pilot study of MyPref utilizing an exploratory intervention mixed methods design. AYAs and their identified parent or trusted person (PTP) completed MyPref and received a summary of their preferences for nine treatment-related factors. Participants later engaged in semi-structured interviews to further explore their experience with MyPref. Responses to free text questions and interviews were analyzed using qualitative techniques., Results: Fifteen AYAs with advanced cancer and seven PTPs participated in the pilot. While most participants identified time until cancer grows, quality of life, and side effects to be the most important factors when considering a future treatment, preferences were highly varied. Notably, MyPref-calculated preferences differed from initial rank order, and participants indicated that calculated preferences were accurate in follow-up interviews., Conclusion: The MyPref-calculated preferences varied by individual and differed from initial rank ordering. Additionally, there was variability in how individuals defined and prioritized treatment-related factors. This novel tool may be a useful way to engage AYAs and their PTPs in discussions around preferences for treatment and prepare AYAs for future decision making. We plan to evaluate this tool longitudinally to evaluate the impact on actual treatment decisions., (© 2020 Wiley Periodicals LLC.)

Pediatric palliative care aims to alleviate suffering and improve the quality of life of children with serious disease and increase support for their parents and other family members. Integration of palliative care into the routine care of children, adolescents, and young adults with cancer has resulted in improved outcomes in patients and their families. The field of pediatric palliative oncology-encompassing primary palliative care provided by the multidisciplinary oncology team as well as subspecialty palliative care provided by the palliative care team for more complex cases-is unique from palliative care in adults given its focus on care of the child and the larger family. In this review, we focus on advancements in the specific domains within pediatric palliative oncology care including family-centered communication, assessment and management of physical symptoms and distress, psychosocial concerns, and spiritual considerations of the patient, parents, and siblings.

Objectives: Palliative radiation therapy (pRT) is often used to improve quality of life for pediatric patients. Though palliative doses are generally lower than those for cure, pRT may still introduce undesirable effects. The decision to pursue additional therapy for a child may be challenging and depends on parents' knowledge and expectations. The goal of this study was to explore parental perceptions of pRT., Methods: Twenty-eight children referred for pRT were enrolled in our prospective study. Parents were counseled regarding the indication and expected outcomes. They then completed a series of questionnaires to assess their understanding of pRT, side effects that their child experienced, and how the outcomes compared to their expectations., Results: The majority of parents listed pain relief and addressing new disease as the main indication for pRT. When asked about expectations, the majority chose improvement in quality of life and prolongation of their child's life. Interestingly, 32% of parents expected pRT to cure their child's disease. Most patients undergoing pRT did not experience any adverse symptoms. The outcomes of pRT in the majority of cases exceeded parental expectations., Conclusion: Improved quality of life with pRT sometimes blurs the distinction between palliation and cure. We found that most parents understand the aim to improve quality of life, although a proportion of parents perceived pRT as a cure to their child's disease. Despite this, the majority of parents reported that the outcome of the pRT course exceeded their expectations. We postulate that parents derive comfort from pursuing active treatment., (© 2019 Wiley Periodicals, Inc.)

Little is known about the experience of parents receiving results of quality-of-life research in pediatric advanced cancer. The PediQUEST study participants who indicated interest in results during enrollment were mailed summarized findings and the Disseminating Quality-of-Life Research Questionnaire. Respondents (86%,12/14) reported feeling more than "a little" recognized, grateful, or satisfied to receive results. Concurrently, 43% (6/14) endorsed feeling more than "a little" sad, confused, or anxious. Nonetheless, 81% (13/16) prefer to be informed in the future. Although parents experience a spectrum of strong emotions, our findings suggest quality-of-life study results should be shared., (© 2019 Wiley Periodicals, Inc.)

Objectives: For children, adolescents, and young adults with complex chronic conditions advance care planning may be a vital component of optimal care. Advance care planning outcomes research has previously focused on seriously ill adults and adolescents with cancer where it is correlated with high-quality end-of-life care. The impact of advance care planning on end-of-life outcomes for children, adolescents, and young adults with complex chronic conditions is unknown, thus we sought to evaluate parental preferences for advance care planning and to determine whether advance care planning and assessment of specific family considerations during advance care planning were associated with differences in parent-reported end-of-life outcomes., Design: Cross-sectional survey., Setting: Large, tertiary care children's hospital., Subjects: Bereaved parents of children, adolescents, and young adults with complex chronic conditions who died between 2006 and 2015., Interventions: None., Measurement and Main Results: One-hundred fourteen parents were enrolled (54% response rate) and all parents reported that advance care planning was important, with a majority (70%) endorsing that discussions should occur early in the illness course. Parents who reported advance care planning (65%) were more likely to be prepared for their child's last days of life (adjusted odds ratio, 3.78; 95% CI, 1.33-10.77), to have the ability to plan their child's location of death (adjusted odds ratio, 2.93; 95% CI, 1.06-8.07), and to rate their child's quality of life during end-of-life as good to excellent (adjusted odds ratio, 3.59; 95% CI, 1.23-10.37). Notably, advance care planning which included specific assessment of family goals was associated with a decrease in reported child suffering at end-of-life (adjusted odds ratio, 0.23; 95% CI, 0.06-0.86) and parental decisional regret (adjusted odds ratio, 0.42; 95% CI, 0.02-0.87)., Conclusions: Parents of children, adolescents, and young adults with complex chronic conditions highly value advance care planning, early in the illness course. Importantly, advance care planning is associated with improved parent-reported end-of-life outcomes for this population including superior quality of life. Further studies should evaluate strategies to ensure high-quality advance care planning including specific assessment of family goals.

Background: Children with advanced cancer experience high symptom distress, which negatively impacts their health-related quality of life (HRQOL). To the authors' knowledge, the relationship between income and symptom distress and HRQOL is not well described., Methods: The Pediatric Quality of Life and Symptoms Technology (PediQUEST) multisite clinical trial evaluated an electronic patient-reported outcome system to describe symptom distress and HRQOL in children with advanced cancer via repeated surveys. The authors performed a secondary analysis of PediQUEST data for those children with available parent-reported household income (dichotomized at 200% of the Federal Poverty Level and categorized as low income [<$50,000/year] or high income [≥$50,000/year]). The prevalence of the 5 most commonly reported physical and psychological symptoms was compared between groups. Multivariable generalized estimating equation models were used to test the association between household income and symptom distress and HRQOL., Results: A total of 78 children were included in the analyses: 56 (72%) in the high-income group and 22 (28%) in the low-income group. Low-income children were more likely to report pain than high-income children (64% vs 42%; P=.02). In multivariable models, children from low-income families demonstrated a uniform trend toward higher total (β low-high =3.1; 95% confidence interval [95% CI], -0.08 to 6.2 [P=.06]), physical (β=3.8; 95% CI, -0.4 to 8.0 [P=.09]), and psychological (β=3.46; 95% CI, -1.91 to 8.84 [P=.21]) symptom distress compared with children from high-income families. Low income was associated with a uniform trend toward lower total (β=-7.9; 95% CI, -14.8, to -1.1 [P=.03]), physical (β=-11.2; 95% CI, -21.2 to -1.2 [P=.04]), emotional (β=-5.8; 95% CI, -13.6 to 2.0 [P=.15]), social (β=-2.52; 95% CI, -9.27 to 4.24 [P=.47]), and school (β=-9.8; 95% CI, -17.8 to -1.8 [P=.03]) HRQOL., Conclusions: In this cohort of children with advanced cancer, children from low-income families were found to experience higher symptom burden and worse QOL., (© 2018 American Cancer Society.)

We aimed to explore the predictive value of screening for distress alone, hope alone, or a combination of both. In a multicenter prospective study, 37 English-speaking adolescents and young adults with cancer and 40 parents completed validated instruments at diagnosis ("baseline") and 3-6 months later ("follow-up"). Correlated regression models described associations. Within each instrument, baseline and follow-up scores were associated. However, only a composite hope/distress score predicted all three patient-centered outcomes. Multidimensional screens incorporating positive and negative psychosocial constructs may predict patient-centered outcomes better than isolated, single-construct instruments.

Poverty is an important patient-reported outcome of therapy and a potential predictor of outcome disparities in pediatric cancer. We previously identified that nearly 30% of pediatric cancer families experience household material hardship (HMH), a concrete measure of poverty including food, energy, or housing insecurity, during the first 6 months of chemotherapy. We conducted a follow-up survey in a subcohort of these families at least 1 year off-therapy and found that 32% reported HMH in early survivorship. Persistently high concrete resource needs off-therapy may have significance for child health and quality of life, and thus represent targets for future investigation., (© 2017 Wiley Periodicals, Inc.)

Background: Adolescents and early young adults (AYAs) with cancer are at high risk for poor outcomes. Positive psychological responses such as benefit-finding may buffer the negative impacts of cancer but are poorly understood in this population., Objective: We aimed to prospectively describe the content and trajectory of benefit- and burden-finding among AYAs to develop potential targets for future intervention., Patients and Methods: One-on-one semistructured interviews were conducted with English-speaking AYA patients (aged 14-25 years) within 60 days of diagnosis of a noncentral nervous system malignancy requiring chemotherapy, 6-12 and 12-18 months later. Interviews were coded using directed content analyses with a priori schema defined by existing theoretical frameworks, including changed sense of self, relationships, philosophy of life, and physical well-being. We compared the content, raw counts, and ratios of benefit-to-burden by patient and by time point., Setting/subjects: Seventeen participants at one tertiary academic medical center (mean age 17.1 years, SD = 2.7) with sarcoma (n = 8), acute leukemia (n = 6), and lymphoma (n = 3) completed 44 interviews with >100 hours of transcript-data., Results: Average benefit counts were higher than average burden counts at each time point; 68% of interviews had a benefit-to-burden ratio >1. Positive changed sense-of-self was the most common benefit across all time points (44% of all reported benefits); reports of physical distress were the most common burden (32%). Longitudinal analyses suggested perceptions evolved; participants tended to focus less on physical manifestations and more on personal strengths and life purpose., Conclusions: AYAs with cancer identify more benefits than burdens throughout cancer treatment and demonstrate rapid maturation of perspectives. These findings not only inform communication practices with AYAs but also suggest opportunities for interventions to potentially improve outcomes.

Context: Little is known about how parents of children with advanced cancer classify news they receive about their child's medical condition., Objective: To develop concepts of "good news" and "bad news" in discussions of advanced childhood cancer from parent perspectives., Methods: Parents of children with advanced cancer cared for at three children's hospitals were asked to share details of conversations in the preceding three months that contained "good news" or "bad news" related to their child's medical condition. We used mixed methods to evaluate parent responses to both open-ended and fixed-response items., Results: Of 104 enrolled parents, 86 (83%) completed the survey. Six (7%) parents reported discussing neither good nor bad news, 18 (21%) reported only bad news, 15 (17%) reported only good news, and 46 (54%) reported both good and bad news (one missing response). Seventy-six parents (88%) answered free-response items. Descriptions of both good and bad news discussions consisted predominantly of "tumor talk" or cancer control. Additional treatment options featured prominently, particularly in discussions of bad news (42%). Child well-being, an important good news theme, encompassed treatment tolerance, symptom reduction, and quality of life., Conclusion: A majority of parents of children with advanced cancer report discussing both good and bad news in the preceding three months. Although news related primarily to cancer control, parents also describe good news discussions related to their child's well-being. Understanding how parents of children with advanced cancer classify and describe the news they receive may enhance efforts to promote family-centered communication., (Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

This article highlights key findings from the "Comprehensive Cancer Care for Children and Their Families" March 2015 joint workshop by the Institute of Medicine (IOM) and the American Cancer Society. This initiative convened more than 100 family members, clinician investigators, advocates, and members of the public to discuss emerging evidence and care models and to determine the next steps for optimizing quality-of-life outcomes and well-being for children and families during pediatric cancer treatment, after treatment completion, and across the life spectrum. Participants affirmed the triple aim of pediatric oncology that strives for every child with cancer to be cured; provides high-quality palliative and psychosocial supportive, restorative, and rehabilitative care to children and families throughout the illness course and survivorship; and assures receipt of high-quality end-of-life care for patients with advancing disease. Workshop outcomes emphasized the need for new pediatric cancer drug development and identified critical opportunities to prioritize palliative care and psychosocial support as an integral part of pediatric cancer research and treatment, including the necessity for adequately resourcing these supportive services to minimize suffering and distress, effectively address quality-of-life needs for children and families at all stages of illness, and mitigate the long-term health risks associated with childhood cancer and its treatment. Next steps include dismantling existing silos and enhancing collaboration between clinical investigators, disease-directed specialists, and supportive care services; expanding the use of patient-reported and parent-reported outcomes; effectively integrating palliative and psychosocial care; and clinical communication skills development. CA Cancer J Clin 2016;66:398-407. © 2016 American Cancer Society., (© 2016 American Cancer Society.)

Context: Modifiable factors of health-related quality of life (HRQOL) are poorly described among children with advanced cancer. Symptom distress may be an important factor for intervention., Objectives: We aimed to describe patient-reported HRQOL and its relationship to symptom distress., Methods: Prospective, longitudinal data from the multicenter Pediatric Quality of Life and Symptoms Technology study included primarily patient-reported symptom distress and HRQOL, measured at most weekly with the Memorial Symptoms Assessment Scale and Pediatric Quality of Life inventory, respectively. Associations were evaluated using linear mixed-effects models adjusting for sex, age, cancer type, intervention arm, treatment intensity, and time since disease progression., Results: Of 104 enrolled patients, 49% were female, 89% were white, and median age was 12.6 years. Nine hundred and twenty surveys were completed over nine months of follow-up (84% by patients). The median total Pediatric Quality of Life score was 74 (interquartile range 63-87) and was "poor/fair" (e.g., <70) 38% of the time. "Poor/fair" categories were highest in physical (53%) and school (48%) compared to emotional (24%) and social (16%) subscores. Thirteen of 24 symptoms were independently associated with reductions in overall or domain-specific HRQOL. Patients commonly reported distress from two or more symptoms, corresponding to larger HRQOL score reductions. Neither cancer type, time since progression, treatment intensity, sex, nor age was associated with HRQOL scores in multivariable models. Among 25 children completing surveys during the last 12 weeks of life, 11 distressing symptoms were associated with reductions in HRQOL., Conclusion: Symptom distress is strongly associated with HRQOL. Future research should determine whether alleviating distressing symptoms improves HRQOL in children with advanced cancer., (Copyright © 2016 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Purpose: Thousands of children are living with advanced cancer; yet patient-reported outcomes (PROs) have rarely been used to describe their experiences. We aimed to describe symptom distress in 104 children age 2 years or older with advanced cancer enrolled onto the Pediatric Quality of Life and Evaluation of Symptoms Technology (PediQUEST) Study (multisite clinical trial evaluating an electronic PRO system)., Methods: Symptom data were collected using age- and respondent-adapted versions of the PediQUEST Memorial Symptom Assessment Scale (PQ-MSAS) at most once per week. Clinical and treatment data were obtained from medical records. Individual symptom scores were dichotomized into high/low distress. Determinants of PQ-MSAS scores were explored using linear mixed-effects models., Results: During 9 months of follow-up, PQ-MSAS was administered 920 times: 459 times in teens (99% self-report), 249 times in children ages 7 to 12 years (96% child/parent report), and 212 times in those ages 2 to 6 years (parent reports). Common symptoms included pain (48%), fatigue (46%), drowsiness (39%), and irritability (37%); most scores indicated high distress. Among the 73 PQ-MSAS surveys administered in the last 12 weeks of life, pain was highly prevalent (62%; 58% with high distress). Being female, having a brain tumor, experiencing recent disease progression, and receiving moderate- or high-intensity cancer-directed therapy in the prior 10 days were associated with worse PQ-MSAS scores. In the final 12 weeks of life, receiving mild cancer-directed therapy was associated with improved psychological PQ-MSAS scores., Conclusion: Children with advanced cancer experience high symptom distress. Strategies to promote intensive symptom management are indicated, especially with disease progression or administration of intensive treatments., (© 2015 by American Society of Clinical Oncology.)

Background: Little is known about how physician and parent perspectives compare regarding the prognosis and end-of-life (EOL) experience of children with advanced heart disease (AHD)., Objective: The study's objective was to describe and compare parent and physician perceptions regarding prognosis and EOL experience in children with AHD., Methods: This was a cross-sectional survey study of cardiologists and bereaved parents. Study subjects were parents and cardiologists of children with primary cardiac diagnoses who died in a tertiary care pediatric hospital between January 2007 and December 2009. Inclusion required both physician and parent to have completed surveys respective to the same patient. A total of 31 parent/physician pairs formed the analytic sample. Perceptions were measured of cardiologists and bereaved parents regarding the EOL experience of children with AHD., Results: Nearly half of parents and physicians felt that patients suffered 'a great deal,' 'a lot,' or 'somewhat' at EOL, but there was no agreement between them. At diagnosis, parents more often expected complete repair and normal lifespan while the majority of physicians expected shortened lifespan without normal quality of life. Parents who expected complete repair with normal life were more likely to report 'a lot' of suffering at EOL (p=0.002). In 43% of cases, physicians reported that the parents were prepared for the way in which their child died, while the parents reported feeling unprepared., Conclusion: Both parents and physicians perceive suffering at EOL in patients who die of AHD. Moreover, parent expectations at diagnosis may influence perceptions of suffering at EOL. Physicians overestimate the degree of parent preparedness for their child's death.

Background: Nearly 2000 children die due to a malignancy in the United States annually. Emerging data suggest that home is the desired location of care for children with cancer at end of life. However, one obstacle to enrollment in a pediatric palliative care (PPC) home care program may be fear that distressing symptoms at end of life cannot be adequately managed outside the hospital., Objective: To compare the symptom distress and quality-of-life experience for children who received concurrent end-of-life care from a PPC home care program (PPC/Oncology) with that of those who died without exposure to the PPC program (Oncology)., Methods: We conducted a retrospective survey study of a cohort of bereaved parents of children who died of cancer between 2002 and 2008 at a U.S. tertiary pediatric institution., Results: Sixty bereaved parents were surveyed (50% PPC/Oncology). Prevalence of constipation and high distress from fatigue were more common in the PPC/Oncology group; other distressing symptoms were similar between groups, showing room for improvement. Children who received PPC/Oncology were significantly more likely to have fun (70% versus 45%), to experience events that added meaning to life (89% versus 63%), and to die at home (93% versus 20%)., Conclusions: This is the first North American study to assess outcomes among children with cancer who received concurrent oncology and palliative home care compared with those who received oncology care alone. Symptom distress experiences were similar in groups. However, children enrolled in a PPC home care program appear to have improved quality of life and are more likely to die at home.

Background: Missing data is a common phenomenon with survey-based research; patterns of missing data may elucidate why participants decline to answer certain questions., Objective: To describe patterns of missing data in the Pediatric Quality of Life and Evaluation of Symptoms Technology (PediQUEST) study, and highlight challenges in asking sensitive research questions., Design: Cross-sectional, survey-based study embedded within a randomized controlled trial., Setting: Three large children's hospitals: Dana-Farber/Boston Children's Cancer and Blood Disorders Center (DF/BCCDC); Children's Hospital of Philadelphia (CHOP); and Seattle Children's Hospital (SCH)., Measurements: At the time of their child's enrollment, parents completed the Survey about Caring for Children with Cancer (SCCC), including demographics, perceptions of prognosis, treatment goals, quality of life, and psychological distress., Results: Eighty-six of 104 parents completed surveys (83% response). The proportion of missing data varied by question type. While 14 parents (16%) left demographic fields blank, over half (n=48; 56%) declined to answer at least one question about their child's prognosis, especially life expectancy. The presence of missing data was unrelated to the child's diagnosis, time from progression, time to death, or parent distress (p>0.3 for each). Written explanations in survey margins suggested that addressing a child's life expectancy is particularly challenging for parents., Conclusions and Relevance: Parents of children with cancer commonly refrain from answering questions about their child's prognosis, however, they may be more likely to address general cure likelihood than explicit life expectancy. Understanding acceptability of sensitive questions in survey-based research will foster higher quality palliative care research.

Objective: To describe parent perspectives regarding the end-of-life experience of children with advanced heart disease., Design: Cross-sectional multicenter survey study of bereaved parents., Setting: Two tertiary care pediatric hospitals., Subjects: Parents of children younger than 21 years with primary cardiac diagnoses who died in the hospital 9 months to 4 years before the survey date. Parents were excluded if they were non-English speakers or had previously denied permission to contact., Intervention: The Survey for Caring for Children with Advanced Heart Disease was developed, piloted, and then sent to parents of all children who died at two sites., Measurements and Main Results: Fifty bereaved parents responded (39% response rate) a mean of 2.7 years after their child's death. Median age at death was 6 months (3.6 d to 20.4 yr). At end-of-life, 86% of children were intubated and 46% were receiving mechanical circulatory support. Seventy-eight percent died during withdrawal of life-sustaining interventions and 16% during resuscitative efforts. Parents realized that their child had no realistic chance of survival a median of 2 days prior to death (0-30 d). According to parents, 47% of children suffered "a great deal," "a lot," or "somewhat" during the end-of-life period. The symptoms parents perceived to be causing the most suffering were breathing and feeding difficulties in children under 2 years and fatigue and sleeping difficulties in older children. Seventy-one percent of parents described the quality of life of their child during the last month of life as "poor" or "fair." Most parents (84%) described the quality of care delivered as "very good" or "excellent.", Conclusions: According to their parents, many children with advanced heart disease experience suffering in the end-of-life care period. For most, realization that their child has no realistic chance of survival does not occur until late, some not until death is imminent. Once this realization occurs, however, parents perceive peacefulness, a "good death," and excellent quality of care. Strategies for improved communication around symptom management, quality of life, prognosis, and advance care planning are needed for families of children with advanced heart disease.

Over the past two decades, paediatric palliative care has emerged as both a primary approach and as its own medical subspecialty, the overall aim of which is to ease suffering for children with life-threatening illness and their families through a concurrent model of care. However, most discussions have been focused on the transition to palliative care when no realistic hope for cure exists. We believe that, because the course of cancer is so unpredictable, this idea is misleading. Indeed, palliative care is increasingly being recognized as being about not just how to cope with the process of dying, but also about how to engage in living when faced with a life-threatening illness. This article will examine our current understanding of several areas of palliative care, with the ultimate message that palliative care is simply a novel term for the total care of a child and family, an approach that should be applied consistently and concurrently regardless of disease status. By improving familiarity with palliative care and building relationships with palliative care specialists, the paediatric oncology clinician will ensure that the best care possible for children and families is provided, regardless of outcome.

Context: Intensive treatments intended to sustain life are often used for patients with advanced cystic fibrosis (CF). There are no guidelines for selecting patients whose survival and quality of life may be enhanced by such treatments or for communication with patients and caregivers about possible treatment outcomes., Objectives: We aimed to describe caregivers' perspectives on decision making for the use of intensive treatments for patients with advanced CF lung disease., Methods: We conducted semi-structured interviews with 36 caregivers of 36 patients who died of CF about treatment preference discussions and solicited recommendations for improving discussions., Results: Twenty (56%) patients received intensive treatments during the last week of life. Twenty-two (61%) caregivers reported ever having discussed intensive treatment preferences with a physician, and 17 (77%) of these discussions were initiated during an acute illness. Only 14 (39%) of all patients participated. Caregivers expressed less certainty about consistency of treatments with patient preferences when patients did not participate. Twenty-nine (81%) caregivers endorsed first discussing treatment preferences during a period of medical stability., Conclusions: Discussions about preferences for the use of intensive treatments for patients with CF often take place during episodes of acute illness and may be delayed until patients themselves are too ill to participate. Bereaved caregivers suggest first addressing intensive treatment preferences during a stable period so that patient preferences are understood and unwanted treatments are minimized., (Copyright © 2010 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.)

While dying at home may be the choice of many, where people die may be less important than argued. We examined factors associated with parental planning of a child's location of death (LOD) and its effects on patterns of care and parent's experience. In a cross-sectional study of 140 parents who lost a child to cancer at one of two tertiary-level U.S. pediatric hospitals, 88 (63%) planned the child's LOD and 97% accomplished their plan. After adjusting for disease and family characteristics, families whose primary oncologist clearly explained treatment options during the child's end of life and who had home care involved were more likely to plan LOD. Planning LOD was associated with more home deaths (72% vs. 8% among those who did not plan, P<0.001) and fewer hospital admissions (54% vs. 98%, P<0.001). Parents who planned were more likely to feel very prepared for the child's end of life (33% vs. 12%, P=0.007) and very comfortable with LOD (84% vs. 40%, P<0.001), and less likely to have preferred a different LOD (2% vs. 46%, P<0.001). Among the 73 nonhome deaths, planning was associated with more deaths occurring in the ward than in the intensive care unit or other hospital (92% vs. 33%, P<0.001), and fewer children being intubated (21% vs. 48%, P=0.029). Comprehensive physician communication and home care involvement increase the likelihood of planning a child's LOD. Opportunity to plan LOD is associated with outcomes consistent with high-quality palliative care, even among nonhome deaths, and thus may represent a more relevant outcome than actual LOD.

Background: There is a lack of studies examining the prevalence and severity of psychosocial distress in parents caring for a child with life-limiting condition. More research is also needed to better understand the experience, support needs and quality-of-life of this population. Aim: To describe the experience and support needs of caring for children with life-limiting conditions and examine the level of distress and quality-of-life experienced by parents. Design: Cross-sectional, prospective, quantitative study guided by an advisory group. Participants completed a survey that included demographics and self-report outcome measures of unmet support needs, appraisal of caregiving, psychological distress and quality-of-life. Bivariate correlation analyses were performed to examine for associations between measures. Setting/participants: Parents currently caring for one or more children (⩽18 years) with a life-limiting condition and registered with a paediatric palliative care service (Australia). Results: In total, 143 parents (88% female) completed the questionnaire (36% RR). Compared with population norms, participants reported low quality-of-life, high carer burden and high psychological distress. Almost half (47%) of the sample met the criteria for one or more diagnoses of clinically elevated stress, anxiety or depression. There were significant associations between the psychosocial outcome variables; carer strain and depression had the strongest correlations with quality-of-life (r = –.63, p <.001, for both). Participants also reported multiple unmet needs related to emotional and practical support. Conclusions: This study contributes to the growing body of evidence on paediatric palliative care, specifically that parents caring for a child with a life-limiting condition report high levels of distress and burden, low quality-of-life and need more emotional and practical support targeted at their unmet needs. Paediatric palliative care services should routinely assess parent mental health and provide appropriate support. [ABSTRACT FROM AUTHOR]

Background: Adolescent and young adult advance care planning is beneficial in improving communication between patients, surrogates, and clinicians. The influences on treatment decisions among adolescents and young adults are underexplored in the literature. Aim: The aim of this study was to explore and better understand the influences on decision-making for adolescent and young adult bone marrow transplant patients about future medical care. Design: Clinical case studies and qualitative inductive content analysis of treatment decisions made during the Respecting Choices® Next Steps Pediatric Advance Care Planning conversation as a component of the Family-Centered Advance Care Planning Intervention. Settings/participants: A total of 10 adolescent and young adult patients (aged 14–27 years) undergoing bone marrow transplant at an academic Midwest children's hospital were involved in the study. Results: Influences on participants' decisions were consideration for family, quality of life, and awareness of self. Desire to avoid suffering and maintain an acceptable quality of life was often in competition with participant's concern over the perceived negative impact of discontinuing treatment on their families. Conclusion: This study highlights that adolescent and young adult bone marrow transplant patients are capable of meaningful deliberation about future treatment decisions. Influences on decision-making should be incorporated into advance care planning conversations to facilitate communication between patients and their surrogates. Longitudinal research is needed to explore these influences throughout the trajectory of illness. [ABSTRACT FROM AUTHOR]

Compared with younger children and older adults, adolescent and young adult (AYA) patients with cancer receive more intensive end-of-life (EOL) care. We hypothesize that enhanced understanding of AYA preferences, increased engagement of these patients in decision-making, and improved communication of their preferences with family members and the medical team will lead to increased provision of goal-concordant care and decreased intensity of EOL care. In this study, we describe the development of a novel tool that quantifies the relative importance of numerous factors considered by AYA patients with cancer, their parents, and health care providers when choosing between treatment options. [ABSTRACT FROM AUTHOR]

An introduction to the journal is presented in which the editor discusses research advancements in the field of paediatric palliative care in terms of clinician communication, advance care planning, and quality of life of patients.

Given the limited number of pediatric-specific palliative care programs, palliative care providers of all disciplines may be called on to care for infants, children, and adolescents with serious illness. This article provides a review of the unique components of pediatric palliative care, including key roles within an interdisciplinary team, pediatric developmental considerations, use of medical technology and complexities of symptom management in children with serious illness, hospice utilization, as well as pointers for discussions with families regarding a patient's quality of life and goals of care. [ABSTRACT FROM AUTHOR]

Background: Adolescents and young adults (AYAs) with cancer are at risk for poor psychosocial outcomes. This study aimed to determine whether a novel intervention targeting resilience resources would improve patient-reported resilience, quality of life, and psychological distress.Methods: In this parallel, phase 2 randomized controlled trial, English-speaking AYAs (12-25 years old) with cancer were randomized to the Promoting Resilience in Stress Management (PRISM) intervention or usual care (UC). PRISM is a brief, skills-based intervention targeting stress management, goal setting, cognitive reframing, and meaning making. Participants completed surveys at enrollment and 6 months. Mixed effects regression models evaluated associations between PRISM and the primary outcome (10-item Connor-Davidson Resilience Scale scores) and secondary outcomes (generic and cancer-related quality of life [Pediatric Quality of Life modules], psychological distress [Kessler-6], and anxiety/depression [Hospital Anxiety and Depression]) at 6 months.Results: Ninety-two AYAs were enrolled, were randomized, and completed baseline surveys (48 in the PRISM group and 44 in the UC group); 73% were 12 to 17 years old, and 62% had leukemia or lymphoma. Attrition was primarily due to medical complications and/or death; 36 PRISM participants and 38 UC participants completed 6-month surveys. PRISM was associated with improved resilience (+3.0 points; 95% confidence interval [CI], 0.5-5.4; P = .02) and cancer-specific quality of life (+9.6; 95% CI, 2.6-16.7; P = .01) and reduced psychological distress (-2.1; 95% CI, -4.1 to -0.2; P = .03) but not generic quality of life (+7.2; 95% CI, -0.8 to 15.2; P = .08). Although anxiety was similar between the groups, 2 PRISM participants (6%) and 8 UC participants (21%) met the criteria for depression at 6 months (odds ratio, 0.09; 95% CI, 0.01-1.09; P = .06).Conclusions: PRISM was associated with improved psychosocial outcomes in comparison with UC, suggesting that brief, skills-based interventions for AYAs may provide a benefit. [ABSTRACT FROM AUTHOR]

Background: Pediatric cancer-related fatigue is prevalent and significantly impairs health-related quality of life, yet its patterns and correlates are poorly understood. The objectives of this study were to describe fatigue as prospectively reported by children with advanced cancer and to identify the factors associated with fatigue and associated distress.Methods: Children (age ≥2 years) with advanced cancer (N = 104) or their parents at 3 academic hospitals reported symptoms at most weekly over 9 months using the computer-based Pediatric Quality of Life Evaluation of Symptoms Technology (PediQUEST) system. PediQUEST administered a modified version of the Memorial Symptom Assessment Scale (PQ-MSAS) as part of a randomized controlled trial. Clinical information was abstracted from medical records. Primary outcomes were: 1) fatigue prevalence (yes/no response to PQ-MSAS fatigue item) and 2) fatigue distress (composite score of severity, frequency, and bother). Multivariable models were constructed to identify factors independently associated with fatigue prevalence and scores reflecting fatigue distress (ie, burden).Results: Of 920 reports, 46% (n = 425) noted fatigue. When reported, fatigue was of high frequency in 41% of respondents (n = 174), severity in 25%of respondents (n = 107), and bother in 34%of respondents (n = 143). Most reports (84%; n = 358) were associated with scores indicating fatigue distress. In multivariable analyses, fatigue was associated with older age, lower hemoglobin, and distress from particular symptoms (anorexia, nausea, sleep disturbance, sadness, and irritability). In contrast, fatigue distress was associated with distress from nausea, cough, and pain.Conclusions: Fatigue is common among children with advanced cancer and is often highly distressing. Interventions focused on uncontrolled symptoms may ease fatigue distress in children with advanced cancer. [ABSTRACT FROM AUTHOR]

While availability of palliative care consultation for children with advanced heart disease increases, little is known about cardiologist attitudes towards palliative care. We sought to describe perspectives of cardiologists regarding palliative care and to characterize their perceived competence in palliative care concepts. A cross-sectional survey of pediatric cardiologists and cardiac surgeons from 19 pediatric medical centers was performed. Overall response rate was 31% (183/589). Respondents had a median of 18 years of experience since medical school (range 2-49) and most practiced at academic centers (91%). Sixty-percent of respondents felt that palliative care consultations occur 'too late' and the majority (85%) agreed that palliative care consultations are helpful. Barriers to requesting palliative care consultation were most frequently described as 'referring to palliative care services too early will undermine parents' hope' (45%) and 'concern that parents will think I am giving up on their child' (56%). Only 33% of cardiologists reported feeling 'very' or 'moderately' competent in prognosticating life expectancy while over 60% felt competent caring for children with heart disease around end of life, and nearly 80% felt competent discussing goals of care and code status. Greater perceived competence was associated with subspecialty (heart failure/intensivist vs. other) (OR 3.6, 95% CI 1.6-8.1, p = 0.003) and didactic training (OR 6.27, 95% CI 1.8-21.8, p = 0.004). These results underscore the need for further training in palliative care skills for pediatric cardiologists. Enhancing palliative care skills among cardiologists and facilitating partnership with subspecialty palliative care teams may improve overall care of children with advanced heart disease. [ABSTRACT FROM AUTHOR]

Purpose The prevalence of intimacy and substance use among adolescents and young adults during cancer therapy has not been well described. Methods The “Resilience in Adolescents and Young Adults with Cancer” study was a prospective, multicenter, mixed-methods cohort study. English-speaking patients 14–25 years old with newly diagnosed cancer were invited to complete a comprehensive survey at the time of enrollment (T1) and 3–6 months later (T2). Intimate relationships and health behaviors were assessed with questions adapted from the Guidelines for Adolescent Preventative Services assessment. Descriptive statistics characterized the prevalence of sexual and substance-related behaviors at each time point. Results Of 42 eligible and enrolled participants, 35 (83%) and 25 (59%) completed T1 and T2 surveys, respectively. Their mean age was 17.6 years (standard deviation 2.3), 57% were male, and the most common diagnoses were sarcoma and acute leukemia. Over a third of participants reported dating at each time point; 26% were sexually active at T1, and 32% at T2. Of those endorsing sexual activity, fewer than half reported consistent birth control or condom use and 4 reported their first sexual intercourse during our observation. In addition, 46% (T1) and 44% (T2) reported alcohol use and 23% (T1) and 26% (T2) reported illicit drug use. Despite these activities, fewer than 10% endorsed a worry or need to discuss these behaviors with oncology providers. Conclusions Intimacy and substance use among adolescents and young adults are common during cancer therapy. Clinical and research implications include the identification of optimal communication and patient-centered supports. [ABSTRACT FROM AUTHOR]

Background: There are identified gaps in the care provided to children with cancer based on the self-identified lack of education for health care professionals in pediatric palliative care and in the perceptions of bereaved parents who describe suboptimal care. In order to address these gaps, we will implement and evaluate a national roll-out of Education in Palliative and End-of-Life Care for Pediatrics (EPEC®-Pediatrics), using a Train-the-Trainer' model. Methods/design: In this study we are using a pre- post-test design and an integrated knowledge translation approach to assess the impact of the educational roll-out in four areas: 1) self-assessed knowledge of health professionals; 2) knowledge dissemination outcomes; 3) practice change outcomes; and 4) quality of palliative care. The quality of palliative care will be assessed using data from three sources: a) parent and child surveys about symptoms, quality of life and care provided; b) health record reviews of deceased patients; and c) bereaved parent surveys about end-of-life and bereavement care. After being trained in EPEC®-Pediatrics, 'Master Facilitators' will train 'Regional Teams' affiliated with 16 pediatric oncology programs in Canada. Each team will consist of three to five health professionals representing oncology, palliative care, and the community. Each team member will complete online modules and attend one of two face-to-face conferences, where they will receive training and materials to teach the EPEC®-Pediatrics curriculum to 'End-Users' in their region. Regional Teams will also choose a Tailored Implementation of Practice Standards (TIPS) Kit to guide implementation of a quality improvement project in their region; support will be provided via quarterly meetings with Co-Leads and via a listserv and webinars with other teams. Discussion: Through this study we aim to raise the level of pediatric palliative care education amongst health care professionals in Canada. Our study will be a significant step forward in evaluation of the impact of EPEC®-Pediatrics both on dissemination outcomes and on care quality at a national level. Based on the anticipated success of our project we hope to expand the EPEC®-Pediatrics roll-out to health professionals who care for children with non-oncological life-threatening conditions. [ABSTRACT FROM AUTHOR]

Aim: Current Australian guidelines for the provision of paediatric palliative care highlight the importance of services being focused on the needs of the child and family. We aimed to establish parents' level of satisfaction with the quality of care currently being provided to children dying of cancer. Methods: We interviewed 96 parents of children who died of cancer in Melbourne, Australia between 1996 and 2004 to ascertain how they rated the care provided to their child during the end-of-life period. Results: A majority of parents were satisfied with the care provided by their primary oncologist, local doctors, palliative care services and home-care nurses. Most parents felt that discussions about key medical and treatment decisions were appropriate and clearly understood. Parents were generally satisfied with the leadership roles undertaken in decision-making in the end-of-life period; however, parents who were not satisfied indicated that they would like additional involvement of their primary oncologist. Conclusions: Current approaches to end-of-life care in children with cancer appear to be satisfactory. The main focus should continue to be on open and honest communication. [ABSTRACT FROM AUTHOR]

An abstract of the article "Enhancing the quality of palliative care for children with cancer: A nation-wide train-the-trainer educational initiative educational initiative" by Kimberly Widger and colleagues is presented.

In the intense, cure-oriented setting of hematopoietic stem-cell transplantation (HSCT), delivery of high-quality palliative and end-of-life care is a unique challenge. Although HSCT affords patients a chance for cure, it carries a significant risk of morbidity and mortality. During HSCT, patients usually experience high symptom burden and a significant decrease in quality of life that can persist for long periods. When morbidity is high and the chance of cure remote, the tendency after HSCT is to continue intensive medical interventions with curative intent. The nature of the complications and overall condition of some patients may render survival an unrealistic goal and as such, continuation of artificial life-sustaining measures in these patients may prolong suffering and preclude patient and family preparation for end of life. Palliative care focuses on the well-being of patients with life-threatening conditions and their families, irrespective of the goals of care or anticipated outcome. Although not inherently at odds with HSCT, palliative care historically has been rarely offered to HSCT recipients. Recent evidence suggests thatHSCTrecipients would benefit from collaborative efforts betweenHSCTand palliative care services, particularly when initiated early in the transplantation course.We review palliative and end-of-life care in HSCT and present models for integrating palliative care into HSCT care. With open communication, respect for roles, and a spirit of collaboration, HSCT and palliative care can effectively join forces to provide high-quality, multidisciplinary care for these highly vulnerable patients and their families. [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. 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]

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: Most of the 20,000 U.S. children dying of serious illnesses annually die in the hospital. It is unknown if this hospital death predominance reflects family wishes or systemic issues such as lack of hospice access. Hence, we need to better understand location of death preferences for children and their families.Objective: To better understand location of death preferences in North America, we reviewed the literature to examine the evidence for and against home death in seriously ill children (0-18 years).Methods: We searched English articles in PubMed, PsycINFO, and Embase published during 2000-2018 for articles related to parental, child/adolescent, and provider preference for death location and articles that correlated death location with bereavement or quality of life outcomes.Results: The search results (n = 877 articles and n = 58 abstracts of interest) were reviewed, and 34 relevant articles were identified. Parent, child, and provider preferences, bereavement outcomes, and associated factors all point to some preference for home death. These findings should be interpreted with several caveats: 1) many studies are small and prone to selection bias, 2) not all families prefer home death and some that do are not able to achieve home death due to inadequate home support, 3) studies of bereavement outcomes are lacking.Conclusion: Adequate resources are needed to ensure children can die in their chosen location-be that home, hospital, or free-standing hospice. This review highlights research areas needed to better understand death location preference and programs and policies that will support home death for those that desire it. [ABSTRACT FROM AUTHOR]

Pediatric hematopoietic stem cell transplantation (HSCT) offers cure for high-risk malignancies and other conditions, but carries a risk of complications. Parental outlook regarding their child's transplantation course and future health has been largely unexplored. This report presents the Parent Outlook Scale, describes its properties, and examines the outlook of parents embarking on their child's transplantation course and the associated variables. Parents of children scheduled to undergo HSCT (n = 363) at 8 US transplantation centers completed the Parent Outlook Scale, comprising 4 items assessing frequency of the parent's thoughts about the potential difficulty of the child's transplantation (Transplant Difficult subscale) and worsened health (Health Worse subscale). Item responses were rated on a 5-point Likert scale (ranging from “none” to “all of the time”) and, along with scale/subscale scores, transformed to 100-point scales, with higher scores connoting greater thought frequency. Psychometrics were explored. Multivariable models identified personal and clinical characteristics associated with scale and subscale scores. The Parent Outlook Scale (α = 0.75) and subscales were found to have sound psychometric properties. Factor loading supported the single scale with 2 subscales representing distinct aspects of overall outlook. Mean scores (Parent Outlook, 52.5 ± 21.7; Transplant Difficult, 64.4 ± 25.6; Health Worse, 40.7 ± 25.7) revealed variability within and across scale/subscales. Significantly different mean subscale scores ( P < .001) indicated more frequent Transplant Difficult thoughts than Health Worse thoughts. Clinical factors (solid tumor diagnosis and unrelated donor transplant) and a parent factor (worse emotional functioning) were associated with higher scale and subscale scores. Our findings show that the outlook of parents embarking on their child's HSCT course is varied and not solely a product of clinical factors readily apparent to clinicians. Referring and transplantation clinicians should create opportunities to explore with parents their perspectives and concerns before and during the course of HSCT. [ABSTRACT FROM AUTHOR]

Context Pediatric palliative care randomized controlled trials (PPC-RCTs) are uncommon. Objectives To evaluate the feasibility of conducting a PPC-RCT in pediatric cancer patients. Methods This was a cohort study embedded in the Pediatric Quality of Life and Evaluation of Symptoms Technology Study (NCT01838564). This multicenter PPC-RCT evaluated an electronic patient-reported outcomes system. Children aged two years and older, with advanced cancer, and potentially eligible for the study were included. Outcomes included: pre-inclusion attrition (patients not approached, refusals); post-inclusion attrition (drop-out, elimination, death, and intermittent attrition (IA; missing surveys) over nine months of follow-up); child/teenager self-report rates; and, reasons to enroll/participate. Results Over five years, of the 339 identified patients, 231 were eligible (in 22, we could not verify eligibility); 84 eligible patients were not approached and 43 declined participation. Patients not approached were more likely to die or have brain tumors. We enrolled 104 patients. Average enrollment rate was one patient per site per month; shortening follow-up from nine to three months (with optional re-enrollment) increased recruitment by 20%. A total of 87 patients completed the study (24 died) and 17 dropped out. Median IA was 41% in the first 20 weeks of follow-up and more than 60% in the eight weeks preceding death. Child/teenager self-report was 94%. Helping others, low burden procedures, incentives, and staff attitude were frequent reasons to enroll/participate. Conclusion A PPC-RCT in children with advanced cancer was feasible, post-inclusion retention adequate; many families participated for altruistic reasons. Strategies that may further PPC-RCT feasibility include: increasing target population through large multicenter studies, approaching sicker patients, preventing exclusion of certain patient groups, and improving data collection at end of life. [ABSTRACT FROM AUTHOR]

1. Appraise emerging themes of barriers and facilitators to promoting quality of life among children with cancer from the perspective of healthcare professionals 2. Evaluate trustworthiness of a qualitative study Intensive childhood cancer treatment produces suffering. In addition to physical symptoms, children miss out on life events and experience social isolation. Professionals' attitudes and actions shape children's lives during cancer treatment. We sought to understand professionals' role expectations for themselves and others to relieve suffering and promote joy, meaning, and accomplishment for children in their care; perceived barriers and facilitators to promoting quality of life (QOL) for children in their care; and how team dynamics promote or impede QOL for children in their care. We used theoretical sampling and conducted semistructured interviews of professionals working in a pediatric oncology center. Professionals were invited to participate via email, and interviews were conducted face-to-face, by telephone, or via secure video conference by nonclinical members of the research team. Through constant comparative analysis, early interviews informed subsequent data collection. Thematic analysis incorporated the following data sources: audio-recordings, interview transcripts, debriefing discussions with interviewers, and memos. Fifteen interviews were conducted in April to September 2021 with oncologists (MDs/NPs), nurses, social workers, child life specialists, chaplains, and psychologists. Communication to share information and build on each other's ideas emerged as a central theme. Issues of presence and parity emerged: Physical distancing and restrictive visitation policies due to the COVID-19 pandemic were impediments to promoting QOL. Others perceived less patient isolation and exclusion when "normal life" seemed universally out of reach. Changes in working patterns induced by COVID-19 were seen as threats to communication and, by extension, to patients' QOL. Efforts to ensure communication were perceived to be asymmetric, leaving some clinicians feeling devalued. Communication, presence, and parity emerged as preliminary facilitators and barriers to working interprofessionally to promote QOL, particularly in the context of the COVID-19 pandemic. Understanding professionals' attitudes and actions around QOL for children with cancer will inform future interventions to prevent and relieve suffering. [ABSTRACT FROM AUTHOR]

Context: Specialized pediatric palliative care (SPPC) is increasingly involved in the care of seriously ill children, yet the evidence on its impact has not been comprehensively reviewed.Objective: The objective of this study was to assess the effects of providing SPPC to seriously ill children on patient-, caregiver-, and systems-level outcomes.Methods: We performed a Systematic Review following Cochrane methods.Data Sources: Medline, Embase, PsycINFO, Global Health, The Cochrane Central Register of Controlled Trials, LILACS, and Web of Science were searched from January 1996 to June 2018.Study Selection/data Extraction: We included randomized controlled, cohort, case-control, and before-after studies in which exposure to SPPC services was the intervention of interest. All outcomes reported in these studies were included. Two investigators independently selected articles, extracted data, and assessed risk of bias of included studies using standardized criteria.Results: Twenty-four studies were included in qualitative synthesis: one nonrandomized controlled trial, 16 cohort studies, and seven before-after studies. Evidence certainty was low. Twenty-one studies had one or more area with high risk of bias, most commonly selection bias, low group comparability, risk for confounding, and inadequate statistical reporting. Studies analyzed 46 domains, operationalized as 136 distinct outcomes. SPPC was associated with better child quality of life scores in all four studies that assessed this outcome. No other outcome showed this consistency.Conclusion: Receiving SPPC was associated with better child quality of life. However, the paucity and low certainty of the evidence precluded any firm recommendations about SPPC practice. Larger collaborative networks and greater consensus regarding SPPC research standards are needed. [ABSTRACT FROM AUTHOR]