***TASK*** the task is to summarize an input biomedical literature in six sentences 
    ***INPUT*** the input is a biomedical literature 
    ***OUTPUT*** the output is the summary of an input biomedical literature in six sentences 
    ***DOCUMENTATION*** 
    ***EXAMPLES*** 
    Input: BACKGROUND The field of pediatric palliative oncology is newly emerging . Little is known about the characteristics and illness experiences of children with cancer who receive palliative care ( PC ) .  METHODS A retrospective cohort study of 321 pediatric oncology patients enrolled in PC who died between 2011 and 2015 was conducted at a large academic pediatric cancer center using a comprehensive st and ardized data extraction tool . RESULTS The majority of pediatric palliative oncology patients received experimental therapy ( 79.4 % ) , with 40.5 % enrolled on a phase I trial . Approximately one-third received cancer-directed therapy during the last month of life ( 35.5 % ) . More than half had at least one intensive care unit hospitalization ( 51.4 % ) , with this subset demonstrating considerable exposure to mechanical ventilation ( 44.8 % ) , invasive procedures ( 20 % ) , and cardiopulmonary resuscitation ( 12.1 % ) . Of the 122 patients who died in the hospital , 44.3 % died in the intensive care unit . Patients with late PC involvement occurring less than 30 days before death had higher odds of dying in the intensive care unit over the home/hospice setting compared to those with earlier PC involvement ( OR : 4.7 , 95 % CI : 2.47 - 8.97 , P < 0.0001 ) . CONCLUSIONS Children with cancer who receive PC  experience a high burden of intensive treatments and often die in inpatient intensive care setting s. Delayed PC involvement is associated with increased odds of dying in the intensive care unit . Prospect i ve investigation of early PC involvement in children with high-risk cancer is needed to better underst and potential impacts on cost-effectiveness , quality of life , and delivery of goal concordant care BACKGROUND Hospice is an important provider of end of life care . Adult minorities are less likely to enroll on hospice ; little is known regarding the prevalence of pediatric hospice use or the characteristics of its users . Our primary objective was to determine whether race/ethnicity was associated with hospice enrollment in children with cancer . We hypothesized that minority ( Latino ) race/ethnicity is negatively associated with hospice enrollment in children with cancer . PROCEDURE In this single-center retrospective cohort study , inclusion criteria were patients who died of cancer or stem cell transplant between January 1 , 2006 and December 31 , 2010 . The primary outcome variable was hospice enrollment and primary predictor was race/ethnicity . RESULTS Of the 202 patients initially identified , 114 met inclusion criteria , of whom 95 were enrolled on hospice .  Patient race/ethnicity was significantly associated with hospice enrollment ( P = 0.02 ) , the association remained significant ( P = 0.024 ) after controlling for payor status ( P = 0.995 ) , patient diagnosis ( P = 0.007 ) , or religion ( P = 0.921 ) . Latinos enrolled on hospice  significantly more often than patients of other races . Despite initial enrollment on hospice however , 34 % of Latinos and 50 % of non-Latinos had withdrawn from hospice at the time of death ( P = 0.10 ) . Race/ethnicity was not significantly associated with dying on hospice . CONCLUSIONS These results indicate that race/ethnicity and diagnosis are likely to play a role in hospice enrollment during childhood . A striking number of patients of all race/ethnicities left hospice prior to death . More studies describing the impact of culture on end of life decision-making and the hospice experience in childhood are warranted PURPOSE This study aim ed to determine whether feeding back patient-reported outcomes ( PROs ) to providers and families of children with advanced cancer improves symptom distress and health-related quality of life ( HRQoL ) . PATIENTS AND METHODS This study was a parallel , multicentered pilot r and omized controlled trial . At most once per week , children age ≥ 2 years old with advanced cancer or their parent completed the  computer-based Pediatric Quality of Life and Evaluation of Symptoms Technology ( PediQUEST ) survey consisting of age- and respondent-adapted versions of the Memorial Symptom Assessment Scale ( MSAS ) , Pediatric Quality of Life Inventory 4.0 Generic Core Scales ( PedsQL4.0 ) , and an  overall Sickness question  . In the intervention group ( n = 51 ) , oncologists and families received printed reports summarizing PROs ; e-mails were sent to oncologists and subspecialists when predetermined scores were exceeded . No feedback was provided in the control  group ( n = 53 ) . Primary outcomes included linear trends of MSAS , PedsQL4.0 total and subscale scores , and Sickness scores during 20 weeks of follow-up , along with child , parent , and provider satisfaction with PediQUEST feedback . RESULTS Feedback did not significantly affect average MSAS , PedsQL4.0 , or Sickness score trends . Post hoc subgroup analyses among children age ≥ 8 years who survived 20 weeks showed that feedback improved PedsQL4.0 emotional ( + 8.1 ; 95 % CI , 1.8 to 14.4 ) and Sickness ( -8.2 ; 95 % CI , -14.2 to -2.2 ) scores . PediQUEST reports were valued by children , parents , and providers and contributed at least sometimes to physician initiation of a psychosocial consult ( 56 % ) . CONCLUSION Although routine feedback of PROs did not significantly affect the child 's symptoms or HRQoL , changes were in expected directions and improvements observed in emotional HRQoL through exploratory analyses were encouraging . Importantly , children , parents , and providers value PRO feedback IMPORTANCE Parent psychological distress can impact the well-being of childhood cancer patients and other children in the home . Recognizing and alleviating factors of parent distress may improve overall family survivorship experiences following childhood cancer . OBJECTIVES To describe the prevalence and factors of  psychological distress ( PD ) among parents of children with advanced cancer . DESIGN Cohort study embedded within a r and omized clinical trial ( Pediatric Quality of Life and Evaluation of Symptoms Technology [ PediQUEST ] study ) . SETTING Multicenter study conducted at 3 children 's hospitals ( Boston Children 's Hospital , Children 's Hospital of Philadelphia , and Seattle Children 's Hospital ) . PARTICIPANTS Parents of children with advanced ( progressive , recurrent , or refractory ) cancer . MAIN OUTCOME MEASURE Parental PD , as measured by the Kessler-6 Psychological Distress Scale . RESULTS Eighty-six of 104 parents completed the Survey About Caring for Children With Cancer ( 83 % participation ) ; 81 parents had complete Kessler-6 Psychological Distress Scale data . More than 50 % of parents reported high PD and 16 % met criteria for serious PD ( compared with US prevalence of 2%-3 % ) . Parent perceptions of prognosis , goals of therapy , child symptoms/suffering , and financial hardship were associated with PD . In multivariate analyses , average parent Kessler-6 Psychological Distress Scale scores were higher among parents who believed their child was suffering highly and who reported great economic hardship . Conversely , PD was significantly lower among parents whose prognostic underst and ing was aligned with concrete goals of care . CONCLUSIONS AND RELEVANCE Parenting a child with advanced cancer is strongly associated with high to severe levels of PD . Interventions aim ed at aligning prognostic underst and ing with concrete care goals and easing child suffering and financial hardship may mitigate parental PD BACKGROUND Children with cancer suffer significant morbidity throughout therapy and often face an uncertain prognosis . Because palliative care teams can provide an additional layer of support with symptom management and communication , we conducted a prospect i ve study assessing the feasibility of early palliative care consultation for children with high-risk malignancies . PROCEDURE This study was part of a larger prospect i ve study examining the impact of early palliative care consultation .  Children were eligible if they were < 22 years old and had a high-risk malignancy , recurrence , or required hematopoietic stem cell transplantation ( HSCT ) . Data were collected from the medical record on diagnosis , days to consultation , acceptability of consultation to family/staff , and overall survival . Feasibility was defined as enrollment of > 75 % of eligible patients , palliative care consultation within 1 month of eligibility , and patient/family satisfaction . RESULTS Twenty of 25 ( 80 % ) eligible patients were approached and received a palliative care consultation at initial diagnosis ( 7 ) , recurrence ( 12 ) , or time of HSCT ( 1 ) . Median age of the children was 5 years ( 0.1 - 20 years ) .  Median time from new diagnosis/recurrence to consultation was 12 days ( 2 - 180 days ) ; 17 ( 85 % ) received the consultation within 30 days . Eleven ( 55 % ) of the 20 children died . Median time of consultation prior to death was 128 days ( 10 - 648 days ) . Ten of the 11 ( 91 % ) received their consultation > 30 days prior to death . No families or oncologists declined an early consultation . CONCLUSIONS Early palliative care consultation  is feasible for children with high-risk cancer and is acceptable to children , families , and pediatric oncologists We conducted a retrospective cohort study of 125 pediatric oncology patients who died in 2010 - 2014 to explore how healthcare utilization , pediatric palliative care ( PPC ) receipt , and end-of-life care ( EOLC ) differed between patients enrolled in early phase clinical trials ( EP )  and those not enrolled ( NEP ) . Baseline characteristics and healthcare utilization did not significantly differ between groups . EP patients received  PPC consultation  closer to death than NEP patients ( median days before death = 58 [ interquartile range = 16 - 84 ] vs. 85 [ 32 - 173 ] ; P = 0.04 ) . Our findings suggest that early phase trial enrollment does not substantially alter EOLC for children with advanced cancer but may contribute to later PPC engagement . Future studies should definitively assess the relationship between trial enrollment and PPC timing BACKGROUND The aim of the study was to make a comprehensive inventory of the physical , psychological , and social symptoms of children with cancer and their parents during the palliative phase  and the extent to which health professionals address those symptoms . PROCEDURE Forty parents of children who died 1 - 3 years prior to data collection ( structured question naire ) were invited to participate in the study . RESULTS The response rate was 32 out of 40 parents ( 80 % ) . Most frequently mentioned physical symptoms were pain , poor appetite , and fatigue . The children 's most mentioned psychological symptoms were sadness , difficulty in talking to their parents about their feelings regarding illness and death and fear of being alone . The symptoms of fear of death of the child and fear of physical symptoms were most frequently mentioned parents ' psychological symptoms . Health professionals addressed 82 % of the children 's physical symptoms , 43 % of the children 's psychological symptoms , and 56 % of the parents ' psychological symptoms . Parents indicated that after professional attention the proportion of children 's physical symptoms that were completely or partially resolved was 18 and 26 % , respectively . For children 's psychological symptoms the figures were 9 and 25 % , respectively , and for parents ' psychological symptoms 2 and 23 % , respectively . CONCLUSIONS The burden of symptoms of the child with cancer during the palliative phase  and their parents is high . Health professionals focus mainly on the physical symptoms of the child . Relief of symptoms could not be achieved for a large proportion of symptoms . Further prospect i ve research is necessary to investigate the kind , frequency and intensity of symptoms in order to tailor optimal palliative care to the needs of both child and parent 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 prospect ively reported by children with advanced cancer and to identify the factors associated with fatigue and associated distress BACKGROUND  Specialized pediatric palliative care programs  aim to improve quality of life and ease distress of patients and their families across the illness trajectory . These programs require further development , which should be based on how they improve outcomes for patients , families , health care professionals , and the health care system . OBJECTIVE To identify and compare definitions of indicators used to assess the impact of  specialized pediatric palliative care programs .  DESIGN The scoping review protocol was prospect ively registered on PROSPERO 2017 ( CRD42017074090 ) . DATE SOURCES MEDLINE , PsycINFO , Cochrane Central Register of Controlled Trials , Web of Science , CINAHL , Scopus , and Embase data bases were search ed from January 2000 to September 2018 . Eligible studies included r and omized controlled trials , experimental studies , or observational studies that compared specialized programs with usual care .  Studies were excluded if most care recipients were older than 19 years or the article was not available in English , French , German , or Spanish . RESULTS Forty-six studies were included ; one was a r and omized controlled trial . We identified 82 different indicators grouped into 14 domains . The most common indicators included the following : location of death , length of stay in hospital , and number of hospital admissions . Only 22 indicators were defined identically in at least 2 studies . Only one study included children 's perspectives in assessing indicators . CONCLUSIONS Many indicators were used to assess program outcomes with little definition consensus across 
    Output:
    
Results : An evidence base of mainly low- and moderate- quality studies ( n = 42 ) shows that accessing specialist paediatric palliative care is associated with less intensive care at the end of life , more advance care planning and fewer in-hospital deaths .
Current evidence can not tell us whether these services improve children ’s symptom burden or quality of life .
There was evidence that children with haematological malignancies are less likely to access these services .
Conclusion : Current evidence suggests that children and young people with cancer receiving specialist palliative care  are cared for differently .
However , little is understood about children ’s views , and research is needed to determine whether specialist input improves quality of life