title: Patients' and Parents' Needs, Attitudes, and Perceptions About Early Palliative Care Integration in Pediatric Oncology.
abstract: OBJECTIVE
  Early palliative care integration for cancer patients is now touted as the optimal care model, yet significant barriers often prevent its implementation. A perceived barrier, especially for pediatric oncology patients, is the notion that patients and their families may not need or want palliative care involvement early in the disease trajectory.
  
  
  OBJECTIVE
  To determine the perception of symptom burden early in treatment and assess attitudes toward early integration of palliative care in pediatric oncology patient-parent pairs.
  
  
  METHODS
  Novel but pretested survey tools were administered to 129 patient-parent dyads of hospital-based pediatric oncology ambulatory clinics and inpatient units between September 2011 and January 2015. All patient participants were aged between 10 and 17 years and were diagnosed as having an oncologic condition 1 month to 1 year before enrollment. Both the patient and the parent in the dyad spoke English, and all participating parents provided written informed consent. A convenience sample was used for selection, with participants screened when otherwise presenting at a participating site. A total of 280 eligible participants were approached for study inclusion, 258 of whom were enrolled in the study (92.1% positive response-rate).
  
  
  METHODS
  Degree of perceived suffering from early symptom-related causes, attitudes toward early palliative care integration, and patient-parent concordance. Statistical analysis included descriptive statistics, calculation of concordance, McNemar test results, and Cochran-Armitage trend test results.
  
  
  RESULTS
  Of the 129 patients in the dyads, 68 were boys, and 61 girls; of the 129 parents, 15 were men, and 114 women. Patients reported the following symptoms in the first month of cancer therapy: nausea (n = 109; 84.5%), loss of appetite (n = 97; 75.2%), pain (n = 96; 74.4%), anxiety (n = 77; 59.7%), constipation (n = 69; 53.5%), depression (n = 64; 49.6%), and diarrhea (n = 52; 40.3%). A large proportion of those reporting suffering indicated substantial suffering severity from specific symptoms (ie, a great deal or a lot) including nausea, 52.3% (57 of 109), loss of appetite, 50.5% (49 of 97), constipation 30.4% (21 of 69), pain 30.2% (29 of 96), anxiety 28.6% (22 of 77), depression 28.1% (18 of 64), and diarrhea 23.1% (12 of 52). Few children and parents expressed opposition to early palliative care involvement (2 [1.6%] and 8 [6.2%]) or perceived any detrimental effects on their relationship with their oncologist (6 [4.7%] and 5 [3.9%]), loss of hope (3 [2.3%] and 10 [7.8%]), or therapy interference (3 [2.3%] and 2 [1.6%], respectively). Intradyad concordance was low overall: 26% to 29% for exact concordance and 40% to 69% for agreement within 1 response category. Significant differences in patient-parent attitudes toward aspects of early palliative care included child participants being more likely than their parents (40.3% [n = 52] vs 17.8% [n = 23]) to indicate that palliative care would have been helpful for treating their symptoms (P < .001).
  
  
  CONCLUSIONS
  Pediatric oncology patients experience a high degree of symptom-related suffering early in cancer therapy, and very few patients or parents in this study expressed negative attitudes toward early palliative care. Our findings suggest that pediatric oncology patients and families might benefit from, and are not a barrier to, early palliative care integration in oncology.
authors.affiliation: Division of Quality of Life and Palliative Care, Department of Oncology, St Jude Children's Research Hospital, Memphis, Tennessee.
authors.forename: Deena R
authors.initials: DR
authors.lastname: Levine
authors.affiliation: Division of Nursing Research, Department of Pediatric Medicine, St Jude Children's Research Hospital, Memphis, Tennessee.
authors.forename: Belinda N
authors.initials: BN
authors.lastname: Mandrell
authors.affiliation: Department of Biostatistics, St Jude Children's Research Hospital, Memphis, Tennessee.
authors.forename: April
authors.initials: A
authors.lastname: Sykes
authors.affiliation: Division of Nursing Research, Department of Pediatric Medicine, St Jude Children's Research Hospital, Memphis, Tennessee.
authors.forename: Michele
authors.initials: M
authors.lastname: Pritchard
authors.affiliation: Division of Quality of Life and Palliative Care, Department of Oncology, St Jude Children's Research Hospital, Memphis, Tennessee.
authors.forename: Deborah
authors.initials: D
authors.lastname: Gibson
authors.affiliation: Department of Oncology, Division of Pediatric Oncology, Sidney Kimmel Comprehensive Cancer Center, Johns Hopkins Medicine, Baltimore, Maryland.
authors.forename: Heather J
authors.initials: HJ
authors.lastname: Symons
authors.affiliation: Department of Bioethics, National Institute of Health, Bethesda, Maryland.
authors.forename: David
authors.initials: D
authors.lastname: Wendler
authors.affiliation: Division of Quality of Life and Palliative Care, Department of Oncology, St Jude Children's Research Hospital, Memphis, Tennessee.
authors.forename: Justin N
authors.initials: JN
authors.lastname: Baker
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D000855:Anorexia / Q000209:etiology / Q000628:therapy; D001007:Anxiety / Q000209:etiology / Q000628:therapy; D001290:Attitude; D000072716:Cancer Pain / Q000209:etiology / Q000628:therapy; D002648:Child; D003248:Constipation / Q000209:etiology / Q000628:therapy; D003863:Depression / Q000209:etiology / Q000628:therapy; D003967:Diarrhea / Q000209:etiology / Q000628:therapy; D005260:Female; D006801:Humans; D008297:Male; D008495:Medical Oncology; D008875:Middle Aged; D009325:Nausea / Q000209:etiology / Q000628:therapy; D009369:Neoplasms / Q000150:complications* / Q000628:therapy*; D010166:Palliative Care / Q000523:psychology*; D010290:Parents / Q000523:psychology*; D010342:Patient Acceptance of Health Care; D010372:Pediatrics; D010465:Perception; D011795:Surveys and Questionnaires; D063189:Symptom Assessment