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Published in: Supportive Care in Cancer 9/2014

01-09-2014 | Original Article

Referral practices of pediatric oncologists to specialized palliative care

Authors: Kirsten Wentlandt, Monika K. Krzyzanowska, Nadia Swami, Gary Rodin, Lisa W. Le, Lillian Sung, Camilla Zimmermann

Published in: Supportive Care in Cancer | Issue 9/2014

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Abstract

Purpose

The aims of this study are to describe the attitudes and referral practices of pediatric oncologists (POs) to specialized palliative care (SPC), and to compare them with those of adult oncologists (AOs).

Methods

Canadian members of the American Society of Pediatric Hematology/Oncology (ASPHO), Canadian Association of Medical Oncologists (CAMO), Canadian Association of Radiation Oncologists (CARO), and the Canadian Society of Surgical Oncology (CSSO) participated in an anonymous survey assessing SPC referral practices.

Results

The response rate was 70 % (646/921), 52 % (43/82) for ASPHO members; 5 CARO members self-identified as POs, for a total of 48 POs and 595 AOs. Ninety-six percent of POs had access to inpatient SPC consultation services (vs. 48 % AOs), 31 % to a PCU (vs. 82 % AOs), and 27 % to an outpatient SPC clinic (vs. 73 % AOs). POs more often stated their SPC services accepted patients on chemotherapy than AOs (64 vs. 37 %, p = 0.0004). POs were less likely to refer only after chemotherapy had been stopped (13 vs. 29 % for AOs) and more likely to state that ideally referral should occur at the diagnosis of cancer/incurable cancer (73 vs. 43 %). POs were more likely to agree they would refer earlier if palliative care were renamed “supportive care” (58 vs. 33 %, p < 0.0001), that palliative care adds too many providers (17 vs. 7 %, p = 0.002), and that palliative care was perceived negatively by their patients (60 vs. 43 %, p = 0.02).

Conclusions

Although POs acknowledge the importance of early referral to SPC for children with cancer, there remain resource and attitudinal barriers to overcome in this regard.
Literature
2.
go back to reference von Lutzau P et al (2012) Children dying from cancer: parents’ perspectives on symptoms, quality of life, characteristics of death, and end-of-life decisions. J Palliat Care 28(4):274–281 von Lutzau P et al (2012) Children dying from cancer: parents’ perspectives on symptoms, quality of life, characteristics of death, and end-of-life decisions. J Palliat Care 28(4):274–281
3.
go back to reference Wolfe J et al (2000) Symptoms and suffering at the end of life in children with cancer. N Engl J Med 342(5):326–333PubMedCrossRef Wolfe J et al (2000) Symptoms and suffering at the end of life in children with cancer. N Engl J Med 342(5):326–333PubMedCrossRef
4.
go back to reference Wolfe J et al (2008) Easing of suffering in children with cancer at the end of life: is care changing? J Clin Oncol 26(10):1717–1723PubMedCrossRef Wolfe J et al (2008) Easing of suffering in children with cancer at the end of life: is care changing? J Clin Oncol 26(10):1717–1723PubMedCrossRef
5.
go back to reference Tomlinson D et al (2011) Parent reports of quality of life for pediatric patients with cancer with no realistic chance of cure. J Clin Oncol 29(6):639–645PubMedCrossRef Tomlinson D et al (2011) Parent reports of quality of life for pediatric patients with cancer with no realistic chance of cure. J Clin Oncol 29(6):639–645PubMedCrossRef
6.
go back to reference Hilden JM et al (2001) Attitudes and practices among pediatric oncologists regarding end-of-life care: results of the 1998 American Society of Clinical Oncology survey. J Clin Oncol 19(1):205–212PubMed Hilden JM et al (2001) Attitudes and practices among pediatric oncologists regarding end-of-life care: results of the 1998 American Society of Clinical Oncology survey. J Clin Oncol 19(1):205–212PubMed
7.
go back to reference Johnston DL et al (2008) Availability and use of palliative care and end-of-life services for pediatric oncology patients. J Clin Oncol 26(28):4646–4650PubMedCrossRef Johnston DL et al (2008) Availability and use of palliative care and end-of-life services for pediatric oncology patients. J Clin Oncol 26(28):4646–4650PubMedCrossRef
9.
go back to reference (2000) American Academy of Pediatrics. Committee on Bioethics and Committee on Hospital Care. Palliative Care for Children. Pediatrics 106(2 Pt 1):351–357 (2000) American Academy of Pediatrics. Committee on Bioethics and Committee on Hospital Care. Palliative Care for Children. Pediatrics 106(2 Pt 1):351–357
10.
go back to reference Ahmedzai SH et al (2004) A new international framework for palliative care. Eur J Cancer 40(15):2192–2200PubMedCrossRef Ahmedzai SH et al (2004) A new international framework for palliative care. Eur J Cancer 40(15):2192–2200PubMedCrossRef
11.
go back to reference Smith TJ et al (2012) American Society of Clinical Oncology provisional clinical opinion: the integration of palliative care into standard oncology care. J Clin Oncol 30(8):880–887PubMedCrossRef Smith TJ et al (2012) American Society of Clinical Oncology provisional clinical opinion: the integration of palliative care into standard oncology care. J Clin Oncol 30(8):880–887PubMedCrossRef
13.
go back to reference Wentlandt K et al (2012) Referral practices of oncologists to specialized palliative care. J Clin Oncol 30(35):4380–4386PubMedCrossRef Wentlandt K et al (2012) Referral practices of oncologists to specialized palliative care. J Clin Oncol 30(35):4380–4386PubMedCrossRef
14.
go back to reference Vadeboncoeur CM et al (2010) A paediatric palliative care programme in development: trends in referral and location of death. Arch Dis Child 95(9):686–689PubMedCrossRef Vadeboncoeur CM et al (2010) A paediatric palliative care programme in development: trends in referral and location of death. Arch Dis Child 95(9):686–689PubMedCrossRef
15.
go back to reference Widger K et al (2007) Pediatric patients receiving palliative care in Canada: results of a multicenter review. Arch Pediatr Adolesc Med 161(6):597–602PubMedCrossRef Widger K et al (2007) Pediatric patients receiving palliative care in Canada: results of a multicenter review. Arch Pediatr Adolesc Med 161(6):597–602PubMedCrossRef
16.
go back to reference Frager G (1996) Pediatric palliative care: building the model, bridging the gaps. J Palliat Care 12(3):9–12PubMed Frager G (1996) Pediatric palliative care: building the model, bridging the gaps. J Palliat Care 12(3):9–12PubMed
17.
go back to reference Toce S, Collins MA (2003) The FOOTPRINTS model of pediatric palliative care. J Palliat Med 6(6):989–1000PubMedCrossRef Toce S, Collins MA (2003) The FOOTPRINTS model of pediatric palliative care. J Palliat Med 6(6):989–1000PubMedCrossRef
18.
go back to reference Byock I et al (2006) Promoting excellence in end-of-life care: a report on innovative models of palliative care. J Palliat Med 9(1):137–151PubMedCrossRef Byock I et al (2006) Promoting excellence in end-of-life care: a report on innovative models of palliative care. J Palliat Med 9(1):137–151PubMedCrossRef
19.
go back to reference Carroll JM et al (2007) Partners in pediatric palliative care: a program to enhance collaboration between hospital and community palliative care services. Am J Hosp Palliat Care 24(3):191–195PubMedCrossRef Carroll JM et al (2007) Partners in pediatric palliative care: a program to enhance collaboration between hospital and community palliative care services. Am J Hosp Palliat Care 24(3):191–195PubMedCrossRef
20.
go back to reference Knapp C et al (2011) Pediatric palliative care provision around the world: a systematic review. Pediatr Blood Cancer 57(3):361–368PubMedCrossRef Knapp C et al (2011) Pediatric palliative care provision around the world: a systematic review. Pediatr Blood Cancer 57(3):361–368PubMedCrossRef
21.
go back to reference Johnston DL et al (2007) Underutilization of palliative care resources for pediatric oncology patients in Canada: results of a Children’s Oncology Group Palliative Medicine Committee Survey. Support Palliat Cancer Care 3:77–82 Johnston DL et al (2007) Underutilization of palliative care resources for pediatric oncology patients in Canada: results of a Children’s Oncology Group Palliative Medicine Committee Survey. Support Palliat Cancer Care 3:77–82
22.
go back to reference Follwell M et al (2009) Phase II study of an outpatient palliative care intervention in patients with metastatic cancer. J Clin Oncol 27(2):206–213PubMedCrossRef Follwell M et al (2009) Phase II study of an outpatient palliative care intervention in patients with metastatic cancer. J Clin Oncol 27(2):206–213PubMedCrossRef
24.
go back to reference Tomlinson D et al (2011) Chemotherapy versus supportive care alone in pediatric palliative care for cancer: comparing the preferences of parents and health care professionals. CMAJ 183(17):E1252–E1258PubMedCentralPubMedCrossRef Tomlinson D et al (2011) Chemotherapy versus supportive care alone in pediatric palliative care for cancer: comparing the preferences of parents and health care professionals. CMAJ 183(17):E1252–E1258PubMedCentralPubMedCrossRef
25.
go back to reference Kassam A et al (2013) Moving toward quality palliative cancer care: parent and clinician perspectives on gaps between what matters and what is accessible. J Clin Oncol 31(7):910–915PubMedCrossRef Kassam A et al (2013) Moving toward quality palliative cancer care: parent and clinician perspectives on gaps between what matters and what is accessible. J Clin Oncol 31(7):910–915PubMedCrossRef
26.
go back to reference Bluebond-Langner M et al (2007) Understanding parents’ approaches to care and treatment of children with cancer when standard therapy has failed. J Clin Oncol 25(17):2414–2419PubMedCrossRef Bluebond-Langner M et al (2007) Understanding parents’ approaches to care and treatment of children with cancer when standard therapy has failed. J Clin Oncol 25(17):2414–2419PubMedCrossRef
27.
go back to reference Pritchard M et al (2008) Cancer-related symptoms most concerning to parents during the last week and last day of their child’s life. Pediatrics 121(5):e1301–e1309PubMedCrossRef Pritchard M et al (2008) Cancer-related symptoms most concerning to parents during the last week and last day of their child’s life. Pediatrics 121(5):e1301–e1309PubMedCrossRef
28.
go back to reference Pritchard M et al (2010) Factors that distinguish symptoms of most concern to parents from other symptoms of dying children. J Pain Symptom Manag 39(4):627–636CrossRef Pritchard M et al (2010) Factors that distinguish symptoms of most concern to parents from other symptoms of dying children. J Pain Symptom Manag 39(4):627–636CrossRef
29.
go back to reference Jalmsell L et al (2013) Transition to noncurative end-of-life care in paediatric oncology—a nationwide follow-up in Sweden. Acta Paediatr 102(7):744–748PubMedCrossRef Jalmsell L et al (2013) Transition to noncurative end-of-life care in paediatric oncology—a nationwide follow-up in Sweden. Acta Paediatr 102(7):744–748PubMedCrossRef
30.
go back to reference Kars MC et al (2011) Parental experience at the end-of-life in children with cancer: ‘preservation’ and ‘letting go’ in relation to loss. Support Care Cancer 19(1):27–35PubMedCrossRef Kars MC et al (2011) Parental experience at the end-of-life in children with cancer: ‘preservation’ and ‘letting go’ in relation to loss. Support Care Cancer 19(1):27–35PubMedCrossRef
31.
go back to reference Bergstraesser E (2013) Pediatric palliative care-when quality of life becomes the main focus of treatment. Eur J Pediatr 172(2):139–150PubMedCrossRef Bergstraesser E (2013) Pediatric palliative care-when quality of life becomes the main focus of treatment. Eur J Pediatr 172(2):139–150PubMedCrossRef
32.
go back to reference Knapp C, Thompson L (2012) Factors associated with perceived barriers to pediatric palliative care: a survey of pediatricians in Florida and California. Palliat Med 26(3):268–274PubMedCrossRef Knapp C, Thompson L (2012) Factors associated with perceived barriers to pediatric palliative care: a survey of pediatricians in Florida and California. Palliat Med 26(3):268–274PubMedCrossRef
33.
go back to reference Davies B et al (2008) Barriers to palliative care for children: perceptions of pediatric health care providers. Pediatrics 121(2):282–288PubMedCrossRef Davies B et al (2008) Barriers to palliative care for children: perceptions of pediatric health care providers. Pediatrics 121(2):282–288PubMedCrossRef
34.
go back to reference Kang TI et al (2013) The use of palliative chemotherapy in pediatric oncology patients: a national survey of pediatric oncologists. Pediatr Blood Cancer 60(1):88–94PubMedCrossRef Kang TI et al (2013) The use of palliative chemotherapy in pediatric oncology patients: a national survey of pediatric oncologists. Pediatr Blood Cancer 60(1):88–94PubMedCrossRef
36.
go back to reference Varela AM et al (2012) Barriers to hospice for children as perceived by hospice organizations in North Carolina. Am J Hosp Palliat Care 29(3):171–176PubMedCrossRef Varela AM et al (2012) Barriers to hospice for children as perceived by hospice organizations in North Carolina. Am J Hosp Palliat Care 29(3):171–176PubMedCrossRef
37.
go back to reference Dalal S et al (2011) Association between a name change from palliative to supportive care and the timing of patient referrals at a comprehensive cancer center. Oncologist 16(1):105–111PubMedCentralPubMedCrossRef Dalal S et al (2011) Association between a name change from palliative to supportive care and the timing of patient referrals at a comprehensive cancer center. Oncologist 16(1):105–111PubMedCentralPubMedCrossRef
38.
go back to reference Fadul N et al (2009) Supportive versus palliative care: what’s in a name?: a survey of medical oncologists and midlevel providers at a comprehensive cancer center. Cancer 115(9):2013–2021PubMedCrossRef Fadul N et al (2009) Supportive versus palliative care: what’s in a name?: a survey of medical oncologists and midlevel providers at a comprehensive cancer center. Cancer 115(9):2013–2021PubMedCrossRef
39.
go back to reference Morstad Boldt A, Yusuf F, Himelstein BP (2006) Perceptions of the term palliative care. J Palliat Med 9(5):1128–1136PubMedCrossRef Morstad Boldt A, Yusuf F, Himelstein BP (2006) Perceptions of the term palliative care. J Palliat Med 9(5):1128–1136PubMedCrossRef
40.
go back to reference Byrne M et al (2011) Qualitative analysis of consults by a pediatric advanced care team during its first year of service. Am J Hosp Palliat Care 28(2):109–117PubMedCrossRef Byrne M et al (2011) Qualitative analysis of consults by a pediatric advanced care team during its first year of service. Am J Hosp Palliat Care 28(2):109–117PubMedCrossRef
41.
go back to reference Asch DA, Jedrziewski MK, Christakis NA (1997) Response rates to mail surveys published in medical journals. J Clin Epidemiol 50(10):1129–1136PubMedCrossRef Asch DA, Jedrziewski MK, Christakis NA (1997) Response rates to mail surveys published in medical journals. J Clin Epidemiol 50(10):1129–1136PubMedCrossRef
42.
44.
go back to reference McCulloch R, Comac M, Craig F (2008) Paediatric palliative care: coming of age in oncology? Eur J Cancer 44(8):1139–1145PubMedCrossRef McCulloch R, Comac M, Craig F (2008) Paediatric palliative care: coming of age in oncology? Eur J Cancer 44(8):1139–1145PubMedCrossRef
Metadata
Title
Referral practices of pediatric oncologists to specialized palliative care
Authors
Kirsten Wentlandt
Monika K. Krzyzanowska
Nadia Swami
Gary Rodin
Lisa W. Le
Lillian Sung
Camilla Zimmermann
Publication date
01-09-2014
Publisher
Springer Berlin Heidelberg
Published in
Supportive Care in Cancer / Issue 9/2014
Print ISSN: 0941-4355
Electronic ISSN: 1433-7339
DOI
https://doi.org/10.1007/s00520-014-2203-6

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