Integration of Palliative Care in Hematopoietic Cell Transplant: Pediatric Patient and Parent Needs and Attitudes
Early integration of palliative care (PC) in hematopoietic cell transplantation (HCT) has demonstrated benefits, yet barriers remain, including perceived lack of patient/caregiver receptivity despite no data on attitudes toward PC and limited patient/caregiver reported outcomes in pediatric HCT. Thi...
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| Veröffentlicht in: | Journal of pain and symptom management 2023-09, Vol.66 (3), p.248-257 |
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| container_title | Journal of pain and symptom management |
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| creator | Levine, Deena R. Epperly, Rebecca Collins, Griffin Talleur, Aimee C. Mandrell, Belinda Pritchard, Michele Sarvode Mothi, Suraj Li, Chen Lu, Zhaohua Baker, Justin N. |
| description | Early integration of palliative care (PC) in hematopoietic cell transplantation (HCT) has demonstrated benefits, yet barriers remain, including perceived lack of patient/caregiver receptivity despite no data on attitudes toward PC and limited patient/caregiver reported outcomes in pediatric HCT.
This study aimed to evaluate perceived symptom burden and patient/parent attitudes toward early PC integration in pediatric HCT.
Following IRB approval, consent/assent, eligible participants were surveyed at St. Jude Children's Research Hospital including English-speaking patients aged 10–17, 1-month to 1-year from HCT, and their parents/primary-caregivers, as well as parent/primary-caregivers of living HCT recipients |
| doi_str_mv | 10.1016/j.jpainsymman.2023.06.005 |
| format | Article |
| fullrecord | <record><control><sourceid>proquest_cross</sourceid><recordid>TN_cdi_proquest_miscellaneous_2825159272</recordid><sourceformat>XML</sourceformat><sourcesystem>PC</sourcesystem><els_id>S0885392423005328</els_id><sourcerecordid>2825159272</sourcerecordid><originalsourceid>FETCH-LOGICAL-c321t-177e02c06d6394ed930618775697967f863f94389618a7b47dde65cb3c6177f3</originalsourceid><addsrcrecordid>eNqNkMtu2zAQRYmiReK4-YWC3XUjlQ-LFLsLhLwAI_HCe4ImRwUNiVJIOkD-PnScBF12NQ_eO8M5CP2kpKaEit_7ej8bH9LLOJpQM8J4TURNSPMFLWgreSUayr-iBWnbpuKKrc7RRUp7UhRc8DN0ziUnrOF0gZ7uQ4a_0WQ_BTz1eGOGwZfqGXBnImAf8B2MJk_z5CF7izsYBryNJqR5MCH_wRtwxRDL06b4IGRsgit5PKYPAC69Na5y9vngIH1H33ozJLh8j0u0vbnednfV-vH2vrtaV5YzmisqJRBmiXCCqxU4xYkot8lGKKmE7FvBe7XirSpdI3cr6RyIxu64FcXa8yX6dRo7x-npACnr0SdbPm8CTIekWcsa2igmWZGqk9TGKaUIvZ6jH0180ZToI3C91_8A10fgmgh9xLlEP97XHHYjuE_nB-Ei6E4CKLc-e4g62ULJFmoRbNZu8v-x5hUZh5fT</addsrcrecordid><sourcetype>Aggregation Database</sourcetype><iscdi>true</iscdi><recordtype>article</recordtype><pqid>2825159272</pqid></control><display><type>article</type><title>Integration of Palliative Care in Hematopoietic Cell Transplant: Pediatric Patient and Parent Needs and Attitudes</title><source>Elsevier ScienceDirect Journals</source><creator>Levine, Deena R. ; Epperly, Rebecca ; Collins, Griffin ; Talleur, Aimee C. ; Mandrell, Belinda ; Pritchard, Michele ; Sarvode Mothi, Suraj ; Li, Chen ; Lu, Zhaohua ; Baker, Justin N.</creator><creatorcontrib>Levine, Deena R. ; Epperly, Rebecca ; Collins, Griffin ; Talleur, Aimee C. ; Mandrell, Belinda ; Pritchard, Michele ; Sarvode Mothi, Suraj ; Li, Chen ; Lu, Zhaohua ; Baker, Justin N.</creatorcontrib><description>Early integration of palliative care (PC) in hematopoietic cell transplantation (HCT) has demonstrated benefits, yet barriers remain, including perceived lack of patient/caregiver receptivity despite no data on attitudes toward PC and limited patient/caregiver reported outcomes in pediatric HCT.
This study aimed to evaluate perceived symptom burden and patient/parent attitudes toward early PC integration in pediatric HCT.
Following IRB approval, consent/assent, eligible participants were surveyed at St. Jude Children's Research Hospital including English-speaking patients aged 10–17, 1-month to 1-year from HCT, and their parents/primary-caregivers, as well as parent/primary-caregivers of living HCT recipients <age-10. Data were assessed for trends in response content frequencies, percentages, and associations.
Eighty one participants, within one year of HCT, at St. Jude Children's Research Hospital were enrolled including: 36 parents of patients<age-10, 24 parents of patients ≥age-10, and 21 patients≥age-10. Most (65%) were 1–3 months from HCT. Analysis revealed high levels of perceived symptom suffering in the first month of HCT. 85.7% of patients and 73.4% of parents expressed that a-great-deal/a-lot of attention should be paid to quality-of-life from the start of HCT. Most respondents (patients-52.4/parents-50%) indicated they would likely have wanted early PC consult and very few (0%-patients/3.3%-parents) reported definite opposition to early PC involvement in HCT.
Our findings suggest that patient/family receptivity should not be a barrier to early PC in pediatric HCT; obtaining patient reported outcomes is a priority in the setting of high symptom burden; and robust quality-of-life directed care with early PC integration is both indicated and acceptable to patients/caregivers.</description><identifier>ISSN: 0885-3924</identifier><identifier>EISSN: 1873-6513</identifier><identifier>DOI: 10.1016/j.jpainsymman.2023.06.005</identifier><identifier>PMID: 37302531</identifier><language>eng</language><publisher>United States: Elsevier Inc</publisher><subject>caregivers ; hematopoietic cell transplantation ; Palliative care ; patients ; pediatrics ; quality of life</subject><ispartof>Journal of pain and symptom management, 2023-09, Vol.66 (3), p.248-257</ispartof><rights>2023 American Academy of Hospice and Palliative Medicine</rights><rights>Copyright © 2023. Published by Elsevier Inc.</rights><lds50>peer_reviewed</lds50><woscitedreferencessubscribed>false</woscitedreferencessubscribed><cites>FETCH-LOGICAL-c321t-177e02c06d6394ed930618775697967f863f94389618a7b47dde65cb3c6177f3</cites><orcidid>0000-0002-8998-0732 ; 0000-0003-4408-2936 ; 0000-0002-3206-5648 ; 0000-0002-6584-6483</orcidid></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktohtml>$$Uhttps://www.sciencedirect.com/science/article/pii/S0885392423005328$$EHTML$$P50$$Gelsevier$$H</linktohtml><link.rule.ids>314,776,780,3537,27901,27902,65306</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/37302531$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Levine, Deena R.</creatorcontrib><creatorcontrib>Epperly, Rebecca</creatorcontrib><creatorcontrib>Collins, Griffin</creatorcontrib><creatorcontrib>Talleur, Aimee C.</creatorcontrib><creatorcontrib>Mandrell, Belinda</creatorcontrib><creatorcontrib>Pritchard, Michele</creatorcontrib><creatorcontrib>Sarvode Mothi, Suraj</creatorcontrib><creatorcontrib>Li, Chen</creatorcontrib><creatorcontrib>Lu, Zhaohua</creatorcontrib><creatorcontrib>Baker, Justin N.</creatorcontrib><title>Integration of Palliative Care in Hematopoietic Cell Transplant: Pediatric Patient and Parent Needs and Attitudes</title><title>Journal of pain and symptom management</title><addtitle>J Pain Symptom Manage</addtitle><description>Early integration of palliative care (PC) in hematopoietic cell transplantation (HCT) has demonstrated benefits, yet barriers remain, including perceived lack of patient/caregiver receptivity despite no data on attitudes toward PC and limited patient/caregiver reported outcomes in pediatric HCT.
This study aimed to evaluate perceived symptom burden and patient/parent attitudes toward early PC integration in pediatric HCT.
Following IRB approval, consent/assent, eligible participants were surveyed at St. Jude Children's Research Hospital including English-speaking patients aged 10–17, 1-month to 1-year from HCT, and their parents/primary-caregivers, as well as parent/primary-caregivers of living HCT recipients <age-10. Data were assessed for trends in response content frequencies, percentages, and associations.
Eighty one participants, within one year of HCT, at St. Jude Children's Research Hospital were enrolled including: 36 parents of patients<age-10, 24 parents of patients ≥age-10, and 21 patients≥age-10. Most (65%) were 1–3 months from HCT. Analysis revealed high levels of perceived symptom suffering in the first month of HCT. 85.7% of patients and 73.4% of parents expressed that a-great-deal/a-lot of attention should be paid to quality-of-life from the start of HCT. Most respondents (patients-52.4/parents-50%) indicated they would likely have wanted early PC consult and very few (0%-patients/3.3%-parents) reported definite opposition to early PC involvement in HCT.
Our findings suggest that patient/family receptivity should not be a barrier to early PC in pediatric HCT; obtaining patient reported outcomes is a priority in the setting of high symptom burden; and robust quality-of-life directed care with early PC integration is both indicated and acceptable to patients/caregivers.</description><subject>caregivers</subject><subject>hematopoietic cell transplantation</subject><subject>Palliative care</subject><subject>patients</subject><subject>pediatrics</subject><subject>quality of life</subject><issn>0885-3924</issn><issn>1873-6513</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2023</creationdate><recordtype>article</recordtype><recordid>eNqNkMtu2zAQRYmiReK4-YWC3XUjlQ-LFLsLhLwAI_HCe4ImRwUNiVJIOkD-PnScBF12NQ_eO8M5CP2kpKaEit_7ej8bH9LLOJpQM8J4TURNSPMFLWgreSUayr-iBWnbpuKKrc7RRUp7UhRc8DN0ziUnrOF0gZ7uQ4a_0WQ_BTz1eGOGwZfqGXBnImAf8B2MJk_z5CF7izsYBryNJqR5MCH_wRtwxRDL06b4IGRsgit5PKYPAC69Na5y9vngIH1H33ozJLh8j0u0vbnednfV-vH2vrtaV5YzmisqJRBmiXCCqxU4xYkot8lGKKmE7FvBe7XirSpdI3cr6RyIxu64FcXa8yX6dRo7x-npACnr0SdbPm8CTIekWcsa2igmWZGqk9TGKaUIvZ6jH0180ZToI3C91_8A10fgmgh9xLlEP97XHHYjuE_nB-Ei6E4CKLc-e4g62ULJFmoRbNZu8v-x5hUZh5fT</recordid><startdate>20230901</startdate><enddate>20230901</enddate><creator>Levine, Deena R.</creator><creator>Epperly, Rebecca</creator><creator>Collins, Griffin</creator><creator>Talleur, Aimee C.</creator><creator>Mandrell, Belinda</creator><creator>Pritchard, Michele</creator><creator>Sarvode Mothi, Suraj</creator><creator>Li, Chen</creator><creator>Lu, Zhaohua</creator><creator>Baker, Justin N.</creator><general>Elsevier Inc</general><scope>NPM</scope><scope>AAYXX</scope><scope>CITATION</scope><scope>7X8</scope><orcidid>https://orcid.org/0000-0002-8998-0732</orcidid><orcidid>https://orcid.org/0000-0003-4408-2936</orcidid><orcidid>https://orcid.org/0000-0002-3206-5648</orcidid><orcidid>https://orcid.org/0000-0002-6584-6483</orcidid></search><sort><creationdate>20230901</creationdate><title>Integration of Palliative Care in Hematopoietic Cell Transplant: Pediatric Patient and Parent Needs and Attitudes</title><author>Levine, Deena R. ; Epperly, Rebecca ; Collins, Griffin ; Talleur, Aimee C. ; Mandrell, Belinda ; Pritchard, Michele ; Sarvode Mothi, Suraj ; Li, Chen ; Lu, Zhaohua ; Baker, Justin N.</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c321t-177e02c06d6394ed930618775697967f863f94389618a7b47dde65cb3c6177f3</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2023</creationdate><topic>caregivers</topic><topic>hematopoietic cell transplantation</topic><topic>Palliative care</topic><topic>patients</topic><topic>pediatrics</topic><topic>quality of life</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Levine, Deena R.</creatorcontrib><creatorcontrib>Epperly, Rebecca</creatorcontrib><creatorcontrib>Collins, Griffin</creatorcontrib><creatorcontrib>Talleur, Aimee C.</creatorcontrib><creatorcontrib>Mandrell, Belinda</creatorcontrib><creatorcontrib>Pritchard, Michele</creatorcontrib><creatorcontrib>Sarvode Mothi, Suraj</creatorcontrib><creatorcontrib>Li, Chen</creatorcontrib><creatorcontrib>Lu, Zhaohua</creatorcontrib><creatorcontrib>Baker, Justin N.</creatorcontrib><collection>PubMed</collection><collection>CrossRef</collection><collection>MEDLINE - Academic</collection><jtitle>Journal of pain and symptom management</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Levine, Deena R.</au><au>Epperly, Rebecca</au><au>Collins, Griffin</au><au>Talleur, Aimee C.</au><au>Mandrell, Belinda</au><au>Pritchard, Michele</au><au>Sarvode Mothi, Suraj</au><au>Li, Chen</au><au>Lu, Zhaohua</au><au>Baker, Justin N.</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>Integration of Palliative Care in Hematopoietic Cell Transplant: Pediatric Patient and Parent Needs and Attitudes</atitle><jtitle>Journal of pain and symptom management</jtitle><addtitle>J Pain Symptom Manage</addtitle><date>2023-09-01</date><risdate>2023</risdate><volume>66</volume><issue>3</issue><spage>248</spage><epage>257</epage><pages>248-257</pages><issn>0885-3924</issn><eissn>1873-6513</eissn><abstract>Early integration of palliative care (PC) in hematopoietic cell transplantation (HCT) has demonstrated benefits, yet barriers remain, including perceived lack of patient/caregiver receptivity despite no data on attitudes toward PC and limited patient/caregiver reported outcomes in pediatric HCT.
This study aimed to evaluate perceived symptom burden and patient/parent attitudes toward early PC integration in pediatric HCT.
Following IRB approval, consent/assent, eligible participants were surveyed at St. Jude Children's Research Hospital including English-speaking patients aged 10–17, 1-month to 1-year from HCT, and their parents/primary-caregivers, as well as parent/primary-caregivers of living HCT recipients <age-10. Data were assessed for trends in response content frequencies, percentages, and associations.
Eighty one participants, within one year of HCT, at St. Jude Children's Research Hospital were enrolled including: 36 parents of patients<age-10, 24 parents of patients ≥age-10, and 21 patients≥age-10. Most (65%) were 1–3 months from HCT. Analysis revealed high levels of perceived symptom suffering in the first month of HCT. 85.7% of patients and 73.4% of parents expressed that a-great-deal/a-lot of attention should be paid to quality-of-life from the start of HCT. Most respondents (patients-52.4/parents-50%) indicated they would likely have wanted early PC consult and very few (0%-patients/3.3%-parents) reported definite opposition to early PC involvement in HCT.
Our findings suggest that patient/family receptivity should not be a barrier to early PC in pediatric HCT; obtaining patient reported outcomes is a priority in the setting of high symptom burden; and robust quality-of-life directed care with early PC integration is both indicated and acceptable to patients/caregivers.</abstract><cop>United States</cop><pub>Elsevier Inc</pub><pmid>37302531</pmid><doi>10.1016/j.jpainsymman.2023.06.005</doi><tpages>10</tpages><orcidid>https://orcid.org/0000-0002-8998-0732</orcidid><orcidid>https://orcid.org/0000-0003-4408-2936</orcidid><orcidid>https://orcid.org/0000-0002-3206-5648</orcidid><orcidid>https://orcid.org/0000-0002-6584-6483</orcidid></addata></record> |
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| subjects | caregivers hematopoietic cell transplantation Palliative care patients pediatrics quality of life |
| title | Integration of Palliative Care in Hematopoietic Cell Transplant: Pediatric Patient and Parent Needs and Attitudes |
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