Perceptions of specialty palliative care and its role in pediatric stem cell transplant: A multidisciplinary qualitative study
pediatric; psychosocial; palliative care; quality of life; qualitative research; stem cell transplantation; BMT
Background: Consultation of specialty palliative care remains uncommon in pediatric stem cell transplant (SCT) despite growing evidence that early integration of palliative care improves outcomes in patients with advanced cancers or undergoing SCT. Little is known about how multidisciplinary pediatric SCT teams perceive palliative care and its role in SCT. Procedure: We conducted semistructured interviews of members of a multi-disciplinary SCT team to understand their perceptions of palliative care, how specialty palliative care is integrated into SCT, and to identify barriers to increased integration. Eligible participants included physicians, nurses, inpatient nurse practitioners, social workers, and child life specialists. Data were analyzed using thematic analysis. Result(s): Four major themes were identified. First, SCT team members held a favorable perception of the palliative care team. Second, participants desired increased palliative care integration in SCT. Third, participants believed that the palliative care team had insufficient resources to care for the large number of SCT patients, which led to the SCT team limiting palliative care consultation. And, finally, the lack of a standardized palliative care consultation process prevented greater integration of palliative care in SCT. Conclusion(s): SCT team members held a favorable perception of palliative care and saw a role for greater palliative care integration throughout the SCT course. We identified modifiable barriers to greater palliative care integration. SCT teams who desire greater palliative care integration may adapt and implement an existing model of palliative care integration in order to improve standardization and increase integration of specialty palliative care in SCT. Copyright © 2021 Wiley Periodicals LLC
Collins GS; Beaman H; Ho AM; Hermiston ML; Cohen HJ; Dzeng EW
Pediatric Blood and Cancer
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1002/pbc.29424" target="_blank" rel="noreferrer noopener">10.1002/pbc.29424</a>
Symptoms in children/young people with progressive malignant disease: United Kingdom Children's Cancer Study Group/Paediatric Oncology Nurses Forum survey.
Child; Female; Humans; Male; Adult; Questionnaires; Prospective Studies; Disease Progression; Longitudinal Studies; adolescent; Preschool; infant; Neoplasms/complications/diagnosis
AIM: The purpose of this study was to survey symptoms in children/young people with progressive cancer and identify which are the most important and which are the most difficult to treat effectively. PATIENTS AND METHODS: This was a questionnaire survey of 22 United Kingdom Children's Cancer Study Group centers. Data were collected by clinical nurse specialists in pediatric oncology regarding children/young people between 0 and 20 years of age, using 2 questionnaires. The first collected demographic details and the second data about the occurrence and perceived impact of symptoms. RESULTS: There were 185 children/young people from 20 centers registered in the study, aged 4 months to 19 years (mean: 8.7 years), who received palliative care for a median of 34 days (range: 0-354 days). Data were analyzed for 164 children/young people who died during the study. Between referral to palliative care and death, there were significant increases in the number of symptoms reported and children/young people experiencing pain (70.6% vs 91.5%). Symptoms included some that often go unrecognized in children/young people, for example, anorexia, weight loss, and weakness. The nature of the underlying malignancy significantly influenced the prevalence of some symptoms. There were significant differences between the symptoms associated with central nervous system tumors and other groups. Pain other than headache occurred more commonly in children with solid tumors (98.4%) than in others (87%). Neurologic symptoms, including headache, were universal among those with central nervous system tumors. CONCLUSION: This study documents the frequency of symptoms and contrasts the experiences of children/young people with different groups of malignant disease. With access to skilled symptom control, pain can be effectively treated in most children/young people. Some other symptoms often remain intractable. The study highlights the need for further research to establish the effectiveness of therapeutic interventions for symptom control and their impact on the quality of life for children/young people dying from cancer.
2006
Goldman A; Hewitt M; Collins GS; Childs M; Hain R; United Kingdom Children's Cancer Study Group/Paediatric Oncology Nurses' Forum Palliative Care Working Group
Pediatrics
2006
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1542/peds.2005-0683" target="_blank" rel="noreferrer">10.1542/peds.2005-0683</a>
Opioid use in palliative care of children and young people with cancer
Child; Female; Humans; Male; Great Britain; Adult; Analgesics; Questionnaires; Prospective Studies; Research Design; Longitudinal Studies; Therapeutic Equivalency; Prescriptions; adolescent; Preschool; infant; Administration; Oral; Pain/drug therapy/etiology; Palliative Care/methods; Infusions; Injections; Intravenous; Neoplasms/complications; Subcutaneous; Drug/statistics & numerical data; Opioid/administration & dosage/therapeutic use; Fentanyl/therapeutic use; Heroin/therapeutic use; Morphine/therapeutic use; Rectal
OBJECTIVE: Identify opioids prescribed, preferred routes, and doses among children with incurable cancer. STUDY DESIGN: Prospective survey with monthly questionnaires regarding patients 0 to 19 years old from oncology centers. Data were collected by professionals on each patient for 6 months or until death, and analyzed from patients who died. Impact of tumor was analyzed with Kruskal-Wallis and Mann-Whitney tests. Major opioid dosages are expressed as oral morphine equivalents. RESULTS: Of 185 children recruited, 164 (88 boys, 76 girls) died. Mean palliative care duration was 67 days. One hundred forty-seven (89.6%) received major opioids. Morphine, diamorphine, and fentanyl were prescribed in 75%, 57.9%, and 11.6%, respectively. Seventy-three (44.5%) received >1 major opioid. Median monthly maximum doses prescribed rose from 2.1 mg/kg/24 h (study entry) to 4.4 mg/kg/24 h (death) (P < .001); overall variable (0.09-1500 mg/kg/24 h, median 3.7 mg/kg/24 h). Opioids were given by the oral (117/164, 71.3%), intravenous (68/164, 41.5%), subcutaneous (40, 28%), rectal (20, 12.2%), and transdermal (18, 11%) routes. There was a shift to intravenous use as death approached. Numbers within each tumor group were too small to show significance. Children with solid tumors outside the central nervous system were likely to receive more opioids, be given multiple different opioids, and receive opioids in the last month. CONCLUSIONS: The study shows the United Kingdom practice of opioid use and provides comparator data for practice in children's palliative medicine.
2008
Hewitt M; Goldman A; Collins GS; Childs M; Hain R
The Journal Of Pediatrics
2008
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1016/j.jpeds.2007.07.005" target="_blank" rel="noreferrer">10.1016/j.jpeds.2007.07.005</a>
Place and provision of palliative care for children with progressive cancer: a study by the Paediatric Oncology Nurses' Forum/United Kingdom Children's Cancer Study Group Palliative Care Working Group
Child; Female; Humans; Male; Great Britain; Adult; Prospective Studies; Patient Satisfaction; adolescent; Preschool; Palliative Care/organization & administration; bereavement; infant; Models; location of death; Organizational; Home Care Services/organization & administration; Child Health Services/organization & administration; Patient Care Team/organization & administration; Neoplasms/nursing/therapy
PURPOSE: The purpose of this study was to describe and show effectiveness of the outreach team model of palliative care (PC) in allowing home death for children with incurable cancer. PATIENTS AND METHODS: Over 7 months, 185 children from 22 United Kingdom oncology centers were recruited to a prospective questionnaire survey. RESULTS: One hundred sixty-four children from 22 centers died (median age, 8.7 years; 88 boys, 76 girls). One hundred twenty-six families completed two or more questionnaires. One hundred twenty (77%) of 155 with complete data died at home. Preference for home death was recorded in 90 (68%) of 164 and 132 (80%) 164 at study entry and last month of life, respectively. Death occurred in preferred place for 84 (80%) of 105 with recorded preference at entry. Forty-one (25%) of 164 and 68 (41.5%) of 164 needed no outpatient or inpatient hospital visits, respectively. A named individual provided on-call PC advice by phone or home visit in 22 (100%) and 18 (82%) of 22 oncology centers, respectively. As PC progressed, involvement of oncologist and social worker appeared less, whereas pediatric oncology outreach nurse specialists (POONSs) remained prominent. CONCLUSION: Preference for home death expressed by families in our study is similar to others, but the proportion of children actually able to die there is higher. Home death is facilitated by this model. Key components are POONSs, pediatric palliative and/or oncology specialist, and general practitioner. Professional roles change during PC and after death. An ongoing role for the oncology team in bereavement support is highlighted.
2007
Vickers J; Thompson A; Collins GS; Childs M; Hain R; Paediatric Oncology Nurses' Forum/United Kingdom Children's Cancer Study Group Palliative Care Working Group
Journal Of Clinical Oncology
2007
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1200/JCO.2007.12.0493" target="_blank" rel="noreferrer">10.1200/JCO.2007.12.0493</a>