Perceptions of specialty palliative care and its role in pediatric stem cell transplant: A multidisciplinary qualitative study

7034 Background: The impacts of advance care planning (ACP) on end-of-life (EOL) outcomes in allogeneic hematopoietic stem cell transplant (allo HCT) recipients are not well known. ACP includes advance directive (AD) completion, and palliative care (PC) consultation. Using these two components, we aimed to explore the current state of ACP and its impact on EOL outcomes in allo HCT recipients to provide the groundwork for future prospective studies. Methods: We performed a retrospective study of deceased adult patients who underwent allo HCT between December 2015-December 2019. We summarized patient characteristics, the rate of AD completion, PC consultation, and location of end-of-life (EOL). Univariate and multivariate analyses were performed to evaluate patient characteristics that may be associated with AD completion, PC consultation and assess the impact of these two factors on location of EOL. Results: See Table for summary of patient characteristics. Of the 125 patients included, we found that 66% (n = 82) completed ADs. All patients with ADs completed them prior to undergoing transplant and never modified them. The majority of patients (84%) with an AD expressed the desire to avoid life-sustaining treatment in the event of terminal illness or irreversible coma. PC was consulted for 46% (n = 58) of patients within 6 months prior to time of death (TOD). Regarding location of EOL, 30% of all patients died in the hospital (non-ICU), 20% in the ICU, 38% at home with hospice, and 10% in a hospice facility. Patients with ADs appeared more likely to die outside of the hospital compared to those without (53% vs. 44%, p = 0.4506). By multivariate analysis, there were no significant patient characteristics associated with the presence of an AD or PC consultation. After adjusting for age and comorbidity index, we found that patients with an AD were significantly more likely to die outside of the ICU (OR 3.0, 95% CI 1.2-7.5, p = 0.02), an effect that was further amplified in patients who both had an AD and received PC consultation at any point (n = 30, p = 0.0077). Conclusions: Our findings highlight the importance of ACP for EOL outcomes in the allo HCT population. While the rate of AD completion in our study population is higher than that of prior studies, future prospective studies aimed to improve the rate of ACP are needed.[Table: see text]

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The Palliative Care Service and the Stem Cell Transplant Unit – a Happy Marriage

Biology of Blood and Marrow Transplantation ◽

10.1016/j.bbmt.2015.11.867 ◽

2016 ◽

Vol 22 (3) ◽

pp. S363 ◽

Cited By ~ 1

Author(s):

Catherine Wood ◽

Alison Rowe ◽

Alwyn D'Souza ◽

Lisa Speedy ◽

Jonathan Adler ◽

...

Keyword(s):

Palliative Care ◽

Stem Cell ◽

Stem Cell Transplant ◽

Care Service ◽

Palliative Care Service ◽

Cell Transplant ◽

Happy Marriage

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Pediatric Palliative Care and End of Life Outcomes for Pediatric Hematopoietic Stem Cell Transplant Recipients Who Do Not Survive

Biology of Blood and Marrow Transplantation ◽

10.1016/j.bbmt.2015.11.752 ◽

2016 ◽

Vol 22 (3) ◽

pp. S295

Author(s):

Christina Ullrich ◽

Leslie Lehmann ◽

Wendy B. London ◽

Dongjing Guo ◽

Madhumitha Sridharan ◽

...

Keyword(s):

Palliative Care ◽

Stem Cell ◽

Hematopoietic Stem Cell ◽

Hematopoietic Stem Cell Transplant ◽

Stem Cell Transplant ◽

Pediatric Palliative Care ◽

Cell Transplant ◽

Transplant Recipients ◽

Life Outcomes ◽

Hematopoietic Stem

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Barriers and Support-System while Considering Hematopoietic Stem Cell Transplant (HSCT): A Qualitative Study of Pre-HSCT Acute Leukemia Patients from a Standalone Transplant Laboratory in India

Indian Journal of Medical and Paediatric Oncology ◽

10.1055/s-0041-1730091 ◽

2021 ◽

Vol 42 (02) ◽

pp. 153-160

Author(s):

Hina Solanki ◽

Aseem K. Tiwari ◽

Naveen Vashisht ◽

Vimarsh Raina ◽

Girish Sharma

Keyword(s):

Stem Cell ◽

Qualitative Study ◽

Acute Leukemia ◽

Hematopoietic Stem Cell ◽

Support System ◽

Hematopoietic Stem Cell Transplant ◽

Stem Cell Transplant ◽

Cell Transplant ◽

Hematopoietic Stem ◽

Patients Experience

Abstract Introduction Hematopoietic stem cell transplant (HSCT) is the definite treatment for acute leukemia but considering HSCT is challenging for the patients. There are many studies that have described the patients’ experience after HSCT but very few studies have reported their experience before going for HSCT and there is no published report in India on patients’ experience before HSCT. Objective We conducted a qualitative study to understand barriers, and support-system while considering HSCT and the chances of getting matched unrelated donor (MUD) for these patients. Materials and Methods The present study was a qualitative study. Demographic details of 514 patients who consented for the study were noted and the patients and their families were interviewed using a semistructured interview booklet before HSCT. The interview sessions were recorded, transcribed verbatim, and analyzed for emerging themes. The study data were analyzed using QDA Miner Lite 4.0 software (Provalis Research, Montreal, Canada). Descriptive statistics such as frequency and percentage were used. The chances of getting a human leukocyte antigen (HLA)-matched donor were also computed by “HLA-matching software.” Results Acute myeloid leukemia (64.01%) was commoner than acute lymphoid leukemia (35.99%) with male: female ratio as 1.98:1. The study showed nine themes as barriers and six themes emerged in regard to the support system for HSCT decision making. The biggest barriers identified among these patients pre-HSCT were related to cost, probability of “success of transplant,” and probable “quality of life.” The family support was the biggest support system variable followed by “treating doctor.” The chances of getting a MUD for these patients were 13.22% and 5.44% in global and Indian data pool, respectively. Conclusion Deciding upon HSCT can be challenging for patients and understanding of barriers and support-system variables among these patients would provide important insights and help design better counseling techniques for such patients of HSCT and future studies in this context.

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End-of-Life Care Patterns Associated with Pediatric Palliative Care among Children Who Underwent Hematopoietic Stem Cell Transplant

Biology of Blood and Marrow Transplantation ◽

10.1016/j.bbmt.2016.02.012 ◽

2016 ◽

Vol 22 (6) ◽

pp. 1049-1055 ◽

Cited By ~ 39

Author(s):

Christina K. Ullrich ◽

Leslie Lehmann ◽

Wendy B. London ◽

Dongjing Guo ◽

Madhumitha Sridharan ◽

...

Keyword(s):

Palliative Care ◽

Stem Cell ◽

End Of Life Care ◽

Hematopoietic Stem Cell Transplant ◽

Stem Cell Transplant ◽

Pediatric Palliative Care ◽

Cell Transplant ◽

Life Care ◽

Hematopoietic Stem ◽

Care Patterns

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Are families the barrier? Evaluating attitudes toward early integration of palliative care in pediatric hematopoietic stem cell transplant.

Journal of Clinical Oncology ◽

10.1200/jco.2016.34.26_suppl.112 ◽

2016 ◽

Vol 34 (26_suppl) ◽

pp. 112-112

Author(s):

Deena R. Levine ◽

Justin N. Baker

Keyword(s):

Quality Of Life ◽

Palliative Care ◽

Stem Cell ◽

Hematopoietic Stem Cell ◽

Hematopoietic Stem Cell Transplant ◽

Stem Cell Transplant ◽

Cell Transplant ◽

Hematopoietic Stem ◽

Early Integration

112 Background: The benefits of early integration of palliative care (PC) in oncology have been well established yet, there remain significant barriers to PC integration, especially in the setting of pediatric hematopoietic stem cell transplant (HSCT). HSCT patients are prone to a great degree of treatment related toxicity and are at high risk for morbidity and mortality and, while ideally suited to benefit, inherent factors in this cure oriented field preclude the integration of PC services. Most notably, family receptivity to PC is often perceived as a barrier in HSCT yet there is no data on family attitudes toward PC in this setting. This study aimed to evaluate perceived symptom burden and patient and parent attitudes toward early PC integration in pediatric HSCT. Methods: After IRB approval, development and pre-testing, novel survey tools were administered to HSCT patients and parents. Eligibility criteria included parent of an HSCT recipient < age 10 or patient/parent dyad for patients aged 10-17, time from HSCT > 1 month and < 1 year, English-speaking, and consent/assent. Data was assessed for trends in response content frequencies, percentages and parent/child concordance. Results: Interim analysis of the first 34 participants revealed high levels of perceived symptom related suffering in the first month of HSCT with suffering from: nausea 96%, loss of appetite 88%, diarrhea 88%, pain 83%, depression 79%, anxiety 75%, and constipation 42%. 90% of patients and 71% parents expressed that a great deal or a lot of attention should be paid to quality of life from the start of HSCT. The majority of patient and parent respondents (60/46%) indicated they would likely want to meet with PC early in HSCT and very few reported definite opposition (0% children, 4% parents). Conclusions: Pediatric HSCT patients experience a high degree of symptom related suffering, perceive quality of life as a high priority, and are largely in favor of early PC involvement. Our findings suggest that family receptivity should not be a barrier to early PC in pediatric HSCT and that aggressive cure directed therapy can and should be accompanied by aggressive quality of life directed care through early PC integration.

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