Families Are Not The Barrier: Evaluating Attitudes Toward Early Integration Of Palliative Care In Pediatric Hematopoietic Stem Cell Transplant

Families Are Not The Barrier: Evaluating Attitudes Toward Early Integration Of Palliative Care In Pediatric Hematopoietic Stem Cell Transplant

Levine D; Mandrell B; Sykes A; Baker J

10.1002/pbc.26591

Pediatric Blood And Cancer

2017

Family; Hematopoietic Stem Cell; Palliative Therapy; Anxiety; Attention; Child; Constipation; Diarrhea; Female; Graft Recipient; Human; Loss Of Appetite; Major Clinical Study; Male; Nausea; Pain; Parental Attitude; Quality Of Life; School Child; Speech; Symptom

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. Objectives: This study aimed to evaluate perceived symptom burden in the first month of pediatric HSCT, as well as patient and parent attitudes toward early PC integration in pediatric HSCT. Design/Method: 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 aged10 years or older, 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: 81 total participants were enrolled, including 60 parents and 21 patients. Analysis revealed high levels of perceived symptom related suffering in the first month of HSCT with suffering from: nausea 98.3%, loss of appetite 93.3%, pain 90%, diarrhea 88.3%, depression 75%, anxiety 70%, and constipation 41.7%. 85.7% of patients and 73.4% 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 (52.4/50%) indicated they would likely want to meet with PC early in HSCT and very few reported definite opposition (0% children, 3.3% parents). Conclusion: 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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October 2017 List