Supportive Care in Pediatric Oncology: Opportunities and Future Directions

Freedman, Jason L.; Beeler, Dori M.; Bowers, Alison; Bradford, Natalie; Cheung, Yin Ting; Davies, Maya; Dupuis, L. Lee; Elgarten, Caitlin W.; Jones, Torri M.; Jubelirer, Tracey; Miller, Tamara P.; Patel, Priya; Phillips, Charles A.; Wardill, Hannah R.; Orsey, Andrea D.

doi:10.3390/cancers15235549

Cited by 11 publications

(2 citation statements)

References 114 publications

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“…6,7 Best practices in palliative and supportive care need to parallel this evolution in cancer care. [8][9][10][11][12] Decisionmaking becomes increasingly complex for both clinicians and families. Prognostic uncertainty, unfamiliar toxicity profiles, and the unclear significance of tumor-specific molecular profiles are now routine considerations in the family decision-making process.…”

Section: Introductionmentioning

confidence: 99%

Weathering the storm when the end of the road is near: A qualitative analysis of supportive care needs during CAR T cell therapy in pediatrics

Steineck,

Silbert,

Palm

et al. 2024

Preprint

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Background: Chimeric Antigen Receptor (CAR) T cell therapy provides promising outcomes in relapsed/refractory B Acute Lymphoblastic Leukemia (ALL) yet still carries high toxicities rates and relatively poor long-term survival. Efficacy has yet to be demonstrated in other diagnoses while toxicity and risk profiles remain formidable. To date, treatment-related symptom burden is gleaned from clinical trial toxicity reports; the patient perspective remains understudied. Methods: English or Spanish-speaking patients (ages 8-25 years) undergoing CAR T cell therapy for any malignancy and their primary caregiver were recruited from Seattle Children’s Hospital (SCH), St. Jude Children’s Research Hospital (SJCRH), and the Pediatric Oncology Branch of the National Cancer Institute (NCI). Both patient and caregiver completed semi-structured dyadic interviews 3-months post-treatment. We used directed content analysis for codebook development and thematic network analysis for inductive qualitative analysis. Results: Twenty families completed interviews (13 patients, 15 parents). Patients were a median age 16.5 years, predominantly female (65%), white (75%), and diagnosed with ALL (75%). Global themes included “A clear decision,” “Coping with symptoms,” and “Unforeseen psychosocial challenges.” When families were asked to describe the “most challenging part of treatment,” most described “the unknown.” Most reported “the symptoms really weren’t that bad,” even among patients hospitalized for severe toxicity events. Fatigue, pain, and nausea were the most prevalent symptoms. Importantly, only one family would have chosen a different therapy, if given another opportunity. Conclusions: Although physical symptoms were largely tolerable, recognizing supportive care opportunities remains imperative, particularly psychosocial concerns.

show abstract

Section: Introductionmentioning

confidence: 99%

Weathering the storm when the end of the road is near: A qualitative analysis of supportive care needs during CAR T cell therapy in pediatrics

Steineck,

Silbert,

Palm

et al. 2024

Preprint

View full text Add to dashboard Cite

show abstract

“…6,7 Best practices in palliative and supportive care need to parallel this evolution in cancer care. [8][9][10][11][12] Decision-making becomes increasingly complex for both clinicians and families. Prognostic uncertainty, unfamiliar toxicity profiles, and the unclear significance of tumorspecific molecular profiles are now routine considerations in the family decision-making process.…”

Section: Introductionmentioning

confidence: 99%

Weathering the storm when the end of the road is near: A qualitative analysis of supportive care needs during CAR T‐cell therapy in pediatrics

Steineck,

Silbert,

Palm

et al. 2024

Pediatric Blood & Cancer

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BackgroundChimeric antigen receptor (CAR) T‐cell therapy provides promising outcomes in relapsed/refractory B acute lymphoblastic leukemia (ALL), yet still carries high toxicity rates and relatively poor long‐term survival. Efficacy has yet to be demonstrated in other diagnoses while toxicity and risk profiles remain formidable. To date, treatment‐related symptom burden is gleaned from clinical trial toxicity reports; the patient perspective remains understudied.MethodsEnglish‐ or Spanish‐speaking patients (ages 8–25 years) undergoing CAR T‐cell therapy for any malignancy and their primary caregivers were recruited from Seattle Children's Hospital (SCH), St. Jude Children's Research Hospital (SJCRH), and the Pediatric Oncology Branch of the National Cancer Institute (NCI). Both patient and caregiver completed semi‐structured dyadic interviews 3 months post treatment. We used directed content analysis for codebook development and thematic network analysis for inductive qualitative analysis.ResultsTwenty families completed interviews (13 patients, 15 parents). Patients were a median age 16.5 years, predominantly female (65%), White (75%), and diagnosed with ALL (75%). Global themes included “A clear decision,” “Coping with symptoms,” and “Unforeseen psychosocial challenges.” When families were asked to describe the “most challenging part of treatment,” most described “the unknown.” Most reported “the symptoms really weren't that bad,” even among patients hospitalized for severe toxicity events. Fatigue, pain, and nausea were the most prevalent symptoms. Importantly, only one family would have chosen a different therapy, if given another opportunity.ConclusionsAlthough physical symptoms were largely tolerable, recognizing supportive care opportunities remains imperative, particularly psychosocial concerns.

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Childhood cancer models of survivorship care: a scoping review of elements of care and reported outcomes

Bradford,

Chan,

Skrabal Ross

et al. 2024

J Cancer Surviv

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Purpose This study aimed to systematically map elements of care and respective outcomes described in the literature for different models of post-treatment care for survivors of childhood cancer. Methods MEDLINE, CINAHL, and Embase were searched with combinations of free text terms, synonyms, and MeSH terms using Boolean operators and are current to January 2024. We included studies that described post-treatment cancer survivorship models of care and reported patient or service level elements of care or outcomes, which we mapped to the Quality of Cancer Survivorship Care Framework domains. Results Thirty-eight studies with diverse designs were included representing 6101 childhood cancer survivors (or their parent/caregiver) and 14 healthcare professionals. A diverse range of models of care were reported, including paediatric oncologist-led long-term follow-up, multi-disciplinary survivorship clinics, shared-care, and primary care-led follow-up. Elements of care at the individual level most commonly included surveillance for cancer recurrence as well as assessment of physical and psychological effects. At the service level, satisfaction with care was frequently reported but few studies reported how treatment-related-late effects were managed. The evidence does not support one model of care over another. Conclusions Gaps in evidence exist regarding distal outcomes such as costs, health care utilization, and mortality, as well as understanding outcomes of managing chronic disease and physical or psychological effects. The findings synthesized in this review provide a valuable reference point for future service planning and evaluation. Implications for Cancer Survivors Decades of research highlight the importance of survivorship care for childhood cancer survivors who are at risk of serious treatment-related late effects. This review emphasizes there is no single, ‘one-size fits all’ approach for delivering such care to this vulnerable population.

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Supportive Care in Pediatric Oncology: Opportunities and Future Directions

Cited by 11 publications

References 114 publications

Weathering the storm when the end of the road is near: A qualitative analysis of supportive care needs during CAR T cell therapy in pediatrics

Weathering the storm when the end of the road is near: A qualitative analysis of supportive care needs during CAR T cell therapy in pediatrics

Weathering the storm when the end of the road is near: A qualitative analysis of supportive care needs during CAR T‐cell therapy in pediatrics

Childhood cancer models of survivorship care: a scoping review of elements of care and reported outcomes

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