The willingness of general practitioners to be involved in the follow-up of adult survivors of childhood cancer

PURPOSE The potential for late effects of treatment necessitates long-term monitoring of adult survivors of childhood cancer. The purpose of this study was to determine how institutions follow up young adult survivors of pediatric malignancy. Specifically, we were interested in the types of health care providers who follow up these patients, how the follow-up is administered, and what barriers to follow-up have been encountered. METHODS A 16-item questionnaire was mailed to the 219 members of the Children's Cancer Group (CCG) and the Pediatric Oncology Group (POG). The survey consisted of four categories of questions that asked for information regarding the existence of a program to follow up young adults, the setting of the program, routine activities of the program, and commonly encountered barriers to care. RESULTS One hundred eighty-two members returned the survey (83% response rate). Fifty-three percent of the respondents have a long-term follow-up clinic at their institution. Whereas 44% have a mechanism for following up adult survivors, only 15% of the programs have established a formal database for adults. Nearly all the programs (93%) use a pediatric oncologist. Although an adult oncologist assists in 13% of the programs, primary care physicians are uncommonly (8%) involved. CONCLUSION Few programs focus on the long-term health care needs of adult survivors of childhood cancer. The majority of existing programs are in pediatric institutions, without significant input from adult-oriented, generalist health care providers.

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Patient-generated online survivorship care plans for adult survivors of childhood cancer: Feasibility and patient preferences.

Journal of Clinical Oncology ◽

10.1200/jco.2016.34.3_suppl.54 ◽

2016 ◽

Vol 34 (3_suppl) ◽

pp. 54-54

Author(s):

Dava Szalda ◽

Marilyn M. Schapira ◽

Lisa Schwartz ◽

Esther Kim ◽

Carolyn Vachani ◽

...

Keyword(s):

Childhood Cancer ◽

Pediatric Cancer ◽

Online Survey ◽

Adult Survivors ◽

Survivorship Care Plans ◽

Survivorship Care ◽

Care Plans ◽

Survivors Of Childhood Cancer

54 Background: With improvements in pediatric cancer treatment, the number of childhood cancer survivors is growing rapidly. Survivorship care plans (SCPs) can provide survivors with necessary information and resources to engage in risk-based follow-up care. Online patient motivated SCPs are promising for adult survivors of childhood cancer with multiple care transitions and the need for self-management outside clinical encounters. Methods: An existing online SCP generator (OncoLife) was adapted to create Smart Adult Living After Childhood Cancer plans for survivors of pediatric Acute Lymphoblastic Lymphoma (ALL) and Hodgkin’s Lymphoma (HL) by incorporating Children’s Oncology Group Long Term Follow-Up Guidelines into existing information technology logic. Results: Adult survivors (n = 20) of pediatric ALL or HL, registered to be seen in radiation oncology or survivorship clinic at the University of Pennsylvania, created an online SCP and completed an online survey. Approximately 80% of patients contacted consented and completed SCP indicating high acceptability; two-thirds (66%) completed the survey. Participants were a median of 35.5 years of age and of 26.5 years since diagnosis. They were 50% female, majority Caucasian (90%), 70% ALL and 30% HL survivors. SCPs took an average of 9 minutes 46 seconds to complete. The majority (95%) of respondents found the SCP generator easy to use, would recommend it to others (85%), and were satisfied with the amount of information received (80%). Ninety percent stated they intended to discuss their SCP with a healthcare provider. Only a third (35%) of survivors stated they had previously received a formal SCP. Seventy percent (70%) stated a written or online plan was the best way to convey health information between visits. Preferences for use of online SCP included: 70% wanting a treatment summary to complete their SCP and 50% wanting personal information to be saved for later use. Conclusions: Online patient-motivated SCPs are a feasible and acceptable way to deliver information to adult survivors of pediatric cancer about long term health risks. Further research into optimal methods for creation, use and health benefits of SCPs is warranted.

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Emotional distress, stress, and cardiovascular health in adult survivors of childhood cancer.

Journal of Clinical Oncology ◽

10.1200/jco.2020.38.15_suppl.10547 ◽

2020 ◽

Vol 38 (15_suppl) ◽

pp. 10547-10547

Author(s):

Margaret M. Lubas ◽

Mingjuan Wang ◽

John L. Jefferies ◽

Kirsten K. Ness ◽

Matthew J. Ehrhardt ◽

...

Keyword(s):

Myocardial Infarction ◽

Metabolic Syndrome ◽

Childhood Cancer ◽

Emotional Distress ◽

Cardiovascular Health ◽

Adult Survivors ◽

Cardiac Health ◽

Survivors Of Childhood Cancer ◽

New Onset

10547 Background: The contribution of emotional distress and stress to cardiac health in adult survivors of childhood cancer has not been reported, despite evidence of causal associations in the general population. Methods: Comprehensive medical assessments and standardized measures of depression, anxiety, post-traumatic stress disorder, and perceived stress were performed on 3,267 survivors in the St. Jude Lifetime Cohort (median[range] 29.9[18.0-64.5] years of age; 7.7[0-24.8] years at diagnosis; 49% female). Physical outcomes included hypertension, diabetes, dyslipidemia, cardiomyopathy, dysrhythmia (grades 2-4 per the NCI CTCAE criteria), myocardial infarction (grades 3-4), and metabolic syndrome (yes/no). Multivariable generalized linear models examined associations between these outcomes with any distress/stress, adjusted for demographics, cumulative anthracycline dose and thoracic radiation, physical activity, BMI, smoking, and alcohol intake. Unadjusted longitudinal associations between distress/stress and new onset cardiac conditions were examined among survivors who completed repeat medical assessment(s) (n = 1748; median follow-up = 3.9 years). New onset conditions were defined as a change from grade 0-1 at baseline to ≥ grade 2 at follow-up. Results: Survivor reported distress/stress (29% overall) was more prevalent in those with hypertension (28.2% vs 19.5%, P< 0.001), dyslipidemia (16.4% vs. 11.3%, P< 0.001), diabetes (9.4% vs. 6.9%, P= 0.02), and metabolic syndrome (32.2% vs. 23.2%, P< 0.001), but not among dysrhythmia, cardiomyopathy, and myocardial infarction. In separate multivariable models, distress/stress was associated with hypertension (RR = 1.24, 95% CI 1.07-1.43), dyslipidemia (RR = 1.29, 95% CI 1.03-1.61), and metabolic syndrome (RR = 1.35, 95% CI 1.17-1.54). Baseline distress/stress was associated with new onset hypertension (OR = 1.33, 95% CI 0.94-2.01), dyslipidemia (OR = 1.37, 95% CI 0.94-1.87), and dysrhythmia (OR = 2.78, 95% CI 1.12-6.91). Conclusions: Emotional distress/stress is associated with adverse cardiovascular health and may serve as an intervention target for improving cardiac health outcomes among survivors of childhood cancer.

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