After Childhood Cancer: a Qualitative Study of Family Physician, Parent/Guardian, and Survivor Information Needs and Perspectives on Long-Term Follow-up and Survivorship Care Plans

2018 ◽  
Vol 34 (4) ◽  
pp. 638-646 ◽  
Author(s):  
Melanie R. Keats ◽  
Kelsey Shea ◽  
Louise Parker ◽  
Samuel A. Stewart ◽  
Annette Flanders ◽  
...  
Keyword(s):  
Qualitative Study ◽  
Childhood Cancer ◽  
Family Physician ◽  
Information Needs ◽  
Survivorship Care Plans ◽  
Survivorship Care ◽  
Care Plans ◽  
Long Term Follow Up

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

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.

scholarly journals Healthcare system barriers to long-term follow-up for adult survivors of childhood cancer in British Columbia, Canada: a qualitative study

2017 ◽  
Vol 12 (3) ◽  
pp. 277-290 ◽  
Author(s):  
A. Fuchsia Howard ◽  
Arminee Kazanjian ◽  
Sheila Pritchard ◽  
Rob Olson ◽  
Haroon Hasan ◽  
...  
Keyword(s):  
British Columbia ◽  
Qualitative Study ◽  
Childhood Cancer ◽  
Healthcare System ◽  
Adult Survivors ◽  
Long Term Follow Up ◽  
Survivors Of Childhood Cancer

Barriers to survivorship care in the Consortium for New England Childhood Cancer Survivors (CONNECCS).

2013 ◽  
Vol 31 (15_suppl) ◽  
pp. 10035-10035
Author(s):  
Cindy L. Schwartz ◽  
Priay Hirway ◽  
Jeremy Ader ◽  
Heather Appleton Bradeen ◽  
Satkiran S. Grewal ◽  
...  
Keyword(s):  
Childhood Cancer ◽  
Lymphoblastic Leukemia ◽  
Private Insurance ◽  
Healthcare Access ◽  
Socioeconomic Background ◽  
Survivorship Care ◽  
Cns Disease ◽  
Long Term Follow Up

10035 Background: Although long-term adverse consequences of childhood cancer treatment may be mitigated by screening, prevention, and interventions, many survivors do not take advantage of survivorship care. We hypothesized that patients who are at risk for poor compliance with long-term follow-up are identifiable at diagnosis. Methods: To identify factors associated with poor follow-up compliance, 7 CONNECCS institutions evaluated a childhood acute lymphoblastic leukemia (ALL) survivor cohort diagnosed 1996-99. Data collected included: diagnosis year, age, race, ethnicity, gender, insurance, distance from center, CNS disease, and risk classification. Primary endpoints were compliance with 5 and 10-year follow-up. Differences in compliance were tested using chi-squared or t-tests. Logistic regression (including institution as a clustering variable) was used to calculate adjusted odds ratios (OR). Results: At diagnosis, the 358 ALL patients were: female (47%), age= 6.5 + 4.6 years, white/non-Hispanic (84%), black non-Hispanic (7%), high-risk (52%), CNS involvement (10%), privately insured (68%). Private insurance (OR 4.0; 95% CI 2.1-7.8) significantly increased the odds of 5-year compliance. Compliance with 10-year follow-up increased with private insurance (OR 3.3; 95% CI 1.4-8.1) but decreased with CNS disease (OR 0.36; 95% CI 0.31- 0.42) and with years of age (OR 0.93; 95% CI 0.88- 0.96). Conclusions: We evaluated predictors of long-term follow-up based on disease/demographic characteristics at diagnosis to identify cohorts in need of early interventions. In this regional cohort, patients from lower socioeconomic background (without private insurance) at diagnosis were less likely to participate in long-term follow-up care at 5 and 10 years from diagnosis. Older survivors and those with CNS disease were less likely to be in follow-up at 10 years. Future studies should investigate reasons why follow-up compliance is affected by 1) private insurance at diagnosis, 2) older age, and 3) CNS disease. Remediable causes might include: understanding of risk, adolescence/young adult transitions, and healthcare access.

Variation among follow-up survivorship guidelines for adolescent and young adults (AYA).

2016 ◽  
Vol 34 (3_suppl) ◽  
pp. 147-147
Author(s):  
Erin Marie Barthel ◽  
Elizabeth Kiernan ◽  
Darcy Banco ◽  
Katherine Spencer ◽  
Susan K. Parsons
Keyword(s):  
Hodgkin Lymphoma ◽  
Late Effects ◽  
Time Interval ◽  
Survivorship Care ◽  
Nccn Guidelines ◽  
Care Plans ◽  
Follow Up Care ◽  
Long Term Follow Up

147 Background: The AYA population is a growing group of survivors, exceeding more than 600,000 who are at high risk for late effects of cancer-directed therapy. While many guidelines exist for cancer survivorship care, choosing which to use for an AYA cancer survivor is challenging, yet essential, to ensure comprehensive follow-up care. Methods: Survivorship care plans, including treatment summaries and follow-up care plans, were created for three clinical vignettes (acute lymphoblastic leukemia, osteosarcoma, and Hodgkin Lymphoma). Four sets of guidelines were used including the Children’s Oncology Group Long-Term Follow-Up Guidelines (COG LTFU), National Comprehensive Cancer Network (NCCN) Guidelines for Age- Related Recommendations: AYA Oncology (NCCN-AYA), NCCN Guidelines for Treatment of Cancer by Site (NCCN-Site), and NCCN Guidelines for Supportive Care: Survivorship (NCCN-Survivor) and NCCN supplemental cancer screening guidelines. The follow-up care plans were compared across guidelines to determine the extent and nature of the similarities and differences concerning AYA survivorship care. Results: The guidelines differ widely on surveillance recommendations based on risk, test, and frequency. The COG LTFU recommends screening all individuals with a specific treatment exposure, whereas the NCCN-AYA recommends screening based on risk and the NCCN-Survivor recommends testing individuals with a positive review of systems and other health risk factors. To illustrate this, in the follow-up care plan for our Hodgkin Lymphoma case, recommended monitoring for cardiac toxicity varied from annual screening (COG LTFU) to ten year intervals (NCCN-Survivor), based on which guideline was used. Conclusions: The guidelines disagree on the link between treatment exposures and late effects, on the population to be screened, on the screening test to be used, and on the time interval of testing. This has significant implications for the long-term follow-up care an AYA survivor will receive. We highlight differences across the guidelines and offer solutions to harmonize guidelines to ensure comprehensive, quality survivorship care for this population.

scholarly journals Determining transition readiness in Swiss childhood cancer survivors – a feasibility study

BMC Cancer ◽  
2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Maria Otth ◽  
Patrick Wechsler ◽  
Sibylle Denzler ◽  
Henrik Koehler ◽  
Katrin Scheinemann
Keyword(s):  
Health Care ◽  
Cancer Survivors ◽  
Childhood Cancer ◽  
Childhood Cancer Survivors ◽  
Self Management ◽  
Transition Readiness ◽  
Long Term Follow Up ◽  
Time Point

Abstract Background The successful transition of childhood cancer survivors (CCSs) from pediatric to adult long-term follow-up care is a critical phase, and determining the right time point can be challenging. We assessed the feasibility of the use of existing transition readiness tools in the context of the Swiss health care system, assessed partly transition readiness in Swiss CCSs, and compared our findings with Canadian CCSs for which these tools were originally developed. Methods We officially translated the Cancer Worry Scale (CWS) and Self-Management Skill Scale (SMSS) into German and integrated them into this cross-sectional study. We included CCSs attending the long-term follow-up (LTFU) clinic in the Division of Oncology-Hematology, Department of Pediatrics, Kantonsspital Aarau. We used descriptive statistics to describe transition readiness. Results We randomly recruited 50 CCSs aged ≥18 years at participation. The CCSs had a median CWS score of 62 (interquartile range 55–71), indicating a moderate level of cancer-related worry. Despite high self-management skills, some answers showed a dependency of CCSs on their parents. Our experience shows that the CWS and SMSS are easy for Swiss CCSs to use, understand, and complete. The interpretation of the results must take differences in health care systems between countries into account. Conclusions The translated CWS and SMSS are appropriate additional measures to assess transition readiness in CCSs. These scales can be used longitudinally to find the individual time point for transition and the completion by CCSs enables the health care team to individualize the transition process and to support the CCSs according to their individual needs.

The views of European clinicians on guidelines for long-term follow-up of childhood cancer survivors

2014 ◽  
Vol 62 (2) ◽  
pp. 322-328 ◽  
Author(s):  
Morven C. Brown ◽  
Gillian A. Levitt ◽  
Eva Frey ◽  
Edit Bárdi ◽  
Riccardo Haupt ◽  
...  
Keyword(s):  
Cancer Survivors ◽  
Childhood Cancer ◽  
Childhood Cancer Survivors ◽  
Long Term Follow Up
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