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 Self-reported late effects and long-term follow-up care among 1889 long-term Norwegian Childhood, Adolescent, and Young Adult Cancer Survivors (the NOR-CAYACS study)

2020 ◽  
Author(s):  
A. V. Mellblom ◽  
C. E. Kiserud ◽  
C. S. Rueegg ◽  
E. Ruud ◽  
J. H. Loge ◽  
...  
Keyword(s):  
Young Adult ◽  
Late Effects ◽  
Adolescent And Young Adult ◽  
Young Adult Cancer Survivors ◽  
Adult Cancer Survivors ◽  
Follow Up Care ◽  
Long Term Follow Up ◽  
Young Adult Cancer

Abstract Purpose The majority of childhood, adolescent, and young adult cancer survivors (CAYACS) are at risk of late effects but may not receive long-term follow-up care for these. Here, we investigated (1) self-reported late effects, (2) long-term follow-up care, and (3) factors associated with receiving follow-up care in a population-based sample of Norwegian long-term CAYACS. Methods Survivors were identified by the Cancer Registry of Norway. All > 5-year survivors diagnosed between 1985 and 2009 with childhood cancer (CCS, 0–18 years old, excluding CNS), breast cancer (BC, stages I–III), colorectal cancer (CRC), leukemias (LEUK), non-Hodgkin lymphoma (NHL), or malignant melanoma (MM) at age 19–39 years were mailed a questionnaire (NOR-CAYACS study). Descriptive statistics and logistic regression models were used to analyze occurrence of late effects, long-term follow-up care for these, and associated factors. Results Of 2104 responding survivors, 1889 were eligible for analyses. Of these, 68% were females, with a mean age of 43 years at survey, on average 17 years since diagnosis, and diagnosed with CCS (31%), BC (26%), CRC (8%), NHL (12%), LEUK (7%), and MM (16%). Overall, 61.5% reported the experience of at least one late effect, the most common being concentration/memory problems (28.1%) and fatigue (25.2%). Sixty-nine percent reported not having received long-term follow-up care focusing on late effects. Lower age at survey (p = 0.001), higher education (p = 0.012), and increasing number of late effects (p = < 0.001) were associated with increased likelihood of follow-up care in the multivariate model. Conclusions The majority of survivors reported at least one late effect, but not receiving specific follow-up care for these. This indicates a need for structured models of long-term follow-up to ensure adequate access to care.

A Dutch nationwide survivorship care program for Hodgkin lymphoma survivors.

2016 ◽  
Vol 34 (3_suppl) ◽  
pp. 6-6
Author(s):  
Flora Van Leeuwen ◽  
Mars van 't Veer ◽  
Berthe M.P. Aleman ◽  
Nicky Dekker ◽  
John M. M. Raemaekers ◽  
...  
Keyword(s):  
The Netherlands ◽  
Hodgkin Lymphoma ◽  
Treatment Effects ◽  
Survivorship Care Plan ◽  
Evidence Based ◽  
Survivorship Care ◽  
Nationwide Database ◽  
Follow Up Care

6 Background: Survivors of Hodgkin lymphoma (HL) are at increased risk of various late adverse effects of treatment, leading to substantial excess morbidity and mortality. Long-term follow-up care programs have been established for childhood cancer survivors, but not yet for HL survivors. The Dutch BETER consortium (Better care after Hodgkin lymphoma: Evaluation of long-term Treatment Effects and screening Recommendations) has developed a nationwide infrastructure for Survivorship Care Clinics for HL survivors. The consortium aims to: 1) establish follow-up guidelines for survivors; 2) identify survivors eligible for follow-up care; 3) educate survivors about late adverse treatment effects; and 4) provide risk-based care. Methods: Evidence-based follow-up guidelines were developed according to international standards. The guideline development group consisted of clinicians, methodological experts and patient representatives. To be eligible for follow-up care patients must have survived ≥ 5 yrs and have been treated at ages 15-70 years after 1969. Survivors were identified through the Netherlands Cancer Registry and hospital-based registries. Tracing of current addresses was done through the nationwide database of Municipal Offices. Results: We developed guidelines forsecond malignancies, cardiovascular disease, thyroid disease, osteoporosis and functional asplenia infection prophylaxis. Recommendations are given for fertility care and therapy for neck muscle weakness. We have identified and traced a cohort of 12,000 HL survivors in 23 centers, covering about 80% of HL patients in the Netherlands, of whom 8,500 appear to be eligible for follow-up care. For all survivors, treatment data were collected from the medical records to provide risk-based screening recommendations. A website and a survivorship care plan were developed to educate survivors about late effects. A nationwide database, including screening and adverse events data, is in development to evaluate the follow-up guidelines for diagnostic value and efficacy. Conclusions: We expect that the BETER project will improve healthy life expectancy of HL survivors. Evaluation of follow-up care will lead to a more evidence-based follow-up program.

Personalized Massive Open Online Course for Childhood Cancer Survivors: Behind the Scenes

2021 ◽  
Vol 12 (02) ◽  
pp. 237-244
Author(s):  
Claire Berger ◽  
Léonie Casagranda ◽  
Hélène Sudour-Bonnange ◽  
Catherine Massoubre ◽  
Jean-Hugues Dalle ◽  
...  
Keyword(s):  
Cancer Survivors ◽  
Childhood Cancer ◽  
Late Effects ◽  
Online Courses ◽  
Childhood Cancer Survivors ◽  
Massive Open Online ◽  
Follow Up Care ◽  
Long Term Follow Up

Abstract Background Today, in France, it is estimated that 1 in 850 people aged between 20 and 45 years has been treated for childhood cancer, which equals 40,000 to 50,000 people. As late effects of the cancer and its treatment affect a large number of childhood cancer survivors (CCS) and only 30% of them benefit from an efficient long-term follow-up care for prevention, early detection, and treatment of late effects, health education of CCS represents a challenge of public health. Objectives Massive open online courses (MOOCs) are a recent innovative addition to the online learning landscape. This entertaining and practical tool could easily allow a deployment at a national level and make reliable information available for all the CCS in the country, wherever they live. Methods The MOOC team brings together a large range of specialists involved in the long-term follow-up care, but also associations of CCS, video producers, a communication consultant, a pedagogical designer, a cartoonist and a musician. We have designed three modules addressing transversal issues (lifestyle, importance of psychological support, risks of fertility problems) and eight modules covering organ-specific problems. Detailed data on childhood cancer treatments received were used to allocate the specific modules to each participant. Results This paper presents the design of the MOOC entitled “Childhood Cancer, Living Well, After,” and how its feasibility and its impact on CCS knowledge will be measured. The MOOC about long-term follow-up after childhood cancer, divided into 11 modules, involved 130 participants in its process, and resulted in a 170-minute film. The feasibility study included 98 CCS (31 males vs. 67 females; p < 0.0001). Conclusion Such personalized, free, and online courses with an online forum and a possible psychologist consultation based on unique characteristics and needs of each survivor population could improve adherence to long-term follow-up without alarming them unnecessarily.

Development of Risk-Based Guidelines for Pediatric Cancer Survivors: The Children's Oncology Group Long-Term Follow-Up Guidelines From the Children's Oncology Group Late Effects Committee and Nursing Discipline

2004 ◽  
Vol 22 (24) ◽  
pp. 4979-4990 ◽  
Author(s):  
Wendy Landier ◽  
Smita Bhatia ◽  
Debra A. Eshelman ◽  
Katherine J. Forte ◽  
Teresa Sweeney ◽  
...  
Keyword(s):  
Health Care Providers ◽  
Pediatric Cancer ◽  
Late Effects ◽  
Adolescent And Young Adult ◽  
Care Providers ◽  
Oncology Group ◽  
Follow Up Care ◽  
Long Term Follow Up

The Children’s Oncology Group Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers are risk-based, exposure-related clinical practice guidelines intended to promote earlier detection of and intervention for complications that may potentially arise as a result of treatment for pediatric malignancies. Developed through the collaborative efforts of the Children’s Oncology Group Late Effects Committee, Nursing Discipline, and Patient Advocacy Committee, these guidelines represent a statement of consensus from a multidisciplinary panel of experts in the late effects of pediatric cancer treatment. The guidelines are both evidence-based (utilizing established associations between therapeutic exposures and late effects to identify high-risk categories) and grounded in the collective clinical experience of experts (matching the magnitude of risk with the intensity of screening recommendations). They are intended for use beginning 2 or more years following the completion of cancer therapy; however, they are not intended to provide guidance for follow-up of the survivor’s primary disease. A complementary set of patient education materials (“Health Links”) was developed to enhance follow-up care and broaden the application of the guidelines. The information provided in these guidelines is important for health care providers in the fields of pediatrics, oncology, internal medicine, family practice, and gynecology, as well as subspecialists in many fields. Implementation of these guidelines is intended to increase awareness of potential late effects and to standardize and enhance follow-up care provided to survivors of pediatric cancer throughout the lifespan. The Guidelines, and related Health Links, can be downloaded in their entirety at www.survivorshipguidelines.org .

Patient-Reported Survivorship Care Practices and Late Effects After Treatment of Hodgkin and Non-Hodgkin Lymphoma

2018 ◽  
pp. 1-10
Author(s):  
Melissa A. Frick ◽  
Carolyn C. Vachani ◽  
Margaret K. Hampshire ◽  
Christina Bach ◽  
Karen Arnold-Korzeniowski ◽  
...  
Keyword(s):  
Adverse Effects ◽  
Hodgkin Lymphoma ◽  
Survivorship Care Plan ◽  
Survivorship Care ◽  
Convenience Sample ◽  
Care Plans ◽  
Non Hodgkin Lymphoma ◽  
Patient Reported

Purpose Multimodal treatment of Hodgkin lymphoma (HL) and non-Hodgkin lymphoma (NHL) yields excellent outcomes; however, survivors are at risk of developing myriad late and long-term effects. Methods From a convenience sample of 964 survivors of HL (37%) and NHL (63%) using a publicly available Internet-based survivorship care plan (SCP) tool between 2011 and 2016, we examined patient-reported cancer care, toxicities, and survivorship care data. Results Of all survivors, 67% were female and 84% were white and 88% were free of cancer. Median age of diagnosis was 28 years for survivors of HL and 49 years for NHL. Many survivors reported treatment with chemotherapy (92%), surgery (52%), and/or radiation (41%), with most radiation delivered to chest/mantle fields (81%). Survivors reported a diversity of radiation- and chemotherapy-related sequelae, including thyroid dysfunction, speaking and/or swallowing changes, pulmonary fibrosis/pneumonitis, heart disease, chronic fatigue, neurocognitive decline, neuropathy, sexual changes, and secondary breast cancers. Few reported receipt of previous survivorship information. Most reported management/comanagement by an oncology specialist after active treatment; however, a shift to management by primary care provider alone was observed as a trend over time in follow-up. Sixty-six percent of users who responded to a follow-up survey reported that they intend to share the SCP with their health care team. Conclusion Survivors of lymphoma, many of whom are free of disease, report a substantial burden of late and long-term adverse effects, suboptimal delivery of survivorship information, and transitions of care in follow-up in which fragmented systems and/or poor communication may contribute to unmet survivor needs. Multiple opportunities thus exist for which SCPs may be used to improve awareness regarding survivorship and associated adverse effects in addition to communicating follow-up care plans between survivors and treatment teams.

Enhancing the cancer survivors' experience with tailored supportive services.

2015 ◽  
Vol 33 (29_suppl) ◽  
pp. 236-236
Author(s):  
Guadalupe R. Palos ◽  
Paula A. Lewis-Patterson ◽  
Patricia Chapman ◽  
Katherine Ramsey Gilmore ◽  
Maria Alma Rodriguez
Keyword(s):  
Late Effects ◽  
Physical Symptoms ◽  
Care Plan ◽  
Survivorship Care Plan ◽  
Survivorship Care ◽  
Care Providers ◽  
Care Plans ◽  
Follow Up Care ◽  
Education Needs

236 Background: Maintaining health and well-being is a primary goal throughout the cancer experience. The dynamic nature of a survivor’s trajectory makes it difficult to tailor education and supportive care services to their actual needs. We sought to determine information and education needs preferred by survivors who had returned to their communities after completing their treatment. Methods: We partnered with survivors' advocacy groups to conduct a needs assessment with adult survivors attending a community survivorship conference. Once eligibility was confirmed, verbal consent was obtained, and instructions were given on survey completion. A modified version of the NCI Follow-Up Care Use among Survivors survey was used. Analyses focused on clinical/sociodemographic characteristics, preferences for follow-up care, information/education needs, and sources for receiving health information. Simple descriptives were used to report the results. Results: We distributed 284 questionnaires and 169 were returned, yielding a 59.5% response rate. Respondents were mostly female (79.9%), married (58.6%), college educated (81.7%) and had ver 10 post-treatment years (47.3%). 51.3% were diagnosed with breast cancer and 81.8% reported being in good to excellent health. 57.3% had follow-up cancer care, 30.8% did not recall having a discussion with their provider about late-effects, and 57.6% reported not receiving a summary care plan. 83.7% preferred to have the same provider follow them and 95.2% reported their oncologist would be their ideal doctor. Survivors preferred more information on ways to improve memory/concentration (83.9%), energy/exercise (83.3%), and maximizing the benefits of their survivorship care plan (74.6%). Preferred information sources were health care providers (78.0%) and the internet (39.3%). Conclusions: These survivors reported a high level of unmet information needs related to self-management of physical symptoms. Patient-provider communication about late-effects and benefits of survivorship care plans continues to be inadequate. Physicians and other providers are in ideal positions to initiate conversations about supportive survivorship care early in the patient experience.

Experiences with late effects-related care and preferences for long-term follow-up care among adult survivors of childhood lymphoma

2017 ◽  
Vol 25 (8) ◽  
pp. 2445-2454 ◽  
Author(s):  
Hanne C. Lie ◽  
Anneli V. Mellblom ◽  
Mette Brekke ◽  
Arnstein Finset ◽  
Sophie D. Fosså ◽  
...  
Keyword(s):  
Late Effects ◽  
Adult Survivors ◽  
Follow Up Care ◽  
Long Term Follow Up ◽  
Childhood Lymphoma

Long‐Term Follow‐Up of Patients with Nodular Lymphocyte Predominant Hodgkin Lymphoma: A Report from the Spanish Lymphoma Oncology Group

2020 ◽  
Author(s):  
Beatriz Núñez García ◽  
Marta Rodríguez‐Pertierra ◽  
Silvia Sequero ◽  
Laura Gálvez Carvajal ◽  
Alberto Ruano‐Ravina ◽  
...  
Keyword(s):  
Hodgkin Lymphoma ◽  
Oncology Group ◽  
Long Term Follow Up
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