Most childhood cancer survivors aren’t getting the ongoing tests they need as adults

Most survivors of childhood cancer don’t get the tests needed to detect serious long-term adverse effects, according to Canadian researchers. The team looked at data from 3241 childhood cancer survivors in Canada between 1984 and 2014. They studied CCS who were at elevated risk of breast, colorectal cancer, or cardiomyopathy because of radiation treatments or specific chemotherapies. The team found that the number of survivors following the screening recommendations was low, with only 13%, 6%, and 53% adhering to the colorectal cancer, breast cancer, and cardiomyopathy screening recommendations, respectively.  This may be due to lack of awareness of the negative long-term effects of cancer treatments, according to the team, who add that addressing these shortcomings can help ensure childhood cancer survivors continue to lead healthy lives as adults.

Journal/conference: Canadian Medical Association Journal

Link to research (DOI): 10.1503/cmaj.231358

Organisation/s: Women’s College Hospital, Canada

Funder: This study was supported by ICES,
which is funded by an annual grant from the
Ontario Ministry of Health (MOH) and the
Ministry of Long-Term Care. This study also
received funding from the Canadian Institutes
of Health Research. Parts of this
material
are based on data and information
compiled and provided by the Ontario MOH.
The analyses, conclusions, opinions, and
statements expressed herein are solely
those of the authors and do not reflect
those of the funding or data sources; no
endorsement is intended or should be
inferred. This research was facilitated by the
Pediatric Oncology Group of Ontario’s Networked
Information System, financially supported
by Ontario’s Ministry of Health and
Long-Term Care.

Media release

From: Canadian Medical Association Journal

Most survivors of childhood cancer don’t get the tests needed to detect serious long-term adverse effects

Surviving childhood cancer does not always mean a clean bill of health, as the treatments that eradicate those cancers can put adult survivors at risk of new cancers and other serious health problems. Despite the existence of surveillance guidelines that recommend screening for adult cancers and other “late effects” of cancer therapy, childhood cancer survivors (CCS) are rarely up to date for recommended tests, according to a large study published in CMAJ (Canadian Medical Association Journal) led by researchers at The Hospital for Sick Children (SickKids) and Women’s College Hospital.

As many as 80% of childhood cancer survivors will develop a serious or life-threatening effect, such as cardiomyopathy (heart disease) and colorectal and breast cancer, from treatment by age 45 years. The risk of colorectal cancer is 2–3 times higher than for the general population, and the risk of breast cancer in females who underwent chest radiation is similar to that of people with a BRCA mutation.

“Surveillance for late effects in adult survivors of childhood cancer is poor, placing many survivors at risk for preventable harm,” writes Dr. Jennifer Shuldiner, scientist, Women’s College Hospital, Toronto, Ontario, with coauthors.

In this study, researchers used Ontario provincial data on 3241 CCS who had been diagnosed with cancer between 1984 and 2014. They studied CCS who were at elevated risk of breast, colorectal cancer, or cardiomyopathy because of radiation treatments or specific chemotherapies. Of the total, 2806 (87%) were at risk for at least 1 of these late effects, 345 (11%) were at risk for 2 and 90 (3%) were at risk for 3 late effects. 

The North American Children’s Oncology Group has developed long-term follow up guidelines (there have been 6 versions) to monitor adults who had cancer as children.

However, the number of survivors who were following the screening recommendations was low, with 13%, 6%, and 53% adherent to colorectal cancer, breast cancer, and cardiomyopathy screening recommendations, respectively. Those who were older at diagnosis were more likely to follow the cancer screening guidelines, whereas younger age at diagnosis was associated only with higher likelihood of following screening guidance for cardiomyopathy. 

A lack of awareness of the negative long-term effects of cancer treatments may underlie these low rates. Even in the case of survivors who attended specialized cancer survivor clinics, screening adherence rates were low. 

“Earlier studies found that a lack of knowledge about late effects risks and surveillance recommendations among survivors, family physicians, and specialists are substantial barriers to adherence,” write the authors.

Screening recommendations need to address barriers to completing screening to ensure that CCS continue to lead healthy lives as adults. 

“The challenge of ensuring that CCS receive the risk-adapted health care and surveillance testing they need to maximize their long-term health and quality of life is an area of intense focus,” adds Dr. Paul Nathan, director of the AfterCare Program and oncologist in the Division of Haematology/Oncology at SickKids. “Building on these findings, we will be launching a province-wide study to determine if periodic surveillance reminders for CCS and their family doctors will improve completion of these potentially life-saving tests.”

The findings demonstrate a need to support patients and primary care clinicians to improve adherence to surveillance guidelines among CCS. The authors note this responsibility must be shared between the cancer care systems, particularly the provincial pediatric cancer survivor network, and the patients themselves, through advocacy and other survivor support groups.

Longitudinal adherence to surveillance for late effects of cancer treatment: a population-based study of adult survivors of childhood cancer” is published March 11, 2024. 

SOURCE

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