Adherence to Follow-up Care in Childhood Cancer Survivors Continues to be Subpar, Highlighting Need for More Resources to Increase Engagement

Childhood cancer survivors lack the proper education needed to highlight the importance of attending follow-up appointments in the years following their treatment, according to a group of researchers.

This conclusion comes from the group who recently studied why adherence to follow-up care among survivors of childhood cancers is abysmal.

The findings — which were published in ONCOLOGY — showed that out of 30 survey respondents, 53% reported that they had not received cancer-related follow-up care with a health care provider during their survivorship years.

The most common reason for not going to follow-up visits with a provider: lack of knowledge on the importance of cancer survivorship care.

Chronic Conditions and Cancer Survival

The survival rate of childhood cancer has increased from 62% to 86% in the past 40 years, and as a result, there are upwards of 500,000 childhood cancer survivors in the United States. However, as the number of childhood cancer survivors increases, so do the cases of long-term medical issues. In fact, the study authors noted, toxicity from cancer treatments — such as chemotherapy and radiotherapy — may increase the likelihood of chronic diseases in this population.

Consequently, the study authors stressed, childhood cancer survivors would benefit greatly from long-term survivorship care. The purpose of at least a yearly follow-up appointment in childhood cancer survivors, according to the researchers, is to catch potential comorbidities following treatment and monitor for chronic health conditions. However, adherence to follow-up appointments has been reported to be poor in this patient population.

The study authors reviewed internal databases from the Charleston Area Medical Center in West Virginia and found 103 childhood cancer survivors who received a diagnosis of cancer before the age of 18 and had completed treatment before 2017. They then conducted surveys over the phone to determine if there were certain predictors to the dismal adherence to follow-up care.

Only 30 of the initial 103 who did not have a documented follow-up in the past two years responded to the survey.

The finding that 53% of respondents did not receive survivorship care is in line with previous findings which showed that 55% of childhood cancer survivors failed to attend follow-up survivorship care.

However, not all study findings are the same. In fact, data out of St. Jude Children’s Research Hospital and the Children’s Hospital of Philadelphia showed that only 15% and 25% childhood cancer survivors failed to receive survivorship care, respectively.

“Both these institutions have a high ranking for (childhood cancer survivor) support and have numerous interventions in place to promote continued survivorship care,” the study authors wrote.

Factors That Do Not Play a Role in Adherence

All the survey respondents had health insurance, however there was no association between the type of health insurance and follow-up for survivorship care. This contrasts findings from previous studies that found that indicators such as higher education, employment and type of insurance were related to higher rates of survivorship care.

The results also showed that the longer the time had been since the cancer diagnosis, the less likely the patient was to attend survivorship care. This was consistent with study findings out of Roswell Park Cancer Institute in Buffalo, New York, that showed over a 20% drop in follow-up care rates from one to five years post diagnosis to six to 10 years post diagnosis.

The study authors offered several suggestions to address the low rates of follow-up survivorship care among childhood cancer survivors. For instance, they recommended integrating cancer registries, reaching out to patients in a manner that is convenient for them, creating a strong social network for childhood cancer survivors and providing them with more readily accessible resources to fix the knowledge gap.

They also noted that this is an understudied area and that more research is needed.

“(These) findings can help oncology centers to develop future interventions targeted towards this patient population to promote guideline-driven, long-term survivorship follow-up care,” they concluded

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