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Many survivors of childhood cancer do not get cancer-focused aftercare, study shows

Monday, October 06 2008 | Comments

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What's This? More than 80% of survivors of childhood cancers do not receive recommended risk-based care, despite a significant risk of late effects after cancer therapy, recently published data show.

To see if survivors of childhood cancer receive regular medical care focused on the specific morbidities that can arise from their treatment, the researchers conducted a cross-sectional survey of health care use in 8,522 participants in the Childhood Cancer Survivor Study for whom information regarding treatment for their original cancer was available.

In a questionnaire that addressed health care use, participants were asked whether they had visited a health care provider within the last 2 years, whether the visit was related to their cancer, and whether their health care provider had given them advice on how to reduce their risk or discussed or ordered screening tests for cancer-related sequelae. Based on these responses, health care was categorized into 4 separate groups: no health care, general medical care (no visits related to previous cancer), general survival-focused care (care related to previous cancer but no advice given), and risk-based, survivor focused care (cancer-specific care that included advice about avoiding risks).

Of the cohort, 953 (11.2%) reported receiving no medical care during the previous 2 years; 4,882 survivors (57.3%) said they received general medical care. In contrast, only 1,166 survivors (13.7%) reported receiving general survivor-focused care, and 1,521 survivors (17.8%) reported receiving risk-based, survivor-focused care.

Survivors of central nervous system tumors were the most likely to seek general survivor-focused or risk-based, survivor-focused care, while survivors of neuroblastoma were the most likely to have received no medical care, according to study data.

Broken down by demographics, participants who were male or uninsured and those with a household income of less than $40,000 annually were more likely to report no medical visits. Patients who reported moderate to severe pain and those with a severe, life-threatening or disabling condition were more likely to have received care.

Patients who received general medical care rather than risk-based, survivor-focused care were more likely to be older, male, black, and uninsured. Risk-based, survivor-focused care was most likely found with patients who reported moderate to extreme cancer-related pain or anxiety, poor physical health, or more serious morbidity.

Survivors treated with an alkylating agent or anthracycline (without chest radiation) were just as likely to report receiving no care as to report receiving general care.

In the subgroup of participants for whom an echocardiogram was indicated (n=1,180), only 511 (28.2%) reported having received one. In the 414 women who were treated with chest radiation and who were aged 27 years or older at the time of the questionnaire but were younger than the age at which routine screening mammography is recommended, 169 (40.8%) of the survivors reported receiving an indicated mammogram.

The authors said that the low rate of risk-based, survivor-focused care seen in their study--despite the likelihood than more than 70% of survivors will develop >=1 chronic condition related to their prior therapy--"suggests multiple lost opportunities to prevent or expeditiously detect and treat these sequelae."

"Thus, efforts must be focused on providing primary care clinicians with the education and resources needed to provide risk-based care to this group of patients," they concluded. (Nathan PC, et al. J Clin Oncol 2008;26:4401-4409.)

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