Adolescent and young adult (AYA) cancer survivors are a unique group with special needs primarily due to receiving treatment at an early age, which means that they were most often not involved in treatment discussions and decisions. Furthermore, early treatment also results in survivors experiencing many years of survival. In contrast to these special needs, AYA survivors reported in a recent survey that the vast majority did not receive a written treatment summary explaining their treatment and it’s possible repercussions on issues such as disease recurrence and fertility in adulthood.
Findings from an analysis of the information obtained in this survey regarding the high rates of unmet information and service needs have been published in the current issue of the Journal of Adolescent and Young Adult Oncology.
L. Aubree Shay, School, Public Health, University of Texas Health Science Center Houston, San Antonio, Texas and co-authors of the article emphasised that AYA survivors are at risk of developing a range of late effects of treatment over a broad time-frame that range from secondary cancers to pulmonary or cardiovascular complications, as well as infertility. AYAs also must face the likelihood of coping with a chronic disease over the long term while struggling with the rapid developmental, social, and emotional changes that earmark the years from age 15 to adulthood.
The investigators assessed the extent to which survivorship care planning including provision of a written treatment summary and instructions for follow-up care are utilised and the association of survivorship planning with unmet needs among AYA cancer survivors who were aged 15 to 39 at diagnosis. Their analysis was based upon data from the 2010 LIVESTRONG Survey for People Affected by Cancer and included outcome variables of survivor reports of unmet needs, information on late effects of cancer treatment, fertility issues, cancer recurrence, and the risk of family cancer. Survey responses were rated on a five-point scale ranging from ‘‘Met none of my needs’’through ‘‘Met all of my needs’’ with an additional option of “I don’t know/not sure.”
AYAs reported a low rate of receiving a written treatment summary
A total of 12,037 cancer patients, survivors, caregivers, and family members completed the online survey; the analysis excluded 4286 individuals reporting being off-treatment, 280 respondents due to missing data establishing the age at treatment, and 114 survivors who were less than the age of 15 plus 2497 individuals who were aged 40 or older at the time of diagnosis, leaving 1395 respondents. The participants were on average (standard deviation) 30 (6.6) years old at the time of diagnosis and 38 years (9.2) at the time of survey completion. More than half of respondents were female, white, and had relatively high levels of education and income. The majority (60.9%) received their last treatment less than 5 years prior to the survey.
Importantly, just 370 (30.4%) of the 1395 AYA respondents reported receiving a written treatment summary; however 1049 (86.3%) survivors reported receiving instructions for follow-up care.
Eighty percent of AYA survivors cited addressing recurrence concerns as an unmet need. The second most often reported unmet need, which was stated by 78% of AYAs, was the provision of information on late effects. Other concerns and unmet needs were information of the family risk of cancer, which was raised by 51% of AYAs, and fertility information by 45%.
The highest association between reduced odds of an AYA survivor reporting unmet needs was with receipt of a written treatment summary
Multivariable analyses demonstrated an association between receipt of a written treatment summary and lower odds of having unmet needs about late effects information, odds ratio (OR) 0.51; 95% confidence interval (CI) 0.37,0.71, and also with lower odds of having recurrence concerns, OR 0.55; 95% CI 0.39, 0.79. After controlling for sociodemographic factors and cancer history, receipt of a written treatment summary remained significantly associated only with lower odds of having unmet needs of late effects information, OR 0.55; 95% CI 0.39, 0.79. Females were more likely to report having unmet need of late effect information (OR 2.03).
Both receipt of a written treatment summary and instructions for follow-up care were associated with lower odds of AYAs reporting unmet needs around recurrence concerns in the unadjusted model, OR 0.85; 95% CI 0.43, 0.78 and OR 0.59; 96% CI 0.37, 0.94, respectively. However, after controlling for sociodemographic factors and cancer history, only receipt of a written treatment summary remained significant, OR 0.55; 95% CI 0.39, 0.79.
Female (OR 1.55) and currently employed (OR 1.52) survivors were more likely to report unmet needs regarding cancer recurrence concerns.
Receipt of follow-up care instructions associated with lower odds of unmet needs about late effects information, OR 0.29; 95% CI 0.15, 0.58, which remained significant in the adjusted model after controlling for the variables.
Follow-up care instructions also associated with lower odds of unmet needs about fertility information, OR 0.62; 95% CI 0.42, 0.91.
Factors associated with higher odds of unmet fertility information needs included being female (OR 2.46), having a younger age at diagnosis, having a diagnosis of lymphoma (OR 1.83), testicular cancer (OR 2.34), and currently seeing an oncologist (OR 1.49).
Survivors who reported receipt of a written treatment summary and instructions for follow-up care were less likely to report unmet needs around concerns about family risk of cancer, according to the unadjusted model, OR 0.74; 0.57, 0.96 and OR 0.61 95% CI 0.43, 0.87], respectively, but these factors were not significant in the adjusted model.
The authors pointed out that this analysis was similar to other studies in uncovering high levels of unmet needs among AYA cancer survivors and underscored the importance of survivorship care planning consisting of written treatment summaries and follow-up care instructions. Their findings suggest that providing AYA survivors with information about their prior treatment and a plan for future follow-up care may help avoid poor outcomes regarding the service needs of AYA survivors.
Specifically, this analysis revealed that more than three-quarters of respondents reported unmet needs around late effects of treatment information and recurrence concerns, with just 30% of AYA survivors reporting that they received a written treatment summary.
They noted that this should change in the near future due to considerable advocacy regarding the importance of survivorship care planning, and because a written treatment summary is now required for accreditation by the American College of Surgeons Commission on Cancer.
The authors commented that the respondents to the LIVESTRONG survey are not representative of AYA survivors nationwide, since the respondent population was largely white and well educated. They suggest that future confirmatory studies should be conducted among more diverse samples. Also, because the survey was anonymous and conducted online, the authors could not calculate a response rate.
Nevertheless, these findings provide further evidence for the importance of survivorship care planning as a way to improve AYA cancer survivor outcomes.
Shay LA, Parsons HM, Vernon SW. Survivorship Care Planning and Unmet Information and Service Needs Among Adolescent and Young Adult Cancer Survivors. Journal of Adolescent and Young Adult Oncology 2017;6(2):327-332.