Evaluating the Discussion of Late Effects and Screening Recommendations in Survivors of Adolescent and Young Adult (AYA) Lymphoma

Abstract

Survivors of lymphoma treated as AYAs are at risk of developing late effects (LEs) of radiotherapy (RT) and chemotherapy. The study objective was to assess the quality and quantity of late effects (LEs) discussion and screening recommendations (SRs) provided to survivors of AYA lymphoma and their primary care professionals (PCPs). Eligible patients were diagnosed with lymphoma at 15-29 years of age, received RT between 1974 and 2014 in the province, and survived for at least 5 years post-RT. Charts were reviewed for patient, disease, and treatment characteristics, and for documented counseling of LEs risks and SRs prior to discharge from the cancer center. Individual susceptibility to specific LEs was determined based on each patient’s RT and chemotherapy exposure. The study cohort consisted of 378 patients, including 226 survivors of HL and 152 survivors of NHL. Median age at diagnosis was 22 years. The total percentage of patient charts with any specific LEs discussed was 70.4%, while the total percentage of patients receiving any specific SRs was 38.9%. Accounting for individual patient susceptibility to LEs, the most commonly discussed LEs risks were radiation-induced (RI) infertility (discussed in 48.7% of those susceptible), RI lung damage (33.1% of those susceptible), and RI thyroid disease (31.0% of those susceptible). The least commonly discussed LEs risks in susceptible patients were RI bowel cancer (3.1%), RI meningioma (1.9%), and RI carotid artery stenosis (0.4%). The most common SRs in susceptible patients were for RI breast cancer (43.2%) and RI thyroid disease (23.5%). SRs were discussed with 53.1% of patients who had a discharge appointment vs. 29.9% of patients who did not have a discharge appointment (P<0.0005). LEs were discussed for 87.7% of patients diagnosed between 1996-2009 compared to 51.9% of patients diagnosed between 1959 and 1996 (P<0.0005). SRs were made for 46.7% of patients diagnosed between 1996-2009 vs. 30.6% of those diagnosed between 1959 and 1996 (P=0.001). SRs were given to a greater proportion of patients who were ≥29 years vs. <29 years old at discharge (44.0% vs. 33.5%, respectively; P=0.036), while there was no significant difference in LEs discussion between these two groups. Most survivors of AYA lymphoma received some discussion of LEs, but each relevant LEs risk was discussed in only a minority of susceptible patients; the discussion of SRs was even less common. SRs were more likely given to patients who had a formal discharge appointment. The frequency of LEs discussion and SRs increased over time, but there is room for further improvement. Overall, written documentation to PCPs lacked adequate LEs education and SRs. Recall of this cohort of AYA lymphoma survivors should be considered to assess the presence of LEs and long-term follow up needs.