Suffering Before The Cure: Evaluation Of Psychological Morbidities In Adolescents and Young Adults With Hematologic Malignancies In Early Survivorship

Adolescents and young adults (AYAs) with cancer face unique psychosocial challenges. Hematologic malignancies account for the greatest frequency of AYA cancers and a growing number of AYA cancer survivors; however, there remains a paucity of studies describing the early and late psychological impact of experiencing a life-threatening blood cancer as an AYA. How oncologists perceive the psychological burden of cancer in AYAs is also unknown; provider under-appreciation may in part contribute to the documented unmet desire for mental health support amongst AYA cancer patients. The aims of this study were therefore to describe the prevalence and severity of psychological morbidities in AYAs with hematologic malignancies, and to examine provider perceptions of psychological morbidity in their AYA patients.

Patients ages 15-40 years at diagnosis of acute leukemia, aggressive non-Hodgkin lymphoma, and Hodgkin lymphoma who were undergoing curative intent therapy (on-treatment cohort) or had completed therapy within 2 years and were in remission (early survivor cohort) underwent a one-time semi-structured interview that incorporated validated measures of anxiety (State Anxiety Inventory [SAI]), depression (Center for Epidemiological Studies Depression Scale [CES-D]), and post-traumatic stress (PTSD Checklist [PCL-C]). Frequencies of patient anxiety, depression, traumatic stress, and composite distress (impairment in ≥1 psychological domain) were determined using published instrument cut-points, and stratified by cohort (on-treatment versus early survivor). Following patient enrollment, providers completed a survey evaluating their perception of the subject’s anxiety, depression, and traumatic stress. Spearman correlation coefficients evaluated correlations between provider perceptions and AYA scores on the survey measures.

Between October 2012 and May 2013, 61 (26 on-treatment, 35 early survivors) of 77 eligible AYAs completed the study and are evaluable. Median age at diagnosis was 26 years. 64% were male; 59% non-Hispanic white, 15% Hispanic, and 20% African American. 52% and 48% had lymphoma or leukemia, respectively. Median time from diagnosis to study interview was 13 months (range, 1-102). On-treatment versus early survivor cohort demographics differed only in median time from diagnosis to interview (5.4 months versus 13.6 months, p= .009). Of the 61 evaluable patients, 23% met criteria for anxiety, 28% for depression, and 13% for traumatic stress; 46% demonstrated PTSD symptomatology. 36% met criteria for impairment in at least one psychological domain. Psychological impairments were as frequent in the early survivors as the on-treatment cohort.

Provider surveys were distributed for the first 30 patients enrolled; 48 surveys were returned for 27 of the 30 patients. Providers were 50% attending physicians, 44% nurses, and 6% fellows; 71% were female. Providers had, on average, 10-20 interactions with the patient. Provider perceptions of their AYA patient’s psychological morbidities varied substantially between providers, and did not significantly correlate with results obtained via patient surveys (anxiety: r=.11, p= .57; depression: r=.13, p= .53; traumatic stress: r=.004, p= .98).

Many AYAs with hematologic malignancies experience substantial psychological morbidities both while undergoing therapy as well as during the first two years following treatment completion, with over one-third of patients meeting criteria for anxiety, depression, or traumatic stress. This psychological burden does not appear to be accurately appreciated by their oncology providers, indicating a need for increased awareness among the hematology/oncology community. Additional studies will explore the long-term implications of these findings, as well as novel interventions aimed at reducing the psychological burden for AYAs with hematologic malignancies.

No relevant conflicts of interest to declare.