Fear of Recurrence Following Hematopoetic Stem Cell Transplantation

Hematopoetic Stem Cell Transplantation (HCT) is an aggressive treatment for hematological malignancies. Palliative treatment may be the only option in the event of post-HCT recurrence. We hypothesized that Fear of Recurrence (FOR) would: 1) lessen over time; 2) be modified by patient variables. HCT recipients were surveyed with the 5-item Fear of Recurrence Scale (Greenberg, et al. 1997) at discharge (T1), 3 (T2), 6 (T3), and 12 mos. (T4). Items are scored on a 5-point likert-type scale (i.e. strongly agree to strongly disagree). Higher scores indicate greater FOR. Mean scores (SD) and frequencies were calculated. MANOVA was utilized to assess change in FOR over time. 162 patients [mean age = 53.8 (SD = 14.1); 35% F; 90% white; 68% married; n = 49 lymphoma, 54 MM, 48 leukemia, 12 other; 66% autologous] completed questionnaires at hospital admission. Mean scores (SD) at T1, T2, T3 and T4 were: n = 133, 32.5 (18.9); n = 127, 35.1 (20.9); n = 105, 33.5 (21.7); n = 70, 36.4 (21.1); p = 0.30. 21 patients (16%) scored 1 SD above the mean at T1. A multivariate model [adding education, marital status, race, gender, age, disease type and performance status, (PS)] was constructed. FOR did not change significantly over time (p = 0.27). Recipients with higher PS endorsed lower FOR scores (p < 0.01). A percentage of recipients agreed that they are afraid of cancer recurrence (28%, 31%, 27%, 31%) and their fear of cancer recurrence gets in the way of enjoying life (4%, 12%, 12%, 10%). FOR trended upward from baseline but did not change significantly over one year post HCT. Poorer PS is related to greater FOR. A substantial percentage of recipients expressed high FOR at all time points. A much smaller percentage reported FOR getting in the way of enjoying life. FOR may be understood better if investigated by mixed method (qualitative and quantitative) approaches that can account for apparent discrepant results reported here (i.e. FOR does not necessarily interfere with enjoying life). Additional research on the FOR construct and sensitivity of the FOR Scale is warranted. Fear of recurrence is a dynamic concept and requires targeted counseling interventions based on individual differences. Higginbotham Memorial Fund for the Cancer Patient Support Program.