Life Satisfaction and Quality of Life in AML Long-Term Survivors: Primary Results of the AMLCG-Survivorship Study

Introduction

An increasing proportion of patients with acute myeloid leukemia (AML) become long-term survivors (AML-LTS). Somatic and psycho-social outcomes are therefore becoming increasingly important, but little is known about the long-term effects of the disease and its treatment.

Methods

We designed a comprehensive analysis of AML survivorship outcomes including psycho-social well-being and somatic health status, and conducted a questionnaire-based study collecting data from long term survivors and their physicians. This report focuses on general and health-related life satisfaction (gLS/hrLS, measured by the FLZ-M questionnaire). Compared to quality of life (QoL), LS takes into consideration the subjective importance of various areas of life, and the participant’s satisfaction with each. Impact of anxiety and depression, incidence of secondary cancer as well as clonal hematopoiesis are reported separately (Görlich et al, Moret et al, Krauss et al). We compared LS of AML-LTS with normative data of German adults not diagnosed with AML. Participants’ FLZ-M scores were standardized relative to age- and sex-stratified normal population means and standard deviations.

Results

427 former AML patients who had been enrolled in AMLCG clinical trials (AMLCG-1999/-2004/ -2008) or the AMLCG patient registry participated in this study between 5 and 18.6 years [y] after their initial AML diagnosis (median, 11.3y). Median age of AML-LTS was 61y (range 28y-93y), and 56% were female. Thirty-eight percent of participants had been treated with chemotherapy alone, while 62% received at least one allogeneic stem cell transplant (HSCT). A relapse had occurred in 24% of participants.

Unexpectedly, the gLS summary score (median, .12) was significantly higher in AML-LTS (p<.001) compared to controls (median, 0), although differences were small (95%CI .03 - .32) and very likely not clinically relevant (difference and CI < 1SD). No significant difference was found for health-related life satisfaction (hrLS). Looking at LS subscales, AML-LTS reported significantly lower satisfaction with hobbies (median, -.24), fitness (median, -.18) and composure (median, -.41), but higher satisfaction with finances (median, .36), living situation (median, .10), family life (median, .37), energy (median, .04), mobility (median, .56) and independence (median, .71; all p<.003).

Notably, subgroups of participants reported poor hrLS (>1SD below control mean; 17.5%) or poor gLS (13.5%), while 26% reported poor overall QoL as reported previously. All three outcomes are correlated (r=.63 to .76), with the closest association observed between QoL and hrLS (Figure A). To identify factors associated with poor LS, we fitted logistic regression models including pre-specified cofactors (age, sex, time since initial diagnosis, relapse and alloHSCT) and additional variables that associated with LS in univariate analyses.

Risk of poor gLS was increased with younger age, male sex, smaller household size and income, higher depression scores and low social support (Table 1). Factors associated with poor hrLS were previous treatment with chemotherapy alone, female sex, lower number of children, high anxiety and fatigue scores, and high comorbidity burden (Table 1). Participants with higher fatigue and anxiety scores, lower social support and higher comorbidity burden reported significantly lower QoL (Table 1). No influence on QoL was found for other characteristics including treatment (HSCT vs. no HSCT), previous relapse, or AML type (p>.05). Figure A illustrates multi-dimensional associations between risk factors and psycho-social outcomes.

Discussion

Unlike previous studies of AML survivorship outcomes, our large cohort included a diverse spectrum of patients regarding age, time since diagnosis, and treatment modalities, which allows for new insights into long-term quality of life and life satisfaction. Our study establishes that different factors impact overall QoL and life satisfaction in AML long-term survivors. Importantly, general life satisfaction of AML long-term survivors seems not to be influenced by treatment related factors or somatic comorbidities after AML. Our data suggest AML and its treatment can have long-term psycho-social and somatic health effects, but many former patients nevertheless are satisfied with their overall life situation.