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Severe fatigue prevents social reintegration among Hodgkin lymphoma survivors
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Survivors of Hodgkin lymphoma often experience severe fatigue that prevents their social reintegration for employment, education and finances, according to a study published in the Journal of Clinical Oncology.
“The severe exhaustion [from cancer-related fatigue] compromises the everyday life of affected patients and survivors of cancer,” Peter Borchmann, MD, assistant medical director in the department of hematology and oncology at University Hospital of Cologne in Germany, and colleagues wrote. “Persistent fatigue is observed in up to 40% of patients with Hodgkin lymphoma. Fatigue remains a relevant problem even years after successful lymphoma treatment, and is reported to be 2.5 to 3 times higher in Hodgkin lymphoma survivors than in the general population.”
However, analyses of cancer-related fatigue have not included the lingering effects on quality of life in survivors of Hodgkin lymphoma.
“In particular, the reintegration into employment plays a major role in adolescents or young adults with cancer because the disease often occurs during a stage of life when they are either still being educated or are at the beginning of their professional career,” the researchers wrote.
Borchmann and colleagues analyzed data from three first-line clinical trials — conducted in patients with early-stage favorable disease (HD13 trial), early-stage unfavorable disease (HD14 trial) and advanced-stage disease (HD15 trial) — to determine the impact between severe fatigue in survivors had on their social reintegration.
In total, 4,529 participants (median age, 35 years; 56% men) completed at least one EORTC Quality-of-Life Questionnaire Core 30 assessment for survivors.
Most of the 37% of patients with severe fatigue at baseline were younger, female and had higher-stage disease than patients without baseline severe fatigue.
The proportion of survivors with severe fatigue ranged from 24% at year 1 to 20% at year 5 of follow-up.
Overall, researchers found no significant effect of baseline severe fatigue on PFS and OS. However, an analysis of different treatment groups suggested that the influence of baseline severe fatigue on PFS and OS may be less pronounced after more effective therapies. When evaluating patients treated with standard therapy (n = 1,375), baseline severe fatigue appeared to be a significant risk factor for impaired PFS (5-year PFS, 87.1%; HR = 1.52; 95% CI, 1.08-2.12) and OS (5-year PFS, 95.1%; HR = 1.65; 95% CI, 0.99-2.75).
“This may be a problem, especially when less effective chemotherapies are applied,” Borchmann and colleagues wrote. “However, within our clinical trials, the impact of fatigue on the treatment outcome could be overcome when using the most effective Hodgkin lymphoma treatment.”
In year 5 after therapy, patients who reported severe fatigue were less likely to be working or in education (57% vs. 84%), and they had a higher financial distress score (46.5 vs. 17.3) than survivors without severe fatigue.
“Approximately one-third of cancer survivors experience changes in their work situation,” the researchers wrote. “Especially in young adults with cancer, being uninvolved in school or work is a serious problem, because it contributes to psychological distress at the time of their transition to survivorship. Furthermore, changes in employment will lead to financial distress.”
In addition, severe fatigue was also associated with a higher mean number of visits to medical specialists per year (6.8 vs. 4.3).
“Our results strongly recommend that fatigue be regarded as a diagnosis. In most cases, public acceptance is the first step to helping affected patients cope with their specific symptoms,” the researchers added.
A recent clinical practice guideline has been published to assist in standardizing screening, assessment and management of severe fatigue in adult cancer survivors; however, the researchers noted more knowledge on effective interventions is needed.
“Beyond the acceptance of fatigue as a potentially disabling diagnosis, future research should focus on the development of intervention strategies to better support many survivors on their way back to a normal life.” – by Kristie L. Kahl
Disclosures: Borchmann reports no relevant financial disclosures. Please see the full study for a list of all other researchers’ relevant financial disclosures.
Perspective
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Stephen M. Ansell
Patients with Hodgkin lymphoma have excellent clinical outcomes with modern therapy and — in view of the fact that many of the patients are young — it is expected that patients will recover after treatment, be able to return to work, and have a productive and normal subsequent life. These data from Behringer and colleagues show this may, in fact, not be true.
The study, which assessed responses from 4,529 patients treated with modern therapy on three German Hodgkin Study Group clinical trials, showed that many patients had significant fatigue at the time of diagnosis, and that this fatigue persisted and significantly impaired PFS and possibly OS. Further, patients reported that fatigue profoundly impacted their ability to return to work and to be gainfully employed.
Although it is easy to assume that intensive chemotherapy is the culprit for persistent fatigue, these results suggest that the fatigue may, in fact, be related to underlying disease factors. The study showed that patients with early-stage favorable Hodgkin lymphoma had less fatigue than those with more advanced-stage disease. Of significant importance was the fact that highly effective therapy could, in fact, overcome some of the symptoms of fatigue and avoid a detrimental effect on PFS and OS. Another important finding was that the significant fatigue resulted in high utilization of the health system and profound financial problems in the long term.
In a disease for which real progress has been made over recent decades and patients are being cured, it is extremely important for the medical community to focus on managing patients’ long-term outcomes and allowing them to integrate back into society to be productive and gainfully employed. These data, therefore, highlight the importance of future research to understand the causes of the fatigue in Hodgkin lymphoma, and to develop mechanisms to overcome fatigue and improve quality of life for the long term.
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