Support and Follow-up Are Needed to Combat Distress in Lymphoma

A population of 7113 patients who were diagnosed with lymphoma and CLL responded to the 2022 global survey. Four of 5 responders reported having at least 1 psychosocial problem within the previous year.

Psychological concerns related to lymphoma and chronic lymphocytic leukemia (CLL) diagnosis are prevalent, with experts highlighting the importance of identifying distress, lending support, and providing regular follow-up throughout the treatment journey, according to findings from a white paper published by the Lymphoma Coalition.¹

The authors highlighted several areas of improvement that may help to address these psychological concerns. The first recommendation emphasized the importance of giving patients the space to talk about their emotional health without minimizing their concerns. To facilitate these discussions, one must encourage patients to discuss their feelings early in their treatment journey and check in on patients’ mental health every visit.

Passing along information to patients regarding how their diagnosis may impact their emotional health should also be emphasized, including verbal and written information on how distress may affect them, potential symptoms, and potential support options. Guidelines should also be used to recognize patient distress, utilize the right screenings, select proper support, and encourage follow-up to ensure support tools are helping as intended.

Moreover, the paper also highlighted the value of determining factors associated with distress that may be present in those with lymphoma, including investigating how frequently mild, moderate, and severe symptoms of anxiety and depression appear, and how patients respond to treatment.^2,3 

There are several other recommendations for multidisciplinary care teams to provide support to their patients:

• Training teams on distress guidelines and screening strategies
• Looking for signs of distress throughout the treatment journey
• Normalizing discussions around emotional health
• Ensuring patients and caregivers are aware that psychological problems could continue far into survivorship
• Identifying coping strategies
• Avoiding excessive tests to decrease patient anxiety
• Referring patients to receive the best support via psycho-oncology or patient organizations

The white paper was put together using the Lymphoma Coalition’s Global Patient Survey, which is sent out every 2 years. A population of 7113 patients who were diagnosed with lymphoma and CLL responded to the 2022 global survey. Four of 5 responders reported having at least 1 psychosocial problem within the previous year. Although 30% of the population were diagnosed 2 to 5 years prior, they reported having psychosocial concerns within the previous 12 months. Moreover, 22% were diagnosed 5 to 10 years prior, 18% over 10 years, 15% 1 to 2 years prior, 8% 6 months to 1 year, and 7% fewer than 6 months.

Findings also indicated that psychological issues among those with lymphoma were prevalent across several global regions, with 77%, 85%, 77%, 68%, and 85% of patients from Europe, the Asia/Pacific region, Middle East and Africa, North America, and South America reporting 1 or more psychosocial issues.

Notably, patients with Waldenström macroglobulinemia and cutaneous lymphomas had the lowest rates of patients with psychosocial concerns at 31% and 19% to 22%, respectively. Conversely, patients between the ages of 18 to 34 years had the most psychosocial issues at 93%; additionally, 65% of patients aged over 65 years had similar concerns.

The authors reported that fear was the most prominent issue, including fear of disease relapse or recurrence, or progression. Common psychosocial issues reported in the survey included fear of lymphoma relapse (50%), fear of progression (47%), anxiety (38%), depression (27%), isolation (26%), relationship changes (20%), body image concerns (26%), self-esteem loss (20%), and post-traumatic stress disorder (11%). Women were reported as having more psychosocial issues than men including fear of lymphoma relapse (41% vs 36%), fear of progression (41% vs 38%), anxiety (38% vs 25%), depression (27% vs 21%), isolation (30% vs 21%), relationship changes (21% vs 17%), body image concerns (32% vs 19%), self-esteem loss (24% vs 16%), and post-traumatic stress disorder (13% vs 7%).

Additionally, in a population of 3113 patients who fear lymphoma relapse, respondents reported thinking of cancer returning (73%), examining oneself for physical signs of cancer (50%), having thoughts of dying (32%), having difficulty making plans for the future (32%), and having waves of strong feelings regarding disease recurrence that are hard to control (22%). Other patients reported feeling alone (20%), feeling distressed over these thoughts (20%), and feeling that these thoughts are intrusive during daily activities (16%).

References

1. Psychological impact of lymphoma: learnings from the 2020 & 2022 global patient surveys on lymphomas & CLL. Lymphoma Coalition. 2023. Accessed September 13, 2023. https://bit.ly/44Sp9RM
2. Tan KP, Talaulikar D, Scholz B. Factors of emotional distress in lymphoma: a systematic review. Cancer Med. 2023;12(13):14646-14662. doi:10.1002/cam4.6069
3. Grassi L, Caruso R, Riba MB, et al. Anxiety and depression in adult cancer patients: ESMO Clinical Practice Guideline. ESMO Open. 2023;8(2):101155. doi:10.1016/j.esmoop.2023.101155