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Patient Perspective Psychosocial Impact of Lymphoma & CLL Treatment – 2024 Global Patient Survey

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Patient perspective on the prevalence and severity of adverse psychosocial outcomes amongst those treated for lymphoma or chronic lymphocytic leukemia – an analysis of the Lymphoma Coalition’s 2024 Global Patient Survey

Steve E. Kalloger, Amanda Watson, Shawn Sajkowski, Lorna Warwick
Lymphoma Coalition, Mississauga, ON, Canada

Introduction
Patients who have received treatment for lymphoma or chronic lymphocytic leukemia (CLL) experience numerous side effects which can have a profound impact on health-related quality of life (HRQoL). Some of the most underreported are adverse psycho-social outcomes (APSO). We explored the prevalence and severity of APSO’s amongst a globally derived sample from this patient population.

Methods
● Patient reported outcomes (PRO’s) were collected from an anonymous global survey directed at patients with lymphoma and CLL.
● Nineteen different APSO’s were pre-specified in the survey.
● Prevalence and severity (using a 5-part Likert scale) were captured.
● Responses received from 5984 patients who had received treatment, the median age was 64, ranging from 18 – 94 years. Sixty percent were female.
● Latent class analysis (LCA) was used to cluster patients with a propensity for experiencing multiple APSO’s.
● Resultant clusters were investigated to determine if they were enriched for selected demographics.

Figure 1. Prevalence of psychosocial outcomes.
Fear of progression/relapse: 49%
Concern committing to isolating immunocompromised: 38.4%
Worry: 27.2%
Concerns about physical appearance: 27.2%
Depersonalization: 21.8%
Fear of dying: 21.5%
Isolation/self loneliness: 21.5%
Loss of interest in usual activities: 19.1%
Loss of self-esteem: 18.6%
Loss of alertness: 18.0%
Feelings of worthlessness: 16.6%
Grief or loss: 16.0%
Fear of being incapacitated: 15.7%
PTSD: 15.0%
Fear of being overwhelmed: 14.1%
Loss of meaning or purpose: 9.7%
Change in faith/beliefs: 4.0%
Conflicts between beliefs and cancer treatments: 2.4%
Other: 2.4%

Results
Fear of progression/relapse was the most prevalent APSO (49%; Fig. 1). Most APSO’s had severity scores above 3 indicating a moderate level of severity. LCA identified a cluster comprising 12% of the patients who experienced all APSO’s at a higher rate than the remaining patients (p<0.0001). Both younger age, female sex and relapse incidence were significantly enriched in this cluster (p<0.0004). The results suggest that a segment of patients experience multiple APSO’s which can compound to create a significant overall degradation in HRQoL. While younger age and female sex are enriched in this segment, further exploration is needed to identify those with heightened risk for multiple APSO’s.

Figures (from left to right, top to bottom):

  • Figure 2. Experienced concerns about body image/physical appearance stratified by cluster.
  • Figure 3. Experience of change in faith/beliefs stratified by cluster.
  • Figure 4. Experience of grief/loss stratified by cluster.
  • Figure 5. Experience of PTSD stratified by cluster.
  • Figure 6. Experience of conflict between beliefs and cancer treatments stratified by cluster.
  • Figure 7. Experience of loss of interest in usual activities stratified by cluster.
  • Figure 8. Experience of worry stratified by cluster.
  • Figure 9. Experience of concerns due to being immunocompromised stratified by cluster.
  • Figure 10. Experience of fear of being incapacitated stratified by cluster.
  • Figure 11. Experience of isolation/loneliness stratified by cluster.
  • Figure 12. Experience of fear of dying stratified by cluster.
  • Figure 13. Experience of loss of sense of meaning or purpose stratified by cluster.
  • Figure 14. Experience of changes in relationships stratified by cluster.
  • Figure 15. Experience of loss of self-esteem stratified by cluster.
  • Figure 16. Experience of depersonalization stratified by cluster.
  • Figure 17. Experience of feelings of worthlessness & burden stratified by cluster.
  • Figure 18. Experience of conflict between beliefs and cancer treatments stratified by cluster.
  • Figure 19. Experience of depersonalization stratified by cluster.
  • Figure 20. Probability of Cluster Membership Factored for Age, Biological Sex, and Relapse Status.
    • “Probability of Cluster 1 Membership (Male)”
      “Probability of Cluster 2 Membership (Male)”
      “Probability of Cluster 3 Membership (Male)”
      “Probability of Cluster 4 Membership (Male)”
      “Probability of Cluster 1 Membership (Female)”
      “Probability of Cluster 2 Membership (Female)”
      “Probability of Cluster 3 Membership (Female)”
      “Probability of Cluster 4 Membership (Female)”
  • Figure Caption: “The probability of cluster membership by age, stratified by biological sex and relapse status. The probability of belonging to Cluster 1 is positively influenced by female sex and relapse incidence, while the probability of belonging to Cluster 4 is associated with younger age and female sex. Note: Confidence is estimated by bootstrap resampling (n = 5000).”

Conclusion
The results suggest that a segment of patients experience multiple APSO’s which can compound to create a significant overall degradation in HRQoL. While younger age and female sex are enriched in this segment, further exploration is needed to identify those with heightened risk for multiple APSO’s. The application of mitigation strategies in those suffering from APSO’s may help to improve patient’s HRQoL during treatment, recovery and rehabilitation.

Conflict of interest/disclosure
This study was sponsored by Astra Zeneca, Eli Lilly, Incyte, Kite, a Gilead Company, Johnson & Johnson Innovative Medicine, Novartis, Regeneron, F. Hoffman-La Roche Ltd, SERB Pharmaceuticals, Sobi – Swedish Orphan Biovitrum, Takeda Pharmaceuticals

Contact information
For further details on the LC 2024 GPS, please scan the QR code or visit https://lymphomacoalition.org/global-patient-survey/. Please direct any queries to the research department at Lymphoma Coalition: Steve@lymphomacoalition.org

Summary

The Lymphoma Coalition conducted a global patient survey (n = 5,984) on those treated for lymphoma or chronic lymphocytic leukemia (CLL) to assess the prevalence and severity of adverse psychosocial outcomes (APSO).

Key Findings

  • Top APSO:
    • Fear of progression/relapse (reported by 49% of patients).
    • Other common APSO’s: concerns about being immunocompromised, worry, body image issues, isolation, and fear of dying.
  • Severity:
    • Most APSO’s had moderate severity (Likert score >3).
  • Cluster Analysis:
    • Latent Class Analysis identified a group (~12%) experiencing multiple severe APSO’s.
    • This group was significantly enriched with younger patients, females, and those with relapse.

Implications

  • Experiencing multiple APSO’s may lead to severe declines in health-related quality of life (HRQoL).
  • Younger age and female sex are key risk factors.
  • There is a need for targeted interventions to support this high-risk subgroup.

Conclusion

Identifying and addressing multiple APSO’s in vulnerable patients is critical to improving their HRQoL during treatment, recovery, and rehabilitation.