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Age-Related Differences in Information Needs of Patients with Lymphoma: Results from the 2020 Global Patient Survey

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Age-Related Differences in the Informational Experiences and Needs of Patients with Lymphoma

Results from the 2020 Lymphoma Coalition Global Patient Survey

Authors: O. Bamigbola¹ and L. Warwick¹
¹ Lymphoma Coalition, Research, Mississauga, ON, Canada

Introduction and Objectives

Lymphomas most commonly occur in older adults but can occur in all age groups. Despite the shift towards patient-centered care, very little has been done to explore the informational needs of patients with lymphoma by age.

In this study, the Lymphoma Coalition (LC) describes age-related differences in the informational needs of patients with lymphoma using the 2020 LC Global Patient Survey (GPS).

Objectives:
The objectives of this study were to identify age-related differences in:

  1. How patients felt about the amount of information they received at diagnosis.
  2. The content of the information received at diagnosis and the level of understanding.
  3. Their information needs.

Methods

Study Design

  • This study is a sub-analysis of the LC 2020 GPS, an online global survey of patients with lymphoma and CLL, conducted every two years.
  • The LC 2020 GPS was hosted on a third-party portal from January–March 2020 in 19 languages.

Respondents

  • Globally, 11,878 respondents from 90+ countries participated (9,179 patients and 2,699 caregivers).
  • For this analysis, 9,078 patients who self-identified their age were included.
  • Patients were grouped into five age categories:
    • 18–29 years (n=638)
    • 30–39 years (n=1,196)
    • 40–59 years (n=3,261)
    • 60–69 years (n=2,216)
    • 70+ years (n=1,767)

Statistical Analysis

  • Raw data was entered, merged, and cleaned in IBM SPSS v27.
  • Demographics of the five age groups were examined.
  • Descriptive analyses for all questions relating to informational needs were performed in SPSS v27.

Results

General Findings

  • The five age groups differed significantly (p < 0.001) across demographic categories, including lymphoma subtype, sex, area of residence, educational level, employment status, and household status.
  • Patients were asked about their perception of the information given at diagnosis.

Key Insights:

  • The oldest age group (70+) reported the highest prevalence (70%) of having received the right amount of information.
  • Younger groups (18–29, 30–39, 40–59) reported the highest prevalence of not receiving enough information (38%, 42%, and 41% respectively).
  • Few patients reported receiving too much information, but among those who did, younger age groups (18–29, 30–39, 40–59) were more likely to report it (10%, 7%, 5%).

Figure 1: Information given at diagnosis by age groups (bar chart displayed in original poster).

Understanding and Information Needs

  • Compared to younger age groups, older age groups (60–69 and 70+) more frequently reported receiving and understanding information on different treatment options, disease stages, and managing side effects (see Table 1 in poster).
  • The top three areas patients needed more information about, regardless of age:
    1. Treatment options
    2. Side effects from treatment
    3. Diagnosis and what it means
  • Significant differences were found in how these needs were reported across age groups.

Support Needs

  • There were significant age differences in the prevalence of reporting a need for:
    • Self-care information
    • Psychological support/counseling
    • Fertility information
  • Younger patients (18–29, 30–39) most frequently reported needs for fertility and psychosocial support.
  • Older patients (60–69 and 70+) were more likely to report no further informational needs (12% and 19% respectively).

Conclusion

  • Compared to mid and older patient groups, younger patients with lymphoma or CLL reported experiencing and interpreting information differently. They also reported less understanding of the medical information given to them.
  • Younger patients reported higher informational needs about their disease and treatment, particularly regarding fertility and family support.
  • Clinicians should note these differences in age-related experiences and tailor information, attention, and support accordingly.

Contact Information

For questions, please contact the Lymphoma Coalition Research Department:

📧 Email: funmi@lymphomacoalition.org
🌐 Website: https://lymphomacoalition.org/global-patient-survey

Summary

  • Study Purpose:
    The Lymphoma Coalition analyzed age-related differences in the informational experiences and needs of patients with lymphoma using the 2020 Global Patient Survey (GPS).
  • Participants:
    9,078 patients (from 90+ countries) were grouped into five age categories: 18–29, 30–39, 40–59, 60–69, and 70+.
  • Key Findings:
    • Older patients (70+): Most likely to say they received the right amount of information (70%).
    • Younger patients (18–59): More likely to report not receiving enough information (38–42%) and, in some cases, receiving too much.
    • Understanding: Older groups (60–69, 70+) reported better understanding of treatment options, disease stages, and side-effect management.
    • Information needs: Most common across all ages:
      1. Treatment options
      2. Side effects
      3. Diagnosis meaning
    • Support needs: Younger groups wanted more information on fertility and psychosocial support, while older groups more often said they had no further needs.
  • Conclusion:
    Younger patients with lymphoma or CLL have distinct informational gaps and require tailored communication, attention, and support from clinicians—especially around fertility, family support, and psychosocial needs.