Patient-reported experiences with cancer-related fatigue (CRF) among treated adolescents and young adults (AYA) with Hodgkin Lymphoma (HL)
Authors: Marjorie Morrison; Shawn Sajkowski; Lorna Warwick; Mavis Lui
Lymphoma Coalition, Canada
Background and aim
CRF may occur as a symptom of Hodgkin lymphoma or as a treatment side effect and can persist for months or years. Evidence specific to adolescents and young adults remains limited.
This study explored experiences of CRF as a side effect among treated AYAs with Hodgkin lymphoma.
Methods
- A cross-sectional, anonymous online survey capturing the lived experiences of people affected by lymphoma was deployed in 2024.
- Respondents aged 18-39, treated within the previous 2 years (n=313)
- Assessed CRF occurrence, severity, QoL impact, discussions with HCPs and support received
A clear support gap
Discussing CRF did not consistently lead to information or support.
- Received support
- 35%
- Discussed with HCP
- 50%
- ≈ 2 in 3 AYA-HL patients who discussed CRF with an HCP received no CRF-specific information or support.
- Most common resource: CRF versus other fatigue.
- †Base: discussed CRF with a healthcare professional (HCP).
Conclusions
CRF is a highly reported treatment side effect with a significant impact on QoL among AYA patients with Hodgkin lymphoma. Despite discussing CRF with HCPs, approximately two-thirds received no information or support to help manage it. HCPs should initiate proactive discussions and integrate appropriate screening tools, resources and support into clinical care to help optimise QoL for this patient population.
The Central Finding
- Cancer-related fatigue is common, severe and disruptive
- Reported CRF as a side effect
- 76%
- Severely / Very severely affected*
- 56%
- Moderate-to-severe impact on QoL*
62%
*Among respondents who reported CRF. CRF = cancer-related fatigue; QoL = quality of life.