2022 Report Card on Lymphomas:
Spotlight on the Experience of Patients with Indolent Lymphomas
This report focuses specifically on the experience of those diagnosed with an indolent lymphoma, and the challenges living with a chronic cancer brings. Despite the existence of defined care pathways and referral processes, patients’ experiences are rarely linear and always unique, which allows space for gaps in support. Through gaining a better understanding of the challenges and issues that patients’ face during each phase of their care, LC hopes to bring awareness to and aid in bridging these gaps.
Key issues include:
- Diagnosis delays;
- Negative impact on patients’ quality of life;
- Access to credible, useable information to help them engage in their own care decisions;
- Healthcare systems are not patient-centred and do not reflect the unique needs of patients living with indolent lymphomas, especially those in active monitoring.
Read the 2022 Report Card
2020 Report Card on Lymphomas:
The impact of COVID-19 on Care
Coronavirus disease 2019 (COVID-19) is a novel (or new) coronavirus that was first detected in Wuhan, China in December 2019. On 11 March 2020, the COVID-19 outbreak was declared a pandemic by the World Health Organization (WHO).
Throughout 2020, the COVID-19 pandemic has profoundly affected the entire oncology community and has altered healthcare delivery for a duration that cannot yet be estimated. Patients with cancer are more susceptible to COVID-19 not only because of their underlying malignancy, but also because of the anti-cancer therapies they undergo that result in a suppressed immune system.
It is important that the challenges associated with managing patients with cancer during the COVID-19 pandemic be identified and mitigated for current and future pandemic preparedness, as well as ensuring the long-term impact of actions taken during the current pandemic are tracked and analysed.
This report points to various COVID-19-related impacts on patients with cancer, specific to lymphomas and CLL where possible, that have been identified through research. The specific areas of impact include:
- Clinical care and practice
- Psychosocial effects, including data from the Lymphoma Coalition 2020 Global Patient Survey (LC 2020 GPS)
- Cancer research
- Patient organisations
Major gaps in care for patients with cancer are identified and summarised, and recommendations for closing these gaps are described.
Read the 2020 Report Card
2019 Report Card on Lymphomas:
Age Related Lymphoma Patient Experience
Despite the growing population of older cancer patients, there are a limited number of research projects and initiatives that focus on the experience of these patients. Further, cancer as experienced by different patient age groups has not been well-studied generally.
As such, Lymphoma Coalition (LC) saw the need in the 2019 Report Card on Lymphomas to examine the age-related lymphoma patient experience.
Using a subset of data from the LC 2018 Global Patient Survey on Lymphomas and CLL (LC 2018 GPS), this report specifically examines the experiences of lymphoma patients within the following age categories:
- Young (18-59)
- Mid (60-69)
- Old (70+)
Within each of these age-groupings, key patient-reported issues are highlighted, including:
- Informational needs and understanding levels
- Physical conditions and medical issues
- Psychosocial issues
- Patient-doctor communication
- Barriers to treatment (including therapy and clinical trial access)
This report identifies issues and challenges in each patient age-grouping, key issues that are consistent across age-groupings, and determines specific areas where patients require additional information and support.