Although patients with Hodgkin lymphoma can experience long-term survival, they may face difficulty in coping with treatment-related adverse outcomes. Researchers assessed the needs of lymphoma survivors and their caregivers and identified unmet patient-oriented research needs: quality of life after treatment, messaging and communication between the scientific community and patients, and emotional well-being. Jackelyn B. Payne, MPH, BS, BA, of Stony Brook University in New York, discussed the findings at the ASH Annual Meeting on December 2, 2018.

The qualitative study had two phases: semistructured focus groups and individual, semistructured telephone interviews. During phase I in 2017, researchers recruited eight lymphoma survivors and seven caregivers from regional and national lymphoma patient education conferences. Participants discussed their experiences, opinions, and priorities for lymphoma care and research.

Findings from the focus groups informed the discussion for individual phone interviews. In phase II in 2018, researchers recruited 17 lymphoma survivors and two caregivers from regional patient education conferences, as well as research participants at a university research hospital.

Most focus group participants reported frustration from a lack of information on diagnoses, treatment options, survivorship-related care, and research opportunities. Survivors and caregivers commonly felt disconnected from their healthcare team because of lack of communication, although some reported trusting their doctors.

Caregivers said their needs went completely unaddressed. Participants expressed great interest in learning about research findings but felt frustrated by the difficulty in identifying relevant studies.

During individual interviews, several participants described a desire for more holistic and survivorship-oriented research on quality of life, alternative and nontraditional medicine, diet, and emotional or mental health. Patients said the fear of the unknown was “debilitating.” To cope, they relied on support systems, practiced gratefulness, and fostered trusting relationships with the healthcare team. Participants noted that cancer strengthened relationships with their loved ones and increased their spirituality or mindfulness.

“Healthcare professionals and investigators can utilize these data to provide meaningful information regarding care delivery, supportive services, and lymphoma research that meets the needs of lymphoma survivors and caregivers,” the researchers concluded.