Patient and Caregiver Perceptions of Lymphoma Care and Research Opportunities: A Qualitative Study

For which topic were research priorities identified?

lymphoma

In which location was the research priority setting conducted?

North America - USA

Why was it conducted at all?

Although the number of lymphoma survivors has increased, the needs and research priorities of survivors and their caregivers rarely are examined and addressed. Determining the needs and priorities for this population requires an assessment of the attitudes and experiences of patients and caregivers.

What was the objective?

to determine care needs and research priorities

What was the outcome?

a list of 7 research topics

How long did the research prioritization take?

spring 2017 - spring of 2018

Which methods were used to identify research priorities?

focus group; interview

How were the priorities for research identified exactly?

Step 1: focus groups: with lymphoma survivors and lymphoma caregivers, participants discussed their lymphoma experiences, their clinical care team, priorities for future research, and suggestions for improving care. Step 2: data processing: thematic analysis: four topics emerged. Step 3: interviews: with lymphoma survivors and lymphoma caregivers, Step 4: data processing: thematic analysis, three topics emerged

Which stakeholders took part?

Lymphoma survivors and their caregivers. Focus groups: 15 participants: 8 lymphoma survivors and 7 caregivers. Interviews: 19 participants.

How were stakeholders recruited?

For the focus groups, participants were recruited from individuals attending a national Lymphoma Research Foundation (LRF) patient education conference held in Brooklyn, New York, and a regional LRF conference taking place in Atlanta, Georgia. The study was promoted using flyer distribution during conference check-in and by in-person recruitment during the conference by research team members and conference presenters. For the individual interviews, participants were recruited in-person by research team members at LRF and other local patient educational conferences and via telephone from a pool of current lymphoma research participants at a university research hospital in Georgia.

Were stakeholders actively involved or did they just participate?

Stakeholders were mere participants of the research prioritization process; they were not actively involved in the process.