In Their Own Words: A Qualitative Descriptive Study of Patient and Caregiver Perspectives on Follow-Up Care after Palliative Radiotherapy.

Purpose: To explore patients' and caregivers' views on follow-up care after palliative radiotherapy.

Methodology: A qualitative study design was used. Patients receiving palliative radiotherapy or their caregivers were eligible to participate following informed consent. Participants attended a single interview. The interviews were guided by a set of open-ended questions designed to explore the participants' understanding of the purpose and preference for follow-up care after palliative radiotherapy. Interviews were recorded and transcribed verbatim. Themes were identified in the transcripts and described with consideration of the individual participant's demographics and cancer experiences.

Results: Nine participants (five patients and four caregivers) of eleven approached consented, and were interviewed. The median age of the participants was 60 years (range, 47-80 years). All participants had an Eastern Cooperative Oncology Group performance status of ≤1. Median time from the patient's initial cancer diagnosis to the study interview was 4.5 years (range, 3-35 years). Follow-up appointments were expected to provide an evaluation of treatment outcomes, complications, and current situations. Scheduled appointments were appreciated by some as they provided a dedicated opportunity to ask questions of their health care team. The receiving radiation oncology team's contact information was felt to be helpful because the patients could ask treatment-related questions. Many participants were comfortable with and expected the medical oncologist or referral physician to provide follow-up care for patients who received palliative radiotherapy.

Conclusions: Palliative patients have diverse physical and emotional care needs. Within this study sample, participants valued follow-up because it provided an evaluation of their clinical status. They also viewed their established primary oncologist as the most appropriate person to provide follow-up care, supplemented by an efficient way of contacting their radiation oncology team as needed.