Symptom Control Trials in Patients With Advanced Cancer: A Qualitative Study

Abstract

Context: Symptom control research in patients with advanced cancer is not common. This may be the result of a belief that this research is unethical, not practical, or that patients are not interested. However, the experiences of cancer patients who have actually taken part in symptom control research near the end of life have never been detailed.

Objectives: The objective was to explore the experiences of patients with advanced cancer who had taken part in symptom control trials.

Methods: A prospective two-center study was undertaken using grounded theory methodology. Theoretical sampling was used to recruit patients from one of two double-blind, randomized, placebo-controlled trials studying novel analgesic agents for cancer-related pain. Participants completed one semistructured interview. Recruitment and interviewing continued until data saturation was achieved.

Results: Twenty-one participants were recruited. Fifteen (71%) were male, with a mean age of 62 years. Key themes identified included reasons for trial participation, participants' interactions with the trial staff, and participants' responses to the effect the trial had on their pain. In general, participants regarded taking part in a clinical trial as a positive experience, and potentially improving overall well-being. Crucially, this was not related to whether there had been an improvement in symptoms.

Conclusion: The findings provide grounds for optimism that patients with advanced cancer may benefit from taking part in symptom control trials, supporting the paradigm that participation in symptom control research should be encouraged in this population.

Keywords: Palliative care; cancer; research.

Fig. 1

This CONSORT diagram shows the patients who were recruited into this study. It illustrates the total number of patients who were eligible for the study and the reasons why some were not contacted at different stages of the recruitment process.

Fig. 2

Reasons for trial participation. This figure illustrates the wide range of reasons why participants wanted to take part in the clinical trial. Participants might have several of the reasons outlined. The reasons were grouped into self-benefit, benefits to others, and aspects that were not in the trial.