Aims Pain is one of the most frequent symptoms among patients with metastatic cancer. Measuring the efficacy of the management of pain is challenging. There is currently little in the literature to inform us how patients with advanced incurable cancer determine whether their pain is controlled or not. This study aimed to explore how these patients describe the control of pain.
Methods A qualitative study using face-to-face interviews with patients who had advanced incurable cancer and experienced pain. Data was analysed using the principles of the grounded theory approach.
Results Twelve patients were interviewed until data saturation was reached; four themes emerged; ‘maintaining role, self and independence’, ‘compromising/modifying expectations’, ‘role of healthcare professionals’ and ‘meaning of pain in context of illness’.
Conclusion Patients determined if their pain was ‘controlled’ by whether or not they were able to perform activities or tasks, and maintain relationships with family or friends, which determined themselves as individuals. Participants did not find the use of numerical rating scales useful or meaningful in determining whether they were able to perform these activities or maintain a sense of control and independence. Goal setting for patients with advanced cancer pain may be useful to allow patients to determine what they want from the ‘management’ of their pain. These patient derived outcomes could be useful in clinical practice and research.
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