What do patients with advanced incurable cancer want from the management of their pain? A qualitative study

Abstract

Background: Pain is one of the most frequent symptoms among patients with metastatic cancer, yet little is known about what patients with advanced cancer want from the management of their pain. Measuring the effectiveness of the management of pain is challenging as it is a subjective phenomenon and a multifaceted process. Determining how we currently define whether a patient with pain due to advanced cancer has controlled pain (or not) is important, particularly from the patient’s perspective. Aim: To explore how patients with advanced cancer describe the control of pain and what they want from management of this pain. Design: Qualitative study using face-to-face interviews. Data were analysed using a constant comparison approach. Setting/participants: Purposive sample of patients with advanced cancer known to palliative care services. Results: Twelve interviews took place until saturation of data was achieved. Four themes emerged: maintaining role, self and independence; compromising/modifying expectations; role of healthcare professionals; and meaning of pain in context of advanced cancer. Conclusion: Patients determined whether 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. Numerical rating scales did not appear to be useful for patients in measuring whether they are able to perform these activities or maintain a sense of control and independence. Individualised goal/task/role/activity setting for patients with advanced cancer pain may be useful to allow patients themselves to determine what they want from the ‘management’ of their pain.