Patient information on phantom limb pain: a focus group study of patient experiences, perceptions and opinions

Educating patients about their condition is regarded as a fundamental step in pain management. This study used focus groups with patients to explore their experiences and perceptions of the information on phantom pain that they received before and after amputation, and their views on improving this information. Thirty-one patients with a lower limb amputation attended one of seven focus groups. The majority reported phantom pain although there were individual variations in character, severity and persistence. There were wide variations in what people were told from occasional reports of good information to instances of people reporting little or no information from professionals. There were strong feelings that information should be given before or soon after amputation with a preference for verbal one-to-one explanations. Professionals, particularly nurses and surgeons, were regarded as the best source of information, although peer support was seen to be important. These findings indicate that people require timely up-to-date information on phantom pain which sensitively addresses the variability of the experience and provides the foundation for ongoing pain management. We propose that the information process could be improved by ensuring that professionals use standard information for patients derived from purposefully written sections in national guidelines.