Important knowledge of pain and phantom experiences after breast surgery and leg- or arm-amputation: Value of qualitative pain research

This paper by Berit Björkman et al., reports on the narrative information obtained by in-depth interviews from patients who have undergone amputations one month earlier, and are suffering from stump pain, phantom sensations and phantom limb pain, Their main finding is that “since no evidence-based treatment of choice for phantom pain exists, there is a need for clinical dialogues with patients, not only for giving necessary information about the phenomena, but also to listen carefully to the patients’ own descriptions and find out which functional losses or life changes patients fear the most. There should be a special focus on older patients”.

At first reading, it is a bit confusing, since most readers of medical scientific pain publications expect quantitative methods, statistics, and evidence based on randomized controlled trials (RCTs). But the information here should not be discounted. Our job, if we are clinicians, is to treat the patient, not just the pain or worse, just the diagnosis. We must first listen to the patient and take the oral history to form a hypothesis to direct our investigations to make the best diagnosis. And we must listen to the patient to know if treatment we prescribe is working.

Qualitative research is an expanding field (Malterud, 2001, Steihaug and Malterud, 2008). Interviews with individual patients or focus groups, analyzed with qualitative research methods is actually the basis of most of the Patient Reported Outcomes (PROs) questionnaires that we all use and patient interviews are demanded by regulators such as the FDA and EMEA in any pain research involving new medications that are applying for approval to bring to market. It is not fringe science and this is supported by a thriving literature. A good introduction to qualitative research methods is given by Denzin and Lincoln (Denzin and Lincoln, 2005), in their 1210 page handbook for use across disciplines, not only in medical science. Narrative is a foundation for cultural anthropology and in a sense, we as pain clinicians and researchers are deeply involved in the culture of pain. In the preface of this “Handbook”, Denzin comments on the “quiet revolution” where the clash between evidence based, quantitative, RCT research and qualitative research occurs. He also remarks on the “blurring of interdisciplinary boundaries” that is occurring. The article by Björkman et al. (Björkman et al., 2010) in this issue of the Scandinavian Journal of Pain is part of the revolution and we need to be more aware of the importance of qualitative research that can help us to better understand our patients for more effective treatment outcomes.

In short, the goal of qualitative, phenomenologic studies is to “make the invisible visible”, to uncover and articulate the meaning of a phenomenon from lived experience. A phenomenon, e.g. phantom limb pain, is experienced and understood in different ways by different individuals. The researcher observes and reports on this variation, and tries to create a full picture of the different reports. The method collects descriptions of experiences from a subjective perspective. The interviews are usually recorded, the text is analyzed in a structured way for “meaning-carrying units”, which are put together as thematic groups. These themes are then analyzed for essential structures. It may serve as an addition to knowledge obtained by quantitative methods, and often give us a reason for reconsideration and reflection.

We agree with the conclusion of this study, that the results “supplement the definition of phantom phenomena in scientific literature”. The results obtained by patient interviews using qualitative research methodology, give us a deeper understanding of the individual experiences. This is what counts for the patient, when it comes to questions such as suffering from pain and the effects of pain relief.