Phantom pains and sensations – how does it feel? Only the patient really knows
-
Torsten E. Gordh
In the qualitative study by Berit Björkman et al. published in this issue of the Scandinavian Journal of Pain, some interesting aspects on post amputation pain problems and other phantom sensations are presented [1]. The information comes from the narrative information obtained by in-depth interviews from patients that have undergone amputations of an extremity or a breast, and are suffering from phantom sensations and phantom pain. The manuscript may seem odd for readers used to scientific articles mainly presenting medical research based on quantitative data, but it absolutely deserves publication, because it highlights the patients’ own experience of a very complex pain phenomenon, notoriously difficult to treat.
Quantitative research designs give us answers to many aspects that can be measured in some way, e.g. that phantom limb pain occurs in 50–80% of amputees, and that it is usually intermittent and of high intensity [2,3]. Furthermore that inphantompain, imaging studies can demonstrate that cerebral cortical reorganization occurs [4], and that even loss of brain volume takes place [5] as a consequence of amputation and phantom pains. However, what does it really feel like to suffer from phantom pains and phantom sensations, and what meaning and what consequences do they have for the individual? In order to understand these fundamental questions, the quantitative tools, the common foundation for medical research, will never give full answer. To understand this experience better, we can ask a friend that has undergone amputation what she/he experiences or, in a more systematic scientific way, we can apply qualitative narrative research designs [6].
The aim of this study by Berit Björkman et al. [1] was to describe and discuss how patients experienced and interpreted their post-limb amputation or post-mastectomy phantom phenomena. Focus was set on how patients evaluated the perceived qualities of the phenomenon itself, how different aspects, physical and socio-cultural, influenced the phenomenon, and how it affected the every-day life.
The study was prospective, i.e. the patients were recruited to the study before the amputation took place, which is a significant strength of the study. The situation was investigated one month after the operation. It may be of greater interest to study the situation when the pain has stabilized, e.g. after one year, but now Björkman et al. have increased our knowledge about the patients experience in the early postoperative phase [1].
Berit Björkman et al. [1] present some interesting findings, e.g. that the acute postoperative pain was not remembered as a major problem by the majority, but two found it unbearable. This underlines that all postoperative situations are unique. Surprisingly, most often the phantom sensations caused more annoyance than the phantom pain. Most patients undergoing an amputation of an extremity felt they had received good information about the possibility of phantom phenomena after surgery, while none of the eight women with breast cancer had received such preoperative information. This lack of knowledge led one woman, affected by both phantom sensations and pain after her mastectomy, to doubt the reality in her experience, which was burdensome, and probably unnecessary.
In general, the breast phenomena were described less vividly and less exact compared with limb amputees. An exception was one woman who described her lost nipple as so real that she could “hold it between her fingers and scratch away the itch”. Again, the experiences of phantom sensations are truly unique.
The authors underline that pain research should contain the perspective of the affected individual’s understanding of the pain phenomenon, as well as the need for individualized communication of information from the clinician.
The goal of qualitative, phenomenological studies is to “make the invisible visible”, to uncover and articulate the meaning of a phenomenon from lived experience. It is a research field in its own right, and it is increasingly important. It is the basis of most of the Patient Reported Outcomes (Pros) questionnaires that we all use every day, and it is demanded by regulators, e.g. FDA, in any pain research involving new medications.
We need to be more aware of the importance of qualitative research that can help us to better understand our patients. This is the basis for effective treatment.
DOI of refers to article: http://dx.doi.org/10.1016/j.sjpain.2012.02.007.
References
[1] Björkman B, Lund I, Arnér S, Hydén L-C. Phantom phenomena – their perceived qualities and consequences from the patient’s perspective. Scand J Pain 2012;3:134–40.Search in Google Scholar
[2] Coalman CM, Dijkstra PU, Geertzen JHB, Elzinga A, van der Schans CP. Phantom pain and phantom sensations in upper limb amputees. Pain 2000;87:33–41.Search in Google Scholar
[3] Nikolajsen L, Jensen TS. Phantom limb pain. Br J Anaesth 2001;87:107–16.Search in Google Scholar
[4] MacIver K, Lloyd DM, Kelly S, Roberts N, Nurmikko T. Phantom limb pain, cortical reorganization and the therapeutic effect of mental imagery. Brain 2008;131:2181–91.Search in Google Scholar
[5] Preißler S, Feiler J, Dietrich C, Hofmann GO, Miltner WH, Weiss T. Gray matter changes following limb amputation with high and low intensities of phantom limb pain. Cereb Cortex 2012 [Epub ahead of print].Search in Google Scholar
[6] Steihaug S, Malterud K. Stories about bodies: a narrative study on selfunderstanding and chronic pain. Scand J Prim Health Care 2008;26:188–92.Search in Google Scholar
© 2012 Scandinavian Association for the Study of Pain
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