Whatever the individual says it is: A phenomenological analysis of chronic pain in people with Human Immunodeficiency Virus‐associated Distal Symmetrical Polyneuropathy

Abstract

BackgroundDistal symmetrical polyneuropathy [DSPN] is the commonest neurological manifestation of Human Immunodeficiency Virus [HIV] disease, occurring in approximately 35% of individuals diagnosed with acquired immunodeficiency syndrome [AIDS]. DSPN is characterised as a length dependent axonopathy; and is associated both with chronic pain and a resultant profile of functional impairments associated with this condition. Aetiology is uncertain, however incidence rates currently appear to be increasing. DSPN responds poorly to management, and there remains little consensus as to optimal treatment. To date, few interventions have been validated in clinical trials; however these studies have used a profile of outcome measures that is both highly variable and arguably excludes much of the symptom experience. What is most notably absent from the research related to DSPN to date are the voices of those who are living with the condition on a daily basis. What DSPN is actually like to experience remains relatively unexplored; and when what is known about DSPN is examined in greater detail it is apparent that there remains a great deal yet to learn. This study seeks to further develop the knowledge base of pain in HIV disease by describing the experience of pain associated with DSPN from the perspective of the individual who is experiencing it. Methods Nineteen individuals with a diagnostic profile consistent with DSPN were recruited to the study from two specialist HIV treatment facilities in central London, United Kingdom. In-depth, semi-structured interviews were conducted at entry, with follow-up at 6, 12, and 18 months post-entry. Participants were asked to describe any aspect of the experience of DSPN they thought was relevant. Interviews were recorded, transcribed verbatim, and analysed according to phenomenological method to identify significant themes characteristic of the data. Participants were actively engaged in the process of data analysis and endorsed all findings prior to the compilation of final results. Results. Analysis of the data identified seven themes describing the structure of the relationship between the individual and their experience of DSPN. The defining quality of the experience of DSPN is that of a constant variation of symptoms, rather than a relatively fixed and unchanging phenomenon (1). This is experienced at a magnitude sufficient to create an impact in the performance of functional activities (2). As a direct consequence of the experience of fuctional impairment, the individual is compelled to engage in a process of occupational adaptation (3) whereby routine activities are modified in order to allow for continued engagement with them. Symptoms are not perceived passively by the individual but rather are actively constructed on the basis of the individual's belief system in an ongoing evaluation of the symptom experience (4). The individual's sense of self-identity undergoes a process of reconstruction (5) in response to the chronic nature of the symptom experience. The individual attempts to create balance between the perceived costs and benefits of engagement in the domains of pain management, activity performance, and adherence to antiretroviral [ARV] therapy (6). The environment - including the natural, man-made, and social environments - is acknowledged as a significant influence on the illness experience (7). Conclusions. This conceptualisation has significant implications for how DSPN - and in particular the primary symptom of pain - has been assessed to date. Self-report is the gold standard for the evaluation of pain, and the notion of pain as whatever the individual says it is, is repeatedly emphasised in the literature. The results of this study underscore the importance of self-report, however they also suggest that in practice approaches to date have fallen somewhat short of this ideal. Externally defined conceptualisations of DSPN are unlikely to be capable of capturing the range of symptoms associated with or attributed to DSPN by the individual. In applying these, the healthcare professional risks not only inadequate representation of experience, but potentially reinforces a conceptual gulf between the individual and their environment. Potential mechanisms for addressing this are already available, and have been explored in other pain states. Our findings support the application of such approaches to DSPN; and suggest a potential role for cognitive behavioural therapy in the management of this population.