A qualitative study of the experience and impact of neuropathic pain in people living with HIV

Whitney Scott, Maite Garcia Calderon Mendoza Del Solar, Harriet Kemp, Lance M McCracken, Amanda C de C Williams, Andrew S C Rice, Whitney Scott, Maite Garcia Calderon Mendoza Del Solar, Harriet Kemp, Lance M McCracken, Amanda C de C Williams, Andrew S C Rice

Abstract

Painful distal symmetrical polyneuropathy is common in HIV and is associated with reduced quality of life. Research has not explored the experience of neuropathic pain in people with HIV from a person-centred perspective. Therefore, a qualitative interview study was conducted to more deeply understand the experience and impact of neuropathic pain in this population. Semistructured interviews were conducted with 26 people with HIV and peripheral neuropathic pain symptoms. Interviews explored the impact of pain and participants' pain management strategies. Interviews were transcribed verbatim and analysed using thematic analysis. Four themes and 11 subthemes were identified. Theme 1 reflects the complex characterisation of neuropathic pain, including the perceived unusual nature of this pain and diagnostic uncertainty. Theme 2 centred on the interconnected impacts of pain on mood and functioning and includes how pain disrupts relationships and threatens social inclusion. Theme 3 reflects the struggle for pain relief, including participants' attempts to "exhaust all options" and limited success in finding lasting relief. The final theme describes how pain management is complicated by living with HIV; this theme includes the influence of HIV stigma on pain communication and pain as an unwanted reminder of HIV. These data support the relevance of investigating and targeting psychosocial factors to manage neuropathic pain in HIV.

Conflict of interest statement

A.S.C. Rice undertakes consultancy and advisory board work for Imperial College Consultants. In the past 24 months, this has included remunerated work for: Pharmanovo, Galapagos, Toray, Quartet, Lateral, Novartis, Pharmaleads, Mundipharma, Orion, Asahi Kasei, and Theranexis, outside the submitted work. A.S.C. Rice was the owner of share options in Spinifex Pharmaceuticals from which personal benefit accrued upon the acquisition of Spinifex by Novartis in July 2015. In addition, Professor Rice has the following patents pending: Rice ASC, Vandevoorde S, and Lambert DM Methods using N-(2-propenyl)hexadecanamide and related amides to relieve pain WO 2005/079771, and Okuse et al. Methods of treating pain by inhibition of vgf activity EP13702262.0/WO2013 110945. The remaining authors have no conflicts of interest to declare.

Sponsorships or competing interests that may be relevant to content are disclosed at the end of this article.

Figures

Figure 1.
Figure 1.
Summary of themes, subthemes, and their inter-relationships.

References

    1. Anderson KO, Green CR, Payne R. Racial and ethnic disparities in pain: causes and consequences of unequal care. J Pain 2009;10:1187–204.
    1. Boerner KE, Chambers CT, Gahagan J, Keogh E, Fillingim RB, Mogil JS. Conceptual complexity of gender and its relevance to pain. PAIN 2018;159:2137–41.
    1. Boersma K, Linton S, Overmeer T, Jansson M, Vlaeyen J, de Jong J. Lowering fear-avoidance and enhancing function through exposure in vivo: a multiple baseline study across six patients with back pain. PAIN 2004;108:8–16.
    1. Bouhassira D, Attal N, Alchaar H, Boureau F, Brochet B, Bruxelle J, Cunin G, Fermanian J, Ginies P, Grun-Overdyking A. Comparison of pain syndromes associated with nervous or somatic lesions and development of a new neuropathic pain diagnostic questionnaire (DN4). PAIN 2005;114:29–36.
    1. Bouhassira D, Lantéri-Minet M, Attal N, Laurent B, Touboul C. Prevalence of chronic pain with neuropathic characteristics in the general population. PAIN 2008;136:380–7.
    1. Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol 2006;3:77–101.
    1. Bruce D, Hunter M, Peters K, Davis T, Davis W. Fear of falling is common in patients with type 2 diabetes and is associated with increased risk of falls. Age Ageing 2015;44:687–90.
    1. Bruckenthal P, Reid MC, Reisner L. Special issues in the management of chronic pain in older adults. Pain Med 2009;10:S67–78.
    1. Campbell LC, Robinson K, Meghani SH, Vallerand A, Schatman M, Sonty N. Challenges and opportunities in pain management disparities research: implications for clinical practice, advocacy, and policy. J Pain 2012;13:611–9.
    1. Cherry CL, Wesselingh SL, Lal L, McArthur JC. Evaluation of a clinical screening tool for HIV-associated sensory neuropathies. Neurology 2005;65:1778–81.
    1. Cleeland C, Ryan K. Pain assessment: global use of the Brief Pain Inventory. Ann Acad Med 1994;23:129–38.
    1. Clifford DB, Simpson DM, Brown S, Moyle G, Brew BJ, Conway B, Tobias JK, Vanhove GF. A randomized, double-blind, controlled study of NGX-4010, a capsaicin 8% dermal patch, for the treatment of painful HIV-associated distal sensory polyneuropathy. JAIDS 2012;59:126–33.
    1. Crawford B, Bouhassira D, Wong A, Dukes E. Conceptual adequacy of the neuropathic pain symptom inventory in six countries. Health Qual Life Outcomes 2008;6:62–9.
    1. De Ruddere L, Craig KD. Understanding stigma and chronic pain: a state of the art review. PAIN 2016;157:1607–10.
    1. Dinat N, Marinda E, Moch S, Rice AS, Kamerman PR. Randomized, double-blind, crossover trial of amitriptyline for analgesia in painful HIV-associated sensory neuropathy. PLoS One 2015;10:e0126297.
    1. Dueñas M, Ojeda B, Salazar A, Mico JA, Failde I. A review of chronic pain impact on patients, their social environment and the health care system. J Pain Res 2016;9:457–67.
    1. Edmond SN, Keefe FJ. Validating pain communication: current state of the science. PAIN 2015;156:215–9.
    1. Ellis RJ, Rosario D, Clifford DB, McArthur JC, Simpson D, Alexander T, Gelman BB, Vaida F, Collier A, Marra CM. Continued high prevalence and adverse clinical impact of human immunodeficiency virus–associated sensory neuropathy in the era of combination antiretroviral therapy: the CHARTER Study. Arch Neurol 2010;67:552–8.
    1. Evans S, Fishman B, Spielman L, Haley A. Randomized trial of cognitive behavior therapy versus supportive psychotherapy for HIV-related peripheral neuropathic pain. Psychosomatics 2003;44:44–50.
    1. Finan PH, Goodin BR, Smith MT. The association of sleep and pain: an update and a path forward. J Pain 2013;14:1539–52.
    1. Finnerup NB, Attal N, Haroutounian S, McNicol E, Baron R, Dworkin RH, Gilron I, Haanpää M, Hansson P, Jensen TS. Pharmacotherapy for neuropathic pain in adults: a systematic review and meta-analysis. Lancet Neurol 2015;14:162–73.
    1. Finnerup NB, Haroutounian S, Kamerman P, Baron R, Bennett DL, Bouhassira D, Cruccu G, Freeman R, Hansson P, Nurmikko T. Neuropathic pain: an updated grading system for research and clinical practice. PAIN 2016;157:1599.
    1. Francis JJ, Johnston M, Robertson C, Glidewell L, Entwistle V, Eccles MP, Grimshaw JM. What is an adequate sample size? Operationalising data saturation for theory-based interview studies. Psychol Health 2010;25:1229–45.
    1. Geelen C, Smeets R, Schmitz S, van den Bergh J, Goossens M, Verbunt J. Anxiety affects disability and quality of life in patients with painful diabetic neuropathy. Eur J Pain 2017;21:1632–41.
    1. Goubert L, Trompetter H. Towards a science and practice of resilience in the face of pain. Eur J Pain 2017;21:1301–15.
    1. Guest G, Bunce A, Johnson L. How many interviews are enough? An experiment with data saturation and variability. Field Methods 2006;18:59–82.
    1. Haroun OMO, Vollert J, Lockwood DN, Bennett DLH, Pai VV, Shetty V, Wakade AV, Khodke AS, Schilder A, Pfau D, Enax-Krumova EK, Maier C, Treede RD, Rice ASC. Clinical characteristics of neuropathic pain in leprosy and associated somatosensory profiles: a deep phenotyping study in India. Pain Rep 2019;4:e743.
    1. Hayes SC, Pistorello J, Levin ME. Acceptance and Commitment Therapy as a unified model of behavior change. Couns Psychol 2012;40:976–1002.
    1. Kamerman PR, Moss PJ, Weber J, Wallace VC, Rice AS, Huang W. Pathogenesis of HIV‐associated sensory neuropathy: evidence from in vivo and in vitro experimental models. J Periph Nervous Syst 2012;17:19–31.
    1. Kroenke K, Spitzer RL, Williams JB. The PHQ‐9. J Gen Int Med 2001;16:606–13.
    1. Lalli P, Chan A, Garven A, Midha N, Chan C, Brady S, Block E, Hu B, Toth C. Increased gait variability in diabetes mellitus patients with neuropathic pain. J Diabetes Complications 2013;27:248–54.
    1. Langebeek N, Gisolf EH, Reiss P, Vervoort SC, Hafsteinsdóttir TB, Richter C, Sprangers MA, Nieuwkerk PT. Predictors and correlates of adherence to combination antiretroviral therapy (ART) for chronic HIV infection: a meta-analysis. BMC Med 2014;12:142–53.
    1. Li ATW, Fung KPL, Maticka-Tyndale E, Wong JPH. Effects of HIV stigma reduction interventions in diasporic communities: insights from the CHAMP Study. AIDS Care 2018;30:739–45.
    1. Linton SJ. Intricacies of good communication in the context of pain: does validation reinforce disclosure? PAIN 2015;156:199–200.
    1. Mahajan AP, Sayles JN, Patel VA, Remien RH, Ortiz D, Szekeres G, Coates TJ. Stigma in the HIV/AIDS epidemic: a review of the literature and recommendations for the way forward. AIDS 2008;22:S67.
    1. Mahungu TW, Rodger AJ, Johnson MA. HIV as a chronic disease. Clin Med 2009;9:125–8.
    1. Marzolini C, Back D, Weber R, Furrer H, Cavassini M, Calmy A, Vernazza P, Bernasconi E, Khoo S, Battegay M. Ageing with HIV: medication use and risk for potential drug–drug interactions. J Antimicrob Chemother 2011;66:2107–11.
    1. McCracken LM, Vowles KE. Acceptance and Commitment Therapy and mindfulness for chronic pain: model, process, and progress. Amer Psychol 2014;69:178–87.
    1. Meghani SH, Byun E, Gallagher RM. Time to take stock: a meta-analysis and systematic review of analgesic treatment disparities for pain in the United States. Pain Med 2012;13:150–74.
    1. Merlin JS, Walcott M, Ritchie C, Herbey I, Kertesz SG, Chamot E, Saag M, Turan JM. “Two pains together”: patient perspectives on psychological aspects of chronic pain while living with HIV. PLoS One 2014;9:e111765.
    1. NAT. HIV in the UK statistics—2017. Available at: . Accessed July 10, 2019.
    1. Parker R, Jelsma J, Stein DJ. The development of an intervention to manage pain in amaxhosa women living HIV/AIDS. S Afr J Physiother 2014;70:13–7.
    1. Parker R, Stein DJ, Jelsma J. Pain in people living with HIV/AIDS: a systematic review. JIAS 2014;17:18719.
    1. Penrod J, Preston DB, Cain RE, Starks MT. A discussion of chain referral as a method of sampling hard-to-reach populations. J Transcultural Nurs 2003;14:100–7.
    1. Perry BA, Westfall AO, Molony E, Tucker R, Ritchie C, Saag MS, Mugavero MJ, Merlin JS. Characteristics of an ambulatory palliative care clinic for HIV-infected patients. J Palliat Med 2013;16:934–7.
    1. Phillips TJ, Cherry CL, Cox S, Marshall SJ, Rice AS. Pharmacological treatment of painful HIV-associated sensory neuropathy: a systematic review and meta-analysis of randomised controlled trials. PLoS One 2010;5:e14433.
    1. Phillips TJ, Brown M, Ramirez JD, Perkins J, Woldeamanuel YW, Williams ACdC, Orengo C, Bennett DL, Bodi I, Cox S, Maier C, Krumova EK, Rice AS. Sensory, psychological, and metabolic dysfunction in HIV-associated peripheral neuropathy: a cross-sectional deep profiling study. PAIN 2014;155:1846–60.
    1. Pillay P, Wadley AL, Cherry CL, Karstaedt AS, Kamerman PR. Psychological factors associated with painful versus non-painful HIV-associated sensory neuropathy. AIDS Behav 2018;22:1584–95.
    1. Pincus T, Noel M, Jordan A, Serbic D. Perceived diagnostic uncertainty in pediatric chronic pain. PAIN 2018;159:1198–201.
    1. Rudd RA. Increases in drug and opioid-involved overdose deaths—United States, 2010–2015. MMWR Morb Mortal Wkly Rep 2016;65:1445–52.
    1. Sabin CA, Harding R, Bagkeris E, Nkhoma K, Post FA, Sachikonye M, Boffito M, Anderson J, Mallon PW, Williams I. Pain in people living with HIV and its association with healthcare resource use, well being and functional status. AIDS 2018;32:2697–706.
    1. Samji H, Cescon A, Hogg RS, Modur SP, Althoff KN, Buchacz K, Burchell AN, Cohen M, Gebo KA, Gill MJ. Closing the gap: increases in life expectancy among treated HIV-positive individuals in the United States and Canada. PLoS One 2013;8:e81355.
    1. Saunders B, Sim J, Kingstone T, Baker S, Waterfield J, Bartlam B, Burroughs H, Jinks C. Saturation in qualitative research: exploring its conceptualization and operationalization. Qual Quant 2018;52:1893–907.
    1. Scott W, Daly A, Yu L, McCracken LM. Treatment of chronic pain for adults 65 and over: analyses of outcomes and changes in psychological flexibility following interdisciplinary acceptance and commitment therapy (ACT). Pain Med 2017;18:252–64.
    1. Scott W, Arkuter C, Kioskli K, Kemp H, McCracken LM, Rice A, Williams A. Psychosocial factors associated with persistent pain in people with HIV: a systematic review with meta-analysis. PAIN 2018;159:2461–76.
    1. Scott W, Yu L, Patel S, McCracken LM. Measuring stigma in chronic pain: preliminary investigation of instrument psychometrics, correlates, and magnitude of change in a prospective cohort attending interdisciplinary treatment. J Pain 2019;20:1164–75.
    1. Selman L, Simms V, Penfold S, Powell RA, Mwangi-Powell F, Downing J, Gikaara N, Munene G, Higginson IJ, Harding R. “My dreams are shuttered down and it hurts lots”—a qualitative study of palliative care needs and their management by HIV outpatient services in Kenya and Uganda. BMC Palliat Care 2013;12:35.
    1. Shaikh A, Bentley A, Kamerman PR. Symptomatology of peripheral neuropathy in an African language. PLoS One 2013;8:e63986.
    1. Simpson DM, Rice AS, Emir B, Landen J, Semel D, Chew ML, Sporn J. A randomized, double-blind, placebo-controlled trial and open-label extension study to evaluate the efficacy and safety of pregabalin in the treatment of neuropathic pain associated with human immunodeficiency virus neuropathy. PAIN 2014;155:1943–54.
    1. Skinta MD, Lezama M, Wells G, Dilley JW. Acceptance and compassion-based group therapy to reduce HIV stigma. Cog Behav Pract 2015;22:481–90.
    1. Sullivan MD, Howe CQ. Opioid therapy for chronic pain in the United States: promises and perils. PAIN 2013;154:S94–S100.
    1. Taylor B, Carswell K, Williams ACdC. The interaction of persistent pain and post-traumatic re-experiencing: a qualitative study in torture survivors. J Pain Symptom Manage 2013;46:546–55.
    1. Thompson MA, Mugavero MJ, Amico KR, Cargill VA, Chang LW, Gross R, Orrell C, Altice FL, Bangsberg DR, Bartlett JG. Guidelines for improving entry into and retention in care and antiretroviral adherence for persons with HIV: evidence-based recommendations from an International Association of Physicians in AIDS Care panel. Ann Int Med 2012;156:817–33.
    1. Torrance N, Smith BH, Bennett MI, Lee AJ. The epidemiology of chronic pain of predominantly neuropathic origin: results from a general population survey. J Pain 2006;7:281–9.
    1. Turk DC, Dworkin RH, Allen RR, Bellamy N, Brandenburg N, Carr DB, Cleeland C, Dionne R, Farrar JT, Galer BS. Core outcome domains for chronic pain clinical trials: IMMPACT recommendations. PAIN 2003;106:337–45.
    1. Uebelacker LA, Weisberg RB, Herman DS, Bailey GL, Pinkston-Camp MM, Garnaat SL, Stein MD. Pilot randomized trial of collaborative behavioral treatment for chronic pain and depression in persons living with HIV/AIDS. AIDS Behav 2016;20:1675–81.
    1. van Sighem A, Gras L, Reiss P, Brinkman K, de Wolf F. Life expectancy of recently diagnosed asymptomatic HIV-infected patients approaches that of uninfected individuals. AIDS 2010;24:1527–35.
    1. Veehof M, Trompetter H, Bohlmeijer E, Schreurs K. Acceptance-and mindfulness-based interventions for the treatment of chronic pain: a meta-analytic review. Cog Behav Ther 2016;45:5–31.
    1. Vitiello MV, Rybarczyk B, Von Korff M, Stepanski EJ. Cognitive behavioral therapy for insomnia improves sleep and decreases pain in older adults with co-morbid insomnia and osteoarthritis. J Clin Sleep Med 2009;5:355–62.
    1. Vlaeyen JWS, Linton SJ. Fear-avoidance model of chronic musculoskeletal pain: 12 years on. PAIN 2012;153:1144–7.
    1. Von Korff M, Ormel J, Keefe FJ, Dworkin SF. Grading the severity of chronic pain. PAIN 1992;50:133–49.
    1. Wadley AL, Cherry CL, Price P, Kamerman PR. HIV neuropathy risk factors and symptom characterization in stavudine-exposed South Africans. J Pain Symptom Manage 2011;41:700–6.
    1. Wadley AL, Mitchell D, Kamerman PR. Resilience does not explain the dissociation between chronic pain and physical activity in South Africans living with HIV. PeerJ 2016;4:E2464.
    1. Wadley AL, Pincus T, Evangeli M. A preliminary analysis of the association between perceived stigma and HIV-related pain. Afr J Prim Health Care Fam Med 2019;11:e1–5.
    1. Williams A, Eccleston C, Morley S. Psychological therapies for the management of chronic pain (excluding headache) in adults. Cochrane Database Syst Rev 2012:CD007407.
    1. Woldeamanuel YW, Kamerman PR, Veliotes DG, Phillips TJ, Asboe D, Boffito M, Rice AS. Development, validation, and field-testing of an instrument for clinical assessment of HIV-associated neuropathy and neuropathic pain in resource-restricted and large population study settings. PLoS One 2016;11:e0164994.
    1. Zelman DC, Dukes E, Brandenburg N, Bostrom A, Gore M. Identification of cut-points for mild, moderate and severe pain due to diabetic peripheral neuropathy. PAIN 2005;115:29–36.
    1. Zelman DC, Gore M, Dukes E, Tai KS, Brandenburg N. Validation of a modified version of the Brief Pain Inventory for painful diabetic peripheral neuropathy. J Pain Symptom Manage 2005;29:401–10.

Source: PubMed

3
Předplatit