Managing and experiencing severe neuropathic pain after SCI: a qualitative study
1Widerstrom-Noga E, 1Anderson K, 1Cambridge J, 2Perez S, 2Martinez-Arizala A
1The Miami Project to Cure Paralysis, University of Miami, Miller School of Medicine, Miami, Florida, USA; 2Miami Veterans Administration Health Care System, Miami, Florida, USA
Objective: Few individuals with SCI achieve adequate pain relief despite using treatments that have shown efficacy in other neuropathic pain populations. Therefore, most people with SCI have to live with persistent neuropathic pain, often in the severe range. In order to overcome the barriers to more successful pain management, we need to develop treatment strategies that incorporate treatment preferences and beliefs and perceptions regarding barriers and facilitators to successful pain control. The present study focused on perceived barriers and facilitators to optimal pain control of severe neuropathic pain after SCI, i.e., the perspectives of the person with SCI and severe neuropathic pain, their significant others, and healthcare providers.
Design/Method: Each participant underwent face-to-face, semi-structured qualitative interviews with open-ended questions using interview guides with probes to ensure sufficient uniformity across the interviews. The interviews focused on the participants’ personal perceptions and experiences regarding the management of severe neuropathic pain after SCI. All interviews were digitally recorded and transcribed, data organized using ATLAS.TI software, and analyzed according to grounded theory.
Results: Some physicians who utilized a team approach including physical therapists, occupational therapists, nurse practitioners and psychologists. However, some physicians also encountered barriers related to limited insurance coverage for non-pharmacological and psychological treatments or other barriers related to prescription medication. In general, treatment responses to many of the available treatments were modest. “Pain is a much bigger problem then I think we all want to admit.” “This is pain that lasts forever, so you have to give them a forever medicine.” Both consumers and their significant others stated that treatments were often too focused on medications that were not very effective while they would like to have better access to non-pharmacological options (e.g. physical activity, massage or stretching). “I just don't believe in all this medication. It doesn't really seem to be helping;” "there's just absolutely no point in taking something that doesn't work." There were significant concerns voiced by both consumers and their significant others regarding addiction “I'd rather take an Advil any day than a Percocet,” and “when he start with the pills that's okay, but after two months, he needs more, and more and more,” adverse effects “the prescription medication side effects are worse than just coping with the pain on its own,” and the prospect of having to medicate long-term “I don't like taking that every day, every day;” “I would rather just, suffer through, you know, pain, than to deal with the symptoms of, uh, the medication that I'm taking. I feel like too much medication is not good medication sometimes.”
Conclusions: Optimal management of severe neuropathic pain after SCI is hampered by the lack of effective treatments with a favorable risk-benefit ratio including non-pharmacological treatment options.
Support: This research was supported by the US Department of Defense Grants SC110195/SC140052.
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