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PURPOSE: The aims of this study were to explore (1) the considerations of people with spinal cord injury (SCI) in choosing to use non-pharmacological treatments (N-PTs) for neuropathic pain (NP), (2) which factors influence their decision and who is involved in this choice. MATERIALS AND METHODS: Eleven individuals with SCI and NP were interviewed. Interviews were transcribed verbatim, transcripts were analysed through thematic coding, following an inductive content analysis approach. RESULTS: A journey towards finding and choosing N-PTs emerged. Key phases in this journey were: motives, strategy and practical considerations. Pain and its impact on their life led participants to consider N-PTs. Motives were participants' negative attitudes towards regular medication, willingness to try everything and disappointment and frustration with the guidance from their health care provider (HCP). The search strategies often involved third parties and the internet. This led them to choose a specific N-PT. The journey was influenced by one's attitude, previous personal experience, experience of HCPs, financial considerations, availability and convenience of the treatment. CONCLUSIONS: The journey individuals with SCI and NP go through to find N-PTs to manage pain is difficult and often lonely. Findings highlight the importance of HCPs accompanying people with SCI in finding N-PTs.
People with spinal cord injury (SCI) often search for non-pharmacological treatments to treat their neuropathic pain.As people with SCI feel alone in their search, health care providers need to accompany them in seeking non-pharmacological treatments to try and alleviate their neuropathic pain.Influencing factors on this search are one's attitude, previous personal experience, experience of the health care provider, financial considerations, availability and convenience of the treatment.Awareness on these influencing factors is important to accompany people with SCI in their search.
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BACKGROUND: Patient Reported Outcomes Measures (PROMs) are being used increasingly to measure health problems in stroke clinical practice. However, the implementation of these PROMs in routine stroke care is still in its infancy. To understand the value of PROMs used in ischemic stroke care, we explored the patients' experience with PROMs and with the consultation at routine post-discharge follow-up after stroke. METHODS: In this prospective mixed methods study, patients with ischemic stroke completed an evaluation questionnaire about the use of PROMs and about their consultation in two Dutch hospitals. Additionally, telephone interviews were held to gain in-depth information about their experience with PROMs. RESULTS: In total, 63 patients completed the evaluation questionnaire of which 10 patients were also interviewed. Most patients (82.2-96.6%) found completing the PROMs to be feasible and relevant. Half the patients (49.2-51.6%) considered the PROMs useful for the consultation and most patients (87.3-96.8%) reported the consultation as a positive experience. Completing the PROMs provided 51.6% of the patients with insight into their stroke-related problems. Almost 75% of the patients found the PROMs useful in giving the healthcare provider greater insight, and 60% reported discussing the PROM results during the consultation. Interviewed patients reported the added value of PROMs, particularly when arranging further care, in gaining a broader insight into the problems, and in ensuring all important topics were discussed during the consultation. CONCLUSIONS: Completing PROMs appears to be feasible for patients with stroke attending post-discharge consultation; the vast majority of patients experienced added value for themselves or the healthcare provider. We recommend that healthcare providers discuss the PROM results with their patients to improve the value of PROMs for the patient. This could also improve the willingness to complete PROMs in the future.