Breckons M, Bissett S M, Exley C, Araujo-Soares V, Durham J
Institute of Health and Society, Newcastle University, Newcastle upon Tyne, UK.
Centre for Oral Health Research, School of Dental Sciences, Newcastle University, UK.
JDR Clin Trans Res. 2017 Jan;2(1):48-57. doi: 10.1177/2380084416679648. Epub 2016 Nov 16.
Persistent orofacial pain is relatively common and known to have an adverse effect on quality of life. Previous studies suggest that the current care pathway may be problematic, but it is not well understood which health services patients access and what their experience is. The aim of this study was to explore care pathways and their impact from the perspective of patients. Qualitative interviews were conducted with a maximum variation sample of patients recruited from primary (community based) and secondary (specialist hospital based) care in the United Kingdom. Questions focused on the stages in their pathway and the impact of the care that they had received. Interviews were digitally recorded and transcribed verbatim, and analysis followed principles of the constant comparative method. NVivo 10 was used to help organize and analyze data. Twenty-two patients were interviewed at baseline, and 18 took part in a second interview at 12 mo. Three main themes emerged from the data: the "fluidity of the care pathway," in which patients described moving among health care providers in attempts to have their pain diagnosed and managed, occurring alongside a "failure to progress," where despite multiple appointments, patients described frustration at delays in obtaining a diagnosis and effective treatment for their pain. Throughout their care pathways, patients described the "effects of unmanaged pain," where the longer the pain went unmanaged, the greater its potential to negatively affect their lives. Findings of this study suggest that the current care pathway is inefficient and fails to meet patient needs. Future work needs to focus on working with stakeholder groups to redesign patient-centered care pathways. Data from qualitative interviews conducted with patients with persistent orofacial pain suggest significant problems with the existing care pathway, consisting of delays to diagnosis, treatment, and referral. Patients describing their struggle to progress through the current care pathway highlighted the difficulties occurring while living with orofacial pain. This study suggests a need for a revised care pathway, which better meets the needs of people with persistent orofacial pain.
持续性口面部疼痛相对常见，且已知会对生活质量产生不利影响。先前的研究表明，当前的护理路径可能存在问题，但对于患者使用了哪些医疗服务以及他们的体验如何，人们还了解得不够透彻。本研究的目的是从患者的角度探索护理路径及其影响。对从英国初级（社区）护理和二级（专科医院）护理机构招募的具有最大差异样本的患者进行了定性访谈。问题集中在他们护理路径的各个阶段以及所接受护理的影响。访谈进行了数字录音并逐字转录，分析遵循持续比较法的原则。使用NVivo 10来帮助组织和分析数据。22名患者在基线时接受了访谈，18名患者在12个月时参加了第二次访谈。数据中出现了三个主要主题：“护理路径的流动性”，患者描述在医疗服务提供者之间辗转，试图诊断和管理自己的疼痛，同时伴随着“进展不顺”，尽管进行了多次预约，但患者表示在获得疼痛诊断和有效治疗方面的延迟让他们感到沮丧。在整个护理路径中，患者描述了“疼痛未得到管理的影响”，即疼痛未得到管理的时间越长，对他们生活产生负面影响的可能性就越大。本研究结果表明，当前的护理路径效率低下，无法满足患者需求。未来的工作需要专注于与利益相关者团体合作，重新设计以患者为中心的护理路径。对持续性口面部疼痛患者进行定性访谈的数据表明，现有护理路径存在重大问题，包括诊断、治疗和转诊的延迟。患者描述了他们在当前护理路径中艰难前行的经历，突出了口面部疼痛患者在生活中遇到的困难。本研究表明需要修订护理路径，以更好地满足持续性口面部疼痛患者的需求。
