Schemer Lea, Hess Courtney W, Van Orden Amanda R, Birnie Kathryn A, Harrison Lauren E, Glombiewski Julia A, Simons Laura E
Department of Clinical Psychology and Psychotherapy, University of Kaiserslautern-Landau, Landau, Germany.
Department of Anesthesiology, Perioperative, and Pain Medicine, Stanford University School of Medicine, Palo Alto, CA, United States.
J Particip Med. 2023 Mar 9;15:e41292. doi: 10.2196/41292.
Increasing the access to and improving the impact of pain treatments is of utmost importance, especially among youths with chronic pain. The engagement of patients as research partners (in contrast to research participants) provides valuable expertise to collaboratively improve treatment delivery.
This study looked at a multidisciplinary exposure treatment for youths with chronic pain through the lens of patients and caregivers with the aim to explore and validate treatment change processes, prioritize and develop ideas for improvement, and identify particularly helpful treatment elements.
Qualitative exit interviews were conducted with patients and caregivers at their discharge from 2 clinical trials (ClinicalTrials.gov NCT01974791 and NCT03699007). Six independent co-design meetings were held with patients and caregivers as research partners to establish a consensus within and between groups. The results were validated in a wrap-up meeting.
Patients and caregivers described that exposure treatment helped them better process pain-related emotions, feel empowered, and improve their relationship with each other. The research partners developed and agreed upon 12 ideas for improvement. Major recommendations include that pain exposure treatment should be disseminated more not only among patients and caregivers but also among primary care providers and the general public to facilitate an early referral for treatment. Exposure treatment should allow flexibility in terms of duration, frequency, and delivery mode. The research partners prioritized 13 helpful treatment elements. Most of the research partners agreed that future exposure treatments should continue to empower patients to choose meaningful exposure activities, break long-term goals into smaller steps, and discuss realistic expectations at discharge.
The results of this study have the potential to contribute to the refinement of pain treatments more broadly. At their core, they suggest that pain treatments should be disseminated more, flexible, and transparent.
增加疼痛治疗的可及性并提高其效果至关重要,尤其是在患有慢性疼痛的青少年中。让患者作为研究伙伴(与研究参与者相对)参与进来,可为共同改善治疗提供有价值的专业知识。
本研究从患者和照料者的角度审视针对患有慢性疼痛青少年的多学科暴露疗法,旨在探索和验证治疗变化过程,确定改进的优先事项并提出改进想法,以及识别特别有帮助的治疗要素。
在2项临床试验(ClinicalTrials.gov NCT01974791和NCT03699007)结束时,对患者和照料者进行了定性出院访谈。与患者和照料者作为研究伙伴举行了6次独立的联合设计会议,以在组内和组间达成共识。结果在总结会议中得到验证。
患者和照料者表示,暴露疗法帮助他们更好地处理与疼痛相关的情绪,感到有力量,并改善了彼此之间的关系。研究伙伴们提出并商定了12条改进意见。主要建议包括,疼痛暴露疗法不仅应在患者和照料者中更广泛地传播,还应在初级保健提供者和公众中传播,以促进早期转诊治疗。暴露疗法应在持续时间、频率和实施方式方面具有灵活性。研究伙伴们确定了13个有帮助的治疗要素的优先顺序。大多数研究伙伴一致认为,未来的暴露疗法应继续让患者有能力选择有意义的暴露活动,将长期目标分解为较小的步骤,并在出院时讨论现实的期望。
本研究结果有可能更广泛地促进疼痛治疗的完善。其核心表明,疼痛治疗应传播得更广、更灵活且更透明。