McKernan Lindsey C, Bonnet Kemberlee R, Finn Michael T M, Williams David A, Bruehl Stephen, Reynolds W Stuart, Clauw Daniel, Dmochowski Roger R, Schlundt David G, Crofford Leslie J
Department of Psychiatry & Behavioral Sciences, Vanderbilt University School of Medicine.
Department of Physical Medicine & Rehabilitation, Vanderbilt University School of Medicine.
Can J Pain. 2020;4(1):181-198. doi: 10.1080/24740527.2020.1785854. Epub 2020 Sep 1.
Interstitial cystitis/bladder pain syndrome (IC/BPS) is a debilitating condition carrying substantial psychosocial burden. Psychological treatment for IC/BPS is little studied, and there are barriers to its use in clinical management. Whether psychological treatments benefit patients with IC/BPS is unclear and we do not know if such treatments would meet patient needs.
Incorporating patient-reported needs and acknowledging diversity in pain experiences can inform patient-centered interventions for IC/BPS. This project characterized the experience of living with IC/BPS and patient perceptions of needs in its treatment, with the goal of informing patient-centered treatment for IC/BPS.
Using both quantitative and qualitative methods, 27 females with IC/BPS participated in a focus group and completed validated self-report assessments evaluating urinary symptoms, pain, and emotional functioning. Focus groups were audio recorded and transcribed, then coded and analyzed using an iterative inductive/deductive approach. Linear regression models evaluated the relationship between psychological functioning and symptom severity.
We conducted six focus groups between 8/2017-12/2017. Five major themes emerged from qualitative analysis: managing physical symptoms, emotional symptoms, impact on daily life and socio-contextual factors, responding to illness, and addressing needs in treatment. The physiological and emotional consequences of IC/BPS were reported, highlighting their impact on interpersonal relationships and challenges obtaining appropriate treatment for IC/BPS. Quantitative analysis showed depression levels were significantly associated with worsened IC/BPS symptomology, after controlling for known confounding factors.
Individuals with IC/BPS could benefit from tailored psychological interventions focusing on pain management, emotion regulation, communications skills, along with sexual dysfunction and intimacy fears.
间质性膀胱炎/膀胱疼痛综合征（IC/BPS）是一种使人衰弱的疾病，带来了沉重的心理社会负担。针对IC/BPS的心理治疗研究较少，在临床管理中其应用存在障碍。IC/BPS患者是否能从心理治疗中获益尚不清楚，我们也不知道此类治疗是否能满足患者需求。
纳入患者报告的需求并认识到疼痛体验的多样性，可为以患者为中心的IC/BPS干预措施提供依据。本项目描述了IC/BPS患者的生活经历以及患者对其治疗需求的看法，目的是为以患者为中心的IC/BPS治疗提供依据。
采用定量和定性方法，27名IC/BPS女性患者参加了焦点小组，并完成了经过验证的自我报告评估，以评估泌尿症状、疼痛和情绪功能。焦点小组进行了录音和转录，然后采用迭代归纳/演绎方法进行编码和分析。线性回归模型评估了心理功能与症状严重程度之间的关系。
我们在2017年8月至2017年12月期间进行了6次焦点小组讨论。定性分析得出了五个主要主题：管理身体症状、情绪症状、对日常生活和社会背景因素的影响、应对疾病以及满足治疗需求。报告了IC/BPS的生理和情感后果，强调了它们对人际关系的影响以及获得IC/BPS适当治疗的挑战。在控制已知混杂因素后，定量分析表明抑郁水平与IC/BPS症状恶化显著相关。
IC/BPS患者可受益于量身定制的心理干预措施，这些措施侧重于疼痛管理、情绪调节、沟通技巧以及性功能障碍和亲密关系恐惧。
