Urological chronic pelvic pain syndrome flares and their impact: qualitative analysis in the MAPP network.
Urological chronic pelvic pain syndrome flares and their impact: qualitative analysis in the MAPP network.
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泌尿科慢性盆腔疼痛综合征发作及其影响：MAPP 网络中的定性分析。
DOI：
10.1007/s00192-015-2652-6
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发表时间：
2015
影响因子：
1.8
通讯作者：
Mullins
中科院分区：
文献类型：
--
作者：
Sutcliffe,Siobhan;Bradley,CatherineS;Clemens,JamesQuentin;James,AimeeS;Konkle,KatyS;Kreder,KarlJ;Lai,HingHungHenry;Mackey,SeanC;Ashe-McNalley,CodyP;Rodriguez,LarissaV;Barrell,Edward;Hou,Xiaoling;Robinson,NancyA;Mullins
虽然深入的定性信息对于了解患者的症状经历和制定以患者为中心的结局措施至关重要，但之前只有一项定性研究评估了泌尿系统慢性盆腔疼痛综合征（UCPPS）症状恶化（“耀斑”）。方法我们对来自MAPP研究网络的4个站点的女性UCPPS（间质性膀胱炎/膀胱疼痛综合征）患者进行了8个焦点组（n= 57，平均= 7/组），以探讨发作的全谱及其对患者生活的影响。结果：尽管最常见的耀斑是持续数天的疼痛性耀斑，但在所涉及的UCPPS症状、并发的非盆腔症状（如腹泻）、症状强度（轻度至重度）、持续时间（分钟至年）和频率（每天至每年<一次）方面，耀斑的经历是常见的，差异很大。后一种耀斑对参与者的生活也是最具破坏性的，导致一些人取消社交活动，错过工作或上学，在最糟糕的情况下，他们去了急诊室或请了残疾假。参与者还报告了耀斑的长期影响，包括对性功能以及婚姻、家庭和社会关系的负面影响；以及失业、职业或教育发展受限。新出现的主题包括需要控制不可预测的症状和减少社会参与。鉴于其负面影响，未来的研究应侧重于预防耀斑的方法，并减少其频率，严重程度和/或持续时间。患者的生活质量也可以通过随时获得药物/治疗，使他们有一种控制症状的感觉，并与他们进行社交活动来改善。
Introduction and hypothesisAlthough in-depth qualitative information is critical to understanding patients’ symptom experiences and to developing patient-centered outcome measures, only one previous qualitative study has assessed urological chronic pelvic pain syndrome (UCPPS) symptom exacerbations (“flares”).MethodsWe conducted eight focus groups of female UCPPS (interstitial cystitis/bladder pain syndrome) patients at four sites from the MAPP Research Network (n= 57, mean = 7/group) to explore the full spectrum of flares and their impact on patients’ lives.ResultsFlare experiences were common and varied widely in terms of UCPPS symptoms involved, concurrent nonpelvic symptoms (e.g., diarrhea), symptom intensity (mild to severe), duration (minutes to years), and frequency (daily to < once/year), although the most commonly described flares were painful flares lasting days. These latter flares were also most disruptive to participants’ lives, causing some to cancel social events, miss work or school, and in the worst cases, go to the emergency room or on disability leave. Participants also reported a longer-term impact of flares, including negative effects on their sexual functioning and marital, family, and social relationships; and the loss of employment or limited career or educational advancement. Emerging themes included the need for a sense of control over unpredictable symptoms and reduced social engagement.ConclusionsGiven their negative impact, future research should focus on approaches to prevent flares, and to reduce their frequency, severity, and/or duration. Patients’ quality of life may also be improved by providing them with a sense of control over their symptoms through ready access to flare medications/therapy, and by engaging them socially.