Qualitative analysis of treatment needs in interstitial cystitis/bladder pain syndrome: Implications for intervention

Abstract

Background: 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 whether such treatments would meet patient needs. Aims: 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 patientcentered treatment for IC/BPS. Methods: 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 and then coded and analyzed using an iterative inductive/deductive approach. Linear regression models evaluated the relationship between psychological functioning and symptom severity. Results: We conducted six focus groups between August and December 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 in obtaining appropriate treatment for IC/BPS. Quantitative analysis showed that depression levels were significantly associated with worsened IC/BPS symptomology, after controlling for known confounding factors. Conclusion: 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. RÉSUMÉ Contexte: La cystite interstitielle / syndrome de la vessie douloureuse (CI / SVD) est une affection débilitante qui entraine un fardeau psychosocial important. Le traitement psychologique de la CI / SVD est peu étudié. De plus, il existe certains obstacles à son utilisation dans la prise en charge clinique. Il n'est pas clair si les traitements psychologiques sont bénéfiques pour les patients et nous ne savons pas si de tels traitements répondraient à leurs besoins. Objectifs: L'intégration des besoins exprimés par les patients et la reconnaissance de la diversité des expériences de la douleur peuvent éclairer les interventions centrées sur le patient pour la CI / SVD. Ce projet a caractérisé la vie avec la CI / SVD et les perceptions qu'a le patient de ses besoins pendant son traitement, dans le but d'éclairer le traitement de la CI / SVD centré sur le patient. Méthodes: En utilisant à la fois des méthodes quantitatives et qualitatives, 27 femmes atteintes de CI / SVD ont participé à un groupe de discussion et ont répondu ...

How do women with interstitial cystitis/bladder pain syndrome make treatment choices?

“…Future studies will be required to gain insight into the perspectives of a more diverse group of patients with more severe symptoms. Our sample size was small, and therefore may have differing demographics compared to the general population of patients with IC/BPS, but is comparable to prior focus group studies on urinary symptoms [ 15 , 17 ]. Additionally, our fifth focus group revealed that we had reached saturation of themes by the fourth focus group suggesting that additional focus groups would not have added to the themes identified.…”

“…Chen et al [ 16 ] described the frustrations of living with IC/BPS and reviewed some specific culturally based coping strategies, such as Chinese herbal supplements or drinking warm water. Other qualitative research described the psychological impact of IC/BPS and highlighted the need for mental health services in an integrated care model [ 17 ]. Although these studies described the experience of living with IC/BPS, there is a relative lack of data regarding how patients weigh various factors when choosing a treatment strategy.…”

Decision-making and improvements in health-related quality of life in patients with kidney stones: comparing surgery versus observation using a mixed methods analysis

“…(5) prevention methods; (6) barriers to maintaining positive change; and (7) symptom improvement. These kidney-stone specific questions were developed by collaboration between the co-authors and the Vanderbilt Qualitative research core, based on previous qualitative research experience, with an aim to stimulate open-ended discussion [17]. After setting the stage by inquiring about time of first kidney stone diagnosis, initial open-ended questions designed to elicit broad responses were posed.…”

Gender differences in the experience of interstitial cystitis/bladder pain syndrome

“…It is therefore important to understand how such interventions may need to be tailored according to gender-based needs. Our recent study exploring women's experience of IC/BPS found that symptom severity was significantly associated with depression and that there was a reciprocal relationship between psychosocial stress and symptom exacerbations ( 17 ). Key qualitative themes included the experience of invalidation from loved ones and healthcare providers, social withdrawal, isolation, and a perceived lack of control over symptoms ( 17 ).…”

“…Using qualitative analysis provides an in-depth assessment of patient experiences necessary to understand the impact and perceived needs in IC/BPS due to the limited existing research. We sought to highlight salient differences between genders informed by our previous qualitative assessment of women's experience of IC/BPS ( 17 ), by replicating methods and comparing findings by gender.…”