TY - JOUR
T1 - Quality of Life and Treatment Modalities in Patients with Interstitial Cystitis
T2 - The Patients' Perspective
AU - Ginkel, Charlotte van
AU - Martens, Frank
AU - Scholtes, Mathilde
AU - Heesakkers, John
AU - Janssen, Dick A W
PY - 2024/2/13
Y1 - 2024/2/13
N2 - BACKGROUND: Quality of life (QoL)-based outcomes are hardly incorporated into interstitial cystitis/bladder pain syndrome (IC/BPS) guidelines, because studies are limited and outdated. Therefore, guidelines might not reflect the current clinical situation accurately. Secondly, guidelines suggest using a multimodal approach for BPS/IC management, but data on the patient-perceived efficacy of these therapies are limited. The aim of this study is to investigate the perception of IC/BPS patients of their QoL, to determine which treatments they have received, and to examine how they evaluate the efficacy of these various (alternative) therapies. METHODS: A quantitative retrospective database evaluation was performed, with data from an existing IC/BPS patient survey ( = 217) that was conducted in 2021. This survey contained QoL data based on validated questionnaires such as EQ-5D 5L. RESULTS: The QoL of patients is affected significantly by IC/BPS. This is evident from the various affected domains on the EQ-5D 5L. The symptom severity was negatively affected by a delay in diagnosis, and there were clear differences in QoL domains between females and males. Secondly, coagulation therapy and intravesical glycosaminoglycan (GAG) therapy were most appreciated by patients. Other (alternative) treatments were commonly utilized, although some had doubtful results and high discontinuation rates. CONCLUSION: QoL is considerably impaired in IC/BPS patients. The diverse responses and adherence to various treatments warrant a personalized approach (phenotype-oriented therapy). To achieve QoL improvement, it is important to incorporate the patient's perspective in treatment guidelines.
AB - BACKGROUND: Quality of life (QoL)-based outcomes are hardly incorporated into interstitial cystitis/bladder pain syndrome (IC/BPS) guidelines, because studies are limited and outdated. Therefore, guidelines might not reflect the current clinical situation accurately. Secondly, guidelines suggest using a multimodal approach for BPS/IC management, but data on the patient-perceived efficacy of these therapies are limited. The aim of this study is to investigate the perception of IC/BPS patients of their QoL, to determine which treatments they have received, and to examine how they evaluate the efficacy of these various (alternative) therapies. METHODS: A quantitative retrospective database evaluation was performed, with data from an existing IC/BPS patient survey ( = 217) that was conducted in 2021. This survey contained QoL data based on validated questionnaires such as EQ-5D 5L. RESULTS: The QoL of patients is affected significantly by IC/BPS. This is evident from the various affected domains on the EQ-5D 5L. The symptom severity was negatively affected by a delay in diagnosis, and there were clear differences in QoL domains between females and males. Secondly, coagulation therapy and intravesical glycosaminoglycan (GAG) therapy were most appreciated by patients. Other (alternative) treatments were commonly utilized, although some had doubtful results and high discontinuation rates. CONCLUSION: QoL is considerably impaired in IC/BPS patients. The diverse responses and adherence to various treatments warrant a personalized approach (phenotype-oriented therapy). To achieve QoL improvement, it is important to incorporate the patient's perspective in treatment guidelines.
KW - bladder pain syndrome
KW - interstitial cystitis
KW - lifestyle
KW - quality of life
KW - therapies
U2 - 10.3390/healthcare12040466
DO - 10.3390/healthcare12040466
M3 - Article
SN - 2227-9032
VL - 12
JO - Healthcare
JF - Healthcare
IS - 4
M1 - 466
ER -