Knowledge and attitude for overactive bladder care among women: development and measurement

Knowledge and attitude for overactive bladder care among women: development and measurement Background: Overactive bladder (OAB) affects millions of women. It is important to assess knowledge and attitude in affected patients. The study objective was to develop surveys to assess OAB knowledge and OAB related attitude, and its association with OAB treatment status. Methods: Systematic literature review and qualitative analysis of patient and provider focus groups helped identify OAB knowledge and attitude survey items. We determined psychometric properties of the two surveys in a cross- sectional sample of 104 women, 27% of whom had received OAB treatment. Results: The OAB-knowledge survey consisted of 16 items and 3 condition-related concepts: perception of OAB; cause and information; and signs of OAB. The OAB-attitude survey consisted of 16 items and its concepts were treatment seeking; decision-making and effects. Both surveys demonstrated good construct validity and test-retest reliability ((≥ 0.60). In the cross-sectional validation sample, OAB-knowledge and attitude discriminated between those with different levels of ICIQ-UI scores. We observed some difference in the OAB knowledge, OAB attitude, and severity of symptoms between those treated for OAB vs. treatment naive. Conclusions: OAB knowledge and attitude surveys provide a novel tool to assess OAB domains in women. Though we did not find statistical significance in OAB knowledge and attitude scores across treatment status, they may be potentially modifiable factors that affect OAB treatment uptake and treatment compliance. Refinement of these surveys in diverse sub-populations is necessary. Our study provides effect sizes for OAB knowledge and attitude. These effect sizes can help development of fully powered trials to study the association between OAB knowledge and attitude, type and length of treatment, treatment compliance, and quality of life, leading to interventions for enhancing OAB care. Keywords: Overactive bladder, Women, Knowledge and attitude, Treatment uptake Background economic consequences [1–3], OAB affects nearly 17% A common health concern for men and women of all of women in the US. Prevalence of OAB increases with ages, overactive bladder (OAB) is defined by the Inter- age and among women aged 65 and older, the preva- national Continence Society as urgency, with or without lence of OAB is approximately 30% [2–5]. urge urinary incontinence (UI), frequently accompanied The symptoms of OAB can have negative effects on with frequency and nocturia in the absence of proven in- quality of life and necessitate lifestyle changes [6–9]. fection or other obvious pathology [1]. An embarrassing The National Overactive Bladder Evaluation (NOBLE) and debilitating condition with substantial health and Program data showed that OAB with or without urgency urinary incontinence was associated with significantly lower quality of life and quality of sleep, and higher de- * Correspondence: rasu@mail.med.upenn.edu pression, compared to controls [2]. Total cost related to Department of Psychiatry, Perelman School of Medicine, University of Pennsylvania, 3535 Market St., Suite 4051, Philadelphia, PA 19104, USA OAB in the US was more than $12 billion in 2000 using Full list of author information is available at the end of the article © The Author(s). 2018 Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated. Chhatre et al. BMC Urology (2018) 18:56 Page 2 of 7 the NOBLE survey data. These costs are comparable to were: (1) development of OAB knowledge and attitude those of osteoporosis and gynecological cancers [5]. items and surveys; and (2) psychometric testing of the However, many women with OAB suffer in silence with- surveys. The local Institutional Review Board approved out seeking care [1–9], while attempting to manage their the study. symptoms by developing coping mechanisms. Survey development Conceptual framework In Phase 1, we conducted in-depth literature review, and Our study conceptual model is based on the Theory of patient and provider focus groups to determine Planned Behavior (TPB) [10]. The TPB posits that hu- OAB-knowledge and OAB-attitude survey items [12]. As man behavior results from intentions, which in turn are OAB symptoms in women often are associated with per- driven by attitude toward behavior; subjective norms; ceived social stigma, we included the term “stigma” in and perceived behavioral control. Knowledge plays an our literature review. We also searched for OAB related important role in each of these. In this study, the focus surveys to expand our framework for knowledge and is on the assessment of knowledge of and attitude to- attitude measurement. We conducted a comprehen- wards OAB. This information, when linked with the ob- sive review of the literature published in English from served behavior, can inform interventions to influence 1990 to 2014 using Medline, PUBMED, CINAHL, and OAB care seeking behavior (Fig. 1). EMBASE. A key term search strategy was employed Knowledge regarding OAB and attitudes towards using “Overactive bladder (urgency, frequency and seeking care for OAB can affect the uptake of OAB urge urinary incontinence)”, “incontinence”, “noc- care [11]. Therefore, the objective of this study was turia”, “health related quality of life (HRQoL)”, “symp- to develop psychometrically sound surveys to assess toms”, “attitude”,and “knowledge”. knowledge and attitudes among adult women from a Next, we conducted patient focus groups to explore large academic, urban healthcare system. We also their knowledge of OAB, experience of OAB symptoms studied if OAB knowledge and attitude was associated and attitudes towards seeking OAB care. Prior to focus with OAB treatment and if those with higher level of groups, we developed an interview guide with instruc- OAB knowledge had more positive attitude towards tions, think-aloud exercises, and scripted probes. All OAB care. focus group participants provided written consent. An experienced moderator led each focus group with assist- Methods ance from co-facilitators (DK and RJ). Similarly, two In this study, we evaluated the knowledge and attitude provider focus groups yielded expert’s perceptions of among women with OAB. We used theory of TPB to OAB care. Focus group discussions were audio taped postulate a conceptual framework of knowledge of and and transcribed. Two reviewers (SC and RJ) analyzed the attitude toward OAB care. Two phases of our study transcribed text using NVivo software, a qualitative Fig. 1 Conceptual Model-Theory of Planned Behavior (Ajzen, 1991) Chhatre et al. BMC Urology (2018) 18:56 Page 3 of 7 analysis program that allows coding and classification of for enrollment in a urinary incontinence prevention study. text into major and minor concepts. The third and fourth focus group consisted of women Informed by the literature review and focus groups, we who received care from a large urban academic healthcare assembled an initial pool of items for OAB-knowledge system. The fifth focus group consisted of female mem- and OAB-attitude surveys. These items were reviewed bers of the Living Independently for Elders program. Not by external and internal collaborators who gave feedback all focus group participants reported having OAB. Average on the face validity (clarity and relevance) of the candi- length of each focus group was 45 min. In addition, two date items. The qualitative item review was initiated by provider focus groups were conducted. One consisted of developing draft OAB-knowledge and OAB-attitude sur- primary care physicians, geriatricians, and geriatric nurse veys. We employed best practices [13–15] for creating practitioners. The other one was among providers of the new questions for the surveys, reviewing items to ensure Living Independently for Elders program. that they: (1) did not exceed a sixth-grade reading level, Data collection continued until saturation occurred as measured by the Flesch–Kincaid Grade Level stand- [13–15]. Content analysis was performed through open ard; (2) minimized ambiguity or cognitive difficulty; (3) coding by the same investigator [13–15]. Peer review and avoided multi-barreled questions; (4) were concisely and consistency of the analysis occurred whereby another in- simply worded; and (5) were easy to translate into other vestigator independently analyzed transcripts using open languages. coding and then crosschecked for discrepancies. Statistical analysis Item Development The internal reliability of the OAB knowledge and atti- Informed by literature review and focus groups, we cre- tude surveys was assessed by Cronbach’s alpha (≥ 0.60) ated an initial pool of 18 and 19 items for with items with low item-total correlations excluded. A OAB-knowledge and OAB-attitude surveys, respectively. random-effects, repeated measures analysis of variance OAB-knowledge items were related to three general was used to compute intra-class correlation coefficients themes: perception of OAB; cause of and information (ICC) for the seven-day test–retest administration of the about OAB; and signs of OAB. OAB-attitude items were surveys. The minimum threshold for re-test was an ICC related to three general themes of treatment seeking, de- of 0.40 [12, 16]. We determined the number of partici- cision making and effects of OAB. pants required for test–retest reliability assessment Field versions of the measures were constructed as fol- based on a target of 0.80 (excellent) ICC for the pair of lows. The OAB-knowledge items used a ‘yes’/‘no’ or total scores on each measure against an ICC of 0.50 ‘don’t know’;or ‘true’/‘false’ or ‘don’t know’ response for- (fair). On this basis, we estimated that at least 21 partici- mat (each correct answer scored one and ‘don’t know’ pants would be needed [16]. Construct validity was eval- and incorrect responses scored zero). Responses to the uated by using confirmatory factor analysis; concurrent OAB-attitude surveys were anchored by a five-point validity was evaluated by comparing the OAB knowledge Likert type scale (‘completely disagree’, ‘disagree’, ‘unsure’, and OAB attitude with ICIQ-UI scores. We also ex- ‘agree’, and ‘completely agree’). The order of the items plored if OAB knowledge, OAB attitude and severity of was random. After eliminating the items that were dupli- symptoms (ICIQ-UI scores) varied by OAB treatment cative, or unrelated to the constructs, we retained 16 status. items in each survey. Please see Additional file 1 for OAB knowledge and attitude surveys. Results Literature review Cross sectional sample characteristics From literature review we identified three preliminary To validate the OAB-knowledge and OAB-attitude surveys, OAB knowledge and attitude concepts: (1) OAB symp- we contacted 244 women in total. Of these 170 were from a toms and treatment; (2) psychological symptoms (e.g., database of women who failed prescreening for enrollment anxiety, depression, fear, frustration), and (3) social in a urinary incontinence prevention study; and the rest were symptoms (e.g., disease stigma, intimacy and sexuality, identified from the administrative database of a large urban embarrassment, diminished work productivity). We used academic healthcare system. Of these 244 women, 115 these concepts and expert feedback to develop an initial provided written consent and 104 completed the conceptual model and focus group script. assessments. A research coordinator administered the International Consultation of Incontinence Modular Focus group Questionnaire – Urinary Incontinence (ICIQ-UI) form, Five focus group meetings of patients (total n = 62) were OAB-knowledge, and OAB-attitude surveys over tele- conducted. Two focus groups consisted of participants re- phone. Seven-day test–retest reliability was assessed cruited from a database of women who failed prescreening among 21 randomly selected participants. More than 90% Chhatre et al. BMC Urology (2018) 18:56 Page 4 of 7 of the participants were between the age of 56 and 75, yielded a three-factor solution for the obliquely rotated about three-quarters were white, a large proportion were factor pattern for the surveys. We identified three OAB college educated, about half were retired and 60% were knowledge factors - perception of OAB, cause and infor- married. mation, and signs of OAB; and three OAB-attitude fac- In Tables 1 and 2, show the response distribution for tors - treatment seeking, decision-making, and effects of the OAB-knowledge and OAB-attitude surveys. The OAB. Inter-correlations of the sub-scales supported the average OAB knowledge score was 9.1 (±1.9). The pos- validity of a single, higher order OAB-knowledge and sible range is 0 to 16 and higher score represents better OAB-attitude scales, which was not refuted by the con- OAB knowledge. The average attitude score was 42.8 firmatory factor analysis, thus helping establish the con- (±6.6). The possible range for attitude score is 16–80, struct validity of the surveys. and lower score represents more positive attitude to- The total scores of the OAB-knowledge and OAB-attitude wards OAB care. Almost all participants had heard of surveys demonstrated statistically significant correlations OAB and were aware of treatment options for OAB with the ICIQ total scores, 0.3231 (p = 0.0009) and − 0.4454 (98%). Most agreed that treatment benefits outweigh its (p < 0.0001), respectively. The OAB-knowledge and attitude costs (76%), Slightly more than half said they were very scores varied significantly between patients with low ICIQ likely to seek treatment for OAB (54%). The women in scores (0–7), moderate ICIQ scores (8–14) and high ICIQ our sample were very likely to seek behavioral treatment scores (15–21). The mean knowledge scores were 8.6 (±1.6), (such as such as Kegel exercise) for OAB than pharma- 9.4 (±1.0) and 10.8 (±0.5) for the low, moderate and high cological treatment (72% vs. 8%). A large proportion of ICIQ score groups, respectively. Similarly, the mean attitude women thought that OAB will very likely cause stigma scores were 44.8 (±5.2), 42.0 (±6.9) and 33.2 (±3.3) for the (47%) and affect quality of life (40%). low, moderate and high ICIQ score groups, respectively. The mean ICIQ score was 6.6 (SD 3.3). The total ICIQ These associations between OAB knowledge scores, OAB at- score ranges from 0 to 21 and a higher score indicates titude scores and ICIQ scores helped establish the concur- greater severity of symptoms (Table 3). Factor analysis rent validity of the surveys. Finally, all OAB-knowledge and OAB-attitude sub-scales demonstrated high test-retest reli- Table 1 Overactive Bladder (OAB) Knowledge (n = 104) ability, with Cronbach’s α for each exceeding our a priori Have you heard of overactive bladder 98.1 threshold of ≥0.70, indicating good test-retest reliability of syndrome (OAB), which includes urinary the surveys. urgency, frequency, and nocturia with or without urgency incontinence? (% yes) Seventy-six (73.1%) women were treatment naïve Knowledge items (%) True False Don’t know whereas 28 (26.9%) had either pharmacological or be- havioral treatment for OAB. We did not obtain data on OAB is a natural aging process 52.9 43.3 3.9 treatment length or treatment compliance. The mean OAB happens mostly in women 59.6 34.6 5.8 OAB knowledge score was 9.0 (SD 8.7) for the treatment There are no treatments for OAB 6.7 92.3 0.96 naïve group, and 9.3 (SD 8.4) for those with treatment OAB is related to childbirth 44.2 53.9 1.9 (p = 0.6446; effect size 0.10). Mean attitude score was My doctor can tell me if I have OAB 68.3 30.8 0.96 42.6 (SD 6.6) for the treatment naïve group, and 43.3 Any sickness can cause OAB 39.4 54.8 5.8 (SD 6.4) for those with treatment (p = 0.5956; effect size 0.12). Finally, the severity of symptoms as measured by OAB has specific symptoms 91.4 7.7 0.96 ICIQ-UI was 5.9 (Sd 3.3) for the treatment group, Treatments for OAB have many side 27.9 70.2 1.9 compared to 7.0 (SD 3.6) for the treatment naïve group effects (p = 0.1812; effect size 0.29). OAB is a chronic disease 42.3 55.8 1.9 OAB can go away on its own 17.3 80.8 1.9 Discussion I can get all information about OAB 34.6 63.5 1.9 Our OAB-knowledge and attitude surveys are an im- from internet portant step in assessment of the association between Pharmacological (i., e drug) treatment is 86.5 11.5 1.9 OAB knowledge, attitude, and treatment uptake and available for OAB treatment compliance. We observed some difference in OAB is caused by an enlarged prostate 42.3 52.9 4.8 the OAB knowledge, OAB attitude, and severity of Insurance does not cover treatment 12.5 77.9 9.6 symptoms across treatment status. Though we did not for OAB find statistical significance in these differences, they may OAB medication is too expensive 23.1 63.5 13.5 be potentially modifiable factors that affect OAB treat- The benefit of OAB medication is worth 76.0 17.3 6.7 ment uptake and treatment compliance. the cost Approximately 33 million Americans (16.5% of the Total OAB knowledge score (mean, std) 9.1 (±1.9) U.S. population) experience OAB [1–9]. The genesis of Chhatre et al. BMC Urology (2018) 18:56 Page 5 of 7 Table 2 Overactive Bladder (OAB) Attitude (n = 104) Attitude items (%) Very likely Somewhat likely Neutral Somewhat Very Unlikely unlikely How likely are you to ask your doctor about OAB? 45.2 24.0 4.8 14.4 11.5 If you have OAB, how likely are you to seek treatment? 53.9 28.9 3.9 6.3 6.3 How likely will you research about OAB? 52.9 29.8 5.8 3.9 7.7 How likely are you to seek pharmacological (drug) treatment 7.7 33.7 10.6 25.9 22.2 for OAB? How likely are you to seek behavioral (such as Kegel exercise) 72.1 23.1 1.9 0.96 1.9 treatment for OAB? How likely are you to seek surgery for OAB? 3.9 9.6 11.5 25.0 50.0 How likely will you seek other medical treatment for OAB? 32.7 34.6 14.4 13.5 4.8 (e.g.acupuncture, yoga, meditation, herbal medicine, etc.) How likely will side effects of a treatment affect your decision 58.7 29.8 6.7 3.9 0.96 to seek treatment? What is the likelihood OAB is causing you embarrassment? 47.1 31.7 4.8 7.7 8.9 How likely will OAB affect your quality of life? 40.4 30.8 7.7 13.5 7.7 How likely will cost affect your decision to seek treatment 10.6 27.9 9.6 29.0 27.9 of OAB What is the likelihood that wearing pads for protection will 17.3 25.9 12.5 20.2 24.0 bother you? How likely will you simply ignore the OAB problem? 5.8 11.5 2.9 26.9 52.9 How likely will you be to support a public health campaign 65.4 25.9 4.8 2.9 0.96 about OAB awareness? How likely would you be to discuss OAB with friends and 49.0 37.5 3.9 6.7 2.9 family? How likely would you be to continue with OAB treatment 11.5 27.9 22.1 25.0 13.5 despite side effects? Total OAB attitude score (mean, std) 42.8 (±6.6) symptoms of OAB commonly is multi-factorial, and thus professional model that emerged from media representa- multimodal therapy that includes pharmacologic and tions of female urinary incontinence [18]. Despite a wide non-pharmacologic interventions may be necessary. variety of treatments for OAB, many women choose not to However, OAB remains underdiagnosed and undertreated. seek care [19–21]. Further exploration of the “disconnect” A Finnish study analyzed the effects of frequency of urinary between the experiences of women who live with urinary urgencyand urgeurinaryincontinenceonsymptom-related incontinence and common public views of female urinary bother, HRQoL, and the clinically meaningful prevalence of incontinence may lead to an increased appreciation and overactive bladder [17]. The study consisted of 6000 subjects understanding of these issues [22]. A mixed-methods study (age 18–79 years) randomly identified from the Finnish conducted needs assessment of OAB patients. Significant population register in 2003–2004, with 62.4% responding. time-gap was noted between the onset of OAB symptoms Urgency was reported by more than half, whereas urinary in- and diagnosis of OAB. This indicates need for better OAB continence was reported by 25.7% of women. It was con- screening and diagnosis [23]. cluded that increased severity of urgency and urinary Our results make important contribution to the exist- incontinence is associated with a statistically significant and ing research on OAB. Our cohort of women thought clinically important decrease in HRQoL. that OAB happens mostly in women. A large proportion Older age, genetics, female sex, pregnancy, childbirth, had heard of OAB and was aware of treatments options stress and extreme physical activity are generally perceived for OAB. Also, most agreed that treatment benefits out- as causes of OAB. Symptoms are under-reported in weigh its costs, however, only half said they were very women, mainly due to limited understanding of or appreci- likely to seek treatment for OAB. The women in our ation of the morbidity of the condition. Women tend to sample were more likely to seek behavioral treatment or think of OAB as normal part of aging and develop coping self-management for OAB than pharmacological treat- mechanisms, rather than seeking care [3]. The cultural ment. A large proportion of women thought that OAB model constructed by women differs significantly from the will likely cause stigma and affect quality of life. Chhatre et al. BMC Urology (2018) 18:56 Page 6 of 7 Table 3 ICIQ UI Short Form (n = 104) OAB knowledge and OAB attitude. While usually not life threatening, OAB has a significant negative impact on ICIQ items quality of life and can adversely affect self-esteem, result- How often do you leak urine? (%) ing in embarrassment, diminished social relations, sexual Never 26.9 satisfaction, professional and social life interactions, and About once a week or less 41.4 overall wellbeing [22–28]. 2–3 times a day 20.2 Our surveys must be refined for assessment among About once a day 7.7 different subpopulations based on age, gender, and func- Several times a day 3.9 tional status. Knowledge plays an important role in shaping a person’s attitude toward behavior, subjective All the time 0.0 norms, and perceived behavioral control. Our study pro- How much urine do you think usually leaks (whether you wear vides effect sizes for OAB knowledge, OAB attitude and protection or not)? (%) ICI UI scores. These effect sizes can form the basis for None 22.1 developing a fully powered trial to study the association A small amount 69.2 between OAB knowledge and attitude, type and length A moderate amount 8.7 of treatment, treatment compliance, and quality of life, A large amount 0.0 leading to interventions for enhancing OAB care. Overall, on a scale from zero to 10, where Mean = 1.8 (±2.3) zero is “not at all” and 10 is a “great deal”, Additional file How much does leaking urine interfere with your everyday life? Additional file 1: Appendix- OAB knowledge and attitude surveys. Total ICIQ score Mean = 6.6 (±3.3) (DOCX 25 kb) Does urine leak (% yes) Before you go to the toilet? 60.6 Funding Asellas Pharma, Inc. (US). When you cough or sneeze? 51.9 When you are asleep? 7.7 Authors’ contributions SC - Conception and design, Acquisition of data, Data analysis, Manuscript When you are physically active or 27.9 writing/editing. DKN - Manuscript writing/editing. AJW - Manuscript writing/ exercising? editing. AEJ - Data collection or management. JSS - Manuscript writing/ When you have finished urinating 14.4 editing. RJ - Obtaining funding, Conception and design, Acquisition of data, and are dressed? Data analysis, Manuscript writing/editing. All authors read and approved the final manuscript. For no obvious reason 16.4 All the time? 0.96 Ethics approval and consent to participate All procedures performed in studies involving human participants were in Never – urine does not leak 22.2 accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards. University of Pennsylvania’s We note following limitations to the study. First limita- Institutional Review Board has approved the protocol for this study. Informed consent: Informed consent was obtained from all individual participants tion is selection bias as participants were either included in the study. self-selected to enroll in a urinary incontinence prevention study or were selected from a large urban academic Competing interests The authors declare that they have no competing interests. healthcare system database. Hence, symptom severity of women in our cohort may not be representative of the general population of women with OAB. Participants were Publisher’sNote Springer Nature remains neutral with regard to jurisdictional claims in recruited via telephone during business hours and some published maps and institutional affiliations. of the focus groups also were held during those hours. As a result, the majority of those participated were retired, Author details Department of Psychiatry, Perelman School of Medicine, University of and older. Therefore, we may not have fully captured the Pennsylvania, 3535 Market St., Suite 4051, Philadelphia, PA 19104, USA. experiences of younger adult women with OAB or of men 2 Division of Urology, Department of Surgery, Perelman School of Medicine, with OAB. Additionally, the ICIQ-UI survey is not vali- University of Pennsylvania, Philadelphia, PA 19104, USA. Department of Medicine, Perelman School of Medicine, University of Pennsylvania, dated for telephone administration. Another limitation is Philadelphia, PA 19104, USA. Departments of Medicine and Health that of discrepancies and biases in qualitative data analysis. Management, Leonard Davis Institute of Health Economics, University of To minimize this, two investigators analyzed the data sep- Pennsylvania, Perelman School of Medicine and Wharton School of Business, Philadelphia, PA 19104, USA. Departments of Medicine and Surgery, arately. Finally, we did not collect information about Divisions of Geriatrics and Urology, Perelman School of Medicine Leonard length of OAB treatment, or treatment compliance that Davis Institute of Health Economics, University of Pennsylvania, Philadelphia, may affect overall association between treatment status, PA 19104, USA. Chhatre et al. BMC Urology (2018) 18:56 Page 7 of 7 Received: 7 March 2017 Accepted: 21 May 2018 27. Wennberg AL, et al. A longitudinal population-based survey of urinary incontinence, overactive bladder, and other lower urinary tract symptoms in women. Eur Urol. 2009;55:783–91. 28. Willis-Gray MG, Dieter AA, Geller EJ. Evaluation and management of overactive bladder: strategies for optimizing care. Research and Reports in References Urology. 2016;8:113–22. 1. Abrams P, et al. The standardization of terminology of lower urinary tract function: report from the standardization sub-committee of the international continence society. Neurourol Urodyn. 2002;21:167–78. 2. Stewart WF, et al. Prevalence and burden of overactive bladder in the United States. World J Urol. 2003;20:327–36. 3. Diokno AC, et al. Perceptions and behaviours of women with bladder control problems. Fam Pract. 2006;23(5):568–77. 4. Irwin DE, et al. Population-based survey of urinary incontinence, overactive bladder, and other lower urinary tract symptoms in five countries: results of the EPIC study. Eur Urol. 2006;50:1306–15. 5. Milsom I, et al. Global prevalence and economic burden of urgency urinary incontinence: a systematic review. Eur Urol. 2014;65:79–95. 6. Anger JT, et al. Health literacy and disease understanding among aging women with pelvic floor disorders. Female Pelvic Med Reconstr Surg. 2012;18(6):340–3. 7. Anger JT, et al. Women's experience with severe overactive bladder symptoms and treatment: insight revealed from patient focus groups. Neurourol Urodyn. 2011;30:1295–9. 8. Burgio KL, et al. Impact of behavior and lifestyle on bladder health. Int J Clin Pract. 2013;67(6):495–504. 9. Coyne KS, et al. The prevalence of lower urinary tract symptoms (LUTS) and overactive bladder (OAB) by racial/ethnic group and age: results from OAB-POLL. Neurourol Urodyn. 2013;32(3):230–7. 10. Ajen I. The theory of planned behavior. Organ Behav Hum Decis Process. 1991;50:179–211. 11. Gagnon L, Simard A, Tu L. Knowledge about urology in the general population: alarming results. Can Urol Assoc J. 2009;3(5):388–91. 12. Borenstein M, Hedges L.V, Higgins J.P.T, Rothstein H.R. Introduction to meta analysis. Chichester, UK: Wiley; 2009. 13. DeWalt DA, et al. Evaluation of item candidates: the PROMIS qualitative item review. Med Care. 2007;45:S12–21. 14. Morgan DL. Focus groups as qualitative research. California: Sage University Press; 2009. 15. Reeve BB, et al. Psychometric evaluation and calibration of health-related quality of life item banks: plans for the patient-reported outcomes measurement information system (PROMIS). Med Care. 2007;45:S22–31. 16. Kraemer H, Thiemann S. How Many Subjects? Statistical Power Analysis in Research. California: Sage; 1987. 17. Tikkinen KAO, Tammela TLJ, Rissanen AM, Valpas A, Huhtala H, et al. Is the Prevalence of Overactive Bladder Overestimated? A Population-Based Study in Finland. PLoS ONE. 2007;2(2):e195. https://doi.org/10.1371/journal.pone. 18. Bradway CW, Barg F. Developing a cultural model for a long-term female urinary incontinence. Soc Sci Med. 2006;63:3150–61. 19. Hägglund D, et al. Reasons why women with long-term urinary incontinence do not seek professional help: a cross-sectional population- based cohort study. Int Urogynecol J. 2003;14:296–304. 20. Shaw C, et al. Barriers to help seeking in people with urinary symptoms. Fam Pract. 2001;18:48–52. 21. Wein AJ, Rovner ES. Definition and epidemiology of overactive bladder. Urology. 2002;60(suppl 5A):7–12. 22. Taylor DW, et al. The self-reported prevalence and knowledge of urinary incontinence and barriers to health care-seeking in a community sample of Canadian women. Am J Med Sci. 2013;3(5):97–102. 23. Filipetto FA, et al. The patient perspective on overactive bladder: a mixed- methods needs assessment. BMC Fam Pract. 2014;15:96. 24. Coyne KS, et al. An overactive bladder symptom and health-related quality of life short form: validation of the OAB-q SF. Neurourol Urodyn. 2015;34:255–63. 25. Hashim H, Brams P. How should patients with an overactive bladder manipulate their fluid intake? BJU International. 2008;102(1):62–6. 26. Kim TH, et al. Drug persistence and compliance affect patient-reported outcomes in overactive bladder syndrome. Qual Life Res. 2016;25:2021–9. http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png BMC Urology Springer Journals

Knowledge and attitude for overactive bladder care among women: development and measurement

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Abstract

Background: Overactive bladder (OAB) affects millions of women. It is important to assess knowledge and attitude in affected patients. The study objective was to develop surveys to assess OAB knowledge and OAB related attitude, and its association with OAB treatment status. Methods: Systematic literature review and qualitative analysis of patient and provider focus groups helped identify OAB knowledge and attitude survey items. We determined psychometric properties of the two surveys in a cross- sectional sample of 104 women, 27% of whom had received OAB treatment. Results: The OAB-knowledge survey consisted of 16 items and 3 condition-related concepts: perception of OAB; cause and information; and signs of OAB. The OAB-attitude survey consisted of 16 items and its concepts were treatment seeking; decision-making and effects. Both surveys demonstrated good construct validity and test-retest reliability ((≥ 0.60). In the cross-sectional validation sample, OAB-knowledge and attitude discriminated between those with different levels of ICIQ-UI scores. We observed some difference in the OAB knowledge, OAB attitude, and severity of symptoms between those treated for OAB vs. treatment naive. Conclusions: OAB knowledge and attitude surveys provide a novel tool to assess OAB domains in women. Though we did not find statistical significance in OAB knowledge and attitude scores across treatment status, they may be potentially modifiable factors that affect OAB treatment uptake and treatment compliance. Refinement of these surveys in diverse sub-populations is necessary. Our study provides effect sizes for OAB knowledge and attitude. These effect sizes can help development of fully powered trials to study the association between OAB knowledge and attitude, type and length of treatment, treatment compliance, and quality of life, leading to interventions for enhancing OAB care. Keywords: Overactive bladder, Women, Knowledge and attitude, Treatment uptake Background economic consequences [1–3], OAB affects nearly 17% A common health concern for men and women of all of women in the US. Prevalence of OAB increases with ages, overactive bladder (OAB) is defined by the Inter- age and among women aged 65 and older, the preva- national Continence Society as urgency, with or without lence of OAB is approximately 30% [2–5]. urge urinary incontinence (UI), frequently accompanied The symptoms of OAB can have negative effects on with frequency and nocturia in the absence of proven in- quality of life and necessitate lifestyle changes [6–9]. fection or other obvious pathology [1]. An embarrassing The National Overactive Bladder Evaluation (NOBLE) and debilitating condition with substantial health and Program data showed that OAB with or without urgency urinary incontinence was associated with significantly lower quality of life and quality of sleep, and higher de- * Correspondence: rasu@mail.med.upenn.edu pression, compared to controls [2]. Total cost related to Department of Psychiatry, Perelman School of Medicine, University of Pennsylvania, 3535 Market St., Suite 4051, Philadelphia, PA 19104, USA OAB in the US was more than $12 billion in 2000 using Full list of author information is available at the end of the article © The Author(s). 2018 Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated. Chhatre et al. BMC Urology (2018) 18:56 Page 2 of 7 the NOBLE survey data. These costs are comparable to were: (1) development of OAB knowledge and attitude those of osteoporosis and gynecological cancers [5]. items and surveys; and (2) psychometric testing of the However, many women with OAB suffer in silence with- surveys. The local Institutional Review Board approved out seeking care [1–9], while attempting to manage their the study. symptoms by developing coping mechanisms. Survey development Conceptual framework In Phase 1, we conducted in-depth literature review, and Our study conceptual model is based on the Theory of patient and provider focus groups to determine Planned Behavior (TPB) [10]. The TPB posits that hu- OAB-knowledge and OAB-attitude survey items [12]. As man behavior results from intentions, which in turn are OAB symptoms in women often are associated with per- driven by attitude toward behavior; subjective norms; ceived social stigma, we included the term “stigma” in and perceived behavioral control. Knowledge plays an our literature review. We also searched for OAB related important role in each of these. In this study, the focus surveys to expand our framework for knowledge and is on the assessment of knowledge of and attitude to- attitude measurement. We conducted a comprehen- wards OAB. This information, when linked with the ob- sive review of the literature published in English from served behavior, can inform interventions to influence 1990 to 2014 using Medline, PUBMED, CINAHL, and OAB care seeking behavior (Fig. 1). EMBASE. A key term search strategy was employed Knowledge regarding OAB and attitudes towards using “Overactive bladder (urgency, frequency and seeking care for OAB can affect the uptake of OAB urge urinary incontinence)”, “incontinence”, “noc- care [11]. Therefore, the objective of this study was turia”, “health related quality of life (HRQoL)”, “symp- to develop psychometrically sound surveys to assess toms”, “attitude”,and “knowledge”. knowledge and attitudes among adult women from a Next, we conducted patient focus groups to explore large academic, urban healthcare system. We also their knowledge of OAB, experience of OAB symptoms studied if OAB knowledge and attitude was associated and attitudes towards seeking OAB care. Prior to focus with OAB treatment and if those with higher level of groups, we developed an interview guide with instruc- OAB knowledge had more positive attitude towards tions, think-aloud exercises, and scripted probes. All OAB care. focus group participants provided written consent. An experienced moderator led each focus group with assist- Methods ance from co-facilitators (DK and RJ). Similarly, two In this study, we evaluated the knowledge and attitude provider focus groups yielded expert’s perceptions of among women with OAB. We used theory of TPB to OAB care. Focus group discussions were audio taped postulate a conceptual framework of knowledge of and and transcribed. Two reviewers (SC and RJ) analyzed the attitude toward OAB care. Two phases of our study transcribed text using NVivo software, a qualitative Fig. 1 Conceptual Model-Theory of Planned Behavior (Ajzen, 1991) Chhatre et al. BMC Urology (2018) 18:56 Page 3 of 7 analysis program that allows coding and classification of for enrollment in a urinary incontinence prevention study. text into major and minor concepts. The third and fourth focus group consisted of women Informed by the literature review and focus groups, we who received care from a large urban academic healthcare assembled an initial pool of items for OAB-knowledge system. The fifth focus group consisted of female mem- and OAB-attitude surveys. These items were reviewed bers of the Living Independently for Elders program. Not by external and internal collaborators who gave feedback all focus group participants reported having OAB. Average on the face validity (clarity and relevance) of the candi- length of each focus group was 45 min. In addition, two date items. The qualitative item review was initiated by provider focus groups were conducted. One consisted of developing draft OAB-knowledge and OAB-attitude sur- primary care physicians, geriatricians, and geriatric nurse veys. We employed best practices [13–15] for creating practitioners. The other one was among providers of the new questions for the surveys, reviewing items to ensure Living Independently for Elders program. that they: (1) did not exceed a sixth-grade reading level, Data collection continued until saturation occurred as measured by the Flesch–Kincaid Grade Level stand- [13–15]. Content analysis was performed through open ard; (2) minimized ambiguity or cognitive difficulty; (3) coding by the same investigator [13–15]. Peer review and avoided multi-barreled questions; (4) were concisely and consistency of the analysis occurred whereby another in- simply worded; and (5) were easy to translate into other vestigator independently analyzed transcripts using open languages. coding and then crosschecked for discrepancies. Statistical analysis Item Development The internal reliability of the OAB knowledge and atti- Informed by literature review and focus groups, we cre- tude surveys was assessed by Cronbach’s alpha (≥ 0.60) ated an initial pool of 18 and 19 items for with items with low item-total correlations excluded. A OAB-knowledge and OAB-attitude surveys, respectively. random-effects, repeated measures analysis of variance OAB-knowledge items were related to three general was used to compute intra-class correlation coefficients themes: perception of OAB; cause of and information (ICC) for the seven-day test–retest administration of the about OAB; and signs of OAB. OAB-attitude items were surveys. The minimum threshold for re-test was an ICC related to three general themes of treatment seeking, de- of 0.40 [12, 16]. We determined the number of partici- cision making and effects of OAB. pants required for test–retest reliability assessment Field versions of the measures were constructed as fol- based on a target of 0.80 (excellent) ICC for the pair of lows. The OAB-knowledge items used a ‘yes’/‘no’ or total scores on each measure against an ICC of 0.50 ‘don’t know’;or ‘true’/‘false’ or ‘don’t know’ response for- (fair). On this basis, we estimated that at least 21 partici- mat (each correct answer scored one and ‘don’t know’ pants would be needed [16]. Construct validity was eval- and incorrect responses scored zero). Responses to the uated by using confirmatory factor analysis; concurrent OAB-attitude surveys were anchored by a five-point validity was evaluated by comparing the OAB knowledge Likert type scale (‘completely disagree’, ‘disagree’, ‘unsure’, and OAB attitude with ICIQ-UI scores. We also ex- ‘agree’, and ‘completely agree’). The order of the items plored if OAB knowledge, OAB attitude and severity of was random. After eliminating the items that were dupli- symptoms (ICIQ-UI scores) varied by OAB treatment cative, or unrelated to the constructs, we retained 16 status. items in each survey. Please see Additional file 1 for OAB knowledge and attitude surveys. Results Literature review Cross sectional sample characteristics From literature review we identified three preliminary To validate the OAB-knowledge and OAB-attitude surveys, OAB knowledge and attitude concepts: (1) OAB symp- we contacted 244 women in total. Of these 170 were from a toms and treatment; (2) psychological symptoms (e.g., database of women who failed prescreening for enrollment anxiety, depression, fear, frustration), and (3) social in a urinary incontinence prevention study; and the rest were symptoms (e.g., disease stigma, intimacy and sexuality, identified from the administrative database of a large urban embarrassment, diminished work productivity). We used academic healthcare system. Of these 244 women, 115 these concepts and expert feedback to develop an initial provided written consent and 104 completed the conceptual model and focus group script. assessments. A research coordinator administered the International Consultation of Incontinence Modular Focus group Questionnaire – Urinary Incontinence (ICIQ-UI) form, Five focus group meetings of patients (total n = 62) were OAB-knowledge, and OAB-attitude surveys over tele- conducted. Two focus groups consisted of participants re- phone. Seven-day test–retest reliability was assessed cruited from a database of women who failed prescreening among 21 randomly selected participants. More than 90% Chhatre et al. BMC Urology (2018) 18:56 Page 4 of 7 of the participants were between the age of 56 and 75, yielded a three-factor solution for the obliquely rotated about three-quarters were white, a large proportion were factor pattern for the surveys. We identified three OAB college educated, about half were retired and 60% were knowledge factors - perception of OAB, cause and infor- married. mation, and signs of OAB; and three OAB-attitude fac- In Tables 1 and 2, show the response distribution for tors - treatment seeking, decision-making, and effects of the OAB-knowledge and OAB-attitude surveys. The OAB. Inter-correlations of the sub-scales supported the average OAB knowledge score was 9.1 (±1.9). The pos- validity of a single, higher order OAB-knowledge and sible range is 0 to 16 and higher score represents better OAB-attitude scales, which was not refuted by the con- OAB knowledge. The average attitude score was 42.8 firmatory factor analysis, thus helping establish the con- (±6.6). The possible range for attitude score is 16–80, struct validity of the surveys. and lower score represents more positive attitude to- The total scores of the OAB-knowledge and OAB-attitude wards OAB care. Almost all participants had heard of surveys demonstrated statistically significant correlations OAB and were aware of treatment options for OAB with the ICIQ total scores, 0.3231 (p = 0.0009) and − 0.4454 (98%). Most agreed that treatment benefits outweigh its (p < 0.0001), respectively. The OAB-knowledge and attitude costs (76%), Slightly more than half said they were very scores varied significantly between patients with low ICIQ likely to seek treatment for OAB (54%). The women in scores (0–7), moderate ICIQ scores (8–14) and high ICIQ our sample were very likely to seek behavioral treatment scores (15–21). The mean knowledge scores were 8.6 (±1.6), (such as such as Kegel exercise) for OAB than pharma- 9.4 (±1.0) and 10.8 (±0.5) for the low, moderate and high cological treatment (72% vs. 8%). A large proportion of ICIQ score groups, respectively. Similarly, the mean attitude women thought that OAB will very likely cause stigma scores were 44.8 (±5.2), 42.0 (±6.9) and 33.2 (±3.3) for the (47%) and affect quality of life (40%). low, moderate and high ICIQ score groups, respectively. The mean ICIQ score was 6.6 (SD 3.3). The total ICIQ These associations between OAB knowledge scores, OAB at- score ranges from 0 to 21 and a higher score indicates titude scores and ICIQ scores helped establish the concur- greater severity of symptoms (Table 3). Factor analysis rent validity of the surveys. Finally, all OAB-knowledge and OAB-attitude sub-scales demonstrated high test-retest reli- Table 1 Overactive Bladder (OAB) Knowledge (n = 104) ability, with Cronbach’s α for each exceeding our a priori Have you heard of overactive bladder 98.1 threshold of ≥0.70, indicating good test-retest reliability of syndrome (OAB), which includes urinary the surveys. urgency, frequency, and nocturia with or without urgency incontinence? (% yes) Seventy-six (73.1%) women were treatment naïve Knowledge items (%) True False Don’t know whereas 28 (26.9%) had either pharmacological or be- havioral treatment for OAB. We did not obtain data on OAB is a natural aging process 52.9 43.3 3.9 treatment length or treatment compliance. The mean OAB happens mostly in women 59.6 34.6 5.8 OAB knowledge score was 9.0 (SD 8.7) for the treatment There are no treatments for OAB 6.7 92.3 0.96 naïve group, and 9.3 (SD 8.4) for those with treatment OAB is related to childbirth 44.2 53.9 1.9 (p = 0.6446; effect size 0.10). Mean attitude score was My doctor can tell me if I have OAB 68.3 30.8 0.96 42.6 (SD 6.6) for the treatment naïve group, and 43.3 Any sickness can cause OAB 39.4 54.8 5.8 (SD 6.4) for those with treatment (p = 0.5956; effect size 0.12). Finally, the severity of symptoms as measured by OAB has specific symptoms 91.4 7.7 0.96 ICIQ-UI was 5.9 (Sd 3.3) for the treatment group, Treatments for OAB have many side 27.9 70.2 1.9 compared to 7.0 (SD 3.6) for the treatment naïve group effects (p = 0.1812; effect size 0.29). OAB is a chronic disease 42.3 55.8 1.9 OAB can go away on its own 17.3 80.8 1.9 Discussion I can get all information about OAB 34.6 63.5 1.9 Our OAB-knowledge and attitude surveys are an im- from internet portant step in assessment of the association between Pharmacological (i., e drug) treatment is 86.5 11.5 1.9 OAB knowledge, attitude, and treatment uptake and available for OAB treatment compliance. We observed some difference in OAB is caused by an enlarged prostate 42.3 52.9 4.8 the OAB knowledge, OAB attitude, and severity of Insurance does not cover treatment 12.5 77.9 9.6 symptoms across treatment status. Though we did not for OAB find statistical significance in these differences, they may OAB medication is too expensive 23.1 63.5 13.5 be potentially modifiable factors that affect OAB treat- The benefit of OAB medication is worth 76.0 17.3 6.7 ment uptake and treatment compliance. the cost Approximately 33 million Americans (16.5% of the Total OAB knowledge score (mean, std) 9.1 (±1.9) U.S. population) experience OAB [1–9]. The genesis of Chhatre et al. BMC Urology (2018) 18:56 Page 5 of 7 Table 2 Overactive Bladder (OAB) Attitude (n = 104) Attitude items (%) Very likely Somewhat likely Neutral Somewhat Very Unlikely unlikely How likely are you to ask your doctor about OAB? 45.2 24.0 4.8 14.4 11.5 If you have OAB, how likely are you to seek treatment? 53.9 28.9 3.9 6.3 6.3 How likely will you research about OAB? 52.9 29.8 5.8 3.9 7.7 How likely are you to seek pharmacological (drug) treatment 7.7 33.7 10.6 25.9 22.2 for OAB? How likely are you to seek behavioral (such as Kegel exercise) 72.1 23.1 1.9 0.96 1.9 treatment for OAB? How likely are you to seek surgery for OAB? 3.9 9.6 11.5 25.0 50.0 How likely will you seek other medical treatment for OAB? 32.7 34.6 14.4 13.5 4.8 (e.g.acupuncture, yoga, meditation, herbal medicine, etc.) How likely will side effects of a treatment affect your decision 58.7 29.8 6.7 3.9 0.96 to seek treatment? What is the likelihood OAB is causing you embarrassment? 47.1 31.7 4.8 7.7 8.9 How likely will OAB affect your quality of life? 40.4 30.8 7.7 13.5 7.7 How likely will cost affect your decision to seek treatment 10.6 27.9 9.6 29.0 27.9 of OAB What is the likelihood that wearing pads for protection will 17.3 25.9 12.5 20.2 24.0 bother you? How likely will you simply ignore the OAB problem? 5.8 11.5 2.9 26.9 52.9 How likely will you be to support a public health campaign 65.4 25.9 4.8 2.9 0.96 about OAB awareness? How likely would you be to discuss OAB with friends and 49.0 37.5 3.9 6.7 2.9 family? How likely would you be to continue with OAB treatment 11.5 27.9 22.1 25.0 13.5 despite side effects? Total OAB attitude score (mean, std) 42.8 (±6.6) symptoms of OAB commonly is multi-factorial, and thus professional model that emerged from media representa- multimodal therapy that includes pharmacologic and tions of female urinary incontinence [18]. Despite a wide non-pharmacologic interventions may be necessary. variety of treatments for OAB, many women choose not to However, OAB remains underdiagnosed and undertreated. seek care [19–21]. Further exploration of the “disconnect” A Finnish study analyzed the effects of frequency of urinary between the experiences of women who live with urinary urgencyand urgeurinaryincontinenceonsymptom-related incontinence and common public views of female urinary bother, HRQoL, and the clinically meaningful prevalence of incontinence may lead to an increased appreciation and overactive bladder [17]. The study consisted of 6000 subjects understanding of these issues [22]. A mixed-methods study (age 18–79 years) randomly identified from the Finnish conducted needs assessment of OAB patients. Significant population register in 2003–2004, with 62.4% responding. time-gap was noted between the onset of OAB symptoms Urgency was reported by more than half, whereas urinary in- and diagnosis of OAB. This indicates need for better OAB continence was reported by 25.7% of women. It was con- screening and diagnosis [23]. cluded that increased severity of urgency and urinary Our results make important contribution to the exist- incontinence is associated with a statistically significant and ing research on OAB. Our cohort of women thought clinically important decrease in HRQoL. that OAB happens mostly in women. A large proportion Older age, genetics, female sex, pregnancy, childbirth, had heard of OAB and was aware of treatments options stress and extreme physical activity are generally perceived for OAB. Also, most agreed that treatment benefits out- as causes of OAB. Symptoms are under-reported in weigh its costs, however, only half said they were very women, mainly due to limited understanding of or appreci- likely to seek treatment for OAB. The women in our ation of the morbidity of the condition. Women tend to sample were more likely to seek behavioral treatment or think of OAB as normal part of aging and develop coping self-management for OAB than pharmacological treat- mechanisms, rather than seeking care [3]. The cultural ment. A large proportion of women thought that OAB model constructed by women differs significantly from the will likely cause stigma and affect quality of life. Chhatre et al. BMC Urology (2018) 18:56 Page 6 of 7 Table 3 ICIQ UI Short Form (n = 104) OAB knowledge and OAB attitude. While usually not life threatening, OAB has a significant negative impact on ICIQ items quality of life and can adversely affect self-esteem, result- How often do you leak urine? (%) ing in embarrassment, diminished social relations, sexual Never 26.9 satisfaction, professional and social life interactions, and About once a week or less 41.4 overall wellbeing [22–28]. 2–3 times a day 20.2 Our surveys must be refined for assessment among About once a day 7.7 different subpopulations based on age, gender, and func- Several times a day 3.9 tional status. Knowledge plays an important role in shaping a person’s attitude toward behavior, subjective All the time 0.0 norms, and perceived behavioral control. Our study pro- How much urine do you think usually leaks (whether you wear vides effect sizes for OAB knowledge, OAB attitude and protection or not)? (%) ICI UI scores. These effect sizes can form the basis for None 22.1 developing a fully powered trial to study the association A small amount 69.2 between OAB knowledge and attitude, type and length A moderate amount 8.7 of treatment, treatment compliance, and quality of life, A large amount 0.0 leading to interventions for enhancing OAB care. Overall, on a scale from zero to 10, where Mean = 1.8 (±2.3) zero is “not at all” and 10 is a “great deal”, Additional file How much does leaking urine interfere with your everyday life? Additional file 1: Appendix- OAB knowledge and attitude surveys. Total ICIQ score Mean = 6.6 (±3.3) (DOCX 25 kb) Does urine leak (% yes) Before you go to the toilet? 60.6 Funding Asellas Pharma, Inc. (US). When you cough or sneeze? 51.9 When you are asleep? 7.7 Authors’ contributions SC - Conception and design, Acquisition of data, Data analysis, Manuscript When you are physically active or 27.9 writing/editing. DKN - Manuscript writing/editing. AJW - Manuscript writing/ exercising? editing. AEJ - Data collection or management. JSS - Manuscript writing/ When you have finished urinating 14.4 editing. RJ - Obtaining funding, Conception and design, Acquisition of data, and are dressed? Data analysis, Manuscript writing/editing. All authors read and approved the final manuscript. For no obvious reason 16.4 All the time? 0.96 Ethics approval and consent to participate All procedures performed in studies involving human participants were in Never – urine does not leak 22.2 accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards. University of Pennsylvania’s We note following limitations to the study. First limita- Institutional Review Board has approved the protocol for this study. Informed consent: Informed consent was obtained from all individual participants tion is selection bias as participants were either included in the study. self-selected to enroll in a urinary incontinence prevention study or were selected from a large urban academic Competing interests The authors declare that they have no competing interests. healthcare system database. Hence, symptom severity of women in our cohort may not be representative of the general population of women with OAB. Participants were Publisher’sNote Springer Nature remains neutral with regard to jurisdictional claims in recruited via telephone during business hours and some published maps and institutional affiliations. of the focus groups also were held during those hours. As a result, the majority of those participated were retired, Author details Department of Psychiatry, Perelman School of Medicine, University of and older. Therefore, we may not have fully captured the Pennsylvania, 3535 Market St., Suite 4051, Philadelphia, PA 19104, USA. experiences of younger adult women with OAB or of men 2 Division of Urology, Department of Surgery, Perelman School of Medicine, with OAB. Additionally, the ICIQ-UI survey is not vali- University of Pennsylvania, Philadelphia, PA 19104, USA. Department of Medicine, Perelman School of Medicine, University of Pennsylvania, dated for telephone administration. Another limitation is Philadelphia, PA 19104, USA. Departments of Medicine and Health that of discrepancies and biases in qualitative data analysis. Management, Leonard Davis Institute of Health Economics, University of To minimize this, two investigators analyzed the data sep- Pennsylvania, Perelman School of Medicine and Wharton School of Business, Philadelphia, PA 19104, USA. Departments of Medicine and Surgery, arately. Finally, we did not collect information about Divisions of Geriatrics and Urology, Perelman School of Medicine Leonard length of OAB treatment, or treatment compliance that Davis Institute of Health Economics, University of Pennsylvania, Philadelphia, may affect overall association between treatment status, PA 19104, USA. Chhatre et al. BMC Urology (2018) 18:56 Page 7 of 7 Received: 7 March 2017 Accepted: 21 May 2018 27. Wennberg AL, et al. A longitudinal population-based survey of urinary incontinence, overactive bladder, and other lower urinary tract symptoms in women. Eur Urol. 2009;55:783–91. 28. Willis-Gray MG, Dieter AA, Geller EJ. Evaluation and management of overactive bladder: strategies for optimizing care. Research and Reports in References Urology. 2016;8:113–22. 1. Abrams P, et al. The standardization of terminology of lower urinary tract function: report from the standardization sub-committee of the international continence society. Neurourol Urodyn. 2002;21:167–78. 2. Stewart WF, et al. Prevalence and burden of overactive bladder in the United States. World J Urol. 2003;20:327–36. 3. Diokno AC, et al. Perceptions and behaviours of women with bladder control problems. Fam Pract. 2006;23(5):568–77. 4. Irwin DE, et al. Population-based survey of urinary incontinence, overactive bladder, and other lower urinary tract symptoms in five countries: results of the EPIC study. Eur Urol. 2006;50:1306–15. 5. Milsom I, et al. Global prevalence and economic burden of urgency urinary incontinence: a systematic review. Eur Urol. 2014;65:79–95. 6. Anger JT, et al. Health literacy and disease understanding among aging women with pelvic floor disorders. Female Pelvic Med Reconstr Surg. 2012;18(6):340–3. 7. Anger JT, et al. Women's experience with severe overactive bladder symptoms and treatment: insight revealed from patient focus groups. Neurourol Urodyn. 2011;30:1295–9. 8. Burgio KL, et al. Impact of behavior and lifestyle on bladder health. Int J Clin Pract. 2013;67(6):495–504. 9. Coyne KS, et al. The prevalence of lower urinary tract symptoms (LUTS) and overactive bladder (OAB) by racial/ethnic group and age: results from OAB-POLL. Neurourol Urodyn. 2013;32(3):230–7. 10. Ajen I. The theory of planned behavior. Organ Behav Hum Decis Process. 1991;50:179–211. 11. Gagnon L, Simard A, Tu L. Knowledge about urology in the general population: alarming results. Can Urol Assoc J. 2009;3(5):388–91. 12. Borenstein M, Hedges L.V, Higgins J.P.T, Rothstein H.R. Introduction to meta analysis. Chichester, UK: Wiley; 2009. 13. DeWalt DA, et al. Evaluation of item candidates: the PROMIS qualitative item review. Med Care. 2007;45:S12–21. 14. Morgan DL. Focus groups as qualitative research. California: Sage University Press; 2009. 15. Reeve BB, et al. Psychometric evaluation and calibration of health-related quality of life item banks: plans for the patient-reported outcomes measurement information system (PROMIS). 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BMC UrologySpringer Journals

Published: Jun 5, 2018

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