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Willingness to Participate in Home Screening for Urologic Cancers in the General Population: An Online Survey of Over 1400 Adults
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Willingness to Participate in Home Screening for Urologic Cancers in the General Population: An Online Survey of Over 1,400 Adults Kyle P. Tsai BA , Matthew T. Hudnall MD, MPH , Adam B. Weiner MD , Mary-Kate Keeter MS , Joshua J. Meeks MD, PhD PII: DOI: Reference:
S0090-4295(19)31053-2 https://doi.org/10.1016/j.urology.2019.11.028 URL 21880
To appear in:
Urology
Received date: Revised date: Accepted date:
10 September 2019 10 November 2019 19 November 2019
Please cite this article as: Kyle P. Tsai BA , Matthew T. Hudnall MD, MPH , Adam B. Weiner MD , Mary-Kate Keeter MS , Joshua J. Meeks MD, PhD , Willingness to Participate in Home Screening for Urologic Cancers in the General Population: An Online Survey of Over 1,400 Adults, Urology (2019), doi: https://doi.org/10.1016/j.urology.2019.11.028
This is a PDF file of an article that has undergone enhancements after acceptance, such as the addition of a cover page and metadata, and formatting for readability, but it is not yet the definitive version of record. This version will undergo additional copyediting, typesetting and review before it is published in its final form, but we are providing this version to give early visibility of the article. Please note that, during the production process, errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain. © 2019 Published by Elsevier Inc.
Title: Willingness to Participate in Home Screening for Urologic Cancers in the General Population: An Online Survey of Over 1,400 Adults Running head: Hematuria screening Authors: Kyle P. Tsai, BA1*; Matthew T. Hudnall, MD, MPH1*, Adam B. Weiner, MD1; Mary-Kate Keeter, MS1; Joshua J. Meeks, MD, PhD1,2 Author Affiliations: 1 Department of Urology, Northwestern University Feinberg School of Medicine, Chicago, IL 2 Jesse Brown VA Medical Center, Chicago, IL *Contributed equally Author emails: Kyle P. Tsai, BA – [email protected] Matthew T. Hudnall, MD – [email protected] Adam B. Weiner, MD – [email protected] Mary-Kate Keeter, MS - [email protected] Joshua J. Meeks, MD, PhD – [email protected] Corresponding Author Information: Mail: Joshua J. Meeks 676 N. St Clair St. Arkes 23-028 Chicago, IL 60611 +1 312.503.5359 office +1 312.908.7275 fax Email: [email protected] Abstract Word Count: 232/250 Text Word Count: 2,545 Tables: 2 Figures: 2 Supporting information: 3 tables, 1 appendix Key words: urinary bladder neoplasm; early detection of cancer; hematuria; decision support techniques; surveys and questionnaires Funding: None Conflicts of interest: The authors have no conflicts of interest Acknowledgment None
Abstract Objectives: To assess willingness of adults to undergo home screening for urologic cancers via urine dipstick and determine the effect of an educational pamphlet on hematuria on screening willingness and knowledge of hematuria.
Materials and Methods: We performed an online survey of adult volunteers throughout the United States from September 25, 2018 to October 15, 2018. The primary outcome was pre-test willingness to undergo home screening for hematuria with urine dipstick (4 or 5 out of 5-point Likert). Secondary outcomes included changes in willingness to screen and knowledge on hematuria after exposure to an educational pamphlet.
Results: Of 1442 participants, 54% were male and 87% were White. Median age was 48. Pretest willingness to home screen was high (90%). Older age was associated with an increased willingness to screen (per 10-year increase: odds ratio [OR] 1.47, 95% confidence interval [CI] 1.28-1.68, p<0.001). Participants who had not previously discussed hematuria with a health care provider were less willing to screen (OR 0.50, 95% CI 0.27-0.94, p=0.033). Patients with risk factors for urologic cancers (i.e. smoking and occupational exposures) were equally willing to screen. After pamphlet exposure hematuria knowledge increased (p<0.001) while willingness to screen did not change (p=0.15).
Conclusions: Willingness to perform home-based screening for urologic cancers by assessing for hematuria is high in an adult population, including those with risk factors. Knowledge of hematuria improves significantly after exposure to an educational pamphlet.
Introduction Hematuria can be associated with malignant and non-malignant conditions including kidney stones, urinary tract infections or inflammation, kidney and bladder cancers. Of these, the most life-threatening is bladder cancer which accounted for nearly 200,000 deaths globally in 2018.1 Small trials have compared screening to evaluation on presentation of symptoms and have demonstrated increased detection of early stage tumors with a significant survival benefit compared to those treated with symptomatic tumors.2-4 While the Unites States Preventive Services Task Force guidelines do not support routine screening for bladder cancer by assessing for hematuria in the general US population, a high-risk population may benefit from screening.5,6 Cost-effectiveness and treatment outcomes may be improved by detecting asymptomatic microhematuria in specific high-risk populations, leading to earlier diagnoses of bladder cancer.7 Thus, a large hematuria screening trial including patients with risk factors for urologic cancers (smoking or occupational exposures) may replicate the success of the National Lung Cancer Screening Trial.8
An important, and unappreciated feature of screening is the patient knowledge and perception of screening. In a vignette-based study, Banks et al. found that 87% of patients would be willing to undergo invasive testing for cancer if their risk of cancer was at least 1% and increased as the risk increased.9 In the case of asymptomatic microscopic hematuria, which is often intermittent, repeated home screening has been shown to reduce the incidence of invasive and high grade bladder cancer.4 Little is known about general willingness to undergo screening for urologic cancers via home-based hematuria evaluation.
We used an online survey to examine the willingness of an adult population to participate in home screening for hematuria with urine dipstick and evaluate knowledge about the causes of
and risk factors for hematuria. We also determined the effect of an educational pamphlet about hematuria on willingness to participate in home-based screening and hematuria knowledge.
Materials and Methods
Educational pamphlet and survey The educational pamphlet on hematuria was published by the Urology Care Foundation, the official foundation of the American Urological Association, and is used to educate readers about hematuria types, causes, and potential associated diagnoses. The pamphlet is readily available and free online (available at http://www.urologyhealth.org/educational-materials/hematuria), reflecting what real patients or family members may access in clinical scenarios.
We developed pre-pamphlet (pre-test) and post-pamphlet (post-test) surveys (Appendix). Pretest questions gathered demographic information, including common risk factors associated with hematuria and associated comorbid conditions. Pre-test and post-test survey questions assessed willingness to participate in home hematuria screening using a 5-point Likert scale. Other questions evaluated knowledge of the definition, causes, and risk factors for hematuria. We also asked about potential barriers to home hematuria screening if subjects were “unwilling” to participate in screening. Prior to the post-test survey, participants were offered a webpage link to the Urology Care Foundation educational pamphlet and instructed to take as much time as they needed to review the information.
Study participants and design We obtained Internal Review Board approval by Northwestern University (STU00208264). Using ResearchMatch (https://researchmatch.org/), an online national research study recruitment registry, we distributed the survey and educational pamphlet anonymously to male and female volunteers 18 years or older throughout the United States.10 Surveys and pamphlets were distributed using REDCap, an online survey data storage and management application.11 The survey was open from September 25, 2018 to October 15, 2018. Participants were invited
in small batches randomly selected from the ResearchMatch population cohort with the invite reading: “Researchers at Northwestern University are seeking to explore male and female understanding and perception of urine dipstick testing for hematuria. We are inviting all men and women over the age of 18 who live in the U.S. to participate in this study.” A total of 1,862 expressed interest in participating. Of these, 1,442 (77%) completed the survey and were included in the final cohort.
Outcomes The primary study outcome was the baseline willingness to undergo routine home hematuria screening with urine dipstick. This was assessed by asking participants, “Hematuria is detected through a simple urine test. On a scale of 1-5, with 1 being very unwilling and 5 being very willing, how willing are you to urinate on a small piece of paper and mail it to a lab to check for hematuria?” A score of 4 or 5 was considered “willing.” A follow up question was presented for participants that rated the previous question a 3 or less, asking for the reason they would not want to participate in home hematuria screening. Possible responses included “The testing process sounds like too much extra work,” “I do not think checking for hematuria is important,” “Doing a urine test at home sounds unpleasant,” “I do not trust mailing my urine test into a lab,” and “I would rather be checked for hematuria when I come to my caregiver’s office.” An option was also provided for free-text response.
Secondary outcomes included change in the willingness to participate in home hematuria screening and changes in knowledge about hematuria definition, causes, and risk factors after exposure to the educational pamphlet. Knowledge of the definition of hematuria was assessed by presenting various definitions and asking participants to select the single correct definition (“when there is blood in the urine even if it requires a microscope to see the red blood cells”). Knowledge of the causes and risk factors of hematuria was assessed by presenting possible
causes and risk factors and asking participants to select all the correct answers. Potential causes of hematuria presented included infection, kidney stones, trauma, cancer, and diet, of which infection, kidney stones, trauma, and cancer were considered correct answers. Potential risk factors for hematuria presented included high cholesterol diet, cigarette smoking, chemical exposure, radiation exposure, and urinary tract infection (UTI), of which smoking, chemical and radiation exposure, and UTI were considered correct answers. 1 point was scored for each correct answer, and 1 point subtracted for an incorrect answer. No points were given if “unsure” was selected. The highest possible score was 4 points. Pre-test and post-test scores were compared to assess change.
Covariates All covariates used in multivariable models were selected a priori. Participant characteristics included in the multivariable analyses were age, race and ethnicity (non-Hispanic White versus Non-White), gender, highest education attainment, military status, smoking status, occupational exposure, previous history of cancer, and whether or not a physician had previously discussed hematuria with them.
Statistical analysis We used the paired t-tests to compare changes in pre-test and post-test responses and multivariable logistic regression analyses to evaluate the association between baseline participant characteristics and pre-test willingness to undergo home hematuria screening via urine dipstick. Subgroup analyses were based on hematuria guidelines from North American and Europe that listed relevant urologic cancer risk factors.12-15 Multivariable logistic regressions were also done to determine the effect of participant characteristics on pre-test knowledge of the definition of hematuria. We considered p <0.05 to be statistically significant. All statistical analyses were 2-tailed and performed with Stata 13.0.
Results Participant baseline characteristics Of the final cohort of 1,442 participants, 780 (54%) were men, 1,250 (87%) were white, and the median age was 48 years (Supplemental Table 1). About 41% had a post-graduate degree, and 12.6% had some form of military service with 24% of veterans having previous exposure to combat. Most patients had a risk factor for hematuria. Of the entire cohort, 395 (27%) were past smokers, 150 (10%) were current smokers. Almost 40% of current smokers smoked about a pack or more a day. In addition, 604 (42%) participants reported work-related chemical exposure (chemicals 35%, fumes 27.8%, biologic agents 18.3%, radiation 15%, or heavy metals 10.1%), and 45% had a history of previous urinary tract infection. A total of 183 (13%) of participants had a prior diagnosis of cancer. Only 17% (n=251) of participants had previously discussed “hematuria” with a physician or healthcare provider.
Willingness to undergo home hematuria screening At baseline, 1,293 (90%) participants were willing to undergo home hematuria screening (score of 4 or 5 out of 5; Figures 1 and 2). Relevant subgroups including older patients, smokers, and patients with occupational exposures demonstrated similarly high willingness (Figure 1). Older age was associated with an increased pre-test willingness to screen (per 10-year increase: odds ratio [OR] 1.47, 95% confidence interval [CI] 1.28-1.68, p<0.001). Participants who had not previously discussed hematuria with a health care provider were less willing to screen (OR 0.50, 95% CI 0.27-0.94, p=0.033). Risk factors for bladder cancer (i.e. smoking and occupational exposures) did not impact willingness (Table 1). Other demographic factors such as gender, race, education, and military service also did not significantly impact willingness to screen. For participants who had a low willingness to screen, the most common reason given was a preference for performing hematuria testing at a health care provider’s office (60% of the 149 low willingness participants, Table 2).
After exposure to the educational pamphlet, the number of participants willing to undergo home hematuria screening did not change significantly (n=1,315, 91%; p=0.15; Figure 2). Postpamphlet exposure, older age (per 10-year increase: OR 1.43, 95% CI 1.24-1.65, p<0.001) and occupational exposures (OR 1.58, 95% CI 1.05-2.37, p=0.028) were associated with an increased post-test willingness to screen. No other covariates were statistically significant, including smoking history (Supplemental Table 2).
Knowledge of hematuria definition, causes, and risk factors At baseline, 664 (46%) participants selected the correct answer for the definition of hematuria while 543 (38%) participants were “unsure” (Figure 2). In multivariable logistic regression, female gender and education of college level or greater were associated with selection of the correct definition of hematuria prior to pamphlet exposure, while participants without a prior history of UTI and those who had not previously discussed hematuria with a health care provider were less likely to select the correct definition (Supplemental Table 3). After exposure to the educational pamphlet, 1166 (81%) participants selected the correct answer for the definition of hematuria (Change=+34.9%, p<0.001) while 84 (6%) participants remained “unsure”
Baseline score for correct causes of hematuria was 2.3 out of 4, with 496 (34.4%) participants indicating they were “unsure.” 272 (18.9%) participants thought hematuria was caused by diet (Figure 2). After exposure to the educational pamphlet, mean score improved to 3.1 out of 4 (p<0.001), with only 80 (5.5%) participants indicating they were “unsure.” 308 (21.4%) participants incorrectly thought that hematuria was caused by diet despite pamphlet exposure.
Baseline score for knowledge of risk factors of hematuria was 1.8 out of 4, with 575 (39.9%) participants indicating they were “unsure” of the causes of hematuria and 192 (13%) stating that high cholesterol diet was associated with hematuria (Figure 2). After exposure to the educational pamphlet, mean score improved to 3.3 out of 4 (p<0.001), with 96 (6.7%) participants indicating they were “unsure.” 271 participants (18.8%) incorrectly selected high cholesterol diet as a risk factor for hematuria despite pamphlet exposure.
Comment Hematuria caused by a serious underlying condition such as urologic cancers can be intermittent, making practical screening with microscopic urinalysis time-consuming and challenging.2 Repeated home-based screening is one option that has previously been shown to reduce the incidence of advanced bladder cancer.3,4 However, the willingness of patients at risk for urologic cancers to undergo this form of screening is unknown. Our large, online survey found a high degree of willingness among an adult population to perform home-based screening for hematuria. Additionally, participants with risk factors for urologic cancers and hematuria were just as likely to undergo screening. An information pamphlet on hematuria was able to improve participant knowledge of hematuria and was associated with increases in willingness to screen in older study participants with occupational exposures.
While the most effective methods for detecting early stage urologic cancers are of interest to clinicians, there are sparse data on patient perception and understanding of screening for urologic cancer by assessing for hematuria and methods for screening. Our online survey assessed baseline willingness to undergo home hematuria screening as well as baseline knowledge of the definition, causes, and risk factors for hematuria, and compared these results to willingness and knowledge after exposure to an educational pamphlet about hematuria published by the Urology Care Foundation. Our results suggest in an adult population the baseline willingness to undergo home urine dipstick screening is quite high and does not change significantly after reading the pamphlet. One explanation for this finding may be that participants see urine screening as a simple and benign test requiring minimal effort or invasiveness. The effect of specific education regarding the potential healthcare costs of routine hematuria screening and the risks of cancer screening and overdiagnosis and overtreatment were not assessed in this study but may impact willingness to screen. Nonetheless, the high
willingness to screen suggests that incorporating routine home-based hematuria screening may be feasible and well-tolerated in a targeted adult population.
Participants who were older had higher willingness to be screened than participants who were younger. This may reflect older participants’ experience or acceptance of paternalistic practices regarding health issues compared to younger participants who may be less concerned with health care screening tests in general. Importantly, having risk factors for bladder cancer (i.e. smoking, occupational exposure) did not significantly impact willingness to screen prior to pamphlet exposure. After pamphlet exposure, the negligible impact of smoking status on willingness to screen persisted, despite smoking being one of the most common risk factors for urologic malignancy. This may be reflective of the already high willingness to screen in the survey population. Older patients and those with occupational exposures, however, were more willing to undergo home-based screening.
Our results show participants who had not discussed hematuria with a healthcare provider had lower willingness to screen than those whose provider had discussed hematuria with them prior. This suggests healthcare providers play a valuable role in educating their patients and promoting screening in those who are at higher risk. While the educational pamphlet did not significantly increase willingness to screen, it did improve knowledge of hematuria. These results suggest an easily accessible, online, 2-page informational pamphlet can lead to demonstrable improvement in health literacy in an adult population, especially with regards to hematuria.
Our study has limitations. Our final participation rate was moderate at 77%. Participant dropout may occur due to technical difficulties of opening and closing the survey, which is likely a function of participant computing and internet skills. Participants largely had at least college
educations (73%), were predominantly White (87%), and the average age was 48 years. These characteristics may not be representative a more generalized population and thus may bias our assessment of willingness to participate in hematuria screening. Given the average age for participants was 48 years and over 40% reported a relevant occupational exposure, the results of our survey, may be more generalizable to a higher risk patient population. Additionally, while survey assessed for hematuria screening willingness, it did not assess for willingness to participate in confirmatory testing (microscopic urine analysis) or follow-up hematuria evaluations (cystoscopy, imaging, etc.). While participants could have been from any region within the United States, this characteristic and the association of this characteristic with outcomes was not assessed. Finally, our survey responses were not conducted within the setting of a healthcare encounter, which may have a differential effect on medical knowledge and patient willingness to screen.
Conclusions In an online survey of an adult population, willingness to participate in home-based screening for urologic cancer by assessing for hematuria is high, including among those with risk factors. An educational pamphlet improves knowledge of the definition, risk factors, and causes of hematuria and may play a valuable role in educating patients and their families. These informational tools may be used to successfully promote hematuria screening in high-risk populations.
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Messing EM, Young TB, Hunt VB, Gilchrist KW, Newton MA, Bram LL, Hisgen WJ, Greenberg EB, Kuglitsch ME and Wegenke JD: Comparison of bladder cancer outcome in men undergoing hematuria home screening versus those with standard clinical presentations. Urology. 45: 387-96; discussion 396-7, 1995.
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Moyer VA: Screening for Bladder Cancer: U.S. Preventive Services Task Force Recommendation Statement (vol 155, pg 246, 2011). Annals of Internal Medicine. 155: 408-408, 2011.
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Fradet Y: Screening for bladder cancer, evaluation of hematuria and urinary markers: current and future. Bju International. 101: 44-44, 2008.
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Withdrawal of Ursodeoxycholic Acid in Pediatric Primary Sclerosing Cholangitis (Psc). Gastroenterology. 154: S1209-S1209, 2018. 9.
Banks J, Hollinghurst S, Bigwood L, Peters TJ, Walter FM and Hamilton W: Preferences for cancer investigation: a vignette-based study of primary-care attendees. Lancet Oncology. 15: 232-240, 2014.
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van der Molen AJ and Hovius MC: Hematuria: a problem-based imaging algorithm illustrating the recent Dutch guidelines on hematuria. AJR Am J Roentgenol. 198: 125665, 2012.
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Kassouf W, Aprikian A, Black P, Kulkarni G, Izawa J, Eapen L, Fairey A, So A, North S, Rendon R et al.: Recommendations for the improvement of bladder cancer quality of care in Canada: A consensus document reviewed and endorsed by Bladder Cancer Canada (BCC), Canadian Urologic Oncology Group (CUOG), and Canadian Urological Association (CUA), December 2015. Can Urol Assoc J. 10: E46-80, 2016.
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Figure legends
Figure 1: Subgroup analyses of baseline willingness to undergo home screening for hematuria Error bar represents upper bound of 95% confidence interval
Figure 2: Impact of a hematuria educational pamphlet For causes and risk factors for hematuria, 1 point was scored for each correct answer, and 1 point subtracted for an incorrect answer. No points were given if "unsure" was selected, and the highest possible score was 4 points.
Table 1: Multivariable logistic regression for willingness to do home screening for hematuria prior to pamphlet exposure. Covariate OR (95% CI) p Gender Male Reference Female 0.88 (0.57-1.37) 0.6 Other 0.77 (0.09-6.90) 0.8 Age (per 10 year increase) 1.47 (1.28-1.68) <0.001 Race White, non-Hispanic Reference Non-White 1.15 (0.70-1.90) 0.6 Education No college Reference Some college 1.40 (0.64-3.05) 0.4 Bachelors Degree 1.22 (0.58-2.58) 0.6 Graduate Degree 1.06 (0.50-2.25) 0.9 Smoker Never Reference Past 1.07 (0.68-1.69) 0.8 Current 0.82 (0.46-1.47) 0.5 Occupational exposures No Reference Yes 1.29 (0.89-1.87) 0.178 History of UTI Yes Reference No 0.77 (0.49-1.21) 0.3 Unsure 1.57 (0.45-5.48) 0.5 Military Service No Reference Yes 0.96 (0.49-1.89) 0.9 Physician Mention of Hematuria Yes Reference 0.50 (0.27-0.94) 0.033 No Unsure 0.42 (0.17-1.00) 0.050 History of Cancer No Reference Yes 0.65 (0.35-1.20) 0.173 Bolding indicates statistical significance Abbreviations: UTI, urinary tract infection; OR, odds ratio; CI, confidence interval
Table 2: Participant reasons selected for low willingness to perform home hematuria screening.
Reason All The testing process sounds like too much extra work. I do not think checking for hematuria is important. Doing a urine test at home sounds unpleasant. I do not trust mailing my urine test into a lab. I would rather be checked for hematuria when I come to my caregiver's office in person. Other
Pre-pamphlet n (%) 149 (100%) 32 (21%) 15 (10%) 16 (11%) 35 (23%)
Post-pamphlet n (%) 129 (100%) 27 (21%) 13 (10%) 17 (13%) 32 (25%)
90 (60%) 15 (10%)
81 (64%) 11 (9%)
Willingness to Participate in Home Screening for Urologic Cancers in the General Population: An Online Survey of Over 1,400 Adults Kyle P. Tsai BA , Matthew T. Hudnall MD, MPH , Adam B. Weiner MD , Mary-Kate Keeter MS , Joshua J. Meeks MD, PhD PII: DOI: Reference:
S0090-4295(19)31053-2 https://doi.org/10.1016/j.urology.2019.11.028 URL 21880
To appear in:
Urology
Received date: Revised date: Accepted date:
10 September 2019 10 November 2019 19 November 2019
Please cite this article as: Kyle P. Tsai BA , Matthew T. Hudnall MD, MPH , Adam B. Weiner MD , Mary-Kate Keeter MS , Joshua J. Meeks MD, PhD , Willingness to Participate in Home Screening for Urologic Cancers in the General Population: An Online Survey of Over 1,400 Adults, Urology (2019), doi: https://doi.org/10.1016/j.urology.2019.11.028
This is a PDF file of an article that has undergone enhancements after acceptance, such as the addition of a cover page and metadata, and formatting for readability, but it is not yet the definitive version of record. This version will undergo additional copyediting, typesetting and review before it is published in its final form, but we are providing this version to give early visibility of the article. Please note that, during the production process, errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain. © 2019 Published by Elsevier Inc.
Title: Willingness to Participate in Home Screening for Urologic Cancers in the General Population: An Online Survey of Over 1,400 Adults Running head: Hematuria screening Authors: Kyle P. Tsai, BA1*; Matthew T. Hudnall, MD, MPH1*, Adam B. Weiner, MD1; Mary-Kate Keeter, MS1; Joshua J. Meeks, MD, PhD1,2 Author Affiliations: 1 Department of Urology, Northwestern University Feinberg School of Medicine, Chicago, IL 2 Jesse Brown VA Medical Center, Chicago, IL *Contributed equally Author emails: Kyle P. Tsai, BA – [email protected] Matthew T. Hudnall, MD – [email protected] Adam B. Weiner, MD – [email protected] Mary-Kate Keeter, MS - [email protected] Joshua J. Meeks, MD, PhD – [email protected] Corresponding Author Information: Mail: Joshua J. Meeks 676 N. St Clair St. Arkes 23-028 Chicago, IL 60611 +1 312.503.5359 office +1 312.908.7275 fax Email: [email protected] Abstract Word Count: 232/250 Text Word Count: 2,545 Tables: 2 Figures: 2 Supporting information: 3 tables, 1 appendix Key words: urinary bladder neoplasm; early detection of cancer; hematuria; decision support techniques; surveys and questionnaires Funding: None Conflicts of interest: The authors have no conflicts of interest Acknowledgment None
Abstract Objectives: To assess willingness of adults to undergo home screening for urologic cancers via urine dipstick and determine the effect of an educational pamphlet on hematuria on screening willingness and knowledge of hematuria.
Materials and Methods: We performed an online survey of adult volunteers throughout the United States from September 25, 2018 to October 15, 2018. The primary outcome was pre-test willingness to undergo home screening for hematuria with urine dipstick (4 or 5 out of 5-point Likert). Secondary outcomes included changes in willingness to screen and knowledge on hematuria after exposure to an educational pamphlet.
Results: Of 1442 participants, 54% were male and 87% were White. Median age was 48. Pretest willingness to home screen was high (90%). Older age was associated with an increased willingness to screen (per 10-year increase: odds ratio [OR] 1.47, 95% confidence interval [CI] 1.28-1.68, p<0.001). Participants who had not previously discussed hematuria with a health care provider were less willing to screen (OR 0.50, 95% CI 0.27-0.94, p=0.033). Patients with risk factors for urologic cancers (i.e. smoking and occupational exposures) were equally willing to screen. After pamphlet exposure hematuria knowledge increased (p<0.001) while willingness to screen did not change (p=0.15).
Conclusions: Willingness to perform home-based screening for urologic cancers by assessing for hematuria is high in an adult population, including those with risk factors. Knowledge of hematuria improves significantly after exposure to an educational pamphlet.
Introduction Hematuria can be associated with malignant and non-malignant conditions including kidney stones, urinary tract infections or inflammation, kidney and bladder cancers. Of these, the most life-threatening is bladder cancer which accounted for nearly 200,000 deaths globally in 2018.1 Small trials have compared screening to evaluation on presentation of symptoms and have demonstrated increased detection of early stage tumors with a significant survival benefit compared to those treated with symptomatic tumors.2-4 While the Unites States Preventive Services Task Force guidelines do not support routine screening for bladder cancer by assessing for hematuria in the general US population, a high-risk population may benefit from screening.5,6 Cost-effectiveness and treatment outcomes may be improved by detecting asymptomatic microhematuria in specific high-risk populations, leading to earlier diagnoses of bladder cancer.7 Thus, a large hematuria screening trial including patients with risk factors for urologic cancers (smoking or occupational exposures) may replicate the success of the National Lung Cancer Screening Trial.8
An important, and unappreciated feature of screening is the patient knowledge and perception of screening. In a vignette-based study, Banks et al. found that 87% of patients would be willing to undergo invasive testing for cancer if their risk of cancer was at least 1% and increased as the risk increased.9 In the case of asymptomatic microscopic hematuria, which is often intermittent, repeated home screening has been shown to reduce the incidence of invasive and high grade bladder cancer.4 Little is known about general willingness to undergo screening for urologic cancers via home-based hematuria evaluation.
We used an online survey to examine the willingness of an adult population to participate in home screening for hematuria with urine dipstick and evaluate knowledge about the causes of
and risk factors for hematuria. We also determined the effect of an educational pamphlet about hematuria on willingness to participate in home-based screening and hematuria knowledge.
Materials and Methods
Educational pamphlet and survey The educational pamphlet on hematuria was published by the Urology Care Foundation, the official foundation of the American Urological Association, and is used to educate readers about hematuria types, causes, and potential associated diagnoses. The pamphlet is readily available and free online (available at http://www.urologyhealth.org/educational-materials/hematuria), reflecting what real patients or family members may access in clinical scenarios.
We developed pre-pamphlet (pre-test) and post-pamphlet (post-test) surveys (Appendix). Pretest questions gathered demographic information, including common risk factors associated with hematuria and associated comorbid conditions. Pre-test and post-test survey questions assessed willingness to participate in home hematuria screening using a 5-point Likert scale. Other questions evaluated knowledge of the definition, causes, and risk factors for hematuria. We also asked about potential barriers to home hematuria screening if subjects were “unwilling” to participate in screening. Prior to the post-test survey, participants were offered a webpage link to the Urology Care Foundation educational pamphlet and instructed to take as much time as they needed to review the information.
Study participants and design We obtained Internal Review Board approval by Northwestern University (STU00208264). Using ResearchMatch (https://researchmatch.org/), an online national research study recruitment registry, we distributed the survey and educational pamphlet anonymously to male and female volunteers 18 years or older throughout the United States.10 Surveys and pamphlets were distributed using REDCap, an online survey data storage and management application.11 The survey was open from September 25, 2018 to October 15, 2018. Participants were invited
in small batches randomly selected from the ResearchMatch population cohort with the invite reading: “Researchers at Northwestern University are seeking to explore male and female understanding and perception of urine dipstick testing for hematuria. We are inviting all men and women over the age of 18 who live in the U.S. to participate in this study.” A total of 1,862 expressed interest in participating. Of these, 1,442 (77%) completed the survey and were included in the final cohort.
Outcomes The primary study outcome was the baseline willingness to undergo routine home hematuria screening with urine dipstick. This was assessed by asking participants, “Hematuria is detected through a simple urine test. On a scale of 1-5, with 1 being very unwilling and 5 being very willing, how willing are you to urinate on a small piece of paper and mail it to a lab to check for hematuria?” A score of 4 or 5 was considered “willing.” A follow up question was presented for participants that rated the previous question a 3 or less, asking for the reason they would not want to participate in home hematuria screening. Possible responses included “The testing process sounds like too much extra work,” “I do not think checking for hematuria is important,” “Doing a urine test at home sounds unpleasant,” “I do not trust mailing my urine test into a lab,” and “I would rather be checked for hematuria when I come to my caregiver’s office.” An option was also provided for free-text response.
Secondary outcomes included change in the willingness to participate in home hematuria screening and changes in knowledge about hematuria definition, causes, and risk factors after exposure to the educational pamphlet. Knowledge of the definition of hematuria was assessed by presenting various definitions and asking participants to select the single correct definition (“when there is blood in the urine even if it requires a microscope to see the red blood cells”). Knowledge of the causes and risk factors of hematuria was assessed by presenting possible
causes and risk factors and asking participants to select all the correct answers. Potential causes of hematuria presented included infection, kidney stones, trauma, cancer, and diet, of which infection, kidney stones, trauma, and cancer were considered correct answers. Potential risk factors for hematuria presented included high cholesterol diet, cigarette smoking, chemical exposure, radiation exposure, and urinary tract infection (UTI), of which smoking, chemical and radiation exposure, and UTI were considered correct answers. 1 point was scored for each correct answer, and 1 point subtracted for an incorrect answer. No points were given if “unsure” was selected. The highest possible score was 4 points. Pre-test and post-test scores were compared to assess change.
Covariates All covariates used in multivariable models were selected a priori. Participant characteristics included in the multivariable analyses were age, race and ethnicity (non-Hispanic White versus Non-White), gender, highest education attainment, military status, smoking status, occupational exposure, previous history of cancer, and whether or not a physician had previously discussed hematuria with them.
Statistical analysis We used the paired t-tests to compare changes in pre-test and post-test responses and multivariable logistic regression analyses to evaluate the association between baseline participant characteristics and pre-test willingness to undergo home hematuria screening via urine dipstick. Subgroup analyses were based on hematuria guidelines from North American and Europe that listed relevant urologic cancer risk factors.12-15 Multivariable logistic regressions were also done to determine the effect of participant characteristics on pre-test knowledge of the definition of hematuria. We considered p <0.05 to be statistically significant. All statistical analyses were 2-tailed and performed with Stata 13.0.
Results Participant baseline characteristics Of the final cohort of 1,442 participants, 780 (54%) were men, 1,250 (87%) were white, and the median age was 48 years (Supplemental Table 1). About 41% had a post-graduate degree, and 12.6% had some form of military service with 24% of veterans having previous exposure to combat. Most patients had a risk factor for hematuria. Of the entire cohort, 395 (27%) were past smokers, 150 (10%) were current smokers. Almost 40% of current smokers smoked about a pack or more a day. In addition, 604 (42%) participants reported work-related chemical exposure (chemicals 35%, fumes 27.8%, biologic agents 18.3%, radiation 15%, or heavy metals 10.1%), and 45% had a history of previous urinary tract infection. A total of 183 (13%) of participants had a prior diagnosis of cancer. Only 17% (n=251) of participants had previously discussed “hematuria” with a physician or healthcare provider.
Willingness to undergo home hematuria screening At baseline, 1,293 (90%) participants were willing to undergo home hematuria screening (score of 4 or 5 out of 5; Figures 1 and 2). Relevant subgroups including older patients, smokers, and patients with occupational exposures demonstrated similarly high willingness (Figure 1). Older age was associated with an increased pre-test willingness to screen (per 10-year increase: odds ratio [OR] 1.47, 95% confidence interval [CI] 1.28-1.68, p<0.001). Participants who had not previously discussed hematuria with a health care provider were less willing to screen (OR 0.50, 95% CI 0.27-0.94, p=0.033). Risk factors for bladder cancer (i.e. smoking and occupational exposures) did not impact willingness (Table 1). Other demographic factors such as gender, race, education, and military service also did not significantly impact willingness to screen. For participants who had a low willingness to screen, the most common reason given was a preference for performing hematuria testing at a health care provider’s office (60% of the 149 low willingness participants, Table 2).
After exposure to the educational pamphlet, the number of participants willing to undergo home hematuria screening did not change significantly (n=1,315, 91%; p=0.15; Figure 2). Postpamphlet exposure, older age (per 10-year increase: OR 1.43, 95% CI 1.24-1.65, p<0.001) and occupational exposures (OR 1.58, 95% CI 1.05-2.37, p=0.028) were associated with an increased post-test willingness to screen. No other covariates were statistically significant, including smoking history (Supplemental Table 2).
Knowledge of hematuria definition, causes, and risk factors At baseline, 664 (46%) participants selected the correct answer for the definition of hematuria while 543 (38%) participants were “unsure” (Figure 2). In multivariable logistic regression, female gender and education of college level or greater were associated with selection of the correct definition of hematuria prior to pamphlet exposure, while participants without a prior history of UTI and those who had not previously discussed hematuria with a health care provider were less likely to select the correct definition (Supplemental Table 3). After exposure to the educational pamphlet, 1166 (81%) participants selected the correct answer for the definition of hematuria (Change=+34.9%, p<0.001) while 84 (6%) participants remained “unsure”
Baseline score for correct causes of hematuria was 2.3 out of 4, with 496 (34.4%) participants indicating they were “unsure.” 272 (18.9%) participants thought hematuria was caused by diet (Figure 2). After exposure to the educational pamphlet, mean score improved to 3.1 out of 4 (p<0.001), with only 80 (5.5%) participants indicating they were “unsure.” 308 (21.4%) participants incorrectly thought that hematuria was caused by diet despite pamphlet exposure.
Baseline score for knowledge of risk factors of hematuria was 1.8 out of 4, with 575 (39.9%) participants indicating they were “unsure” of the causes of hematuria and 192 (13%) stating that high cholesterol diet was associated with hematuria (Figure 2). After exposure to the educational pamphlet, mean score improved to 3.3 out of 4 (p<0.001), with 96 (6.7%) participants indicating they were “unsure.” 271 participants (18.8%) incorrectly selected high cholesterol diet as a risk factor for hematuria despite pamphlet exposure.
Comment Hematuria caused by a serious underlying condition such as urologic cancers can be intermittent, making practical screening with microscopic urinalysis time-consuming and challenging.2 Repeated home-based screening is one option that has previously been shown to reduce the incidence of advanced bladder cancer.3,4 However, the willingness of patients at risk for urologic cancers to undergo this form of screening is unknown. Our large, online survey found a high degree of willingness among an adult population to perform home-based screening for hematuria. Additionally, participants with risk factors for urologic cancers and hematuria were just as likely to undergo screening. An information pamphlet on hematuria was able to improve participant knowledge of hematuria and was associated with increases in willingness to screen in older study participants with occupational exposures.
While the most effective methods for detecting early stage urologic cancers are of interest to clinicians, there are sparse data on patient perception and understanding of screening for urologic cancer by assessing for hematuria and methods for screening. Our online survey assessed baseline willingness to undergo home hematuria screening as well as baseline knowledge of the definition, causes, and risk factors for hematuria, and compared these results to willingness and knowledge after exposure to an educational pamphlet about hematuria published by the Urology Care Foundation. Our results suggest in an adult population the baseline willingness to undergo home urine dipstick screening is quite high and does not change significantly after reading the pamphlet. One explanation for this finding may be that participants see urine screening as a simple and benign test requiring minimal effort or invasiveness. The effect of specific education regarding the potential healthcare costs of routine hematuria screening and the risks of cancer screening and overdiagnosis and overtreatment were not assessed in this study but may impact willingness to screen. Nonetheless, the high
willingness to screen suggests that incorporating routine home-based hematuria screening may be feasible and well-tolerated in a targeted adult population.
Participants who were older had higher willingness to be screened than participants who were younger. This may reflect older participants’ experience or acceptance of paternalistic practices regarding health issues compared to younger participants who may be less concerned with health care screening tests in general. Importantly, having risk factors for bladder cancer (i.e. smoking, occupational exposure) did not significantly impact willingness to screen prior to pamphlet exposure. After pamphlet exposure, the negligible impact of smoking status on willingness to screen persisted, despite smoking being one of the most common risk factors for urologic malignancy. This may be reflective of the already high willingness to screen in the survey population. Older patients and those with occupational exposures, however, were more willing to undergo home-based screening.
Our results show participants who had not discussed hematuria with a healthcare provider had lower willingness to screen than those whose provider had discussed hematuria with them prior. This suggests healthcare providers play a valuable role in educating their patients and promoting screening in those who are at higher risk. While the educational pamphlet did not significantly increase willingness to screen, it did improve knowledge of hematuria. These results suggest an easily accessible, online, 2-page informational pamphlet can lead to demonstrable improvement in health literacy in an adult population, especially with regards to hematuria.
Our study has limitations. Our final participation rate was moderate at 77%. Participant dropout may occur due to technical difficulties of opening and closing the survey, which is likely a function of participant computing and internet skills. Participants largely had at least college
educations (73%), were predominantly White (87%), and the average age was 48 years. These characteristics may not be representative a more generalized population and thus may bias our assessment of willingness to participate in hematuria screening. Given the average age for participants was 48 years and over 40% reported a relevant occupational exposure, the results of our survey, may be more generalizable to a higher risk patient population. Additionally, while survey assessed for hematuria screening willingness, it did not assess for willingness to participate in confirmatory testing (microscopic urine analysis) or follow-up hematuria evaluations (cystoscopy, imaging, etc.). While participants could have been from any region within the United States, this characteristic and the association of this characteristic with outcomes was not assessed. Finally, our survey responses were not conducted within the setting of a healthcare encounter, which may have a differential effect on medical knowledge and patient willingness to screen.
Conclusions In an online survey of an adult population, willingness to participate in home-based screening for urologic cancer by assessing for hematuria is high, including among those with risk factors. An educational pamphlet improves knowledge of the definition, risk factors, and causes of hematuria and may play a valuable role in educating patients and their families. These informational tools may be used to successfully promote hematuria screening in high-risk populations.
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Figure legends
Figure 1: Subgroup analyses of baseline willingness to undergo home screening for hematuria Error bar represents upper bound of 95% confidence interval
Figure 2: Impact of a hematuria educational pamphlet For causes and risk factors for hematuria, 1 point was scored for each correct answer, and 1 point subtracted for an incorrect answer. No points were given if "unsure" was selected, and the highest possible score was 4 points.
Table 1: Multivariable logistic regression for willingness to do home screening for hematuria prior to pamphlet exposure. Covariate OR (95% CI) p Gender Male Reference Female 0.88 (0.57-1.37) 0.6 Other 0.77 (0.09-6.90) 0.8 Age (per 10 year increase) 1.47 (1.28-1.68) <0.001 Race White, non-Hispanic Reference Non-White 1.15 (0.70-1.90) 0.6 Education No college Reference Some college 1.40 (0.64-3.05) 0.4 Bachelors Degree 1.22 (0.58-2.58) 0.6 Graduate Degree 1.06 (0.50-2.25) 0.9 Smoker Never Reference Past 1.07 (0.68-1.69) 0.8 Current 0.82 (0.46-1.47) 0.5 Occupational exposures No Reference Yes 1.29 (0.89-1.87) 0.178 History of UTI Yes Reference No 0.77 (0.49-1.21) 0.3 Unsure 1.57 (0.45-5.48) 0.5 Military Service No Reference Yes 0.96 (0.49-1.89) 0.9 Physician Mention of Hematuria Yes Reference 0.50 (0.27-0.94) 0.033 No Unsure 0.42 (0.17-1.00) 0.050 History of Cancer No Reference Yes 0.65 (0.35-1.20) 0.173 Bolding indicates statistical significance Abbreviations: UTI, urinary tract infection; OR, odds ratio; CI, confidence interval
Table 2: Participant reasons selected for low willingness to perform home hematuria screening.
Reason All The testing process sounds like too much extra work. I do not think checking for hematuria is important. Doing a urine test at home sounds unpleasant. I do not trust mailing my urine test into a lab. I would rather be checked for hematuria when I come to my caregiver's office in person. Other
Pre-pamphlet n (%) 149 (100%) 32 (21%) 15 (10%) 16 (11%) 35 (23%)
Post-pamphlet n (%) 129 (100%) 27 (21%) 13 (10%) 17 (13%) 32 (25%)
90 (60%) 15 (10%)
81 (64%) 11 (9%)