Closing the referral gap: The role of a quality improvement initiative to enhance pelvic health physical therapy referrals for persons with multiple sclerosis

Abstract

Background

Multiple sclerosis (MS)–related bladder dysfunction (BD) affects up to 80% of people with MS (PwMS) and substantially impacts mobility, safety, and quality of life. Pelvic Health Physical Therapy (PHPT) is an evidence-based, noninvasive treatment for MS-related BD. This retrospective study compared screening and PHPT referral rates at two time points to evaluate longitudinal changes in BD management.

Methods

Data were analyzed from two prospective studies (2015 and 2023) enrolling adults with MS from a large subspecialty outpatient clinic. Bladder dysfunction–specific patient-reported outcomes, clinic notes, treatment plans, and referral histories were assessed at baseline, 6 and 12 months. Between 2015 and 2023, many BD-targeted changes were made, including a quality improvement initiative and embedding a physical therapist in the MS-clinic.

Results

The 2015 (N = 65) and 2023 (N = 80) cohorts were similar in demographics, MS duration, and Expanded Disability Status Scale. Bladder dysfunction prevalence was comparable (84% of 2015; 94% in 2023). However, BD-related care increased significantly in 2023: BD-specific treatment plans doubled, and PHPT referrals increased by 100%.

Conclusion

Greater BD treatment utilization and PHPT referrals likely reflect increased awareness of BD management and expanded system capacity. Further evaluation of PHPT practices and quality improvement efforts is needed to identify the most influential contributors of increasing BD-specific treatment in PwMS.

Keywords

Multiple sclerosis bladder dysfunction Pelvic Health Physical Therapy quality improvement

Introduction

Bladder dysfunction (BD) is one of the most common symptoms reported by people living with multiple sclerosis (MS), with over 80% experiencing BD within 10 years of disease onset.^1–4 Bladder dysfunction in people with MS (PwMS) includes voiding (urgency, incontinence, and nocturia), and storage (retention, frequency, and incomplete bladder emptying) impairment.^1,3,5 Bladder dysfunction negatively impacts health across a number of domains. It is linked to lower quality of life (QOL), even when overall disability (Expanded Disability Status Scale, EDSS) is low.^6,7 Bladder dysfunction can lead to fear of falls and more frequent falls when hurrying to reach the bathroom.^6,8 Combined with societal stigma and anxiety about restroom access, BD contributes to reduced mobility outside the home that, in turn, worsens disease burden and limits participation in daily life.^9,10

Despite the high prevalence and impact of BD on PwMS, bladder symptoms often go undetected and unrecognized.^9–11 Unlike more outwardly visible neurologic symptoms such as gait impairment, BD typically manifests as a “silent” symptom that may not be as evident to others without deeper questioning. Barriers to treatment include patient embarrassment and limited awareness of available interventions, in addition to clinician-related factors such as inadequate BD-specific training, knowledge gaps, and time limitations.^9,12,13

One of the most effective, evidence-based, and less-invasive options for MS-related BD is Pelvic Health Physical Therapy (PHPT).^5,14,15 PHPT reduces storage and voiding symptoms, leakage volume, and urinary incontinence severity while improving subjective bladder symptoms in both male and female PwMS.^14,16,17 However, PHPT is a newer field of physical therapy, and both patients with neurological disorders and physicians often lack awareness of its existence, applications, and benefits and may not have established referral pathways to access PHPT.¹⁷

The purpose of this retrospective analysis was to investigate patterns of change in BD management in a single clinic by comparing BD screening and referral rates for PHPT for participants in two studies conducted approximately 8 years apart. This natural experimental design allowed evaluation of changes in PHPT referral rates across two time points, separated by a quality improvement (QI) initiative aimed at increasing awareness and treatment of MS-related BD.

Methods

Data for this analysis were retrospectively analyzed for two independent longitudinal studies completed at the University of California, San Francisco [UCSF], Multiple Sclerosis and Neuroinflammation outpatient clinic. Each cohort prospectively self-recorded bladder symptoms, utilizing a short (4-item) patient-reported outcomes (PRO) questionnaire about bladder symptoms over the past 4 weeks (Bladder Control Scale, BLCS) at baseline, 6 months, and 1 year.¹⁸ Per standard of care, participants were evaluated by their treating neurologist every 6–12 months, yielding at least two physician visits throughout the study duration. For both studies, the electronic health record (EHR) was retrospectively reviewed to determine patterns of BD care. Participants were included in this retrospective analysis if they had a recorded BLCS score and documentation of a clinic visit with their MS-treating neurologist at baseline and/or at 6 months in the EHR (see Figures 1 and 2).

Figure 1.

2015 study cohort selection. n: number, BLCS: Bladder Control Score Scale.

Figure 2.

2023 study cohort selection. n: number, BLCS: Bladder Control Score Scale.

Cohorts

Cohort 1: Baseline and 6-month data for FitBit Remote Monitoring in Multiple Sclerosis MS (recruitment: 2015–2017), an observational study utilizing a commercially available wearable Fitbit to analyze daily step count in the context of regularly reported MS-related symptoms.¹⁹

Cohort 2: Baseline and 6-month data from MS-Fall Insight Track (MS-FIT: 2023–2024), an interventional study evaluating the clinical and technological features of a closed-loop fall prevention monitoring tool in MS.²⁰

Data types

Covariates

Demographic and clinical characteristics: Participant age, sex, MS history, MS type, and MS duration were collected as part of the original studies.

Self-reported

Bladder dysfunction

To assess the patient's perception of their bladder bother (as a proxy for BD), as well as the degree to which BD impacts QOL, the BLCS was used.¹⁸ It is made up of four questions, with the first three scored from 0 to 4, and the last question scored from 0 to 10. Total scores range from 0 to 22, with higher scores correlating to worse BD. To identify whether a patient was self-reporting BD, BLCS > 1 was used, since a score of 1 indicates experiencing at least a mild degree of BD.²¹

Disability

To assess a participant's level of disability, the clinician-derived EDSS²² was utilized for the 2015 cohort (Study 1), and a closely related, validated patient reported-EDSS (prEDSS) questionnaire was used for the 2023 cohort (Study 2). The EDSS was performed by a trained neurologist and measures disability across eight functional systems, resulting in a score from 0 to 10. The prEDSS is a patient-reported version of the EDSS, allowing patients to self-report their level of disability across the same eight functional systems. Although the EDSS remains the gold standard for assessing disability in MS, the prEDSS is a validated scale for assessing disability, making it a reliable alternative.²³

Study outcomes

The baseline and 6-month clinical notes were reviewed by the study team to extract documentation for the following data fields:

patient self-report of BD symptoms,

documented physician–patient discussion regarding BD symptoms,

establishment of a treatment plan for BD symptoms, and

if a referral to urology or PHPT was specified in the visit notes.

Action plan

Participants were considered to have an action plan if in the “Plan of Care Section” of their clinic visit note, there was documented (a) medications used to treat BD prescribed or changed, (b) behavioral modifications suggested, or (c) urology or PHPT referral prescribed (whether within the health system or external to it).

Referral documentation

Documentation pulled from participants' EHRs at baseline and 6-month clinic visits was screened for clinician documentation of patient reporting BD symptoms, type of BD reported, establishment of a BD-specific treatment plan, specific BD treatment recommendation, and presence of a PHPT referral. Of note, if a participant received a referral to PHPT at baseline and 6 months, only the baseline referral was counted for the total number of referrals.

Data analysis

To compare the two study cohorts, participant characteristics between the 2015 and 2023 study outcomes were compared using means and standard deviations (SDs) for continuous variables (age, EDSS/prEDSS) and analyzed with a linear regression. Categorical variables (sex and baseline PHPT referral) were summarized as frequencies and percentages, with associations evaluated using chi-square analyses. The 2015 study and 2023 study frequencies for BD on the PRO, BD discussed with neurologist, BD plan established, and referral to either urology or PHPT were calculated at baseline and 6 months.

To evaluate patterns of change between the two cohorts, changes in the BD care outcomes were expressed as percent change. The 2015 and 2023 study frequency of PHPT referrals was calculated for participants who reported BD on their PRO, and improvement was expressed as percent change. The difference in percent change was examined using a two-tailed z-test to assess statistical significance.

Finally, an odds ratio analysis was performed in the 2023 study cohort to quantify the likelihood of a patient who reported BD on their PRO receiving a PHPT referral. Confidence intervals were calculated to assess the precision of the estimate, and statistical significance was determined using a chi-square test.

Results

This analysis included 65 participants from the 2015 study cohort and 80 participants from the 2023 study cohort who met the inclusion criteria (Figure 1). Participant ages ranged from 24 to 74 years (mean = 53.5, SD = 11.8) in the 2015 study cohort and 25 to 82 years (mean = 55.5, SD = 12.8) in the 2023 study cohort. Disability level at study entry was similar in both cohorts (2015 study median = 4.0, range 0.0–6.5; 2023 study median = 4.5, range 1.0–9.0 prEDSS). While age or disability distributions did not differ significantly between cohorts, the 2015 study cohort had a significantly higher proportion of male participants (Table 1).

Table 1.

Participant characteristics at baseline.

	2015 study	2023 study	Total	Comparison p-value
Cohort, N (%)	65 (44.8%)	80 (55.2%)	123 (100.0%)
Age, mean (SD)	53.5 (11.8)	55.5 (12.8)	54.6 (12.03)	0.33
Sex
Male, N (%)	28 (56.9%)	18 (22.5%)	46 (31.7%)	0.01
Female N (%)	37 (43.1%)	62 (77.5%)	99 (68.3%)
EDSS/prEDSS, median (IQR)	4.4 (2.1)	4.6 (1.5)	4.5 (1.8)	0.65
Baseline PHPT referral
No, N (%)	64 (100.0%)	59 (74.7%)	123(86.0%)	<0.001
Yes, N (%)	0 (0.0%)	20 (25.3%)	81 (14.0%)

N: number; SD: standard deviation; MS: multiple sclerosis; EDSS: Expanded Disability Status Scale; prEDSS: Patient-Reported Expanded Disability Status Scale; IQR: Interquartile range; PHPT: Pelvic Health Physical Therapy. Test: Continuous variables: p values from linear regression models. Categorical variables: p values from Pearson chi-square tests.

Bladder dysfunction symptoms

Overall, at study baseline, 84% (53/65) of the 2015 cohort participants and 94% (75/80) of the 2023 cohort participants subjectively reported BD via a PRO (z = 1.85, p = 0.064). Between the 2015 and 2023 cohorts, there was a nonsignificant increase in the proportion of PwMS reporting BD symptoms at baseline, indicating that the two cohorts had comparable baseline rates of reported BD symptoms (Table 2).

Table 2.

Comparison of bladder dysfunction symptoms and referrals from the 2015 and 2023 study cohorts.

	2015 study BL, n = 65	2023 study BL, n = 80	Comparison p-value	2015 study 6 months, n = 41	2023 study 6 months, n = 56	Comparison p-value
Proportion of bladder dysfunction reported on PRO	84%	94%	0.06	88%	68%	<0.05
Proportion of bladder dysfunction symptoms documented in clinician note	70%	81%	0.15	72%	82%	0.34
Proportion of bladder dysfunction documented in treatment plan	34%	68%	<0.05	36%	74%	<0.05
Proportion of Referral to Urol. or PHPT	44%	75%	<0.05	30%	28%	<0.01
Proportion of PHPT referral	0	39%	<0.01	0	14%	0.12

n: number; PRO: patient-reported outcomes; BL: baseline; PHPT: Pelvic Health Physical Therapy: Urol.: Urology.

The proportion of patients with BD on their PRO who had documented discussion with their clinicians about BD was 70% (37/53) for the 2015 cohort and 81% (61/75) for the 2023 cohort; however, this increase was not statistically significant (z = 1.44, p = 0.15) (Table 2).

Similarly, at the 6-month study visit, between the 2015 and 2023 cohorts, there was a small nonsignificant increase in the proportion of participants who self-reported BD on their PRO (from 72% (26/36) to 82% (31/38)), and had documented BD-specific symptom discussions (z = 0.96, p = 0.34) (Table 2).

Action plan for BD

At baseline visits, 34% (18/53) of patients in the 2015 study and 68% (51/75) of the 2023 study cohort had documented plans to address their BD symptoms. The increase from 34% to 68% was highly statistically significant (z = 3.80, p = 0.0001). Similar improvements were observed at 6 months with the proportion of patients increasing from 36% to 74% ((z ≈ 3.25, p < 0.001) (Table 2).

Referral to urology or pelvic-health physical therapy

At baseline, 44% (8/18) of participants in the 2015 cohort were referred to urology or pelvic health rehabilitation, compared with 75% (38/51) in the 2023 cohort (z = 2.43, p < 0.05). Similarly, at 6 months, 30% (4/13) of the 2015 cohort and 68% (19/28) of the 2023 cohort were referred to urology or pelvic-health rehab (z = 2.40, p < 0.05). For both the 2015 and 2023 cohorts, there was a significant increase in the proportion of patients referred to a specialist for BD symptoms at baseline and at the 6-month visit (Table 2).

Referral to pelvic-health physical therapy

No PHPT referrals were provided in the 2015 study cohort, whereas 26% (20/75) of participants in the 2023 study cohort received referrals (Table 2). In this 2023 cohort, male participants had decreased odds of receiving PHPT referrals compared to female participants (OR = 0.13, 95%CI [0.02,1.05]) but neither age (OR = 1.01, 95% CI [0.97, 1.05]) nor disability level (OR = 0.89, 95%CI [0.62,1.05]) was significantly associated with the odds of receiving a PHPT referral (Table 3).

Table 3.

2023 study baseline odds ratio for rate of referral.

(N = 80)	PHPT referral received
	Odds ratio	95% CI	p-value
Age	1.01	[0.97, 1.05]	0.71
Sex
Male	0.13	[0.02, 1.05]	0.06
Female	1.00
EDSS/prEDSS	0.89	[0.62, 1.26]	0.50

N: Sample size; EDSS: Expanded Disability Status Scale; prEDSS: Patient-Reported Expanded Disability Status Scale; PHPT: Pelvic Health Physical Therapy; CI: confidence interval.

Discussion

Multiple sclerosis–related BD often goes undetected and untreated, despite its significant negative impact on QOL.^3,7,9,11,24 This retrospective analysis observed significant improvements in the treatment of MS-related BD in a real-world tertiary MS clinic between 2015 and 2023. Notably, the study demonstrated an increase in referrals for PHPT, a noninvasive and effective treatment approach for MS-related BD.^1,5,15,25

To contextualize these changes, we can frame them using the COM-B model,²⁶ which considers how capability, opportunity, and motivation shape behavior. The divergence between our 2015 and 2023 results can likely be attributed to multiple factors (Appendix B). First, following the 2015 study, a physical therapist (PT) was specifically embedded in the UCSF Multiple Sclerosis and Neuroinflammation outpatient clinic. This allowed for increased collaboration, education, and advocacy for BD treatments such as PHPT, increasing the opportunity for BD care. Secondly, within the UCSF Health network, there was an increase in hiring PTs with PHPT training—expanding clinical capacity, which likely enhanced access and referral pathways.

In addition, a 2019 clinic-wide QI intervention was developed to improve MS-related symptom management. In this process, neurologists, urologists, nurses, PTs, pharmacists, and patients were consulted to perform a gap analysis, select and develop interventions, iterate based on feedback, and implement interventions to improve MS-related BD treatment. This included development of a clinical pathway for the evaluation of MS-related BD that was also summarized on a clinician-accessible “Bladder Card,” hardcopies of which were posted in clinic, clinician workrooms, and given as an electronic and physical resource to MS physicians and residents (Appendix A). This intervention aimed to increase the opportunity for awareness and treatment of MS-related BD by standardizing evaluation and prompting clinician action.²⁷ Finally, there has been a growing shift in the field—contributing to changes in behavior—with increased attention focused on BD as a significant contributor to QOL for PwMS.⁹

Engagement: Several studies support that increasing awareness and clinician recognition of BD is associated with improved treatment and referral rates.^28,29 A study performed by Brucker et al. demonstrated that the two most common barriers faced by patients in accessing BD treatment are not discussing their symptoms with their clinicians and not being referred for further symptom management.³⁰ Increased emphasis on BD and PHPT via close collaboration between PTs and neurologists, increased hiring of PHPT personnel, and improved objective clinical pathways for BD treatments potentially all contributed to minimizing BD treatment barriers for patients.

Additionally, BD, especially incontinence, has been found to be embarrassing and socially taboo for some patients to discuss, which can increase a patient's reluctance to broach BD symptoms with their physicians.^11,25,30 Increasing physician comfort through a greater focus on BD and treatment resources may potentially reduce the direct pressure on patients to initiate these difficult conversations. These changes may have reduced both clinician and patient barriers to initiating bladder care. Ultimately, however, more dedicated methods to QI assessment would be required to really assess the causation of any one contributor to the increase in screening and referrals; this represents an opportunity for the future.

This study has several limitations. First, data collection relied on retrospective studies and EHR review. Discussions about BD that may have occurred during clinic visits would not have been captured in this analysis if they had not been documented as such in the clinic note. Second, both the 2015 and 2023, study cohorts were composed of participants enrolled as part of larger mobility-focused studies, potentially introducing selection bias towards individuals who proactively manage their health. Finally, this study was conducted at a large research institution with established in-network PHPT referral pathways, which may limit its generalizability to smaller healthcare settings. The study also was not able to capture the utilization rate of PHPT referrals and potential barriers to access locally—particularly in geographic areas in which there is an absence or shortage of PHPT-trained PTs or due to challenges with cost or coverage.

Future work should focus on rigorous investigation into the exact contributors that increase PHPT screening and referral rates so that these factors can be developed and implemented locally into the clinic microsystems to ultimately improve the quality of care of symptom management and BD in MS. PTs and neurologists should develop collaborative relationships, facilitating seamless referrals and communication about patient outcomes. Finally, efforts to increase interdisciplinary education on BD and PHPT across a multi-institutional scale would be beneficial for patient care and overall well-being.

By prioritizing physician education, interdisciplinary collaboration, and standardized BD screening protocols, future initiatives can ensure that more patients receive timely and effective care, ultimately improving QOL for individuals with MS-related BD.

Supplemental Material

sj-jpg-1-mso-10.1177_20552173261443834 - Supplemental material for Closing the referral gap: The role of a quality improvement initiative to enhance pelvic health physical therapy referrals for persons with multiple sclerosis–related bladder symptoms

Supplemental material, sj-jpg-1-mso-10.1177_20552173261443834 for Closing the referral gap: The role of a quality improvement initiative to enhance pelvic health physical therapy referrals for persons with multiple sclerosis–related bladder symptoms by Ilana Winawer, Riley Bove, Jaeleene Wijangco, Gabby B Joseph, Jeannine Bradsby, Amity Eliaz, Maya Gonzalez, Sheantel Riehl, Lisa Keyan, Anne Suskind, Bruce AC Cree, Jeffrey M Gelfand and Valerie J Block in Multiple Sclerosis Journal – Experimental, Translational and Clinical

Supplemental Material

sj-jpg-2-mso-10.1177_20552173261443834 - Supplemental material for Closing the referral gap: The role of a quality improvement initiative to enhance pelvic health physical therapy referrals for persons with multiple sclerosis–related bladder symptoms

Supplemental material, sj-jpg-2-mso-10.1177_20552173261443834 for Closing the referral gap: The role of a quality improvement initiative to enhance pelvic health physical therapy referrals for persons with multiple sclerosis–related bladder symptoms by Ilana Winawer, Riley Bove, Jaeleene Wijangco, Gabby B Joseph, Jeannine Bradsby, Amity Eliaz, Maya Gonzalez, Sheantel Riehl, Lisa Keyan, Anne Suskind, Bruce AC Cree, Jeffrey M Gelfand and Valerie J Block in Multiple Sclerosis Journal – Experimental, Translational and Clinical

Footnotes

Acknowledgements

The authors would like to thank the patients who participated in the original studies.

Declaration of conflicting interests

The authors declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: Riley Bove is funded by the NMSS Harry Weaver Award, NIH, DOD, NSF, as well as Biogen, Novartis, Eli Lilly, and Roche Genentech. She has received personal fees for consulting from Alexion, EMD Serono, Horizon, Jansen, Genzyme Sanofi, and TG Therapeutics. Anne Suskind is a paid consultant on an AHRQ grant and for FLUME catheters. Bruce AC Cree has received personal compensation for consulting from Alexion, Alumis, Biogen, Boston Pharma, EMD Serono, Hexal/Sandoz, Horizon, Immunic AG, Kyverna, Neuraxpharm, Neuron23, Novartis, Sanofi, Siemens, and TG Therapeutics and received research support from Genentech and Kyverna and is on an advisory board for Autobahn. Jeffrey M Gelfand has received research support from Hoffman LaRoche and Vigil Neurosciences for clinical trials. Consulting for Arialys. Valerie J Block is funded by the National MS Society Career Transition Award.

Data availability

The data that support the findings of this study are available on request from the corresponding author. The data are not publicly available due to privacy or ethical restrictions.

Ethical approval and informed consent

The studies were conducted in accordance with the Declaration of Helsinki and approved by the Ethics Committee of the University of California San Francisco (FITriMS no. 14–15371, MS-FIT no. 22–36680). All participants signed an informed consent approved by the University of California San Francisco IRB.

Funding

The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Original parent studies: The FITriMS study was supported in part by National Institutes of Health KL2TR000143 (PI: JMG). MS-FIT was funded by the National Library of Medicine award R01LM013396 (PI: RB).

ORCID iDs

Riley Bove

Jaeleene Wijangco

Gabby B Joseph

Jeannine Bradsby

Bruce AC Cree

Jeffrey M Gelfand

Valerie J Block

Supplemental material

Supplemental material for this article is available online.

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