Health Behaviours, Quality of Life and Treatment Adherence in neurogenic versus non-neurogenic Urinary Incontinence

Michailidou S1, Holeva V2, Damianidou K2, Samarinas M3, Delithanasi A2, Apostolidis A4

Research Type


Abstract Category

Quality of Life / Patient and Caregiver Experiences

PRIZE AWARD: Best in Category Prize - Quality of Life / Patient and Caregiver Experiences
Abstract 264
Health Services and Community Care
Scientific Podium Short Oral Session 15
Thursday 5th September 2019
10:00 - 10:07
Hall H2
Incontinence Quality of Life (QoL) Questionnaire Prospective Study Neuropathies: Central
1.Aristotle University of Thessaloniki, School of Medicine, 2.Aristotle University of Thessaloniki, 1st Department of Psychiatry, Papageorgiou General Hospital, Thessaloniki, Greece, 3.General Hospital of Larisa, Department of Urology, Larisa, Greece, 4.Aristotle University of Thessaloniki, 2nd Department of Urology, Papageorgiou General Hospital, Thessaloniki, Greece

Apostolos Apostolidis



Hypothesis / aims of study
Urinary incontinence (UI) and Lower Urinary Tract Symptoms (LUTS) are common disorders among neurological patients and can affect their quality of life (QoL), leading to feelings of shame, depression and social isolation [1]. Patients with Multiple Sclerosis (MS) and Parkinson’s disease (PD) report UI rates of 37-72% and 21-40%, respectively [2]. 
Despite the negative effect on QoL, a small fraction of patients seek medical advice for UI contributing to inadequate communication between treating physicians and patients. This phenomenon of treatment procrastination - or even denial - may arise from different causes, regarding social limitations, psychological parameters, use of absorbent materials or even high treatment expectations [3].
We conducted a questionnaire-based study aiming to record the differences in quality of life (QoL), UI severity and health seeking behaviours - including decision-making for active treatment and adherence to treatment – between neurological and non neurological patients. Our hypothesis was that neurological patients were more severely affected in their QoL and had different health behaviors compared to non-neurological patients with incontinence. 
The development and psychometric properties of the study tool (Health Behavior
Questionnaire - HBQ) were also studied
Study design, materials and methods
The study was approved by the Hospital’s Scientific Committee. Following written informed consent, a cohort of neurological and non-neurological patients with UI who attended a public teaching hospital’s Neurourology and Female Urology outpatient clinics were interviewed.
The study tool comprised five modules: 1) demographics and medical history, 2) King’s Health Questionnaire (KHQ), 3) International Consultation on Incontinence Questionnaire - Urinary Incontinence (ICIQ-UI) 4) HBQ, 5) a previously validated treatment adherence questionnaire. 
The HBQ is a three-part gender-specific tool, designed by the research team in order to assess factors associated with embarrassment, fear and decision making when seeking medical advice/ treatment for UI.

Statistics. Due to the scarcity of previous literature on the subject, we conducted a pilot study in which we aimed to recruit 100 patients in each study arm – neurological and non-neurological. The primary outcome was the comparison of the effect on QoL of neurological vs. non-neurological patients with UI.  
Overall, descriptive statistical analysis was performed for all study data per group. Continuous variables were summarized with the use of descriptive statistical measures. Within-group comparison was undertaken using Wilcoxon and Mann-Whitney tests. Homogeneity of variances between different parts of the questionnaire was tested using Levene’s test. Scale reliability for each HBQ section was measured using Cronbach’s alpha. All statistical analyses were performed using SPSS v.21.0 (IBM Corp., Armonk, NY, USA).
Overall, 200 incontinent patients participated in the study (n=100 in both the neurological and non-neurological study arm), of whom 36 were men and 164 women. The majority of neurological patients (52%) suffered from MS, followed by Parkinson’s disease (15%) and spinal cord injury (12%), while the remaining 21% suffered from other neurological conditions. Half of the patients had sought medical advice in the past concerning their incontinence. Non-neurological patients tended to have sought medical advice in the past more frequently than neurological patients (p=0.076). 
Neurological patients presented significantly higher KHQ scores in the domains of incontinence impact (p=0.018), physical (p=0.028) and social (p=0.000) limitations, personal relationships (p=0.008), emotions (p= 0.002) and embarrassment related to their bladder condition (p=0.048). Patients with MS who comprised the main trunk of the neurological population of the study had very similar results to the total neurological sample, having more affected physical (p=0.000) and social (p=0.000) limitations, personal relationships (p=0.008), emotions (p=0.000) and embarrassment (p=0.048). There were no significant differences in the symptom severity domain, coinciding with the results of the ICIQ-SF which also showed similar severity of incontinence between neurological and non-neurological patients. Patients receiving psychotropic medication appeared with more severe impact on general health perceptions (p=0.017) and emotions (p=0.019).
Validation of the HBQ. The HBQ modules showed either excellent (Cronbach’s α=0.852 and 0.757 for embarrassment and fear modules, respectively) or moderate reliability (α=0.601) for decision making about treatment seeking.
Regarding the domains of the HBQ, neurological patients appear to have different perceptions in terms of fear towards physicians and medical examination; however, only fear to reveal their bad habits during their medical visit was significantly higher compared to non-neurological patients (p=0.046).  
In the HBQ decision making domain questionnaire, several differences were noted but statistically significant differences were detected in only 3 questions: neurological patients were more commonly referred to the Urologist by their treating Neurologist physician (p=0.01) and were more concerned about accessibility and facilities in the hospital outpatient clinics (p=0.021), but were less concerned about possible financial burden associated with medical visits (p=0.01). Non-neurological patients tended to consider they had more serious issues to address than their incontinence problem when making a decision to visit a specialist (p=0.063).  
Regarding adherence to treatment, neurological patients appear to be more compliant than non-neurological patients in three subcategories of the treatment adherence questionnaire: understanding the need for medical treatment (p=0.047), compliance with the timing of administration of medication (p=0.024) and compliance to a daily medical regimen (p=0.047). However, in other subcategories neurological patients scored lower than non-neurological but the difference did not reach significance (own initiative in decreasing medication, particularly due to symptomatic improvement).
Interpretation of results
Results suggest that, although neurological patients may suffer similar severity of incontinence and associated LUTS when compared to non-neurological patients with incontinence, they were more severely affected in their QoL and presented differences in their health behaviors. Interestingly, they appear to be more compliant than non-neurological patients in certain domains concerning timing of the medication and administration and keeping up with an everyday dosing regimen. possibly reflecting the severity of their incontinence but also a higher drive to be cured from their condition. This may be in agreement with the finding that non-neurological patients tended to think that UI was not their priority in the list of issues to address. Psychiatric comorbidity appeared to little affect health behaviors, but the study was not designed to properly investigate this factor, and subclinical cases of increased stress, anxiety and depression have not been captured by the study tool.
Concluding message
Urinary incontinence affects more severely the majority of the domains of QoL of neurological patients as measured by the KHQ, when compared to non-neurological incontinent patients. Patients with MS represented the majority of neurological patients in our study sample, and were particularly more severely affected in several psychosocial parameters and emotions. Differences between neurological and non-neurological patients were also found in factors affecting decision making for seeking medical advice as well as fear towards physicians and medical examination, and adherence to treatment. Finally, the HBQ showed excellent reliability in 2 out of 3 domains, suggesting it might be a reliable tool to explore health behaviors of patients towards treatment seeking for UI. Results need to be confirmed in larger longitudinal studies, further evaluating patient behaviors towards newly started medication for their UI.
  1. Brucker BM, Nitti VW, Kalra S, Herbert J, Sadiq A, Utomo P, Aponte MM. Barriers experienced by patients with multiple sclerosis in seeking care for lower urinary tract symptoms. Neurourol Urodyn. 2017 Apr;36(4):1208-1213
  2. McDonald C, Winge K, Burn DJ. Lower urinary tract symptoms in Parkinson's disease: Prevalence, aetiology and management. Parkinsonism & Related Disorders 2017; 35:8-16
  3. Apostolidis A, Kirana PS, Chiu G, Link C, Tsiouprou M, Hatzichristou DG. Gender and age differences in the perception of bother and healthcare seeking for Lower Urinary Tract Symptoms (LUTS): Results from the Hospitalized and Outpatients’ Profile and Expectations Study (HOPES). Eur Urol.2009;56: p. 937-947.
Funding None Clinical Trial No Subjects Human Ethics Committee Papageorgiou Hosptial Scientific Committee Helsinki Yes Informed Consent Yes