Abstract
BackgroundIn patients with multiple sclerosis (MS) the impact of urological symptoms on quality of life and daily activities is considerable. Yet, a substantial percentage of patients may not be urologically evaluated and thus fail to be treated concordantly. The 8-item Actionable questionnaire is a validated English screening tool for the detection of neurogenic bladder overactivity in MS. To enable the use of the 8-item Actionable in The Netherlands and Belgium we translated the questionnaire into the Dutch language and investigated the test-retest reliability and the concurrent validity of the Dutch version.MethodsThe process of translating the English Actionable questionnaire into the Dutch language included forward translations and back-translations. Then, in an online observational study, MS patients completed the Dutch Actionable at Days 1 and 8, and the Multiple Sclerosis Quality of Life 54-Items (MSQoL-54) and Multiple Sclerosis Impact Profile (MSIP) questionnaires at Day 1; the Expanded Disability Status Scale (EDSS) score was assessed by phone at Day 1. For assessment of the test-retest reliability Pearson’s correlation coefficient (r) between the Day 1 and Day 8 Actionable scores was calculated. For assessment of the concurrent validity r values were calculated between the Day 1 Actionable score and the EDSS score, the Physical and Mental MSQoL-54 composites, and the MSIP domain and symptom disability scores.ResultsStudy population: N = 141 (106 female, 35 male) (80 relapsing remitting, 48 progressive, 13 unknown), mean age 47.8 (standard deviation [SD] 10.4) years, mean EDSS score 4.7 (SD 1.8); 137 patients completed the Day 8 assessment. Pearson’s r between Actionable scores Day 1 and Day 8: 0.85 (P < .0001). Pearson’s r between Actionable score Day 1 and scores for EDSS 0.41 (P < 0.0001), MSQoL-54 Physical −0.31 (P = 0.0002), MSQoL-54 Mental −0.29 (P = 0.0005), MSIP Excretion and Reproductive Functions 0.44 (P < 0.0001), Muscle and Movement Functions 0.39 (P < .0001), Basic Movement Activities 0.37 (P < 0.0001), Activities of Daily Living 0.32 (P < 0.0001), Participation in Life Situations 0.29 (P = 0.0006) and Mental Functions 0.20 (P = 0.0189).ConclusionsThe Dutch version of the Actionable urological screening tool for MS shows a good test-retest reliability and a good concurrent validity with disabilities and HRQoL.
Highlights
In patients with multiple sclerosis (MS) the impact of urological symptoms on quality of life and daily activities is considerable
A large scale survey of the North American Research Committee On Multiple Sclerosis (NARCOMS) patient registry identified at least one moderate to severe urinary symptom in 65 % of the respondents, and showed that of patients with moderate to severe overactive bladder symptoms only 43 % were evaluated by urology, that 51 % were treated with anticholinergic medication, and that newer treatments were significantly underused [5]
These findings indicate that despite an increasing awareness of overactive bladder symptoms and the need for evaluation and treatment, many MS patients’ symptoms still remain unnoticed and underserved [5, 6]
Summary
In patients with multiple sclerosis (MS) the impact of urological symptoms on quality of life and daily activities is considerable. A large scale survey of the North American Research Committee On Multiple Sclerosis (NARCOMS) patient registry identified at least one moderate to severe urinary symptom in 65 % of the respondents, and showed that of patients with moderate to severe overactive bladder symptoms only 43 % were evaluated by urology, that 51 % were treated with anticholinergic medication, and that newer treatments were significantly underused (less than 10 % total use) [5]. These findings indicate that despite an increasing awareness of overactive bladder symptoms and the need for evaluation and treatment, many MS patients’ symptoms still remain unnoticed and underserved [5, 6]
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