Diagnostic Delay of Multiple Sclerosis in a Portuguese Population

Aires, Ana; Barros, Ariana; Machado, Catarina; Fitas, Diogo; Cação, Gonçalo; Pedrosa, Rui; Cerqueira, João José; Perdigão, Sandra; Silva, Ana Martins; Vale, José; Sá, María José; Andrade, Carlos

doi:10.20344/amp.11187

Cited by 25 publications

(22 citation statements)

References 20 publications

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“…Similar results were obtained by Kis et al who observed a longer mean time to diagnosis in LOMS patients (three years) compared to younger patients (one year) [9]. A Portuguese study also demonstrated diagnostic delay in older patients [16].…”

Section: Discussionsupporting

confidence: 85%

Clinical and laboratory parameters by age for patients diagnosed with multiple sclerosis between 2000 and 2015

Małecka

Przybek-Skrzypecka

Kurowska

et al. 2021

Neurol Neurochir Pol.

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Aim of the study:To compare the demographic, clinical and laboratory characteristics of patients with multiple sclerosis (MS) analysed based on the age at which they were diagnosed.Clinical rationale for the study: Most cases of MS are diagnosed between the ages of 20 and 40 years, but the clinical characteristics of patients with MS over this age range have rarely been studied. Material and methods: 182 patients diagnosed with MS between 2000 and 2015 were divided into four groups by age at diagnosis: < 30 years (n = 62), 30-39 years (n = 54), 40-49 years (n = 27), and ≥ 50 years (n = 39). The demographic, clinical and laboratory features of each age group were investigated and between-groups comparisons analysed.Results: There were no significant differences in the female-to-male ratio between groups, which was close to 3:1 in every group (p = 0.98). Motor symptoms were more common as the first manifestation of MS with increasing age (< 30: 19.3%; 30-39: 37.0%; 40-49: 44.4%; ≥ 50: 61.5%). Visual and sensory symptoms were responsible for nearly half of first manifestations in patients < 30 to 49, but affected a significantly lower proportion of patients in the oldest group (p = 0.01). Median (interquartile range [IQR]) Expanded Disability Status Scale at diagnosis was higher with advancing age (2 [1.5-3], 2.25 [1.5-3.5], 3 [2-3.5], and 3.5 [3-5]; p < 0.01). There was also a higher proportion of patients with progressive forms of the disease with age, especially primary progressive MS (0.0%, 3.7%, 14.8%, and 51.3%; p < 0.01). The median (IQR) time needed to confirm the diagnosis of MS became significantly longer as age increased (7 [2-25], 9 [2-32], 12 [6-58], and 26 [12-60] months; p < 0.01). In laboratory tests, significant differences were found only in the rate of post-contrast enhancement by magnetic resonance imaging, which was lower in the older age groups (63.2%, 50.0%, 31.6%, and 30.0%; p < 0.01). Conclusions and clinical implications:Our study indicates significant differences in the demographic and clinical picture of MS depending on the age of the patient at diagnosis. Diagnostic delay in older patients is a common problem, and this study shows the features of later forms of MS to help inform neurologists and improve time to diagnosis.

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Section: Discussionsupporting

confidence: 85%

Clinical and laboratory parameters by age for patients diagnosed with multiple sclerosis between 2000 and 2015

Małecka

Przybek-Skrzypecka

Kurowska

et al. 2021

Neurol Neurochir Pol.

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“…Older age, smoking and low socioeconomic status have been associated with diagnostic delay of other chronic conditions. [24][25][26][27] We defined individuals as `smokers', `ex-smokers' or `non-smokers' based on codes for smoking status in the 10 years before presentation with chronic GI symptoms. Individuals whose most recent code indicated active smoking were classed as `smokers' and those with codes indicating previous but not current smoking were classed as `ex-smokers'; individuals with only `non-smoker' codes were classed as `non-smokers'.…”

Section: Time To Specialist Reviewmentioning

confidence: 99%

Prevalence and Duration of Gastrointestinal Symptoms Before Diagnosis of Inflammatory Bowel Disease and Predictors of Timely Specialist Review: A Population-Based Study

Blackwell

Saxena

Jayasooriya

et al. 2020

Journal of Crohn's and Colitis

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Background and Aims Lack of timely referral and significant waits for specialist review amongst individuals with unresolved gastrointestinal (GI) symptoms can result in delayed diagnosis of Inflammatory Bowel Disease (IBD). Aims To determine the frequency and duration of GI symptoms and predictors of timely specialist review before the diagnosis of both Crohn’s Disease (CD) and ulcerative colitis (UC). Methods Case-control study of IBD matched 1:4 for age and sex to controls without IBD using the Clinical Practice Research Datalink from 1998-2016. Results We identified 19,555 cases of IBD, and 78,114 controls. 1 in 4 cases of IBD reported gastrointestinal symptoms to their primary care physician more than 6 months before receiving a diagnosis. There is a significant excess prevalence of GI symptoms in each of the 10 years before IBD diagnosis. GI symptoms were reported by 9.6% and 10.4% at 5 years before CD and UC diagnosis respectively compared to 5.8% of controls. Amongst patients later diagnosed with IBD, <50% received specialist review within 18 months from presenting with chronic GI symptoms. Patients with a previous diagnosis of irritable bowel syndrome or depression were less likely to receive timely specialist review (IBS: HR=0.77, 95%CI 0.60-0.99, depression: HR=0.77, 95%CI 0.60-0.98). Conclusions There is an excess of GI symptoms 5 years before diagnosis of IBD compared to the background population which are likely attributable to undiagnosed disease. Previous diagnoses of IBS and depression are associated with delays in specialist review. Enhanced pathways are needed to accelerate specialist referral and timely IBD diagnosis.

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“…Progressive neurological conditions such as Parkinson's disease (PD), multiple sclerosis (MS) and motor neurone disease (MND are incurable and result in a gradual decline in physical and cognitive functioning, restricting individuals' daily activities and affecting their quality of life and psychological functioning [9]. Before receiving their diagnosis, patients often experience a stressful pre-diagnostic period [10], are often misdiagnosed and may experience significant diagnostic delay [11][12][13].…”

Section: Introductionmentioning

confidence: 99%

Giving and receiving a diagnosis of a progressive neurological condition: A scoping review of doctors’ and patients’ perspectives

Anestis

Eccles

Fletcher

et al. 2020

Patient Education and Counseling

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Objective: Delivering a life changing diagnosis can be a distressing experience for patients and a challenging task for professionals. Diagnosis delivery can be especially difficult for individuals with neurodegenerative diseases such as motor neurone disease (MND), multiple sclerosis (MS) and Parkinson's disease (PD). This review aims to scope the literature on doctors' and patients' perspectives on diagnosis delivery for these conditions in order to enhance our understanding in this area and identify potential research gaps. Methods: A scoping review methodology was used, and data were summarised using content analysis.Results: 47 studies fulfilled the inclusion criteria. Studies showed that although patients were generally satisfied with diagnosis delivery, a considerable proportion was still dissatisfied with aspects of the consultation, especially the information and time provided and the doctor's approach. Only six studies addressed doctors' perspectives, which focused more on doctors' practice. Conclusion:There was a significant research gap in professionals' perspectives. The review also found that although basic standards of good practice were being met, a significant proportion of patients were dissatisfied with diagnosis communication. Practice Implications: Professionals delivering such diagnoses need to assess and respond to patients' information needs, provide time for questions and maintain an empathic attitude.

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Diagnostic Delay of Multiple Sclerosis in a Portuguese Population

Cited by 25 publications

References 20 publications

Clinical and laboratory parameters by age for patients diagnosed with multiple sclerosis between 2000 and 2015

Clinical and laboratory parameters by age for patients diagnosed with multiple sclerosis between 2000 and 2015

Prevalence and Duration of Gastrointestinal Symptoms Before Diagnosis of Inflammatory Bowel Disease and Predictors of Timely Specialist Review: A Population-Based Study

Giving and receiving a diagnosis of a progressive neurological condition: A scoping review of doctors’ and patients’ perspectives

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