Development and Validation of the Satisfaction Concerning Stoma Care Questionnaire (SSCQ).

Purpose: The purpose of this research was to develop the Satisfaction Concerning Stoma Care Questionnaire (SSCQ) and evaluate its structural and convergent validity and internal reliability.

Design: Instrument development and evaluation of validity and reliability.

Subjects And Setting: A preliminary 22-item SSCQ was administered in a larger web-based survey to members of 2 ostomy-related patient associations with members throughout the Netherlands.

Intravenous immunoglobulin for chronic inflammatory demyelinating polyradiculoneuropathy.

Background: Chronic inflammatory demyelinating polyradiculoneuropathy (CIDP) causes progressive or relapsing weakness and numbness of the limbs, which lasts for at least two months. Uncontrolled studies have suggested that intravenous immunoglobulin (IVIg) could help to reduce symptoms. This is an update of a review first published in 2002 and last updated in 2013.

Levodopa Response in Patients With Early Parkinson Disease: Further Observations of the LEAP Study.

Background And Objectives: The Levodopa in EArly Parkinson's Disease (LEAP) study enabled us to conduct post hoc analyses concerning the effects of levodopa in patients with early Parkinson disease.

Methods: The LEAP study was a double-blind, placebo-controlled, randomized, delayed-start trial in which patients with early Parkinson disease were randomized to receive levodopa/carbidopa 300/75 mg daily for 80 weeks (early-start group) or to placebo for 40 weeks followed by levodopa/carbidopa 300/75 mg daily for 40 weeks (delayed-start group). We analyzed the effect of levodopa with the Unified Parkinson's Disease Rating Scale on bradykinesia, rigidity, and tremor.

Cost-Effectiveness and Cost-Utility of Early Levodopa in Parkinson's Disease.

Background: In the Levodopa in EArly Parkinson's disease (LEAP) study, 445 patients were randomized to levodopa/carbidopa 100/25 mg three times per day for 80 weeks (early-start) or placebo for 40 weeks followed by levodopa/carbidopa 100/25 mg three times per day for 40 weeks (delayed-start).

Objective: This paper reports the results of the economic evaluation performed alongside the LEAP-study.

Methods: Early-start treatment was evaluated versus delayed-start treatment, in which the cost-effectiveness analysis (CEA) and the cost-utility analysis (CUA) were performed from the societal perspective, including health care costs among providers, non-reimbursable out-of-pocket expenses of patients, employer costs of sick leave, and lowered productivity while at work.

Surgical results and quality of life after subtotal petrosectomy.

Purpose: Few data are available regarding subjective complaints and quality of life (QoL) after subtotal petrosectomy (STP). The purpose of our study was to assess long-term surgical results after STP, and to evaluate disease-specific, patient-reported outcomes including QoL and subjective hearing.

Methods: A retrospective cohort study, including a postal survey, was performed in the Amsterdam University Medical Centers (Amsterdam UMC) location Academic Medical Centre (AMC).

Withdrawal of intravenous immunoglobulin in chronic inflammatory demyelinating polyradiculoneuropathy.

Intravenous immunoglobulins are an efficacious treatment for chronic inflammatory demyelinating polyradiculoneuropathy. Biomarkers for disease activity are lacking, making the need for ongoing treatment difficult to assess, leading to potential overtreatment and high health-care costs. Our objective was to determine whether intravenous immunoglobulin withdrawal is non-inferior to continuing intravenous immunoglobulin treatment and to determine how often patients are overtreated.

Immunoglobulin for multifocal motor neuropathy.

Background: Multifocal motor neuropathy (MMN) is a rare, probably immune-mediated disorder characterised by slowly progressive, asymmetric, distal weakness of one or more limbs with no objective loss of sensation. It may cause prolonged periods of disability. Treatment options for MMN are few.

Assessment of disability in idiopathic inflammatory myopathy: a call for linearity.

Objectives: To evaluate the clinimetric properties of the Academic Medical Centre Disability Score (ALDS) in patients with idiopathic inflammatory myopathy (IIM).

Methods: We used prospectively collected data of IIM patients who completed a phase-2 study with first-line IVIG monotherapy. The ALDS is a patient-reported questionnaire which contains 25 items relevant for disability in myositis.

Rivastigmine for minor visual hallucinations in Parkinson's disease: A randomized controlled trial with 24 months follow-up.

Background: Visual hallucinations are common in patients with Parkinson's disease and represent probably the major independent predictor for cognitive deterioration and nursing home placement.

Objective: To investigate if treatment of minor visual hallucinations in Parkinson's disease with rivastigmine delays the progression to psychosis.

Methods: A multicenter, randomized, double-blind, placebo-controlled trial was conducted which aimed to recruit 168 patients with Parkinson's disease reporting minor visual hallucinations 4 weeks before it.

Intravenous immunoglobulins as first-line treatment in idiopathic inflammatory myopathies: a pilot study.

Objectives: We explored efficacy and safety of IVIg as first-line treatment in patients with an idiopathic inflammatory myopathy.

Methods: In this investigator-initiated phase 2 open-label study, we included 20 adults with a newly diagnosed, biopsy-proven idiopathic inflammatory myopathy, and a disease duration of less than 9 months. Patients with IBM and prior use of immunosuppressants were excluded.

Effect of Endovascular Treatment With Medical Management vs Standard Care on Severe Cerebral Venous Thrombosis: The TO-ACT Randomized Clinical Trial.

Importance: To date, only uncontrolled studies have evaluated the efficacy and safety of endovascular treatment (EVT) in patients with cerebral venous thrombosis (CVT), leading to the lack of recommendations on EVT for CVT.

Objective: To evaluate the efficacy and safety of EVT in patients with a severe form of CVT.

Design, Setting, And Participants: TO-ACT (Thrombolysis or Anticoagulation for Cerebral Venous Thrombosis) was a multicenter, open-label, blinded end point, randomized clinical trial conducted in 8 hospitals in 3 countries (the Netherlands, China, and Portugal).

Favourable outcome without psychotherapy in patients with functional neurologic disorder.

Objective: To investigate whether patients with functional neurologic disorder (FND) may improve without psychotherapy as was suggested by a retrospective study.

Methods: We prospectively studied patients with newly diagnosed FND. At baseline and at 12 months participants filled out a set of self-reported health questionnaires.

Botulinum neurotoxin treatment in jerky and tremulous functional movement disorders: a double-blind, randomised placebo-controlled trial with an open-label extension.

Objective: To study the effect of botulinum neurotoxin (BoNT) treatment in jerky and tremulous functional movement disorders (FMD).

Methods: Patients with invalidating, chronic (>1 year) symptoms were randomly assigned to two subsequent treatments with BoNT or placebo every 3 months with stratification according to symptom localisation. Improvement on the dichotomised Clinical Global Impression-Improvement scale (CGI-I) (improvement vs no change or worsening) at 4 months, assessed by investigators blinded to the allocated treatment was the primary outcome.

Randomized Delayed-Start Trial of Levodopa in Parkinson's Disease.

Background: Levodopa is the main treatment for symptoms of Parkinson's disease. Determining whether levodopa also has a disease-modifying effect could provide guidance as to when in the course of the disease the treatment with this drug should be initiated.

Methods: In a multicenter, double-blind, placebo-controlled, delayed-start trial, we randomly assigned patients with early Parkinson's disease to receive levodopa (100 mg three times per day) in combination with carbidopa (25 mg three times per day) for 80 weeks (early-start group) or placebo for 40 weeks followed by levodopa in combination with carbidopa for 40 weeks (delayed-start group).

The cognitive profile of behavioural variant FTD and its similarities with ALS: a systematic review and meta-analysis.

Approximately 30% of patients with amyotrophic lateral sclerosis (ALS) have cognitive impairment and 8%-14% fulfil the criteria for behavioural variant frontotemporal dementia (bv-FTD). The cognitive profiles of ALS and bv-FTD have been reported to be comparable, but this has never been systematically investigated. We aimed to determine the cognitive profile of bv-FTD and examine its similarities with that of ALS, to provide evidence for the existence of a cognitive disease continuum encompassing bv-FTD and ALS.

Management of patients with functional neurological symptoms: a single-centre randomised controlled trial.

Objective: Is health-related quality of life 12 months after randomisation in participants with functional neurological symptoms better after discussion of the diagnosis by trained neurologists who schedule at least two follow-up visits (intervention group) than after the same discussion of the diagnosis by these neurologists and immediate referral to the general practitioner (control group)?

Methods: A single-centre randomised controlled trial at one academic outpatient department of neurology. Participants were randomised 1:1, stratified for type of functional symptoms. The study sample consisted of 100 participants in the intervention group, and 95 participants in the control group.

Clinical decision-making in functional and hyperkinetic movement disorders.

Objective: Functional or psychogenic movement disorders (FMD) present a diagnostic challenge. To diagnose FMD, clinicians must have experience with signs typical of FMD and distinguishing features from other hyperkinetic disorders. The aim of this study was to clarify the decision-making process of expert clinicians while diagnosing FMD, myoclonus, and tics.

Severe anemia in Malawian children.

Background: Severe anemia is a major cause of sickness and death in African children, yet the causes of anemia in this population have been inadequately studied.

Methods: We conducted a case-control study of 381 preschool children with severe anemia (hemoglobin concentration, <5.0 g per deciliter) and 757 preschool children without severe anemia in urban and rural settings in Malawi.

The frontotemporal syndrome of ALS is associated with poor survival.

Thirty percent of ALS patients have a frontotemporal syndrome (FS), defined as behavioral changes or cognitive impairment. Despite previous studies, there are no firm conclusions on the effect of the FS on survival and the use of non-invasive ventilation (NIV) in ALS. We examined the effect of the FS on survival and the start and duration of NIV in ALS.

Orthostatic Hypotension in Parkinson's Disease: The Relation of Blood Pressure Tests and Symptoms in Daily Life.

Background: Orthostatic hypotension (OH) is common in Parkinson's disease (PD), but the relation between the results of orthostatic blood pressure tests and orthostatic symptoms in daily life is not clear.

Methods: We performed a cross-sectional study in an incident nontertiary care cohort of PD patients with additional recruitment of PD patients from our own outpatient clinic. We recruited sex- and age-matched controls.