Physician-perceived utility of the EORTC QLQ-GINET21 questionnaire in the treatment of patients with gastrointestinal neuroendocrine tumours: a multicentre, cross-sectional survey (QUALINETS).

BACKGROUND AND OBJECTIVE: Patient-reported outcome measures can provide clinicians with valuable information to improve doctor-patient communication and inform clinical decision-making. The aim of this study was to evaluate the physician-perceived utility of the QLQ-GINET21 in routine clinical practice in patients with gastrointestinal neuroendocrine tumours (GI-NETs). Secondary aims were to explore the patient, clinician, and/or centre-related variables potentially associated with perceived clinical utility. METHODS: Non-interventional, cross-sectional, multicentre study conducted at 34 hospitals in Spain and Portugal (NCT02853422). Patients diagnosed with GI-NETs completed two health-related quality of life (HRQoL) questionnaires (QLQ-C30, QLQ-GINET21) during a single routine visit. Physicians completed a 14-item ad hoc survey to rate the clinical utility of QLQ-GINET21 on three dimensions: 1)therapeutic and clinical decision-making, 2)doctor-patient communication, 3)questionnaire characteristics. RESULTS: A total of 199 patients at 34 centres were enrolled by 36 participating clinicians. The highest rated dimension on the QLQ-GINET21 was questionnaire characteristics (86.9% of responses indicating "high utility"), followed by doctor-patient communication (74.4%), and therapeutic and clinical decision-making (65.8%). One physician-related variable (GI-NET patient volume > 30 patients/year) was associated with high clinical utility and two variables (older age/less experience treating GI-NETs) with low clinical utility. CONCLUSIONS: Clinician-perceived clinical utility of QLQ-GINET21 is high. Clinicians valued the instruments' capacity to provide a better understanding of patient perspectives and to identify the factors that had the largest influence on patient HRQoL.

Burnout among neurologists caring for patients with cognitive disorders in Spain.

BACKGROUND: Physician burnout has a negative impact on both physicians and patients. Limited information is available on professional burnout of neurologists. The aim of this study was to assess the presence of burnout among neurologists caring for patients with cognitive disorders and to identify associated factors. METHODS: An online, cross-sectional study was conducted in collaboration with the Spanish Society of Neurology. Neurologists involved in the care of patients with cognitive disorders answered a survey composed of demographic characteristics, professional background, clinical practice setting, and behavioral factors. Burnout was assessed using a single-item measure from the Physician Work Life Study. A multivariate logistic regression analysis was conducted to determine the association between neurologists' characteristics and burnout. RESULTS: A total of 188 neurologists answered the survey. The mean age (standard deviation-SD) was 40.6 (11.3) years and 52.7% were male. The majority of participants were general neurologists (60.6%) who attending a median of 20 patients with cognitive disorders (interquartile range 10.0-30.0) weekly. Thirty-nine participants (20.7%) reported burnout. Participants with burnout had greater experiences of regret associated with past clinical decisions than their counterparts (mean Regret Intensity Scale scores of 2.3 and 1.9, respectively; p = 0.003). Burnout was associated with non-academic practice (OR = 3.02 [95% CI 1.18, 7.73], p = 0.021) and care-related regret (OR = 2.53 [95% CI 1.13, 5.64], p = 0.023) in the multivariate analysis after adjustment for confounders. CONCLUSIONS: Professional burnout was a common phenomenon among neurologists managing cognitive disorders. Identifying physician burnout and its associated factors may be critical for implementing preventive intervention strategies.

Perception of Stigma in Patients with Neuromyelitis Optica Spectrum Disorder.

BACKGROUND: Perception of stigma was associated with low self-esteem, psychological problems, and decreased health-seeking behavior among patients with different neurological disorders. The purpose of this study was to assess stigmatization and its impact in patients with neuromyelitis optica spectrum disorder (NMOSD). METHODS: A non-interventional study was conducted at thirteen neuroimmunology clinics in Spain. Patients with a diagnosis of NMOSD (2015 Wingerchuk criteria) were included. The 8-item Stigma Scale for Chronic Illness (SSCI-8), the Expanded Disability Status Scale (EDSS), the 29-item Multiple Sclerosis Impact Scale (MSIS-29), the Beck Depression Inventory-Fast Screen (BDI-FS), the MOS Pain Effects Scale (MOS-PES) and the Fatigue Impact Scale for Daily Use (D-FIS) were used to assess the perception of stigma, disability, quality of life, mood, pain, and fatigue, respectively. Associations between outcome measures were analyzed using Spearman's rank correlation. RESULTS: Seventy-one patients were studied (mean age: 47.4 years ± 14.9, 81.7% female, mean time since disease onset: 9.9 years ± 8.1). The median EDSS score was 3.0 (interquartile range 1.5, 4.5). Stigma prevalence was 61.4% (n=43). Thirty-one patients (43.6%) had depression. The SSCI-8 score showed a significant correlation with both physical (rho=0.576, p<0.0001) and psychological (rho=0.608, p<0.0001) MSIS-29 scales scores, EDSS score (rho=0.349, p=0.0033), BDI-FS score (rho= 0.613, p<0.0001), MOS-PES score (rho= 0.457, p<0.0001), and D-FIS score (rho=0.556, p<0.0001). CONCLUSION: Stigma is a common phenomenon affecting over 6 out of 10 patients with NMOSD. Understanding stigma may be useful to develop educational strategies improving NMOSD knowledge.

Spanish validation of a specific measure to assess work-related problems in people with multiple sclerosis: The Multiple Sclerosis Work Difficulties Questionnaire (MSWDQ-23).

INTRODUCTION: Unemployment is a significant problem for people with multiple sclerosis (MS). The MS Work Difficulties Questionnaire (MSWDQ-23) is a self-report tool to assess work-related problems in people with MS across three domains: physical, psychological/cognitive, and external barriers. The aim of this study was to assess the psychometric properties of the Spanish version of the MSWDQ-23. METHODS: A multicentre, non-interventional, cross-sectional study in adult patients with relapsing-remitting multiple sclerosis (RRMS) or primary progressive (PPMS) multiple sclerosis (McDonald 2010 criteria) was conducted. Socio-demographic and clinical characteristics as well as health-related quality of life using the 29-item Multiple Sclerosis Impact Scale (MSIS-29) were collected. RESULTS: A total of 201 subjects were studied (mean age: 43.9 years, 60% female, 86% with RRMS). Median Expanded Disability Status Scale (EDSS) (score: 2.0 [IQR: 1.0-3.5]). The employment rate was 47.3% (n = 95). The MSWDQ-23 was feasible (90% response rate), with high internal consistency and test-retest reliability (Cronbach's alpha = 0.94 and intraclass correlation coefficient-ICC > 0.87). MSWDQ-23 scores significantly and positively correlated with EDSS and both MSIS-29 physical and psychological subscales scores, showing an adequate convergent validity. Regarding construct validity, scores of patients with PPMS were higher than those of patients with RRMS, reaching statistically significance in MSWDQ-23 physical barriers domain and total scores. CONCLUSION: The Spanish version of the MSWDQ-23 shows appropriate feasibility, reliability, and discriminative performance as a patient-reported outcome. MSWDQ-23 may be a valuable addition to measure the impact of a comprehensive spectrum of difficulties experienced by people with MS in the workplace.

A new multidisciplinary home care telemedicine system to monitor stable chronic human immunodeficiency virus-infected patients: a randomized study.

BACKGROUND: Antiretroviral therapy has changed the natural history of human immunodeficiency virus (HIV) infection in developed countries, where it has become a chronic disease. This clinical scenario requires a new approach to simplify follow-up appointments and facilitate access to healthcare professionals. METHODOLOGY: We developed a new internet-based home care model covering the entire management of chronic HIV-infected patients. This was called Virtual Hospital. We report the results of a prospective randomised study performed over two years, comparing standard care received by HIV-infected patients with Virtual Hospital care. HIV-infected patients with access to a computer and broadband were randomised to be monitored either through Virtual Hospital (Arm I) or through standard care at the day hospital (Arm II). After one year of follow up, patients switched their care to the other arm. Virtual Hospital offered four main services: Virtual Consultations, Telepharmacy, Virtual Library and Virtual Community. A technical and clinical evaluation of Virtual Hospital was carried out. FINDINGS: Of the 83 randomised patients, 42 were monitored during the first year through Virtual Hospital (Arm I) and 41 through standard care (Arm II). Baseline characteristics of patients were similar in the two arms. The level of technical satisfaction with the virtual system was high: 85% of patients considered that Virtual Hospital improved their access to clinical data and they felt comfortable with the videoconference system. Neither clinical parameters [level of CD4+ T lymphocytes, proportion of patients with an undetectable level of viral load (p = 0.21) and compliance levels >90% (p = 0.58)] nor the evaluation of quality of life or psychological questionnaires changed significantly between the two types of care. CONCLUSIONS: Virtual Hospital is a feasible and safe tool for the multidisciplinary home care of chronic HIV patients. Telemedicine should be considered as an appropriate support service for the management of chronic HIV infection. TRIAL REGISTRATION: Clinical-Trials.gov: NCT01117675.