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1.
Alzheimers Dement ; 20(3): 2309-2322, 2024 Mar.
Article in English | MEDLINE | ID: mdl-38275208

ABSTRACT

Coping with dementia requires an integrated approach encompassing personal, health, research, and community domains. Here we describe "Walking the Talk for Dementia," an immersive initiative aimed at empowering people with dementia, enhancing dementia understanding, and inspiring collaborations. This initiative involved 300 participants from 25 nationalities, including people with dementia, care partners, clinicians, policymakers, researchers, and advocates for a 4-day, 40 km walk through the Camino de Santiago de Compostela, Spain. A 2-day symposium after the journey provided novel transdisciplinary and horizontal structures, deconstructing traditional hierarchies. The innovation of this initiative lies in its ability to merge a physical experience with knowledge exchange for diversifying individuals' understanding of dementia. It showcases the transformative potential of an immersive, embodied, and multi-experiential approach to address the complexities of dementia collaboratively. The initiative offers a scalable model to enhance understanding, decrease stigma, and promote more comprehensive and empathetic dementia care and research.


Subject(s)
Dementia , Social Stigma , Humans , Spain , Dementia/therapy
2.
Eur Respir J ; 61(5)2023 05.
Article in English | MEDLINE | ID: mdl-36858445

ABSTRACT

BACKGROUND: Little is known about generalisability of randomised controlled trials (RCTs) for idiopathic pulmonary fibrosis (IPF). We evaluated eligibility criteria for phase III IPF RCTs to determine their representativeness in clinical registries, and calculated forced vital capacity (FVC) changes according to eligibility criteria. METHODS: Common eligibility criteria used in >60% of IPF RCTs were identified from a literature search and applied to patients with IPF from prospective Australian and Canadian registries. Additional pre-specified criteria of 6-min walk distance (6MWD) and different measures of preceding disease progression were also evaluated. Joint longitudinal-survival modelling was used to compare FVC decline according to eligibility for individual and composite criteria. RESULTS: Out of 990 patients with IPF, 527 (53%) met all common RCT eligibility criteria at the first clinic visit, including 343 with definite IPF and 184 with radiological probable usual interstitial pneumonia pattern without histological confirmation (i.e. provisional IPF). The percentages of eligible patients for landmark RCTs of nintedanib and pirfenidone were 19-50%. Adding 6MWD ≥150 m and different measures of preceding disease progression to the composite common criteria reduced the percentages of patients meeting eligibility to 52% (n=516) and 4-18% (n=12-61), respectively. Patients meeting the composite common criteria had less-rapid 1-year FVC decline than those who did not (-90 versus -103 mL, p=0.01). Definite IPF generally had more-rapid 1-year FVC decline compared to provisional IPF. CONCLUSIONS: Eligibility criteria of previous IPF RCTs have limited generalisability to clinical IPF populations, with FVC decline differing between eligible and ineligible populations.


Subject(s)
Idiopathic Pulmonary Fibrosis , Humans , Australia , Canada , Idiopathic Pulmonary Fibrosis/drug therapy , Vital Capacity , Disease Progression , Pyridones/therapeutic use , Registries , Pharmaceutical Preparations , Treatment Outcome , Randomized Controlled Trials as Topic
3.
Chest ; 2024 May 29.
Article in English | MEDLINE | ID: mdl-38821182

ABSTRACT

BACKGROUND: Pulmonary hypertension (PH) is a key complication in interstitial lung disease (ILD), with recent therapeutic advances. RESEARCH QUESTION: What are the diagnostic evaluation, epidemiologic features, associated factors, prognostic significance, and outcome measures in interventional trials for PH in patients with ILD in the current literature? STUDY DESIGN AND METHODS: Ovid MEDLINE, Embase, and CENTRAL databases were searched for original research evaluating PH in participants with ILD of any cause. The definition of PH was based on the investigators' criteria. RESULTS: Three hundred two studies were included, with varying diagnostic evaluations used to define PH. Commonly used diagnostic tests were right heart catheterization (RHC; 56%) and transthoracic echocardiography (TTE; 50%). The pooled prevalence for PH in general populations with ILD was 36% (95% CI, 30%-42%) using RHC and 34% (95% CI, 29%-38%) using TTE. Lower diffusion capacity of the lungs for carbon monoxide, worse oxygenation status, reduced exercise capacity, increased pulmonary artery to aorta ratio and pulmonary artery diameter, and elevated serum brain natriuretic peptide consistently were associated with the presence of PH in at least 60% of reported studies. The presence of PH was associated with increased symptom burden and worse prognosis. Outcome measures in interventional trials of PH in ILD focused on changes in pulmonary vascular hemodynamics and 6-min walk distance. INTERPRETATION: PH is a common complication in ILD with significant health impacts. A standardized definition with prospective evaluation of risk-stratified assessments for PH using identified associated risk factors is warranted. Our findings provide an evidence base for validation as surrogate end points in future PH interventional trials in ILD. TRIAL REGISTRY: International Prospective Register of Systematic Reviews; No.: CRD42021255394; URL: https://www.crd.york.ac.uk/prospero/.

4.
Sleep Med Rev ; 68: 101743, 2023 04.
Article in English | MEDLINE | ID: mdl-36657366

ABSTRACT

Obstructive sleep apnea (OSA) is a significant healthcare burden affecting approximately one billion people worldwide. The prevalence of OSA is rising with the ongoing obesity epidemic, a key risk factor for its development. While in-laboratory polysomnography (PSG) is the gold standard for diagnosing OSA, it has significant drawbacks that prevent widespread use. Portable devices with different levels of monitoring are available to allow remote assessment for OSA. To better inform clinical practice and research, this comprehensive systematic review evaluated diagnostic performances, study cost and patients' experience of different levels of portable sleep studies (type 2, 3, and 4), as well as wearable devices and non-contact systems, in adults. Despite varying study designs and devices used, portable diagnostic tests are found to be sufficient for initial screening of patients at risk of OSA. Future studies are needed to evaluate cost effectiveness with the incorporation of portable diagnostic tests into the diagnostic pathway for OSA, as well as their application in patients with chronic respiratory diseases and other comorbidities that may affect test performance.


Subject(s)
Sleep Apnea, Obstructive , Humans , Adult , Sleep Apnea, Obstructive/diagnosis , Polysomnography , Comorbidity , Risk Factors , Prevalence
5.
J Behav Addict ; 8(2): 223-233, 2019 Jun 01.
Article in English | MEDLINE | ID: mdl-31120316

ABSTRACT

BACKGROUND AND AIMS: Unregulated Internet pornography (IP) use is discussed as a clinically significant disorder. Because of its primarily rewarding nature, IP is a predestinated target for addictive behaviors. However, not every user develops an unregulated usage pattern. In fact, most users tend to use IP recreationally. Impulsivity-related constructs have been identified as promoters of addictive behaviors. It is unclear whether these impulsivity-related constructs are specific for unregulated IP use or also play a role in recreational but frequent behaviors. In this study, we investigated impulsive tendencies (trait impulsivity, delay discounting, and cognitive style), craving toward IP, attitude regarding IP, and coping styles in individuals with recreational-occasional, recreational-frequent, and unregulated IP use. METHODS: A total of 1,498 heterosexual males participated in an online survey. Groups of individuals with recreational-occasional use (n = 333), recreational-frequent use (n = 394), and unregulated use (n = 225) of IP were identified by screening instruments. RESULTS: Craving and attitude regarding IP as well as delay discounting and cognitive and coping styles differed between groups. Individuals with unregulated use showed the highest scores for craving, attentional impulsivity, delay discounting, and dysfunctional coping, and lowest scores for functional coping and need for cognition. Recreational-frequent users had the most positive attitude toward IP. Motor and non-planning impulsivity did not differ between groups. DISCUSSION AND CONCLUSIONS: The results indicate that some facets of impulsivity and related factors such as craving and a more negative attitude are specific for unregulated IP users. The results are also consistent with models on specific Internet use disorders and addictive behaviors.


Subject(s)
Behavior, Addictive/diagnosis , Behavior, Addictive/psychology , Erotica/psychology , Impulsive Behavior , Internet , Recreation/psychology , Adaptation, Psychological , Adolescent , Adult , Aged , Aged, 80 and over , Craving , Delay Discounting , Diagnosis, Differential , Female , Humans , Male , Middle Aged , Surveys and Questionnaires , Young Adult
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