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https://read.qxmd.com/read/30879250/the-case-for-the-use-of-patient-and-caregiver-perception-of-change-assessments-in-rare-disease-clinical-trials-a-methodologic-overview
#1
Marielle G Contesse, James E Valentine, Tracy E Wall, Mindy G Leffler
INTRODUCTION: The traditional model of evaluating treatments based primarily on primary outcome measures has stumbled in its application to rare disease. Rare disease clinical trials face the methodological challenges of small, heterogeneous patient populations and relatively few validated, disease-specific outcome measures. Incorporating qualitative research into rare disease clinical trials may help sponsors, regulators, payers, and prescribers to better understand the real-world and patient-specific impact of a potential therapy...
March 16, 2019: Advances in Therapy
https://read.qxmd.com/read/30879064/are-cannabis-users-less-likely-to-gain-weight-results-from-a-national-3-year-prospective-study
#2
Omayma Alshaarawy, James C Anthony
BACKGROUND: Pre-clinical studies indicate increased food intake and weight gain as cannabinoid effects. Cross-sectional epidemiological studies, however, indicate lower prevalence of obesity among cannabis users. Here, we aim to study the weight-gain research question in the prospectively conducted National Epidemiologic Survey on Alcohol and Related Conditions (NESARC). METHODS: NESARC was designed to produce nationally representative estimates for the US population...
March 16, 2019: International Journal of Epidemiology
https://read.qxmd.com/read/30878640/patient-choice-and-provider-competition-quality-enhancing-drivers-in-primary-care
#3
Sofie Vengberg, Mio Fredriksson, Ulrika Winblad
Patient choice of provider and provider competition have been introduced with the claim that they would lead to improved quality. For this to occur, certain conditions must be fulfilled on both the demand and the supply side. However, supply side-mechanisms - with provider behaviour as central - have been largely neglected in the literature, especially in primary care markets. In this article, we focus on provider behaviour and explore if and how choice and competition function as quality enhancing drivers in Swedish primary care...
January 29, 2019: Social Science & Medicine
https://read.qxmd.com/read/30878146/recall-accuracy-for-the-symptoms-of-a-major-depressive-episode-among-clinical-trial-participants
#4
Boadie W Dunlop, Maria Granros, Amber Lechner, Tanja Mletzko-Crowe, Charles B Nemeroff, Helen S Mayberg, W Edward Craighead
For patients with major depressive disorder (MDD), approaches to treatment differ for those with a single versus recurrent episodes. Based on studies of community samples, however, accuracy is low for identifying past episodes. Recall accuracy among clinical samples with a well-defined major depressive episode (MDE) has not been examined previously. We evaluated episode recall accuracy in 79 MDD patients in follow-up of the Predictors of Remission in Depression to Individual and Combined Treatments (PReDICT) study at 12- and 24-month time-points after starting treatment...
March 8, 2019: Journal of Psychiatric Research
https://read.qxmd.com/read/30878118/improving-lives-by-accelerating-progress-towards-the-un-sustainable-development-goals-for-adolescents-living-with-hiv-a-prospective-cohort-study
#5
Lucie D Cluver, F Mark Orkin, Laurence Campeau, Elona Toska, Douglas Webb, Anna Carlqvist, Lorraine Sherr
BACKGROUND: Low-income and middle-income countries (LMICs) face major challenges in achieving the UN's Sustainable Development Goals (SDGs) for vulnerable adolescents. We aimed to test the UN Development Programme's proposed approach of development accelerators-provisions that lead to progress across multiple SDGs-and synergies between accelerators on achieving SDG-aligned targets in a highly vulnerable group of adolescents in South Africa. METHODS: We did standardised interviews and extracted longitudinal data from clinical records at baseline (2014-15) and 18-month follow-up (2016-17) for adolescents aged 10-19 years living with HIV in the Eastern Cape province of South Africa...
April 2019: Lancet Child & Adolescent Health
https://read.qxmd.com/read/30877859/screening-for-perinatal-anxiety-disorders-room-to-grow
#6
Nichole Fairbrother, Bryony Corbyn, Dana S Thordarson, Annie Ma, Danika Surm
BACKGROUND: The anxiety and their related disorders (AD) are the most prevalent of all mental health conditions, disproportionately affecting women. The value of perinatal AD screening is well established but there is very limited evidence to support the applicability of existing anxiety screening instruments. To our knowledge, no previous studies have evaluated an AD screening instrument in a perinatal population using full gold standard methodology. OBJECTIVE: To assess the accuracy of the most commonly used and/or recommended screening tools for perinatal AD (i...
March 8, 2019: Journal of Affective Disorders
https://read.qxmd.com/read/30877781/experienced-physician-descriptions-of-intuition-in-clinical-reasoning-a-typology
#7
Meredith Vanstone, Sandra Monteiro, Eamon Colvin, Geoff Norman, Jonathan Sherbino, Matthew Sibbald, Kelly Dore, Amanda Peters
Background Diagnostic intuition is a rapid, non-analytic, unconscious mode of reasoning. A small body of evidence points to the ubiquity of intuition, and its usefulness in generating diagnostic hypotheses and ascertaining severity of illness. Little is known about how experienced physicians understand this phenomenon, and how they work with it in clinical practice. Methods Descriptions of how experienced physicians perceive their use of diagnostic intuition in clinical practice were elicited through interviews conducted with 30 physicians in emergency, internal and family medicine...
March 16, 2019: Diagnosis
https://read.qxmd.com/read/30877692/analysis-of-12-chinese-patients-with-proline-to-leucine-mutation-at-codon-102-associated-gerstmann-str%C3%A3-ussler-scheinker-disease
#8
Jing Wang, Kang Xiao, Wei Zhou, Qi Shi, Xiao Ping Dong
BACKGROUND AND PURPOSE: Gerstmann-Sträussler-Scheinker disease (GSS) with a proline-to-leucine mutation at codon 102 (P102L) in the PRNP gene is the most frequently reported GSS subtype worldwide. This study aimed to determine the epidemiological, clinical, genetic, and laboratory characteristics of 12 Chinese patients with P102L-associated GSS (henceforth P102L GSS). METHODS: The enrolled P102L GSS cases were analyzed according to the diagnostic criteria for Creutzfeldt-Jakob disease (CJD) issued by the China National Health Commission...
March 11, 2019: Journal of Clinical Neurology
https://read.qxmd.com/read/30877638/dementia-family-caregivers-willingness-to-pay-for-an-in-home-program-to-reduce-behavioral-symptoms-and-caregiver-stress
#9
Eric Jutkowitz, Danny Scerpella, Laura T Pizzi, Katherine Marx, Quincy Samus, Catherine Verrier Piersol, Laura N Gitlin
OBJECTIVES: Our objective was to determine whether family caregivers of people with dementia (PwD) are willing to pay for an in-home intervention that provides strategies to manage behavioral symptoms and caregiver stress and to identify predictors of willingness-to-pay (WTP). METHODS: During baseline interviews of a randomized trial and before treatment assignment, caregivers were asked how much they were willing to pay per session for an eight-session program over 3 months...
March 15, 2019: PharmacoEconomics
https://read.qxmd.com/read/30877560/preliminary-results-of-biodistribution-and-dosimetric-analysis-of-68-ga-ga-dota-zol-a-new-zoledronate-based-bisphosphonate-for-pet-ct-diagnosis-of-bone-diseases
#10
Ambreen Khawar, Elisabeth Eppard, Frank Roesch, Hojjat Ahmadzadehfar, Stefan Kürpig, Michael Meisenheimer, Florian C Gaertner, Markus Essler, Ralph A Bundschuh
OBJECTIVE: Pre-clinical studies with gallium-68 zoledronate ([68 Ga]Ga-DOTAZOL ) have proposed it to be a potent bisphosphonate for PET/CT diagnosis of bone diseases and diagnostic counterpart to [177 Lu]Lu-DOTAZOL and [225 Ac]Ac-DOTAZOL . This study aims to be the first human biodistribution and dosimetric analysis of [68 Ga]Ga-DOTAZOL . METHODS: Five metastatic skeletal disease patients (mean age: 72 years, M: F; 4:1) were injected with 150-190 MBq (4.05-5.14 mCi) of [68 Ga]Ga-DOTAZOL i...
March 15, 2019: Annals of Nuclear Medicine
https://read.qxmd.com/read/30877212/update-on-outcome-measure-development-in-large-vessel-vasculitis-report-from-omeract-2018
#11
Sibel Z Aydin, Joanna C Robson, Antoine G Sreih, Catherine Hill, Fatma Alibaz-Oner, Sarah Mackie, Susan Beard, Gülen Hatemi, Tanaz A Kermani, Alfred Mahr, Alexa Meara, Nataliya Milman, Beverley Shea, Gunnar Tómasson, Peter Tugwell, Haner Direskeneli, Peter A Merkel
OBJECTIVE: The OMERACT Vasculitis Working Group seeks to develop validated outcome measures for use in trials for large-vessel vasculitis (LVV). METHODS: An international Delphi exercise conducted among investigators identified items considered important to measure active disease. In parallel, qualitative research with patients was conducted, including interviews and focus groups. RESULTS: Next steps prioritized by the group for LVV include i) defining disease states (remission, flare, and patient-acceptable symptom state); and ii) selection of patientreported outcome tools...
March 15, 2019: Journal of Rheumatology
https://read.qxmd.com/read/30877074/patient-and-primary-care-physician-perceptions-of-penicillin-allergy-testing-and-subsequent-use-of-penicillin-containing-antibiotics-a-qualitative-study
#12
Marta Wanat, Sibyl Anthierens, Christopher C Butler, Louise Savic, Sinisa Savic, Sue H Pavitt, Jonathan A T Sandoe, Sarah Tonkin-Crine
BACKGROUND: Removal of an inaccurate penicillin allergy record following testing allows patients to access first-line treatment for infections, and reduce use of broad spectrum antibiotics which contribute to antibiotic resistance. However, it is seldom undertaken. OBJECTIVES: To identify clinicians' working in primary care and patients' views on barriers and enablers for penicillin allergy testing and subsequent antibiotic use. METHODS: Fifty interviews with patients and clinicians; including 31 patients with a record of penicillin allergy, 16 with experience of testing, and 19 clinicians...
March 12, 2019: Journal of Allergy and Clinical Immunology in Practice
https://read.qxmd.com/read/30876730/post-traumatic-stress-and-major-depressive-disorders-in-parent-caregivers-of-children-with-a-chronic-disorder
#13
C Carmassi, M Corsi, C A Bertelloni, V Pedrinelli, G Massimetti, D G Peroni, A Bonuccelli, A Orsini, L Dell'Osso
Post-traumatic Stress Disorder (PTSD) and Major Depressive Disorder (MDD) are the most common psychiatric consequences among caregivers of pediatric patients affected by severe chronic illnesses. The aims of this study were to describe rates of PTSD and MDD in a sample of parents of epileptic children, and to examine the correlations between symptoms of post-traumatic stress and depression. Parents of children with epilepsy were enrolled and screened by means of the PTSD module of the Semi-Structured Clinical Interview for DSM-5 (SCID-5) and of the Hamilton Rating Scale for depression (HAM-D)...
March 13, 2019: Psychiatry Research
https://read.qxmd.com/read/30876494/validation-and-application-of-a-module-of-the-md-anderson-symptom-inventory-for-measuring-perioperative-symptom-burden-in-patients-with-gynecologic-cancer-the-mdasi-periop-gyn
#14
Xin Shelley Wang, Qiuling Shi, Loretta A Williams, Charles S Cleeland, Araceli Garcia-Gonzalez, Ting-Yu Chen, Denita R Shahid, Pedro T Ramirez, Maria D Iniesta, Ashley M Siverand, Larissa A Meyer
OBJECTIVE: Using patient-reported outcomes (PROs) in perioperative care is increasingly common. We report the development, validation, and application of an MD Anderson Symptom Inventory version for use in patients undergoing surgery for gynecologic cancer or benign conditions (MDASI-PeriOp-GYN). METHODS: Our process included: (1) generating PeriOp-GYN-specific candidate items from qualitative interviews with patients, followed by input from an expert panel; (2) dropping items that lacked independent clinical relevance; (3) validating psychometric properties (reliability, validity) of the resulting MDASI-PeriOp-GYN; and (4) conducting cognitive debriefing interviews with patients to confirm ease of comprehension, relevance, and acceptability...
March 2019: Gynecologic Oncology
https://read.qxmd.com/read/30876384/-psychological-assessment-of-candidates-for-bariatric-surgery
#15
Eszter Tisljár-Szabó, Roland Tisljár
Nowadays, the number of bariatric surgery for treating morbid obesity is significant. There is strong evidence about the influence of mental state (depression, anxiety, eating disorder, etc.) on patient's cooperation with the medical team and the outcome, and on the short or long-term effectiveness of surgery. However, no protocol or recommendation exist for screening patients before bariatric procedures in Hungary. Thus, even if the surgeon or the hospital requires psychological expertise, neither doctors are familiar with the expectable results of such an expertise, nor psychologists know exactly what the most important areas are to talk through with patients...
March 2019: Orvosi Hetilap
https://read.qxmd.com/read/30875455/perspectives-of-adult-rheumatologists-regarding-family-planning-counseling-and-care-a-qualitative-study
#16
Mehret Birru Talabi, Megan E B Clowse, Susan J Blalock, Megan Hamm, Sonya Borrero
OBJECTIVE: Little is known about if and how rheumatologists provide family planning counseling and reproductive health care (FPCC) to reproductive-age women with rheumatic diseases. This qualitative study sought to assess rheumatologists' perspectives, attitudes, and practices regarding FPCC. METHODS: Semi-structured interviews were conducted with a geographically diverse U.S. sample of rheumatologists (n=12). Interviews were transcribed verbatim, and a code book was inductively developed based on transcript content...
March 15, 2019: Arthritis Care & Research
https://read.qxmd.com/read/30875415/definition-of-apical-descent-in-women-with-and-without-previous-hysterectomy-a-retrospective-analysis
#17
Gerda Trutnovsky, Kristy P Robledo, Ka Lai Shek, Hans Peter Dietz
BACKGROUND: While normal pelvic organ support has been defined for women with intact uterus, this is not the case for post- hysterectomy vault descent. A recent systematic review found that definitions of apical prolapse are highly variable. OBJECTIVES: To investigate the relationship between prolapse symptoms and apical POP-Q measurements and establish cutoffs for 'significant apical descent using receiver-operator characteristics (ROC) statistics. STUDY DESIGN: Retrospective analysis of patients seen at a tertiary urogynecological unit...
2019: PloS One
https://read.qxmd.com/read/30875145/rethinking-violence-prevention-in-rural-and-underserved-communities-how-veteran-peer-support-groups-help-participants-deal-with-sequelae-from-violent-traumatic-experiences
#18
Kathryn J Azevedo, Jeremy C Ramirez, Anusha Kumar, Ann LeFevre, Adam Factor, Elon Hailu, Steven E Lindley, Shaili Jain
PURPOSE: Access to mental health care and programs that address violence prevention can be a challenge for veterans residing in rural and underserved areas. A growing number of trauma-affected veterans are now returning to rural areas upon completion of military service. The Palo Alto VA Health Care System has piloted a program known as the Peer Support Program (PSP) where certified peer support specialists hold group sessions for their fellow veterans in remote, community-based outpatient clinics...
March 15, 2019: Journal of Rural Health
https://read.qxmd.com/read/30874781/follow-up-of-an-intervention-to-reduce-dental-caries-in-indigenous-australian-children-a-secondary-analysis-of-a-randomized-clinical-trial
#19
Lisa M Jamieson, Lisa G Smithers, Joanne Hedges, Jacqueline Aldis, Helen Mills, Kostas Kapellas, Herenia P Lawrence, John R Broughton, Xiangqun Ju
Importance: Testing the long-term usefulness of a childhood intervention and determining the best age of implementation are important for translation and policy change. Objectives: To investigate among children aged 3 years the long-term effectiveness an intervention that aimed to reduce dental caries among South Australian Aboriginal children and to assess if children in the delayed intervention (DI) group had any benefit from the intervention from ages 2 to 3 years and if the intervention usefulness was greater when delivered between pregnancy and age 2 years (immediate intervention [II] vs ages 2 to 3 years [DI])...
March 1, 2019: JAMA Network Open
https://read.qxmd.com/read/30874520/-cognitive-disorders-in-beh%C3%A3-et-s-disease
#20
P S Ovcharov, T A Lisitsyna, D Yu Veltishchev, D V Burenchev, D A Ishchenko, O F Seravina, O B Kovalevskaya, Z S Alekberova, E L Nasonov
AIM: To study the prevalence of cognitive disorders (CD) and clinical/pathogenetic correlations of CD in patients with Behçet's Disease (BD). MATERIAL AND METHODS: One hundred and six BD patients were enrolled in the study. The majority of patients were natives of the North Caucasus (51.9%). Mean age was 33.3±0.98 years, mean illness duration 148.5±10.4 months. All the patients met the criteria of the International Study Group for BD (1990) classification. The disease activity was assessed by scoring system BDCAF...
2019: Zhurnal Nevrologii i Psikhiatrii Imeni S.S. Korsakova
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