8,002 results
Search Results
2. Quality of life measurement in skin cancer patients: literature review and position paper of the European Academy of Dermatology and Venereology Task Forces on Quality of Life and Patient Oriented Outcomes, Melanoma and Non-Melanoma Skin Cancer.
- Author
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Chernyshov PV, Lallas A, Tomas-Aragones L, Arenbergerova M, Samimi M, Manolache L, Svensson A, Marron SE, Sampogna F, Spillekom-vanKoulil S, Bewley A, Forsea AM, Jemec GB, Szepietowski JC, Augustin M, and Finlay AY
- Subjects
- Case-Control Studies, Europe, Humans, Treatment Outcome, Melanoma physiopathology, Quality of Life, Skin Neoplasms physiopathology
- Abstract
The European Academy of Dermatology and Venereology (EADV) Task Forces (TFs) on Quality of Life (QoL) and Patient Oriented Outcomes, Melanoma and Non-Melanoma Skin Cancer (NMSC) present a review of the literature and position statement on health-related (HR) QoL assessment in skin cancer patients. A literature search was carried out to identify publications since 1980 that included information about the impact of SC on QoL. Generic, dermatology-specific, cancer-specific, SC-specific, facial SC-specific, NMSC-specific, basal cell carcinoma-specific and melanoma-specific QoL questionnaires have been used to assess HRQoL in SC patients. HRQoL was assessed in the context of creation and validation of the HRQoL instruments, clinical trials, comparison of QoL in SC and other cancers, other diseases or controls, HRQoL assessment after treatment, comorbidities, behaviour modification, predictors of QoL and survival, supportive care needs, coping strategies and fear of cancer recurrence. The most widely used instruments for HRQoL assessment in SC patients are the European Organisation for Research and Treatment of Cancer Core Questionnaire (EORTC QLQ-C30), the Functional Assessment of Cancer Therapy-Melanoma (FACT-M), Skin Cancer Index (SCI), Short Form 36 Item Health Survey (SF-36) and the Dermatology Life Quality Index (DLQI). The TFs recommend the use of the cancer-specific EORTC QLQ-C30, especially in late stages of disease, and the melanoma-specific FACT-M and SC-specific SCI questionnaires. These instruments have been well validated and used in several studies. Other HRQoL instruments, also with good basic validation, are not currently recommended because the experience of their use is too limited. Dermatology-specific HRQoL instruments can be used to assess the impact of skin-related problems in SC. The TFs encourage further studies to validate HRQoL instruments for use in different stages of SC, in order to allow more detailed practical recommendations on HRQoL assessment in SC., (© 2019 European Academy of Dermatology and Venereology.)
- Published
- 2019
- Full Text
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3. EADV Task Force Pruritus White Paper on chronic pruritus and chronic prurigo: Current challenges and future solutions.
- Author
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Ständer, S., Pereira, M. P., Zeidler, C., Legat, F. J., Misery, L., Lönndahl, L., Bewley, A. P., Brenaut, E., Bobko, S., Elberling, J., Evers, A. W. M., Garcovich, S., Gieler, U., Gonçalo, M., Kupfer, J., Lambert, J., Lvov, A., Metz, M., Michenko, A., and Papadavid, E.
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CONSCIOUSNESS raising , *QUALITY of life , *MENTAL illness , *TASK forces , *SYMPTOMS - Abstract
Chronic pruritus (CP) is frequent in general medicine and the most common complaint in general dermatology. The prevalence of CP is expected to rise in the future due to the ageing population. The clinical presentation, underlying aetiology and treatment strategy of CP are heterogeneous. Also, individual treatment aims and physical, psychic and economic burdens of patients might vary. Chronic prurigo (CPG) is the most severe disease in the chronic pruritus spectrum, being associated with long‐standing scratch‐induced skin lesions and a therapy refractory itch‐scratch‐cycle. It is thus important to raise disease awareness for CP and CPG in the general public and among decision‐makers in the health system. Further, there is a need to support a rational clinical framework to optimize both diagnostics and therapeutics. Currently, there is still a shortcoming regarding approved therapies and understanding CP/CPG as severe medical conditions. Therefore, the EADV Task Force Pruritus decided to publish this white paper based on several consensus meetings. The group consented on the following goals: (a) ensure that CP is recognized as a serious condition, (b) increase public awareness and understanding of CP and CPG as chronic and burdensome diseases that can greatly affect a person's quality of life, (c) clarify that in most cases CP and CPG are non‐communicable and not caused by a psychiatric disease, (d) improve the support and treatment given to patients with CP to help them manage their disease and (e) publicize existing therapies including current guidelines. We aim to point to necessary improvements in access and quality of care directed to decision‐makers in health policy, among payers and administrations as well as in practical care. [ABSTRACT FROM AUTHOR]
- Published
- 2024
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4. Quality of life measurement in acne. Position Paper of the European Academy of Dermatology and Venereology Task Forces on Quality of Life and Patient Oriented Outcomes and Acne, Rosacea and Hidradenitis Suppurativa.
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Chernyshov PV, Zouboulis CC, Tomas-Aragones L, Jemec GB, Manolache L, Tzellos T, Sampogna F, Evers AWM, Dessinioti C, Marron SE, Bettoli V, van Cranenburgh OD, Svensson A, Liakou AI, Poot F, Szepietowski JC, Salek MS, and Finlay AY
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- Clinical Trials as Topic, Humans, Reproducibility of Results, Validation Studies as Topic, Acne Vulgaris psychology, Quality of Life, Surveys and Questionnaires standards
- Abstract
Acne causes profound negative psychological and social effects on the quality of life (QoL) of patients. The European Dermatology Forum S3-Guideline for the Treatment of Acne recommended adopting a QoL measure as an integral part of acne management. Because of constantly growing interest in health-related QoL assessment in acne and because of the high impact of acne on patients' lives, the European Academy of Dermatology and Venereology Task Force on QoL and Patient Oriented Outcomes and the Task Force on Acne, Rosacea and Hidradenitis Suppurativa have documented the QoL instruments that have been used in acne patients, with information on validation, purposes of their usage, description of common limitations and mistakes in their usage and overall recommendations., (© 2017 European Academy of Dermatology and Venereology.)
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- 2018
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5. Quality of life measurement in atopic dermatitis. Position paper of the European Academy of Dermatology and Venereology (EADV) Task Force on quality of life.
- Author
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Chernyshov PV, Tomas-Aragones L, Manolache L, Marron SE, Salek MS, Poot F, Oranje AP, and Finlay AY
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- Age Factors, Humans, Reproducibility of Results, Severity of Illness Index, Dermatitis, Atopic psychology, Quality of Life, Surveys and Questionnaires
- Abstract
There is a need for researchers to have easy reference to the wide spectrum of different types of quality of life (QoL) instruments that can be used in atopic dermatitis (AD). Previous reviews on QoL in AD do not cover the full spectrum of QoL measures used in studies on AD. This study, on behalf of the European Academy of Dermatology and Venereology (EADV) Task Force on QoL, contains information on instruments available for health-related QoL and family QoL assessment in AD including information on validation, experience of QoL assessment in AD for different purposes, peculiarities of QoL assessment in different age groups, expert analysis of available instruments including data on limitations of their use and recommendations of the Task Force., (© 2016 European Academy of Dermatology and Venereology.)
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- 2017
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6. Improving fresh strawberry shelf life and quality by using the fresh‐keeping paper embedded with oregano essential oil and tea polyphenols.
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Chen, Xiaodong, Li, Tingting, Zhu, Chaoyu, Wang, Lei, Cong, Kaiping, Xu, Haotian, Wu, Caie, Yan, Shijie, Li, Xu, Zhou, Dandan, Fan, Gongjian, and Li, Xiaojing
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STRAWBERRIES , *ESSENTIAL oils , *QUALITY of life , *POLYPHENOL oxidase , *POLYPHENOLS , *OREGANO - Abstract
Summary: The short shelf life of fresh strawberries limits its marketing potential, despite its valuable economic and nutritional benefits. An environmentally friendly fresh‐keeping paper was prepared with oregano essential oil (OEO) and tea polyphenols (TP) and used in the storage of strawberries. Results showed that, during the late storage period, the TP and OEO fresh‐keeping paper treatments reduced malondialdehyde (MDA) content by 29.04% and 34.47%, respectively, compared with the control samples. The treatments also reduced decay incidence, weight loss, epidermal microorganisms and total anthocyanins content (TAC). Furthermore, the treatments reduce polyphenol oxidase (PPO) activity, delay the colour development and maintain better sensory attributes. Notably, OEO fresh‐keeping paper treatment not only increased the titratable acidity (TA) and total soluble solids (TSS) content but also improved the scavenging ability of reactive oxygen species by maintaining high levels of superoxide dismutase (SOD) and catalase (CAT) activity. These results demonstrated that fresh‐keeping paper treatment has the potential to extend the post‐harvest life of strawberries and improve their quality. [ABSTRACT FROM AUTHOR]
- Published
- 2023
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7. Mixtures of t $$ t $$ factor analysers with censored responses and external covariates: An application to educational data from Peru.
- Author
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Wang WL, Castro LM, Li HJ, and Lin TI
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- Humans, Likelihood Functions, Peru, Multivariate Analysis, Computer Simulation, Quality of Life, Algorithms
- Abstract
Analysing data from educational tests allows governments to make decisions for improving the quality of life of individuals in a society. One of the key responsibilities of statisticians is to develop models that provide decision-makers with pertinent information about the latent process that educational tests seek to represent. Mixtures of t $$ t $$ factor analysers (MtFA) have emerged as a powerful device for model-based clustering and classification of high-dimensional data containing one or several groups of observations with fatter tails or anomalous outliers. This paper considers an extension of MtFA for robust clustering of censored data, referred to as the MtFAC model, by incorporating external covariates. The enhanced flexibility of including covariates in MtFAC enables cluster-specific multivariate regression analysis of dependent variables with censored responses arising from upper and/or lower detection limits of experimental equipment. An alternating expectation conditional maximization (AECM) algorithm is developed for maximum likelihood estimation of the proposed model. Two simulation experiments are conducted to examine the effectiveness of the techniques presented. Furthermore, the proposed methodology is applied to Peruvian data from the 2007 Early Grade Reading Assessment, and the results obtained from the analysis provide new insights regarding the reading skills of Peruvian students., (© 2023 British Psychological Society.)
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- 2024
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8. Recommendations for assessing patient-reported outcomes and health-related quality of life in patients with urticaria: a GA(2) LEN taskforce position paper.
- Author
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Baiardini I, Braido F, Bindslev-Jensen C, Bousquet PJ, Brzoza Z, Canonica GW, Compalati E, Fiocchi A, Fokkens W, Gerth van Wijk R, Giménez-Arnau A, Godse K, Grattan C, Grob JJ, La Grutta S, Kalogeromitros D, Kocatürk E, Lombardi C, Mota-Pinto A, Ridolo E, Saini SS, Sanchez-Borges M, Senna GE, Terreehorst I, Todo Bom A, Toubi E, Bousquet J, Zuberbier T, and Maurer M
- Subjects
- Chronic Disease, Humans, Surveys and Questionnaires, Treatment Outcome, Urticaria psychology, Clinical Trials as Topic methods, Outcome Assessment, Health Care methods, Quality of Life, Urticaria physiopathology, Urticaria therapy
- Abstract
The aim of this Global Allergy and Asthma European Network (GA(2)LEN) consensus report is to provide recommendations and suggestions for assessing patient-reported outcomes (PROs) including health-related quality of life in patients with urticaria. We recommend that PROs should be used both in clinical trials and routine practice for the evaluation of urticaria patients. We suggest that PROs should be considered as the primary outcome of future clinical trials. Two validated and disease-specific instruments for assessing PROs are available, the urticaria activity score (for symptoms) and the chronic urticaria questionnaire on quality of life CU-Q(2)oL. This latter tool, CU-Q(2)oL, is available in many languages and should be preferred, where available, over more generic instruments for assessing urticaria-specific effects on quality of life. CU-Q(2)oL is only suited for the investigation of patients with chronic spontaneous urticaria. Similar instruments for other forms of urticaria have yet to be developed and validated. Also, tools for assessing other chronic spontaneous urticaria PROs besides quality of life and symptoms are needed., (© 2011 John Wiley & Sons A/S.)
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- 2011
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9. Specific recommendations for PROs and HRQoL assessment in allergic rhinitis and/or asthma: a GA(2)LEN taskforce position paper.
- Author
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Braido F, Bousquet PJ, Brzoza Z, Canonica GW, Compalati E, Fiocchi A, Fokkens W, Gerth van Wijk R, La Grutta S, Lombardi C, Maurer M, Pinto AM, Ridolo E, Senna GE, Terreehorst I, Todo Bom A, Bousquet J, Zuberbier T, and Baiardini I
- Subjects
- Health Planning Guidelines, Humans, Research Design, Treatment Outcome, Asthma drug therapy, Asthma psychology, Clinical Trials as Topic methods, Outcome Assessment, Health Care methods, Quality of Life, Rhinitis, Allergic, Perennial drug therapy, Rhinitis, Allergic, Perennial psychology, Rhinitis, Allergic, Seasonal drug therapy, Rhinitis, Allergic, Seasonal psychology
- Abstract
The GA(2)LEN taskforce on Patient-Reported Outcomes (PROs) and Health-Related Quality of Life (HRQoL) published in 2009 a position paper concerning PROS and HRQoL assessment in clinical trials on allergy. Because of the specificity of this topic in asthma and rhinitis, specific recommendations are needed. The aim of this position paper is to define PROs and their meaning in asthma and rhinitis research, explore the available tools to provide criteria for a proper choice, identify patient-related factor which could influence PROs assessment, define specific recommendations for assessment, analysis and results spreading, underline the unexplored areas and unmet needs. PROs assessment is gaining increasing importance, and it must be performed with a rigorous methodological procedure and using validated tools. This approach enables to better understand patient-related factors influencing clinical trials and real-life management outcomes, identify patients subgroups that can benefit from specific treatment and management plan and tailor treatment to address PROs (not only physician-defined targets) to improve asthma and rhinitis management.
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- 2010
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10. Evaluating health-related quality of life: cost comparison of computerized touch-screen technology and traditional paper systems.
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Lofland JH, Schaffer M, and Goldfarb N
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- Allied Health Personnel economics, Humans, Telefacsimile economics, Ambulatory Care Facilities economics, Computers economics, Costs and Cost Analysis, Quality of Life, Surveys and Questionnaires economics
- Abstract
We estimated and compared the costs for three different methods of administering and evaluating the Short Form-36 as a routine part of clinical practice from the provider perspective. In an outpatient pain management practice, we assessed a computer touch-screen system with facsimile and scanning scoring methods. Equipment, supply, and labor costs needed to construct, maintain, and generate reports for each system were measured. The annual fixed, variable, and total costs/survey were calculated. Sensitivity analyses were performed varying the number of surveys administered/year. The facsimile method was the least costly, $9.62 and $5.88/survey, at annual questionnaire volumes of 250 and 1000, respectively. When the annual survey volume increased to 1250 (5 surveys/day), the costs of the facsimile ($5.63/survey) and computer touch-screen ($5.65/survey) methods were nearly equivalent per survey administration. At volumes of 1500 and above, the least costly method was the computer touch screen at $5.47/survey. The system implemented in a clinical practice is dependent not only on questionnaire volume but also on personnel availability, equipment access, required speed of results, and the acceptable level of data error.
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- 2000
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11. Top 100 most‐cited oral health‐related quality of life papers: Bibliometric analysis.
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Clementino, Luna Chagas, de Souza, Kethlen Sara Correa, Castelo‐Branco, Millaine, Perazzo, Matheus França, Ramos‐Jorge, Maria Letícia, Mattos, Flávio Freitas, Paiva, Saul Martins, and Martins‐Júnior, Paulo Antônio
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COMPUTER software ,PUBLISHING ,EXPERIMENTAL design ,ORAL health ,BIBLIOMETRICS ,SERIAL publications ,SYSTEMATIC reviews ,CITATION analysis ,QUALITY of life ,DESCRIPTIVE statistics ,AUTHORSHIP ,EVALUATION - Abstract
Objective: This study assessed the features of the 100 most‐cited papers on oral health‐related quality of life (OHRQoL). Methods: The 100 most‐cited OHRQoL papers were collected from Web of Science, adopting a combined keyword search strategy. Google Scholar and Scopus databases were searched to compare citations. The following data were extracted from papers: title of the paper, number of citations, authorship, country, year of publication, title of the journal, study design, sample size, topic and OHRQoL instruments used. Graphical bibliometric networks were created using VOSviewer software. Results: The number of citations of the top 100 most‐cited OHRQoL papers ranged from 73 to 949. Fifty‐six papers received at least 100 citations and two received more than 400 citations. Most papers were from Canada (23%) and had been published in Community Dentistry and Oral Epidemiology (37%). David Locker was the most‐cited author (25 papers; 3,521 citations). The cross‐sectional study design was the most common (68%). The impact of oral health conditions on OHRQoL (43%) was the most frequent topic, and the Oral Health Impact Profile (OHIP) was the most commonly used OHRQoL instrument (48%). Conclusions: This bibliometric analysis highlighted the characteristics of the 100 most‐cited OHRQoL papers, demonstrating that this field is far from saturated. This list of the most‐cited articles can provide a reference point to guide oral health research, education and services. [ABSTRACT FROM AUTHOR]
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- 2022
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12. Medical management of anorectal malformations.
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Ambartsumyan L
- Subjects
- Humans, Postoperative Complications, Anus, Imperforate surgery, Anus, Imperforate diagnosis, Laxatives therapeutic use, Child, Anal Canal abnormalities, Anal Canal surgery, Anorectal Malformations surgery, Anorectal Malformations therapy, Anorectal Malformations diagnosis, Constipation therapy, Constipation etiology, Constipation diagnosis, Quality of Life, Fecal Incontinence therapy, Fecal Incontinence etiology
- Abstract
Background: Anorectal malformations (ARMs) are congenital anomalies of the anorectum and the genitourinary system that result in a broad spectrum of hindgut anomalies. Despite surgical correction patients continue to have late postoperative genitourinary and colorectal dysfunction that have significant impact on quality of life., Aim: This paper will review the current evidence and discuss the evaluation and management of postoperative patients with ARMs who present with persistent defecation disorder., Methods: A literature search was conducted using PubMed/MEDLINE/EMBASE databases applying the following terms: ARMs, imperforate anus, constipation, faecal incontinence, neurogenic bowel, posterior sagittal anorectoplasty., Results: Patients who present with postoperative defecation disorders require timely diagnostic and surgical evaluation for anatomic abnormalities prior to initiation of bowel management. Goals of management are to avoid constipation in young children, achieve faecal continence in early childhood and facilitate independence in older children and adolescents. Treatment options vary from high dose stimulant laxatives to high-volume retrograde and antegrade enemas that facilitate mechanical colonic emptying., Conclusions: Appropriate diagnostic work-up and implementation of treatment can decrease long-term morbidity and improve quality of life in postoperative patients with ARMs who presents with defecation disorders., (© 2024 John Wiley & Sons Ltd.)
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- 2024
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13. Estimating meaningful change thresholds for Skin Pain-Numeric Rating Scale, Sleep-Numeric Rating Scale and Dermatology Life Quality Index in patients with prurigo nodularis.
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Stander S, Kim BS, Guillemin I, Rhoten S, Wratten S, Brookes E, O'Malley JT, Bansal A, Msihid J, Thomas R, and Bahloul D
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- Adult, Female, Humans, Male, Middle Aged, Antibodies, Monoclonal, Humanized therapeutic use, Pain etiology, Sleep, Pain Measurement, Patient Reported Outcome Measures, Prurigo drug therapy, Prurigo complications, Quality of Life
- Abstract
Background: Prurigo nodularis (PN) is characterized by intensely itchy nodules/lesions and skin pain, which can have a substantial impact on health-related quality of life (HRQoL). Treatment benefits on such symptoms and impacts are best assessed in trials using patient-reported outcome (PROs) instruments such as Skin Pain Numerical Rating Scale (NRS), Sleep-NRS and Dermatology Life Quality Index (DLQI). However, no guidance exists for interpreting meaningful changes in scores using these PROs in patients with PN., Objectives: The main objective was to derive within-patient (responder definition) and between-group improvement thresholds for interpreting Skin Pain-NRS, Sleep-NRS and DLQI total scores in patients with PN. The measurement properties of the three PROs were also evaluated., Methods: Intention-to-treat (ITT), blinded and pooled data were used from the Phase 3 PRIME (NCT04183335) and PRIME2 (NCT04202679) studies evaluating the efficacy of dupilumab in adult patients with PN. Anchor- and distribution-based methods were applied to derive responder definition and between-group thresholds for Skin Pain-NRS, Sleep-NRS and DLQI. Data were additionally used to examine the instrument measurement properties, including reliability, validity and responsiveness., Results: A total of 311 patients (mean age 49.5 years, 65.3% female) were included in the pooled ITT population. The within-patient improvement threshold for Skin Pain-NRS was estimated as 4.0 points, 2.0 points for Sleep-NRS and 9.0 points for DLQI total score. A 1.5-point improvement in Skin Pain-NRS scores, 1.0-point in Sleep-NRS and 4.0-point in DLQI indicated a between-group meaningful change. Adequate to good psychometric properties were demonstrated for all three instruments., Conclusions: The results of this study can aid interpretation of Skin Pain-NRS, Sleep-NRS and DLQI scores in patients with PN in both clinical trials and clinical practice to better understand and treat PN-related skin pain and the impact of PN on sleep quality and HRQoL., (© 2024 Sanofi and The Authors. Journal of the European Academy of Dermatology and Venereology published by John Wiley & Sons Ltd on behalf of European Academy of Dermatology and Venereology.)
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- 2024
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14. The future of food allergy: Challenging existing paradigms of clinical practice.
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Anagnostou A, Lieberman J, Greenhawt M, Mack DP, Santos AF, Venter C, Stukus D, Turner PJ, and Brough HA
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- Humans, Food, Allergens therapeutic use, Allergists, Quality of Life, Food Hypersensitivity therapy, Food Hypersensitivity prevention & control
- Abstract
The field of food allergy has seen tremendous change over the past 5-10 years with seminal studies redefining our approach to prevention and management and novel testing modalities in the horizon. Early introduction of allergenic foods is now recommended, challenging the previous paradigm of restrictive avoidance. The management of food allergy has shifted from a passive avoidance approach to active interventions that aim to provide protection from accidental exposures, decrease allergic reaction severity and improve the quality of life of food-allergic patients and their families. Additionally, novel diagnostic tools are making their way into clinical practice with the goal to reduce the need for food challenges and assist physicians in the-often complex-diagnostic process. With all the new developments and available choices for diagnosis, prevention and therapy, shared decision-making has become a key part of medical consultation, enabling patients to make the right choice for them, based on their values and preferences. Communication with patients has also become more complex over time, as patients are seeking advice online and through social media, but the information found online may be outdated, incorrect, or lacking in context. The role of the allergist has evolved to embrace all the above exciting developments and provide patients with the optimal care that fits their needs. In this review, we discuss recent developments as well as the evolution of the field of food allergy in the next decade., (© 2023 European Academy of Allergy and Clinical Immunology and John Wiley & Sons Ltd.)
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- 2023
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15. Dose Optimization in Oncology Drug Development: An International Consortium for Innovation and Quality in Pharmaceutical Development White Paper.
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Samineni, Divya, Venkatakrishnan, Karthik, Othman, Ahmed A., Pithavala, Yazdi K., Poondru, Srinivasu, Patel, Chirag, Vaddady, Pavan, Ankrom, Wendy, Ramanujan, Saroja, Budha, Nageshwar, Wu, Michael, Haddish‐Berhane, Nahor, Fritsch, Holger, Hussain, Azher, Kanodia, Jitendra, Li, Meng, Li, Mengyao, Melhem, Murad, Parikh, Apurvasena, and Upreti, Vijay V.
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ANTINEOPLASTIC agents ,DRUG development ,CONSORTIA ,QUALITY of life ,CANCER patients - Abstract
The landscape of oncology drug development has witnessed remarkable advancements over the last few decades, significantly improving clinical outcomes and quality of life for patients with cancer. Project Optimus, introduced by the U.S. Food and Drug Administration, stands as a groundbreaking endeavor to reform dose selection of oncology drugs, presenting both opportunities and challenges for the field. To address complex dose optimization challenges, an Oncology Dose Optimization IQ Working Group was created to characterize current practices, provide recommendations for improvement, develop a clinical toolkit, and engage Health Authorities. Historically, dose selection for cytotoxic chemotherapeutics has focused on the maximum tolerated dose, a paradigm that is less relevant for targeted therapies and new treatment modalities. A survey conducted by this group gathered insights from member companies regarding industry practices in oncology dose optimization. Given oncology drug development is a complex effort with multidimensional optimization and high failure rates due to lack of clinically relevant efficacy, this Working Group advocates for a case‐by‐case approach to inform the timing, specific quantitative targets, and strategies for dose optimization, depending on factors such as disease characteristics, patient population, mechanism of action, including associated resistance mechanisms, and therapeutic index. This white paper highlights the evolving nature of oncology dose optimization, the impact of Project Optimus, and the need for a tailored and evidence‐based approach to optimize oncology drug dosing regimens effectively. [ABSTRACT FROM AUTHOR]
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- 2024
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16. Association Between Smoking and Chronic Rhinosinusitis: A Systematic Review and Meta-Analysis.
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Tan CJ, Leow BHW, Tan BKJ, Tan SF, Teo NWY, and Charn TC
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- Humans, Chronic Disease, Endoscopy, Prevalence, Prognosis, Quality of Life, Rhinosinusitis epidemiology, Smoking adverse effects, Smoking epidemiology
- Abstract
Objective: Chronic rhinosinusitis (CRS) is a prevalent inflammatory disease of the upper airway. The impact of smoking on CRS has not been clearly established. We aim to clarify the association between first-hand cigarette smoking and the prevalence and prognoses of CRS., Review Methods: PubMed, Embase, SCOPUS, and Cochrane Library were searched from inception until May 15, 2022. Three blinded reviewers selected relevant studies, extracted data, and evaluated study bias following a PROSPERO-registered protocol (CRD42022345585). We used random-effects meta-analyses to pool the prevalence of smoking in CRS, association between smoking status and CRS, and association of smoking with quality of life (QOL) before and after functional endoscopic sinus surgery (FESS). We also performed descriptive analyses of olfactory function, CT scores, and endoscopy scores before and after FESS., Results: We included 23 cross-sectional studies, 19 cohort studies, two case-control studies, and one prospective clinical trial. The pooled prevalence of ever-smokers was 40% (95% CI = 0.30-0.51) and 33% (95% CI = 0.25-0.43) in patients with and without CRS. Compared to never-smokers, active smokers and past smokers had 1.35 (95% CI = 1.18-1.55) and 1.23 (95% CI = 1.17-1.29) higher odds of having CRS. Among patients with CRS, non-smokers reported higher initial QOL than smokers (standardized mean difference [SMD] = 0.23, 95% CI = 0.11-0.35), although post-FESS QOL was similar (SMD = 0.10, 95% CI = -0.30-0.51). Descriptive analysis found no significant correlations between smoking and post-FESS olfactory function and endoscopy scores., Conclusions: Cigarette smoking is associated with higher prevalence and odds of CRS. Clinicians should be aware that smoking predisposes to CRS, but does not negatively impact the rhinologic outcomes of FESS. Laryngoscope, 134:2513-2524, 2024., (© 2023 The American Laryngological, Rhinological and Otological Society, Inc.)
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- 2024
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17. Impact of elranatamab on quality of life: Patient-reported outcomes from MagnetisMM-3.
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Mohty M, Bahlis NJ, Nooka AK, DiBonaventura M, Ren J, and Conte U
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- Adult, Aged, Aged, 80 and over, Female, Humans, Male, Middle Aged, Antibodies, Bispecific therapeutic use, Antibodies, Bispecific administration & dosage, Antibodies, Monoclonal, Humanized therapeutic use, B-Cell Maturation Antigen, Multiple Myeloma drug therapy, Multiple Myeloma psychology, Patient Reported Outcome Measures, Quality of Life
- Abstract
The physical and emotional burden of relapsed or refractory multiple myeloma (RRMM) has been strongly correlated with declining health-related quality of life (QOL) in the patients it affects. This analysis evaluated patient-reported outcomes (PROs) from B-cell maturation antigen (BCMA)-naive (n = 123) and -exposed (n = 64) patients with RRMM enrolled in the MagnetisMM-3 study (NCT04649359) and treated with the humanized, bispecific BCMA-CD3 antibody elranatamab. Patients received two step-up doses of elranatamab (12 mg on day 1, 32 mg on day 4) before starting the full dose of 76 mg on day 8 (each cycle = 28 days). Global health status, functioning and symptom data were collected electronically using validated and myeloma-specific questionnaires. Improvements in PROs occurred early, with marked reductions in pain and disease symptoms and notable improvements in patients' outlook for their future health. Additionally, 40.2% of BCMA-naive and 52.6% of BCMA-exposed patients perceived their disease as 'a little better' or 'much better' by Cycle 1, Day 15. The results from this analysis demonstrated that elranatamab maintained or improved symptomology and general health status, regardless of prior BCMA-directed therapy. Thus, in addition to its clinical benefits, elranatamab therapy may sustain or improve QOL in heavily pretreated patients with RRMM., (© 2024 The Authors. British Journal of Haematology published by British Society for Haematology and John Wiley & Sons Ltd.)
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- 2024
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18. Validation of the Finnish version of the food allergy quality of life questionnaire-parent form (F-FAQLQ-PF).
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Kivistö JE, de Blok BF, Protudjer JLP, Ojaniemi I, Karjalainen J, Huhtala H, and Dunn Galvin A
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- Child, Humans, Adolescent, Finland, Surveys and Questionnaires, Parents, Reproducibility of Results, Quality of Life, Food Hypersensitivity diagnosis, Food Hypersensitivity epidemiology
- Abstract
Aim: Specific questionnaires about food allergy and health-related quality of life (HRQoL) have been developed and validated in several languages, but not Finnish. We aimed to validate the Finnish Food Allergy Quality of Life Questionnaire-Parent Form (FAQLQ-PF) for children under age 13 years., Methods: The original FAQLQ-PF and Food Allergy Independent Measure (FAIM) were translated into Finnish per World Health Organisation guidelines and tested by 72 parents of children under age 13 years with suspected severe peanut or tree nut allergy who were recruited at Allergy Centre in Tampere University Hospital in Tampere, Finland. We calculated the construct validity of the questionnaire by calculating the coefficients between the two measures and used Cronbach's alpha to establish the internal consistency., Results: The FAQLQ-PF showed strong correlations with domain structure and internal consistency, based on Spearman's correlations (rho) for the HRQoL questions, FAIM questions and FAIM mean values. The total questionnaire score correlated significantly with the mean FAIM (rho = 0.95, p < 0.001) and individual FAIM questions. The FAQLQ-PF and domains had good or excellent internal consistency (Cronbach's alpha >0.70)., Conclusion: The Finnish FAQLQ-PF demonstrated good construct validity and excellent internal consistency for measuring food allergy HRQoL in children under age 13 years., (© 2023 The Authors. Acta Paediatrica published by John Wiley & Sons Ltd on behalf of Foundation Acta Paediatrica.)
- Published
- 2024
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19. Living in society, living with migraine: Editorial for the 2022 Members' Choice Award paper.
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Seng, Elizabeth K., Parker, Amanda, Shapiro, Robert E., Buse, Dawn C., Robbins, Matthew S., and Lipton, Richard B.
- Subjects
- *
MINDFULNESS , *SOCIAL support , *MIGRAINE , *SOCIAL services case management , *WORK-life balance , *QUALITY of life , *VOCATIONAL rehabilitation , *PSYCHOLOGICAL distress - Abstract
The article offers insights into the social impact of migraine and discusses the choices society has in responding to this problem. It highlights the interconnectedness of individuals with migraine and the potential benefits of accommodating their needs, such as increased productivity and improved well-being for everyone.
- Published
- 2023
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20. Poor dental service utilization in those with clinically severe obesity: A neglected issue with solutions needed.
- Author
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Malik Z, Sohn W, Nanayakkara S, and Williams K
- Subjects
- Adult, Humans, Oral Health, Cross-Sectional Studies, Surveys and Questionnaires, Dental Care, Quality of Life psychology, Obesity, Morbid therapy
- Abstract
Data linking body mass index (BMI) and dental service utilization with oral and general health, quality of life, wellbeing, and mental health are lacking. Adult patients with clinically severe obesity attending a hospital-based obesity service in Greater Western Sydney were invited to participate in a cross-sectional survey that collected data on dental utilization and visiting patterns, dental anxiety, and oral health-related quality of life (OHRQoL). General health data were obtained from participants' medical records. Of the 82 individuals who consented to participate, 81 (98.8%) completed the study questionnaire, and 74 (91.3%) answered additional screening questions related to their general wellbeing and mental health. Of the participants, 50 (61.7%) reported that their last dental visit was more than 1 year ago, 43 (53.1%) visited only as needed and 22 (27.2%) participants reported favourable dental visiting patterns. Twenty-four (29.6%) participants reported high levels of dental anxiety, and low levels of OHRQoL compared with national data. Screening questions suggested low general wellbeing and poor mental health in this patient cohort. Within this group, BMI was not significantly correlated with any of the variables of dental service utilization, dental anxiety, OHRQoL, wellbeing, or mental health (p > .05). There was a negative correlation between dental anxiety and dental utilization (p < .05). Patients with clinically severe obesity reported poor dental utilization, low OHRQoL, and high levels of dental anxiety. This study highlighted the frequency of medical complications, lack of wellbeing, and poor mental health, which were evident in this cohort and may complicate dental management., (© 2023 World Obesity Federation.)
- Published
- 2023
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21. Australian consensus: Treatment goals for moderate to severe psoriasis in the era of targeted therapies - Adult patients.
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Foley P, Gebauer K, Sullivan J, McMeniman E, Shumack S, Ng J, James A, Rawlin M, Sidhu S, Tilakaratne D, Turner M, Radulski B, Nash P, and Baker C
- Subjects
- Humans, Adult, Goals, Australia, Treatment Outcome, Delphi Technique, Quality of Life, Psoriasis drug therapy
- Abstract
Background: Over the last decade, the treatment landscape for moderate-severe psoriasis has rapidly evolved. The Australasian College of Dermatologists sought to review and update previously published treatment goals for moderate-severe psoriasis., Methods: A modified Delphi approach was used. Comprehensive literature review and guideline evaluation resulted in the development of statements and other questions to establish current clinical practices. Two rounds of anonymous voting were undertaken, with a collaborative meeting held in between to discuss areas of discordance. Overall, consensus was defined as achievement of ≥75% agreement in the range 7-9 on a 9-point scale (1 strongly disagree; 9 strongly agree)., Results: Consensus was achieved on 26/29 statements in round 1 and a further 20 statements in round 2. There was strong agreement to expanding the classification/definition of psoriasis severity by including a choice of metrics, incorporating quality of life measures, and widening the scope of high-impact sites. Consensus was also reached on revised treatment response criteria, which were then incorporated into a new treatment algorithm. There was discordance with the current requirement to undertake a trial with established systemic agents before accessing targeted therapy., Conclusion: The ability of new targeted treatment options to change the narrative in psoriasis patient care can only be properly realised if challenges to timely and equitable access are addressed. The proposed framework for the assessment, classification and management of moderate-severe psoriasis aligns with international recommendations. Its adoption into Australian clinical practice is hoped to improve treatment outcomes and patients' satisfaction with their care., (© 2023 The Authors. Australasian Journal of Dermatology published by John Wiley & Sons Australia, Ltd on behalf of Australasian College of Dermatologists.)
- Published
- 2023
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22. A systematic review of quality of life and health-related quality of life as outcomes in substance and behavioural addictions.
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Dyer A, Böhnke JR, Curran D, McGrath K, and Toner P
- Subjects
- Humans, Psychometrics, Reproducibility of Results, Behavior, Addictive therapy, Quality of Life
- Abstract
Issues: Consideration of an individual's quality of life (QoL) can benefit assessment and treatment of addictive disorders, however, uncertainty remains over operationalisation of the construct as an outcome and the appropriateness of existing measures for these populations. This systematic review aimed to identify and evaluate QoL and health-related QoL outcome instruments used in addiction-related risk and harm research and map their conceptualised domains., Approach: Three electronic databases and a specialised assessment library were searched on 1 February 2022 for QoL or health-related QoL outcome instruments used with addiction-related risk and harm populations. PRISMA reporting guidance was followed and included outcome instruments were appraised using mixed methods. Psychometric evidence supporting their use was summarised. The COSMIN risk of bias tool was used to assess validation studies., Key Findings: A total of 298 articles (330 studies) used 53 outcome instruments and 41 unique domains of QoL. Eleven instruments' psychometric properties were evaluated. No instrument was assessed for any parameter in at least five studies for meta-analytic pooling. Cronbach's alpha (α) internal consistency was the most widely assessed parameter with the AQoLS, WHOQOL-BREF, ALQoL-9, Q-LES-Q-SF, SF-12, DUQoL, QLI and SF-36 displaying promising statistics (α > 0.70)., Implications and Conclusion: Many instruments have been utilised. However, a significant proportion of studies applied a small number of instruments with minimal high-quality validation evidence supporting their use within addiction-related risk and harm. Promising instruments are recommended, however, the paucity of supporting evidence limits confidence in the reliability and validity of QoL measurement in these populations., (© 2023 The Authors. Drug and Alcohol Review published by John Wiley & Sons Australia, Ltd on behalf of Australasian Professional Society on Alcohol and other Drugs.)
- Published
- 2023
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23. A position paper on the management of itch and pain in atopic dermatitis from the International Society of Atopic Dermatitis (ISAD)/Oriented Patient‐Education Network in Dermatology (OPENED) task force.
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Misery, L., Belloni Fortina, A., El Hachem, M., Chernyshov, P., Kobyletzki, L., Heratizadeh, A., Marcoux, D., Aoki, V., Zaniboni, M.C., Stalder, J.‐F., and Eichenfield, L.F.
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- *
ATOPIC dermatitis , *PAIN management , *TASK forces , *QUALITY of life , *DERMATOLOGY , *ITCHING - Abstract
Atopic dermatitis (AD) is a disease that can have a high impact on quality of life, especially due to itch and skin pain. This paper utilizes expertise from members of the International Society of Atopic Dermatitis (ISAD)/Oriented Patient‐Education Network in Dermatology (OPENED) task force to review the epidemiology, pathophysiology and exacerbating factors of itch and pain in atopic dermatitis. General principles of treatment are provided, as well as a more detailed evaluation of topical and systemic therapies. Educational and psychological approaches to itch and pain in atopic dermatitis are proposed, along with expert recommendations for the management of itch and pain in atopic dermatitis. [ABSTRACT FROM AUTHOR]
- Published
- 2021
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24. Trait profiles in difficult-to-treat asthma: Clinical impact and response to systematic assessment.
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Lin T, Pham J, Denton E, Lee J, Hore-Lacy F, Sverrild A, Stojanovic S, Tay TR, Murthee KG, Radhakrishna N, Dols M, Bondarenko J, Mahoney J, O'Hehir RE, Dabscheck E, and Hew M
- Subjects
- Adult, Humans, Comorbidity, Respiration, Anxiety, Adrenal Cortex Hormones therapeutic use, Quality of Life, Asthma diagnosis, Asthma drug therapy, Asthma epidemiology
- Abstract
Background: Multidisciplinary systematic assessment improves outcomes in difficult-to-treat asthma, but without clear response predictors. Using a treatable-traits framework, we stratified patients by trait profile, examining clinical impact and treatment responsiveness to systematic assessment., Methods: We performed latent class analysis using 12 traits on difficult-to-treat asthma patients undergoing systematic assessment at our institution. We examined Asthma Control Questionnaire (ACQ-6) and Asthma Quality of Life Questionnaire (AQLQ) scores, FEV
1 , exacerbation frequency, and maintenance oral corticosteroid (mOCS) dose, at baseline and following systematic assessment., Results: Among 241 patients, two airway-centric profiles were characterized by early-onset with allergic rhinitis (n = 46) and adult onset with eosinophilia/chronic rhinosinusitis (n = 60), respectively, with minimal comorbid or psychosocial traits; three non-airway-centric profiles exhibited either comorbid (obesity, vocal cord dysfunction, dysfunctional breathing) dominance (n = 51), psychosocial (anxiety, depression, smoking, unemployment) dominance (n = 72), or multi-domain impairment (n = 12). Compared to airway-centric profiles, non-airway-centric profiles had worse baseline ACQ-6 (2.7 vs. 2.2, p < .001) and AQLQ (3.8 vs. 4.5, p < .001) scores. Following systematic assessment, the cohort showed overall improvements across all outcomes. However, airway-centric profiles had more FEV1 improvement (5.6% vs. 2.2% predicted, p < .05) while non-airway-centric profiles trended to greater exacerbation reduction (1.7 vs. 1.0, p = .07); mOCS dose reduction was similar (3.1 mg vs. 3.5 mg, p = .782)., Conclusion: Distinct trait profiles in difficult-to-treat asthma are associated with different clinical outcomes and treatment responsiveness to systematic assessment. These findings yield clinical and mechanistic insights into difficult-to-treat asthma, offer a conceptual framework to address disease heterogeneity, and highlight areas responsive to targeted intervention., (© 2023 The Authors. Allergy published by European Academy of Allergy and Clinical Immunology and John Wiley & Sons Ltd.)- Published
- 2023
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25. Socioeconomic, comorbidity, lifestyle, and quality of life comparisons between chronic rhinosinusitis phenotypes.
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Philpott C, Ta NH, Hopkins C, Ray J, Ahmed S, Almeyda R, Kara N, Carrie S, Erskine SE, Cathcart R, Sunkaraneni V, Robertson A, Anari S, Kumar BN, and Clark A
- Subjects
- Adolescent, Adult, Aged, Aged, 80 and over, Asthma epidemiology, Case-Control Studies, Chronic Disease epidemiology, Comorbidity, Female, Humans, Male, Middle Aged, Pain Measurement, Phenotype, Prospective Studies, Respiratory Tract Infections epidemiology, Rhinitis epidemiology, Sinusitis epidemiology, Socioeconomic Factors, Surveys and Questionnaires, United Kingdom epidemiology, Life Style, Quality of Life, Rhinitis complications, Sinusitis complications
- Abstract
Background: Chronic rhinosinusitis (CRS) is a heterogeneous group of inflammatory sinonasal disorders with key defining symptoms, but traditionally separated into phenotypes by clinical/endoscopic findings. It is not known whether the two phenotypes have differing socioeconomic, comorbidity, and lifestyle differences. This analysis of the Chronic Rhinosinusitis Epidemiology Study (CRES) database sought to analyze any key differences in the socioeconomic variables between those with CRS with nasal polyps (CRSwNPs) and those without nasal polyps (CRSsNPs). We also sought to analyze differences in comorbidities, lifestyle, and quality of life., Methods: Patients with a confirmed diagnosis of CRS in secondary and tertiary care outpatient settings in the UK were invited to participate in a questionnaire-based case-control study. Variables included demographics, socioeconomic factors, comorbidities, lifestyle factors, and health-related quality of life (HRQoL) (level 3 evidence)., Results: A total of 1204 patients' data were analyzed: 553 CRSsNP and 651 CRSwNP participants. The key socioeconomic variables did not demonstrate any notable differences, nor did lifestyle variables other than alcohol consumption being higher in those with CRSwNP (P = .032), but the latter was not significant after adjusting for age and sex. Aside from confirmation of asthma being more common in CRSwNP, it was notable that this group complained less of upper respiratory tract infections (URTIs), and CRSsNP participants showed evidence of worse HRQoL scores in respect of body pain (P = .001)., Conclusions: Patients with CRSwNP experience higher rates of asthma and lower rates of URTIs; patients with CRSsNP have worse body pain scores. Otherwise, there are no demonstrable significant socioeconomic, comorbidity, lifestyle, or quality of life differences between the two phenotypes., Level of Evidence: 3 Laryngoscope, 131:2179-2186, 2021., (© 2021 The Authors. The Laryngoscope published by Wiley Periodicals LLC on behalf of The American Laryngological, Rhinological and Otological Society, Inc.)
- Published
- 2021
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26. Effects of 9/11-related injury on retirement patterns among World Trade Center Health Registry enrollees.
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Seil K, Yu S, Brackbill R, Alper H, and Maqsood J
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- Employment, Humans, Registries, Survivors, Quality of Life, Retirement
- Abstract
Background: Many survivors of the 9/11/2001 terrorist attacks in New York City sustained injuries. The aim of this study was to understand how 9/11-related injuries affected retirement patterns of World Trade Center Health Registry enrollees., Methods: The study included enrollees who participated in the 2017 Health & Quality of Life Survey, focused on 9/11-related injuries and quality of life, and the 2017-2018 Health & Employment Survey, focused on retirement and employment (N = 3535). Using Cox proportional hazards and logistic regression modeling, we calculated the risk of retiring at earlier ages and the odds of retirees working again, controlling for relevant covariates., Results: Results showed that 9/11-related injuries did affect retirement patterns. Injured enrollees were at greater risk of retiring at younger age compared to non-injured enrollees. Compared to more severely injured retirees, non-injured and less severely injured retirees were significantly more likely to work again postretirement. Our results suggested that being injured on 9/11 was associated with retirement, meaning that if the injury had not occurred, the individual may have continued working longer., Conclusions: The need to retire earlier than planned could be addressed with employer and societal changes. Employers should consider making accommodations for those impacted by 9/11 a priority, as it is imperative for those who were injured on 9/11 to have the ability to work to support their physical, mental, and financial well-being., (© 2021 Wiley Periodicals LLC.)
- Published
- 2021
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27. Sodium–glucose co‐transporter 2 inhibitors in heart failure: beyond glycaemic control. A position paper of the Heart Failure Association of the European Society of Cardiology.
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Seferović, Petar M., Fragasso, Gabriele, Petrie, Mark, Mullens, Wilfried, Ferrari, Roberto, Thum, Thomas, Bauersachs, Johann, Anker, Stefan D., Ray, Robin, Çavuşoğlu, Yuksel, Polovina, Marija, Metra, Marco, Ambrosio, Giuseppe, Prasad, Krishna, Seferović, Jelena, Jhund, Pardeep S., Dattilo, Giuseppe, Čelutkiene, Jelena, Piepoli, Massimo, and Moura, Brenda
- Subjects
- *
CANAGLIFLOZIN , *GLYCEMIC control , *EMPAGLIFLOZIN , *HEART failure , *TYPE 2 diabetes , *SODIUM-glucose cotransporter 2 inhibitors , *VENTRICULAR ejection fraction - Abstract
Heart failure (HF) is common and associated with a poor prognosis, despite advances in treatment. Over the last decade cardiovascular outcome trials with sodium–glucose co‐transporter 2 (SGLT2) inhibitors in patients with type 2 diabetes mellitus have demonstrated beneficial effects for three SGLT2 inhibitors (empagliflozin, canagliflozin and dapagliflozin) in reducing hospitalisations for HF. More recently, dapagliflozin reduced the risk of worsening HF or death from cardiovascular causes in patients with chronic HF with reduced left ventricular ejection fraction, with or without type 2 diabetes mellitus. A number of additional trials in HF patients with reduced and/or preserved left ventricular ejection fraction are ongoing and/or about to be reported. The present position paper summarises recent clinical trial evidence and discusses the role of SGLT2 inhibitors in the treatment of HF, pending the results of ongoing trials in different populations of patients with HF. [ABSTRACT FROM AUTHOR]
- Published
- 2020
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28. Insights into adolescent well-being from computerised analysis of written language.
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Shearer NJ, Gillespie AN, Olds TS, Mensah FK, Edwards B, Fernando JW, Wang Y, Wake M, and Lycett K
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- Adolescent, Adolescent Health, Australia, Child, Child Health, Humans, Language, Quality of Life
- Abstract
Aim: To examine associations between patterns of language use and early adolescent well-being., Methods: Participants were 1763 Australian 11- to 12-year-olds in the Child Health CheckPoint. Six patterns of language use were identified from a writing activity using Linguistic Inquiry and Word Count and factor analysis: Acting in the present and future, Positive emotion, Gender and relationships, Self-aware, Inquisitive and time focused, and Confident. Well-being measures represented a spectrum from negatively to positively framed psychosocial health. Associations between language use and well-being were estimated using linear regression adjusted for age, sex and social disadvantage., Results: Positive emotion (high emotional tone, positive emotion) was associated with better general well-being (standardised regression coefficient (SRC) 0.05; 95% confidence interval 0.00 to 0.11; p = 0.04), life satisfaction (0.06; 0.01 to 0.11; p = 0.03), psychosocial health (0.07; 0.02 to 0.12; p = 0.01) and quality of life (QoL) (0.06; 0.01 to 0.11; p = 0.02). Similarly, Self-aware (high first person singular pronouns, authentic, low clout) was associated with better general well-being, life satisfaction and psychosocial health (SRC 0.05, 0.09, 0.08), but Confident (high clout, first person plural pronouns, affiliation) was associated with worse life satisfaction, psychosocial health and QoL (SRC -0.06, -0.09, -0.06)., Conclusion: If replicated in 'real-world' settings (e.g., social media), language patterns could provide naturalistic insights into early adolescents' well-being., (©2021 Foundation Acta Paediatrica. Published by John Wiley & Sons Ltd.)
- Published
- 2021
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29. Noninvasive and minimally invasive techniques for the diagnosis and management of allergic diseases.
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Baumann R, Untersmayr E, Zissler UM, Eyerich S, Adcock IM, Brockow K, Biedermann T, Ollert M, Chaker AM, Pfaar O, Garn H, Thwaites RS, Togias A, Kowalski ML, Hansel TT, Jakwerth CA, and Schmidt-Weber CB
- Subjects
- Humans, Respiratory System, Skin, Hypersensitivity diagnosis, Hypersensitivity therapy, Quality of Life
- Abstract
Allergic diseases of the (upper and lower) airways, the skin and the gastrointestinal tract, are on the rise, resulting in impaired quality of life, decreased productivity, and increased healthcare costs. As allergic diseases are mostly tissue-specific, local sampling methods for respective biomarkers offer the potential for increased sensitivity and specificity. Additionally, local sampling using noninvasive or minimally invasive methods can be cost-effective and well tolerated, which may even be suitable for primary or home care sampling. Non- or minimally invasive local sampling and diagnostics may enable a more thorough endotyping, may help to avoid under- or overdiagnosis, and may provide the possibility to approach precision prevention, due to early diagnosis of these local diseases even before they get systemically manifested and detectable. At the same time, dried blood samples may help to facilitate minimal-invasive primary or home care sampling for classical systemic diagnostic approaches. This EAACI position paper contains a thorough review of the various technologies in allergy diagnosis available on the market, which analytes or biomarkers are employed, and which samples or matrices can be used. Based on this assessment, EAACI position is to drive these developments to efficiently identify allergy and possibly later also viral epidemics and take advantage of comprehensive knowledge to initiate preventions and treatments., (© 2020 EAACI and John Wiley and Sons A/S. Published by John Wiley and Sons Ltd.)
- Published
- 2021
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30. The persistent pelvic pain study: Factors that influence outcomes in women referred to a public hospital with chronic pelvic pain - A study protocol.
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Mooney SS and Grover SR
- Subjects
- Australia, Female, Hospitals, Public, Humans, New Zealand epidemiology, Pelvic Pain etiology, Randomized Controlled Trials as Topic, Endometriosis complications, Quality of Life
- Abstract
Background: Persistent pelvic pain affects between 10-20% of women with a significant impact on their physical and mental health, sexual relationships, families and society. Estimates of the cost to women and the community is over $9 billion/annum. Although endometriosis is considered a leading cause of pelvic pain, no symptoms reliably allow the identification of those with and without endometriosis. Furthermore, the significance of mild endometriosis is now debated. The optimal clinical approach for pelvic pain and endometriosis remains unclear, with increasing evidence of other contributing factors such as central sensitisation. Studies to date have significant limitations due to their sample size, relatively short follow-up, and inclusion of only women with laparoscopically identified endometriosis., Aims: To undertake a real-world study of women referred with pain to gynaecology outpatients of a women's hospital and explore factors influencing three-year outcomes., Materials and Methods: Five hundred women will be randomised to one of two gynaecology units. The units will provide routine clinical care but their approaches to management of women with pelvic pain and endometriosis differ: one with skilled endoscopic gynaecologists has greater emphasis on surgery, the other, gynaecologists have more medical expertise in managing pain and menstrual problems. Participants will complete six-monthly questionnaires regarding pain and quality of life for three years. This information will not be available to clinicians. Their medical care will be followed from their medical records. The cost of outpatient care and admissions will be calculated. Data will be analysed using STATA software with appropriate post hoc tests. Australian and New Zealand Clinical Trials Registry (ANZCTR:ACTRN12616000150448)., (© 2021 The Royal Australian and New Zealand College of Obstetricians and Gynaecologists.)
- Published
- 2021
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31. Healthy Aging: American Geriatrics Society White Paper Executive Summary.
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Friedman, Susan M., Mulhausen, Paul, Cleveland, Maryjo L., Coll, Patrick P., Daniel, Kathryn M., Hayward, Arthur D., Shah, Krupa, Skudlarska, Beata, and White, Heidi K.
- Subjects
- *
ACTIVE aging , *HEALTH of older people , *HEALTH promotion , *LIFE expectancy , *PREVENTIVE medicine , *AUTONOMY (Psychology) in old age , *QUALITY of life , *FRAIL elderly , *CHRONIC diseases , *DEPENDENCY (Psychology) , *DISEASES , *ELDER care - Abstract
In July 2015, the Journal of the American Geriatrics Society published a manuscript titled, "Failing to Focus on Healthy Aging: A Frailty of Our Discipline?" In response, the American Geriatrics Society (AGS) Clinical Practice and Models of Care Committee and Public Education Committee developed a white paper calling on the AGS and its members to play a more active role in promoting healthy aging. The executive summary presented here summarizes the recommendations from that white paper. The full version is published online at GeriatricsCareOnline.org. Life expectancy has increased dramatically over the last century. Longer life provides opportunity for personal fulfillment and contributions to community but is often associated with illness, discomfort, disability, and dependency at the end of life. Geriatrics has focused on optimizing function and quality of life as we age and reducing morbidity and frailty, but there is evidence of earlier onset of chronic disease that is likely to affect the health of future generations of older adults. The AGS is committed to promoting the health, independence, and engagement of all older adults as they age. Geriatrics as an interprofessional specialty is well positioned to promote healthy aging. We draw from decades of accumulated knowledge, skills, and experience in areas that are central to geriatric medicine, including expertise in complexity and the biopsychosocial model; attention to function and quality of life; the ability to provide culturally competent, person‐centered care; the ability to assess people's preferences and values; and understanding the importance of systems in optimizing outcomes. J Am Geriatr Soc 67:17–20, 2019. [ABSTRACT FROM AUTHOR]
- Published
- 2019
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32. The Case for Mobility Assessment in Hospitalized Older Adults: American Geriatrics Society White Paper Executive Summary.
- Author
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Wald, Heidi L., Ramaswamy, Ravishankar, Perskin, Michael H., Roberts, Lloyd, Bogaisky, Michael, Suen, Winnie, and Mikhailovich, Anna
- Subjects
- *
MOBILITY of older people , *OLDER patients , *HOSPITAL patients , *FUNCTIONAL loss in older people , *MUSCLE mass , *HEALTH of older people , *MUSCLE strength , *GERIATRIC assessment , *SOCIAL participation , *MOVEMENT disorders , *HOSPITAL care of older people , *LENGTH of stay in hospitals , *QUALITY of life , *ACTIVITIES of daily living , *OLD age , *DIAGNOSIS - Abstract
Mobility can be defined as the ability to move or be moved freely and easily. In older adults, mobility impairments are common and associated with risk for additional loss of function. Mobility loss is particularly common in these individuals during acute illness and hospitalization, and it is associated with poor outcomes, including loss of muscle mass and strength, long hospital stays, falls, declines in activities of daily living, decline in community mobility and social participation, and nursing home placement. Thus, mobility loss can have a large effect on an older adult's health, independence, and quality of life. Nevertheless, despite its importance, loss of mobility is not a widely recognized outcome of hospital care, and few hospitals routinely assess mobility and intervene to improve mobility during hospital stays. The Quality and Performance Measurement Committee of the American Geriatrics Society has developed a white paper supporting greater focus on mobility as an outcome for hospitalized older adults. The executive summary presented here focuses on assessing and preventing mobility loss in older adults in the hospital and summarizes the recommendations from that white paper. The full version of the white paper is available as Text S1. J Am Geriatr Soc 67:11–16, 2019. [ABSTRACT FROM AUTHOR]
- Published
- 2019
- Full Text
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33. Quality of life measurement in occupational skin diseases. Position paper of the European Academy of Dermatology and Venereology Task Forces on Quality of Life and Patient Oriented Outcomes and Occupational Skin Disease.
- Author
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Chernyshov, P.V., John, S.M., Tomas‐Aragones, L., Gonçalo, M., Svensson, A., Bewley, A., Evers, A.W.M., Szepietowski, J.C., Marron, S.E., Manolache, L., Pustisek, N., Suru, A., Salavastru, C.M., Tiplica, G.S., Salek, M.S., and Finlay, A.Y.
- Subjects
- *
QUALITY of life measurement , *OCCUPATIONAL diseases , *SKIN diseases , *TASK forces , *QUALITY of life - Abstract
The European Academy of Dermatology and Venereology (EADV) has started the 'Healthy Skin @ Work' campaign aimed to raise awareness among the public and EU authorities on the frequency and impact of occupational skin diseases (OSDs). The EADV Task Forces (TFs) on Quality of Life and Patient Oriented Outcomes (QoL/PO) and on OSD present their mutual position statement on QoL assessment in OSDs. The EADV TFs recommend the use of the DLQI as a dermatology‐specific instrument and SF‐36 as a generic instrument in health‐related (HR) QoL studies on OSDs. The OSD‐specific questionnaire, LIOD, is not recommended for general use in its present form because of its three months recall period. The EADV TFs discourage the use of non‐validated and of non‐validated modifications of previously validated HRQoL instruments. The EADV TFs wish to encourage research into: the HRQoL impact of OSDs other than occupational contact dermatitis and hand eczema; comparisons between the effects of different treatments and other interventions on HRQoL in OSDs; and into the HRQoL impairment of patients with OSDs from different countries, and with different provoking factors, to predict if the results of successful therapeutic and educational interventions may be generalized across countries and between occupations. [ABSTRACT FROM AUTHOR]
- Published
- 2020
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34. EAACI Guidelines on the effective transition of adolescents and young adults with allergy and asthma.
- Author
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Roberts G, Vazquez-Ortiz M, Knibb R, Khaleva E, Alviani C, Angier E, Blumchen K, Comberiati P, Duca B, DunnGalvin A, Garriga-Baraut T, Gore C, Gowland MH, Hox V, Jensen B, Mortz CG, Pfaar O, Pite H, Santos AF, Sanchez-Garcia S, and Timmermans F
- Subjects
- Adolescent, Delivery of Health Care, Humans, Young Adult, Asthma therapy, Quality of Life
- Abstract
Adolescent and young adult (AYA) patients need additional support, while they experience the challenges associated with their age. They need specific training to learn the knowledge and skills required to confidently self-manage their allergies and/or asthma. Transitional care is a complex process, which should address the psychological, medical, educational and vocational needs of AYA in the developmentally appropriate way. The European Academy of Allergy and Clinical Immunology has developed a clinical practice guideline to provide evidence-based recommendations for healthcare professionals to support the transitional care of AYA with allergy and/or asthma. This guideline was developed by a multidisciplinary working panel of experts and patient representatives based on two recent systematic reviews. It sets out a series of general recommendations on operating a clinical service for AYA, which include the following: (a) starting transition early (11-13 years), (b) using a structured, multidisciplinary approach, (c) ensuring AYA fully understand their condition and have resources they can access, (d) active monitoring of adherence and (e) discussing any implications for further education and work. Specific allergy and asthma transition recommendations include (a) simplifying medication regimes and using reminders; (b) focusing on areas where AYA are not confident and involving peers in training AYA patients; (c) identifying and managing psychological and socio-economic issues impacting disease control and quality of life; (d) enrolling the family in assisting AYA to undertake self-management; and (e) encouraging AYA to let their friends know about their allergies and asthma. These recommendations may need to be adapted to fit into national healthcare systems., (© 2020 EAACI and John Wiley and Sons A/S. Published by John Wiley and Sons Ltd.)
- Published
- 2020
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35. Quality of life of caregivers of end-stage kidney disease patients: Caregivers or care recipients?
- Author
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Vovlianou S, Koutlas V, Ikonomou M, Vassilikopoulos T, Papoulidou F, and Dounousi E
- Subjects
- Humans, Caregivers psychology, Family psychology, Anxiety, Quality of Life psychology, Kidney Failure, Chronic
- Abstract
Background: End-stage kidney disease (ESKD) patients require specific and continuous care, which affects caregivers' quality of life (QOL). It is necessary to define the basic problems and restrictions upon family caregivers of renal patients affecting their physical and psychological status., Objectives: The main objectives of this narrative review were to examine the literature over the past 10 years, to describe factors associated with QOL of caregivers of patients with ESKD, and to identify the level of subjective burden reported by caregivers., Methods: A literature search was carried out using the following electronic databases: PubMed, Medscape, Science Direct, Scopus, PsychINFO and other scientific sources. Keywords included 'quality of life', 'caregivers', 'end stage kidney or renal disease patients', 'burden' and a combination of these terms. Only studies from January 2010 to December 2020 were included in this study., Results: The results found that there was significant burden and distress experienced by caregivers that affected their QOL. Patients' QOL is associated with caregivers' QOL. The hours of caring per day and the long-term replacement therapy are associated with great burden., Conclusions: More awareness to caregivers' QOL is required to meet their needs, reduce anxiety and to improve patients' QOL. Caregiver support could empower and prepare them for initiation of replacement therapy. This can potentially enhance their diseased family members' QOL and could also restrict the use of health care system resources. Given how difficult it is to conceptualize QOL, a holistic approach to patients and caregivers require QOL assessment in each stage of the kidney disease., (© 2021 European Dialysis and Transplant Nurses Association/European Renal Care Association.)
- Published
- 2023
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36. The National Psoriasis Foundation psoriasis treatment targets in real-world patients: prevalence and association with patient-reported outcomes in the Corrona Psoriasis Registry.
- Author
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Merola JF, Perez Chada LM, Siegel M, Bagel J, Evans C, Lockshin B, Mason M, Guo N, McLean RR, Greenberg JD, and Van Voorhees AS
- Subjects
- Cross-Sectional Studies, Humans, Patient Reported Outcome Measures, Prevalence, Registries, Severity of Illness Index, Psoriasis drug therapy, Psoriasis epidemiology, Quality of Life
- Abstract
Introduction: The National Psoriasis Foundation (NPF) published treat-to-target guidelines for psoriasis, yet their applicability in clinical practice remains unknown., Objectives: To estimate the proportion of psoriasis patients meeting the NPF's body surface area (BSA) 'target' (≤1%) and 'acceptable' (≤3%) response criteria and the cross-sectional associations of these criteria with patient-reported outcomes (PROs) in the Corrona Psoriasis Registry., Methods: Separately for three independent cross-sectional cohorts of patients at the (i) enrolment, (ii) 6-month and (iii) 12-month visits, we calculated the proportion of patients with BSA ≤1% and ≤3%. Furthermore, we calculated odds ratios estimating the risk of PROs associated with not meeting criteria in the 6-month cohort., Results: The enrolment, 6- and 12-month cohorts included 2794, 1310 and 629 patients, respectively. At enrolment, 24% of patients had a BSA ≤ 1% and 41% a BSA ≤ 3%. In the 6-month cohort, 43%/64% had a BSA ≤ 1%/BSA ≤ 3%. In the 12-month cohort, 46%/69% of patients had a BSA ≤ 1%/BSA ≤ 3%. Patients not at target/acceptable criteria had higher odds for worse quality of life compared with those who were., Conclusion: While most patients at 6- and 12-month visits were at the 'acceptable' response, less than half were at the 'target' response despite systemic therapy. There remain unmet needs to optimize psoriasis therapy and further validate current treat-to-target guidelines., (© 2020 European Academy of Dermatology and Venereology.)
- Published
- 2020
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37. Height and life satisfaction: Evidence from 27 nations.
- Author
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Habibov N, Luo R, Auchynnikava A, and Fan L
- Subjects
- Adult, Aged, Aged, 80 and over, Asia, Central, Europe, Female, Humans, Male, Middle Aged, Young Adult, Body Height, Personal Satisfaction, Quality of Life
- Abstract
Objectives: To evaluate the effect of height on life satisfaction., Methods: We use data from a recent multi-country survey that was conducted in 27 nations., Results: Our main finding is that height does have a strong positive effect on life satisfaction. These findings remain positive and significant when we use a comprehensive set of well-known covariates of life-satisfaction at both the individual and country levels. These findings also remain robust to alternative statistical specifications., Conclusions: From a theoretical standpoint, our findings suggest that height is important in explaining life-satisfaction independent of other well-known determinants. From a methodological standpoint, the findings of this study highlight the need to explicitly control for the effect of heights in studies on subjective well-being, happiness, and life-satisfaction., (© 2019 Wiley Periodicals, Inc.)
- Published
- 2020
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38. Impact analysis of heart failure across European countries: an ESC‐HFA position paper.
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Rosano, Giuseppe M.C., Seferovic, Petar, Savarese, Gianluigi, Spoletini, Ilaria, Lopatin, Yuri, Gustafsson, Fin, Bayes‐Genis, Antoni, Jaarsma, Tiny, Abdelhamid, Magdy, Miqueo, Arantxa Gonzalez, Piepoli, Massimo, Tocchetti, Carlo G., Ristić, Arsen D., Jankowska, Ewa, Moura, Brenda, Hill, Loreena, Filippatos, Gerasimos, Metra, Marco, Milicic, Davor, and Thum, Thomas
- Subjects
FAILURE analysis ,HEART failure ,DISEASE prevalence ,QUALITY of life ,MEDICAL care costs ,ETIOLOGY of diseases - Abstract
Heart failure (HF) is a long‐term clinical syndrome, with increasing prevalence and considerable healthcare costs that are further expected to increase dramatically. Despite significant advances in therapy and prevention, mortality and morbidity remain high and quality of life poor. Epidemiological data, that is, prevalence, incidence, mortality, and morbidity, show geographical variations across the European countries, depending on differences in aetiology, clinical characteristics, and treatment. However, data on the prevalence of the disease are scarce, as are those on quality of life. For these reasons, the ESC‐HFA has developed a position paper to comprehensively assess our understanding of the burden of HF in Europe, in order to guide future policies for this syndrome. This manuscript will discuss the available epidemiological data on HF prevalence, outcomes, and human costs—in terms of quality of life—in European countries. [ABSTRACT FROM AUTHOR]
- Published
- 2022
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39. The Intestinal Gas Questionnaire (IGQ): Psychometric validation of a new instrument for measuring gas‐related symptoms and their impact on daily life among general population and irritable bowel syndrome.
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Duracinsky, Martin, Archbold, Sharon, Lobo, Beatriz, Bessonneau, Pascal, Thonon, Frédérique, Santos, Javier, Guagnozzi, Danila, Payakachat, Nalin, Coffin, Benoit, Azpiroz, Fernando, Whorwell, Peter J., and Chassany, Olivier
- Subjects
IRRITABLE colon ,MEASURING instruments ,EVERYDAY life ,FACTOR analysis ,INTRACLASS correlation ,ELECTRONIC paper - Abstract
Background: Gas‐related symptoms (GRS) are common in the general population (GPop) and among patients with disorders of gut‐brain interactions but there is no patient‐reported outcome evaluating these symptoms and their impact on daily life. We have previously developed a 43‐item intestinal gas questionnaire (IGQ). The aim of the present study is to perform a psychometric validation of this instrument. Methods: Participants (119 from the GPop and 186 irritable bowel syndrome (IBS) patients) were recruited from 3 countries (UK, Spain, France). IBS patients fulfilled ROME IV criteria with an IBS severity score between 150 and 300. Participants completed the IGQ, the functional Digestive Disorders Quality of Life (FDDQL), and the EQ‐5D. A subgroup (n = 90) repeated the IGQ completion after 7 days on paper or electronically. Results: From the original IGQ questionnaire, 26 items were deleted because of poor performance. Confirmatory factorial analysis on the remaining 17 items (7 symptom and 10 impact items) yielded a 6‐factor structure accounting for 67% of the variance for bloating (6 items), flatulence (3), belching (2), bad breath (2), stomach rumbling (2), and difficult gas evacuation (2). Global score (0‐100) was worse among IBS vs GPop (40 ± 15 vs 33 ± 17; p = 0.0016). At the second visit, the intraclass correlation coefficient of IGQ scores was between 0.71 and 0.86 (n = 67) for test‐retest reliability and 0.61‐0.87 (n = 64) for equivalence between electronic and paper versions of IGQ. Conclusion: The IGQ available in paper and electronic versions in 3 languages is a robust instrument for capturing and measuring GRS and their impact on daily life. [ABSTRACT FROM AUTHOR]
- Published
- 2022
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40. Flourishing among adolescents living with chronic pain and their parents: A scoping review.
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Parsons, Ryan D., McParland, Joanna L., Halligan, Sarah L., Goubert, Liesbet, and Jordan, Abbie
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CHRONIC pain & psychology ,MEDICAL databases ,POSITIVE psychology ,PSYCHOLOGY of parents ,MEDICAL information storage & retrieval systems ,SOCIAL support ,SYSTEMATIC reviews ,PATIENT psychology ,QUALITY of life ,RESEARCH funding ,LITERATURE reviews ,MEDLINE ,ADOLESCENCE - Abstract
Evidence exists regarding the impact of flourishing in individuals living with chronic pain, but there are currently no reviews which collate the literature on flourishing in adolescents living with chronic pain and their parents. Therefore, the aim of this scoping review was to map and review the current literature, to document how flourishing is defined and understood in the literature, and to identify gaps in the field. Six databases were searched (Web of Science, Medline, Embase, APA PsycNet and the Cochrane Central Register of Controlled Trials). In addition, a limited gray literature search was conducted. The resulting data were collated and reported in relation to the review questions, by examining the included papers to search for the presence of flourishing. Database searches resulted in 7326 papers after duplicate removal, with eight remaining papers being assessed for full‐text eligibility. Following full‐text screening, a final four papers were included in the review. Within the papers, flourishing was defined in relation to commonalities of benefit finding, enhanced maturity and growth, and social support. Gaps in the literature and directions for future research are considered. This review suggests that there is a dearth of knowledge and research regarding flourishing among adolescents living with chronic pain and their parents, despite aspects of flourishing identified in limited literature. This warrants further investigation. [ABSTRACT FROM AUTHOR]
- Published
- 2022
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41. Do age stereotype-based interventions affect health-related outcomes in older adults? A systematic review and future directions.
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Knight RL, Chalabaev A, McNarry MA, Mackintosh KA, and Hudson J
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- Aged, Aging, Exercise, Humans, Middle Aged, Motivation, Health Promotion, Quality of Life
- Abstract
Purpose: Developing interventions that target population-specific motivational barriers to promote health behaviours is crucial, especially for older adults who are confronted with negative age stereotypes. This systematic review evaluates randomized and non-randomized field studies that tested the effects of age stereotype-based interventions on health outcomes in adults aged 50 years and over., Methods: MEDLINE, SPORTDiscus, Scopus, Web of Science Core Collection and PsychINFO were searched to identify articles published up until May 2019. Data were extracted from all articles independently and assessed for risk-of-bias using Cochrane Collaboration tools., Results: Ten articles met the inclusion criteria. Health-related outcome measures were identified across three domains: physical, psychological/psychosocial well-being, and quality of life/subjective health, with age stereotypes reported as an additional outcome. Intervention structure varied substantially between studies regarding content, duration, frequency, and length of follow-up., Conclusions: Most studies showed that age stereotype-based interventions significantly improved physical function or physical activity as well as self-perceptions of ageing. However, more rigorous studies are needed. Indeed, given the detrimental health effects of age stereotypes, the potential for impact of interventions designed to challenge them is important. Future research should explore the implications of intervening on different stereotype mechanisms, whether intervention effects are comparable across health domains, and whether age stereotype-based interventions are more effective than non-age-specific interventions. PROSPERO Registration CRD42018094006., (© 2021 The British Psychological Society.)
- Published
- 2022
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42. Sensitive skin: A relevant syndrome, be aware.
- Author
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Wollenberg A and Giménez-Arnau A
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- Humans, Paresthesia, Pruritus drug therapy, Skin, Quality of Life, Skin Diseases diagnosis, Skin Diseases etiology
- Abstract
Sensitive skin is clinically defined by characteristic sensory perceptions including tightness, abnormal stinging, burning, tingling, pain and pruritus. Facial erythema may occur, and other body areas can be involved. Sensitive skin affects extremely the quality of life. According with the International Forum for the Study of Itch (IFSI), sensitive skin is defined as a syndrome. The unpleasant sensations described are in response to stimuli that normally should not provoke such sensations. Moreover, these unpleasant sensations cannot be explained by any skin disease. Sensitive skin is always considered when any new consumer health, cosmetic or household product is introduced in the market. Once sensitive skin is recognized, it is mandatory to identify specific triggers that commonly induce symptoms and even cutaneous visible signs. Sensitive skin syndrome can be exacerbated by an allergic setting and environmental factors (cold, hot, dryness, pollution, wind, chemicals ...), a source of intolerance and unpleasant sensations. Cosmetics are the main triggering factors of sensitive skin according to patient's reports. The presence of potentially irritant substances in their composition increases the clinical expression of symptoms. As sensitive skin is frequent, and it is increasing based on the current development of cosmetic use worldwide, there is a need to develop better skin care products. The continuous research of active and safe skin care products to prevent and treat sensitive skin is extremely welcome., (© 2022 European Academy of Dermatology and Venereology.)
- Published
- 2022
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43. Single-dose versus low-dose rituximab in corticosteroid-resistant or relapsed ITP: A multicenter, randomized, controlled study.
- Author
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Ni X, Li D, Yuan C, Yu Y, Wang H, Wang L, Yu T, Qin P, Peng J, Hou M, Shi Y, and Hou Y
- Subjects
- Humans, Prospective Studies, Remission Induction, Rituximab adverse effects, Treatment Outcome, Adrenal Cortex Hormones therapeutic use, Quality of Life
- Abstract
Primary immune thrombocytopenia (ITP) is an autoimmune bleeding disorder, in which rituximab (RTX) induces the best long-term effect among recommended second-line treatments. Nevertheless, the optimal regimen of RTX remains unclear. We herein conducted a prospective, multicenter, open-label, randomized controlled trial to compare the efficacy and safety of RTX at two different dosage regimens in patients with corticosteroid-resistant or relapsed ITP. Recruited patients were randomly assigned (1:1) to receive either RTX at a repeated low dose (100 mg weekly for 4 weeks, LD-RTX) or at a single dose (375 mg/m
2 , S-RTX). Overall response was achieved in 64.3% of patients who received LD-RTX versus 67.4% of those receiving S-RTX (p = .759). The complete response (CR) rate was 23.8% after LD-RTX and 28.3% after S-RTX (p = .635). In health-related quality of life, S-RTX improved patients' psychological status, quality of life, social activities, and work compared with LD-RTX. Furthermore, S-RTX significantly reduced physician visits without compromising efficacy. Our findings demonstrate that a S-RTX is comparable to LD-RTX in effectiveness and safety for treatment of corticosteroid-resistant or relapsed ITP. The single-dosage regimen optimizes the use of medical resources, improves the cost-effectiveness of RTX, and represents a promising and more convenient replacement for LD-RTX in ITP. This study has been completed and is registered with ClinicalTrials.gov, number NCT03258866., (© 2022 Wiley Periodicals LLC.)- Published
- 2022
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44. Commentary on Reinders, Stainton, and Parmenter's Stimulus Paper.
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Taggart, Laurence
- Subjects
- *
ASSISTED suicide , *DEVELOPMENTAL disabilities , *EUTHANASIA , *MEDICAL genetics , *PEOPLE with intellectual disabilities , *QUALITY of life - Abstract
The article discusses the commentary on a stimulus paper which discusses the medical practices that objectively question human life affected by intellectual and developmental disability (IDD). Topics include growth in offering commercially available blood tests to screen for genetic abnormalities in pregnant mothers in some countries, resulting in abortions; and exploring how the decision is taken to legally terminate premature babies with severe disabilities and life threatening conditions.
- Published
- 2019
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45. Nurses leading male lower urinary tract symptom (LUTS) clinics: A scoping review.
- Author
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Middleton, Claire and Dunleavy, Stephanie
- Subjects
FERTILITY clinics ,CINAHL database ,RESEARCH ,UROLOGICAL nursing ,BLADDER ,NURSING ,HEALTH services accessibility ,URINARY tract infections ,SYSTEMATIC reviews ,TREATMENT effectiveness ,NURSES ,QUALITY of life ,HEALTH care teams ,DESCRIPTIVE statistics ,LITERATURE reviews ,MEDLINE ,NURSE practitioners ,SYMPTOMS - Abstract
Nurse‐led clinics are known to positively impact and benefit patients; however, there is little understanding of the role of the nurse in a nurse‐led male Lower Urinary Tract Symptoms (LUTS) clinic. LUTS affect up to 30% of males over 65 in the United Kingdom and can significantly impact the quality of life of the person experiencing them. LUTS can be managed with conservative changes, as well as with medication and surgical intervention. The aim of this scoping review is to map what is known about the role of the nurse in a nurse‐led male LUTS clinic and what research tells us regarding, the barriers and enablers in nurses leading a male LUTS clinic. This scoping review follows the Preferred Reporting Items for Systematic Reviews and Meta‐Analyses extension for Scoping Reviews (PRISMA‐SCR) checklist and the methodological guidelines set out by the Joanna Briggs institute. A literature search was carried out over three databases (CINAHL, Medline Ovid, ProQuest health and medical collection) and systematically searched from 2000 to 2021. Grey literature was also searched, and citation chaining was undertaken. Following a systematic review of the literature, four papers met the inclusion criteria for this scoping review. The emergent themes across the four papers consisted of structure, assessment and resources, and effectiveness of the nurse‐led male LUTS clinic. There was clear agreement across the literature regarding the investigations and assessment the nurse should carry out. Ongoing practical, theoretical, and observational training and education is required to ensure the nurse is competent in running a male LUTS clinic. The papers reviewed showed the nurse provided a supportive role to the consultant. However, there is evidence indicating there is a move towards autonomous practice. There is a dearth of the current research relating to the role of the nurse in nurse‐led male LUTS clinics and the enablers and barriers in nurses leading male LUTS clinics. Further research should be considered to gain a better understanding of where nurse‐led male LUTS clinics currently take place, what the role of the nurse is in leading a LUTS clinic and what enablers and barriers exist. [ABSTRACT FROM AUTHOR]
- Published
- 2023
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46. Supporting a person-centred approach in clinical guidelines. A position paper of the Allied Health Community - Guidelines International Network (G-I-N).
- Author
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Dulmen, Simone A., Lukersmith, Sue, Muxlow, Josephine, Santa Mina, Elaine, Nijhuis‐van der Sanden, Maria W.G., and Wees, Philip J.
- Subjects
- *
MEDICAL personnel , *ALLIED health personnel , *ATTITUDE (Psychology) , *DECISION making , *DISCUSSION , *HEALTH status indicators , *INTERNET , *LIFE skills , *MATHEMATICAL models , *EVALUATION of medical care , *MEDICAL protocols , *NOSOLOGY , *QUALITY of life , *ADULT education workshops , *THEORY , *PATIENT-centered care - Abstract
Background: A person‐centred approach in the context of health services delivery implies a biopsychosocial model focusing on all factors that influence the person's health and functioning. Those wishing to monitor change should consider this perspective when they develop and use guidelines to stimulate active consideration of the person's needs, preferences and participation in goal setting, intervention selection and the use of appropriate outcome measures. Objective: To develop a position paper that promotes a person‐centred approach in guideline development and implementation. Design, setting and participants: We used three narrative discussion formats to collect data for achieving consensus: a nominal group technique for the Allied Health Steering Group, an Internet discussion board and a workshop at the annual G‐I‐N conference. We analysed the data for relevant themes to draft recommendations. Results: We built the position paper on the values of the biopsychosocial model. Four key themes for enhancing a person‐centred approach in clinical guidelines emerged: (i) use a joint definition of health‐related quality of life as an essential component of intervention goals, (ii) incorporate the International Classification of Functioning, Disability and Health (ICF) as a framework for considering all domains related to health, (iii) adopt a shared decision‐making method, and (iv) incorporate patient‐reported health outcome measures. The position statement includes 14 recommendations for guideline developers, implementers and users. Conclusion: This position paper describes essential elements for incorporating a person‐centred approach in clinical guidelines. The consensus process provided information about barriers and facilitators that might help us develop strategies for implementing person‐centred care. [ABSTRACT FROM AUTHOR]
- Published
- 2015
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47. Exploring the clinical relevance of a dichotomy between affective and non-affective psychosis: Results from a first-episode psychosis cohort study.
- Author
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Ramain J, Conus P, and Golay P
- Subjects
- Cohort Studies, Female, Humans, Male, Prospective Studies, Time Factors, Psychotic Disorders complications, Psychotic Disorders diagnosis, Psychotic Disorders psychology, Quality of Life
- Abstract
Aim: Defining diagnosis is complex in early psychosis, which may delay the introduction of an appropriate treatment. The dichotomy of affective and non-affective psychosis is used in clinical setting but remains questioned on a scientific basis. In this study, we explore the clinical relevance of this dichotomy on the basis of clinical variables in a sample of first-episode psychosis patients., Method: We conducted a prospective study in a sample of 330 first-episode psychosis treated at an early intervention program. Affective and non-affective psychosis patients were compared on premorbid history, baseline data, outcomes and course of symptoms over the 3 years of treatment., Results: Affective psychosis patients (22.42%) were more likely to be female, and had a shorter duration of untreated psychosis. The longitudinal analyses revealed that positive symptoms remained higher over the entire follow-up in the non-affective sub-group. A higher degree of variability of manic symptoms and a significantly better insight after 6 months were observed in the affective sub-group. No difference was observed regarding depressive and negative symptoms. At discharge, only the environmental quality of life and insight recovery were better in affective psychosis., Conclusions: Our study suggests that despite marginal differences at baseline presentation, these sub-groups differ regarding outcome, which may require differentiation of treatment and supports the utility of this dichotomy., (© 2021 John Wiley & Sons Australia, Ltd.)
- Published
- 2022
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48. Stress urinary incontinence and quality of life: A reliability study of a condition-specific instrument in paper and web-based versions.
- Author
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Sjöström, M., Stenlund, H., Johansson, S., Umefjord, G., and Samuelsson, E.
- Abstract
Aims Quality of life is an important outcome measure in studies of urinary incontinence. Electronic collection of data has several advantages. We examined the reliability of the Swedish version of the highly recommended condition-specific quality of life questionnaire International Consultation on Incontinence Modular Questionnaire-Lower Urinary Tract Symptoms Quality of Life (ICIQ-LUTSqol), in paper and web-based formats in women with stress urinary incontinence. Methods Women aged 18-70 years, with stress urinary incontinence at least once weekly, were recruited via the project's website and answered the ICIQ-LUTSqol questionnaire. Respondents completed either the paper version twice (n = 78), or paper and web-based versions once each (n = 54). The ICIQ validation protocol was followed. Results The mean interval between answers was 18.1 (SD = 3.1) days in the paper versus paper setting and 15.0 (SD = 7.8) days in the paper versus web-based setting. Internal consistency was excellent, with Cronbach's alpha coefficients of 0.87 for the paper version and 0.86 for the web-based version. There was a high degree of agreement of overall scores with intraclass correlations in the paper versus paper and paper versus web-based settings: 0.95 ( P < 0.001) and 0.92 ( P < 0.001), respectively. The mean of each individual item's weighted kappa value was 0.61 in both settings. Conclusions The questionnaire is reliable in women with stress urinary incontinence, and it can be used in either a paper or a web-based version. Neurourol. Urodynam. 31:1242-1246, 2012. © 2012 Wiley Periodicals, Inc. [ABSTRACT FROM AUTHOR]
- Published
- 2012
- Full Text
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49. The association between halitosis and oral-health-related quality of life: A systematic review and meta-analysis.
- Author
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Schertel Cassiano L, Abdullahi F, Leite FRM, López R, Peres MA, and Nascimento GG
- Subjects
- Adult, Bibliometrics, Cross-Sectional Studies, Humans, Oral Health, Halitosis epidemiology, Quality of Life
- Abstract
Aim: To investigate whether halitosis is associated with impaired oral-health-related quality of life (OHRQoL)., Materials and Methods: This is a systematic review of the literature. Electronic searches were performed in PubMed via Medline, Web of Science, Scopus, and EMBASE up to and including June 2021. Observational studies that assessed halitosis in association with OHRQoL were included. The pooled standardized mean difference (SMD) was estimated by meta-analysis., Results: Thirteen studies were included in the review; however, the meta-analysis included only 10 studies, all cross-sectional, comprising 2692 individuals. The overall meta-analysis showed an association between halitosis and impaired OHRQoL (SMD 0.51; 95% confidence interval 0.27-0.75). Subgroup analyses, however, indicated that this association remained only among adults. Neither the OHRQoL instrument nor the halitosis assessment method, or the cultural background, influenced the pooled estimates. Meta-regression analyses revealed that the OHRQoL instrument, the halitosis assessment method, and the sample composition did not explain the between-study heterogeneity. Methodological quality appeared to explain 20% of the overall heterogeneity, as studies with high risk of bias overestimated the magnitude of the association., Conclusion: Our findings suggest that halitosis is associated with impaired OHRQoL., (© 2021 John Wiley & Sons A/S. Published by John Wiley & Sons Ltd.)
- Published
- 2021
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50. Validation of Spanish version of 15-item myasthenia gravis quality-of-life questionnaire.
- Author
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Contreras JP, Salinas R, Vidal C, Hoffmeister L, Wolfe GI, and Cea G
- Subjects
- Adolescent, Adult, Aged, Female, Humans, Language, Middle Aged, Reproducibility of Results, Surveys and Questionnaires, Myasthenia Gravis diagnosis, Quality of Life
- Abstract
Objectives: The aim of this study was to achieve the translation and cross-cultural adaptation of the MG-QOL15R questionnaire into Spanish and the analysis of its psychometric properties., Materials and Methods: We recruited patients with MG, ≥18 years old, whose mother tongue was Spanish. After the translation and cross-cultural adaptation of the MG-QOL15-R, the following tests were performed: internal consistency using the Cronbach-α coefficient and corrected item-total correlations; reproducibility with a test-retest analysis using intraclass correlation coefficients; and concurrent validity using Spearman's correlation coefficient of the Spanish language MG-QOL15R-S, Myasthenia Gravis Activity of Daily Living (MG-ADL) and Quantitative Myasthenia Gravis (QMG) scores. As an approximation to construct validity, the nonparametric Mann-Whitney U test was performed between MG-QOL15R-S scores according to the Myasthenia Gravis Foundation of America classification., Results: A total of 83 MG patients were enrolled, mean age 48.19 ± 17.25 years; 58 (69.9%) were women. The mean MG-QOL15R-S score was 11.3 ± 7.1. Cronbach-α coefficient was 0.92. Item-total correlation ranged between 0.43 and 0.75. Intraclass correlation coefficient was 0.80. The Spearman correlation coefficient was 0.637 (p-value < .001) for MG-ADL and 0.487 (p-value < .001) for QMG. Mann-Whitney U tests of the mean MG-QOL15R-S scores were significantly different according to the clinical severity (p-value < .001)., Conclusions: The Spanish version of the MG-QOL15R is a valid and reliable instrument and potentially useful for measuring health-related quality of life in Spanish-speaking MG patients., (© 2021 John Wiley & Sons A/S. Published by John Wiley & Sons Ltd.)
- Published
- 2021
- Full Text
- View/download PDF
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