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Patient related Outcome Measures

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https://read.qxmd.com/read/30774490/psychometric-evaluation-of-the-hypoparathyroidism-symptom-diary
#1
Theresa Coles, Kristina Chen, Lauren Nelson, Nimanee Harris, Montserrat Vera-Llonch, Alan Krasner, Susan Martin
Purpose: To conduct an initial psychometric evaluation of the reliability and validity of the Hypoparathyroidism Symptom Diary (HPT-SD). Patients and methods: Data were collected during a cross-sectional, observational study. Participants with self-reported hypoparathyroidism (HPT) completed the HPT-SD, the Functional Assessment in Cancer Therapy-Cognitive Function (FACT-Cog), the Functional Assessment of Chronic Illness Therapy-Fatigue (FACIT-Fatigue), and the Hospital Anxiety and Depression Scale (HADS) measures...
2019: Patient related Outcome Measures
https://read.qxmd.com/read/30774489/the-use-of-patient-reported-outcome-research-in-modern-ophthalmology-impact-on-clinical-trials-and-routine-clinical-practice
#2
REVIEW
Tasanee Braithwaite, Melanie Calvert, Alastair Gray, Konrad Pesudovs, Alastair K Denniston
This review article considers the rising demand for patient-reported outcome measures (PROMs) in modern ophthalmic research and clinical practice. We review what PROMs are, how they are developed and chosen for use, and how their quality can be critically appraised. We outline the progress made to develop PROMs in each clinical subspecialty. We highlight recent examples of the use of PROMs as secondary outcome measures in randomized controlled clinical trials and consider the impact they have had. With increasing interest in using PROMs as primary outcome measures, particularly where interventions have been found to be of equivalent efficacy by traditional outcome metrics, we highlight the importance of instrument precision in permitting smaller sample sizes to be recruited...
2019: Patient related Outcome Measures
https://read.qxmd.com/read/30666173/impact-of-belimumab-on-patient-reported-outcomes-in-systemic-lupus-erythematosus-review-of-clinical-studies
#3
REVIEW
Elvira Bangert, Laura Wakani, Mehveen Merchant, Vibeke Strand, Zahi Touma
Systemic lupus erythematosus (SLE) is a chronic autoimmune, multisystem rheumatic disease with significant impact on health-related quality of life (HRQoL). Patient-reported outcomes (PROs) provide valuable data on patient perceptions across a variety of domains, such as HRQoL, pain, fatigue, and depression. The measurement and results of PROs with respect to HRQoL in randomized controlled trials (RCTs) on belimumab (B-lymphocyte stimulator inhibitor) in SLE are reviewed here, including BLISS-52 and BLISS-76, as well as publications related to belimumab trials that included HRQoL data...
2019: Patient related Outcome Measures
https://read.qxmd.com/read/30568522/immune-thrombocytopenia-improving-quality-of-life-and-patient-outcomes
#4
REVIEW
Patrick Trotter, Quentin A Hill
Immune thrombocytopenia (ITP) is an immune-mediated disorder characterized by a reduced platelet count and patients may develop bruising or mucosal bleeding. Since 2003, generic health-related quality of life (HRQoL) measures have been applied and ITP-specific measures developed, alongside trials of novel therapeutic agents. These have identified significant morbidity in patients with ITP, including fatigue, fear of bleeding and a negative impact on role, social and work activities. This review critically evaluates HRQoL data in adults and children with ITP...
2018: Patient related Outcome Measures
https://read.qxmd.com/read/30498382/the-national-institutes-of-health-patient-reported-outcomes-measurement-information-system-promis-a-view-from-the-uk
#5
REVIEW
Jonathan P Evans, Alexander Smith, Chris Gibbons, Jordi Alonso, Jose M Valderas
The interest in patient-reported outcome measures (PROMs) continues to increase as recognition of their potential utility rises in an effort to make health systems more patient-centered. The US National Institutes of Health (NIH) Patient-Reported Outcomes Measurement Information System® (PROMIS® ) has used state of the art psychometric and statistical techniques to create a universal PROMs language, with potential application across the whole spectrum of health conditions, languages, and geographic locations...
2018: Patient related Outcome Measures
https://read.qxmd.com/read/30464666/the-importance-of-patient-reported-outcomes-in-clinical-trials-and-strategies-for-future-optimization
#6
REVIEW
Rebecca Mercieca-Bebber, Madeleine T King, Melanie J Calvert, Martin R Stockler, Michael Friedlander
Patient-reported outcomes (PROs) can be included in clinical trials as primary or secondary endpoints and are increasingly recognized by regulators, clinicians, and patients as valuable tools to collect patient-centered data. PROs provide unique information on the impact of a medical condition and its treatment from the patient's perspective; therefore, PROs can be included in clinical trials to ensure the impact of a trial intervention is comprehensively assessed. This review first discusses examples of how PRO endpoints have added value to clinical trial interpretation...
2018: Patient related Outcome Measures
https://read.qxmd.com/read/30323697/measuring-and-monitoring-health-related-quality-of-life-responsiveness-in-systemic-lupus-erythematosus-patients-current-perspectives
#7
REVIEW
Jamal Mikdashi
Objective: Little is known about health-related quality of life (HRQoL) responsiveness in systemic lupus erythematosus (SLE) patients, compared to other chronic diseases. This review summarizes the available data in HRQoL responsiveness and sensitivity to change in SLE, and recommends directions for research and clinical application. Methods: A review of the literature was conducted reporting on HRQoL responsiveness in adult SLE patients between 1984 and 2018. HRQoL studies were assessed for responsiveness, sensitivity of change, minimal important differences, minimal clinical important differences, or change in improvement or deterioration...
2018: Patient related Outcome Measures
https://read.qxmd.com/read/30323696/impact-of-blinatumomab-on-patient-outcomes-in-relapsed-refractory-acute-lymphoblastic-leukemia-evidence-to-date
#8
REVIEW
Lindsey Hathaway, Jeremy Michael Sen, Michael Keng
Relapsed/refractory (R/R) acute lymphoblastic leukemia (ALL) is associated with a poor prognosis in both children and adults. Traditionally, there were limited options for salvage therapy, which consisted mostly of conventional chemotherapy. However, in the past 5 years, novel agents have changed our treatment strategies in this population. Blinatumomab, a bispecific CD19 directed CD3 T-cell engager, has shown to be effective in both minimal residual disease and R/R B-cell ALL. In R/R B-cell ALL, blinatumomab was associated with an improved median overall survival of 7...
2018: Patient related Outcome Measures
https://read.qxmd.com/read/30288134/impact-of-novel-antifibrotic-therapy-on-patient-outcomes-in-idiopathic-pulmonary-fibrosis-patient-selection-and-perspectives
#9
REVIEW
Bridget A Graney, Joyce S Lee
Patients with idiopathic pulmonary fibrosis, an incurable, progressive fibrotic interstitial lung disease, suffer an impaired quality of life due to symptoms, resultant functional limitations, and the constraints of supplemental oxygen. Two antifibrotic medications, nintedanib and pirfenidone, are approved for the treatment of idiopathic pulmonary fibrosis. Both medications slow the rate of decline of lung function, but their effect on patient-reported outcomes is not yet fully understood. Nintedanib may slow the decline in health-related quality of life for treated patients...
2018: Patient related Outcome Measures
https://read.qxmd.com/read/30288133/selecting-best-suited-patient-related-outcomes-in-older-people-admitted-to-an-acute-geriatric-or-emergency-frailty-unit-and-applying-quality-improvement-research-to-improve-patient-care
#10
REVIEW
Inderpal Singh, Shridhar Aithal
The population is aging worldwide, and hospitals are admitting a higher proportion of acutely unwell older people. Population-specific factors such as multimorbidity and frailty in older people compounded by deficient expertise contribute to longer lengths of stay, higher readmission rates, and increased rates of institutionalization. A wide range of acute geriatric care models are currently providing acute care to frail older people and these have been shown to provide a cost-effective high-quality service...
2018: Patient related Outcome Measures
https://read.qxmd.com/read/30214333/satisfied-patients-and-pediatricians-a-cross-sectional-analysis
#11
Isha Patel, Travis Chapman, Fabian Camacho, Shameen Shrestha, Jongwha Chang, Rajesh Balkrishnan, Steven R Feldman
Background: There is a lack of research in the USA comparing patient satisfaction with pediatricians and other primary care physicians (PCPs). We examined and compared patient satisfaction toward their pediatricians and PCPs and characterized factors associated with higher patient satisfaction in these two groups. Methods: A random coefficient model with random slope and intercept was fit to the data, with patient satisfaction as a function of pediatrician/PCP, covariates, and physician random effects...
2018: Patient related Outcome Measures
https://read.qxmd.com/read/30214332/health-related-quality-of-life-in-patients-with-iron-deficiency-anemia-impact-of-treatment-with-intravenous-iron
#12
REVIEW
William E Strauss, Michael Auerbach
Most physicians appear to be aware of the health consequences of advanced anemia, especially in the acute setting, frequently responding with a not inconsequential therapeutic default of transfusion. In contrast, the profound impact that chronic anemia, of any degree, may have on a patient's performance is underappreciated. The focus of this review is to 1) delineate the consistent and broad impact of anemia on patient quality of life as documented by multiple well-validated patient-reported outcome instruments and 2) demonstrate the essential normalization of the debilitation as assessed by these instruments following the administration of intravenous iron...
2018: Patient related Outcome Measures
https://read.qxmd.com/read/30154675/sarilumab-patient-reported-outcomes-in-rheumatoid-arthritis
#13
REVIEW
Chiara Crotti, Martina Biggioggero, Andrea Becciolini, Ennio Giulio Favalli
In the last few decades, strategies for the management of rheumatoid arthritis (RA) have been increasingly oriented toward more comprehensive control of the disease, taking into account even RA extra-articular manifestations, comorbidities, and the patient's perception about the disease. The need for improving the shared decision-making process suggested by European League Against Rheumatism recommendations is leading to an increasing interest in the role of patient-reported outcomes (PROs) beside the usual more objective criteria for defining clinical response based on disease-activity composite indices...
2018: Patient related Outcome Measures
https://read.qxmd.com/read/30147386/impact-of-reslizumab-on-outcomes-of-severe-asthmatic-patients-current-perspectives
#14
REVIEW
Alicia Padilla Galo, Marina Labor, Angelica Tiotiu, Ilaria Baiardini, Nicola Scichilone, Fulvio Braido
Approximately 5%-10% of asthmatics suffer from severe asthma. New biological treatments represent a great opportunity to reduce asthma burden and to improve asthma patients' lives. Reslizumab will soon be available in several European countries. This anti-IL-5 IgG4/κ monoclonal antibody, administered intravenously at a dose of 3 mg/kg over 20-50 minutes every 4 weeks, has been shown to be safe and effective in patients with 400 eosinophils/μL or more in their peripheral blood. The clinical effects in reducing asthma exacerbations and in improving the quality of life and lung function are clear, but further research is needed to determine the best biological compound for a specific cluster of patients...
2018: Patient related Outcome Measures
https://read.qxmd.com/read/30147385/the-employment-of-patient-reported-outcome-measures-to-communicate-the-likely-benefits-of-surgery
#15
REVIEW
Norman Briffa
Decision aids as part of shared care are underutilized in surgery. Patient-Reported Outcome Measures (PROMS) are rapidly gaining interest as useful tools for various purposes in all fields of surgery. In this article, the author describes how PROMS can be used as decision aids in shared care between patients and health care workers, including surgeons.
2018: Patient related Outcome Measures
https://read.qxmd.com/read/30140163/patient-considerations-in-the-management-of-gout-and-role-of-combination-treatment-with-lesinurad
#16
REVIEW
Liza W Claus, Joseph J Saseen
Gouty arthritis is one of the most common rheumatic diseases, and the prevalence continues to rise, which is likely related to increased incidence of comorbidities, lifestyle factors, and suboptimal utilization of urate-lowering therapy. In recent years, multiple new guidelines have been published along with the approval of novel drug therapies. Still, gout remains a poorly controlled disease state that is accompanied by a reduced health-related quality of life, increased health care utilization, and overall negative socioeconomic effects, all of which have a negative impact on patient-related health outcomes...
2018: Patient related Outcome Measures
https://read.qxmd.com/read/30123017/chronic-fatigue-syndrome-and-quality-of-life
#17
REVIEW
Deb Roberts
Chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME), is a challenging long-term condition (LTC) with complex and fluctuating symptoms. It is heterogeneous in presentation without diagnostic indicators; therefore, in health care encounters, insight must be gained from the patient's perspective. One indicator of impact can be gained by measuring quality of life (QoL). By applying a patient-reported outcome measure (PROM), professionals can gather insights with direct relevance to the patient questioned...
2018: Patient related Outcome Measures
https://read.qxmd.com/read/30100773/patient-reported-outcomes-in-head-and-neck-cancer-prospective-multi-institutional-patient-reported-toxicity
#18
M Sean Peach, Daniel M Trifiletti, Carolyn Vachani, Karen Arnold-Korzeniowski, Christina Bach, Margaret Hampshire, James M Metz, Christine E Hill-Kayser
Purpose: Head and neck cancer is occurring in an increasingly younger patient population, with treatment toxicity that can cause significant morbidity. Using a patient guided, Internet-based survivorship care plan program, we obtained and looked at patterns of patient-reported outcomes data from survivors seeking information after treatment for head and neck cancer. Methods: The Internet-based OncoLife and LIVESTRONG Care Plan programs were employed, which design unique survivorship care plans based on patient-reported data...
2018: Patient related Outcome Measures
https://read.qxmd.com/read/30100772/administering-the-routine-activities-domain-of-the-oxford-participation-and-activities-questionnaire-as-a-stand-alone-scale-the-oxford-routine-activities-measure
#19
David Morley, Sarah Dummett, Laura Kelly, Crispin Jenkinson
Background: The recently validated Oxford Participation and Activities Questionnaire (Ox-PAQ) is a 23-item patient-reported outcome measure, theoretically grounded in the World Health Organization International Classification of Functioning, Disability and Health. The measure is specifically designed to assess participation and activity in people experiencing a range of health conditions. Initial validation of the Ox-PAQ identified three domains: Routine Activities (14 items), Emotional Well-Being (5 items), and Social Engagement (4 items)...
2018: Patient related Outcome Measures
https://read.qxmd.com/read/30013409/a-novel-method-of-proxy-reporting-questionnaire-based-measures-of-health-related-quality-of-life-of-people-with-dementia-in-residential-care-a-psychometric-evaluation
#20
Sarah C Smith, Aa Jolijn Hendriks, Jemma Regan, Nick Black
Background: In research in residential care, health-related quality of life (HRQL) is usually measured using either observational methods or standardized questionnaires. DEMQOL-Proxy is a standardized questionnaire measuring HRQL of people with dementia and is usually reported by a family carer. However, not all residents have a family carer who visits often enough to act as a proxy. Objectives: We evaluated the psychometric performance of DEMQOL-Proxy when reported on behalf of people with dementia in residential care by a "trained proxy" (DEMQOL-Proxy-TP)...
2018: Patient related Outcome Measures
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