Read by QxMD icon Read

Patient related Outcome Measures

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
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
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
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
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
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
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
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
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
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
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
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
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
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
Helen Crocker, Crispin Jenkinson, Michele Peters
Background: Coeliac-specific measures have been criticized for not complying with current guidance on the development of patient-reported outcome measures (PROMs). The aim of this study was to develop a measure to assess health-related quality of life in adults with coeliac disease (CD), in accordance with current guidance for PROM development. Methods: In-depth qualitative interviews were conducted with adults with CD. A thematic analysis was undertaken to develop a coding framework...
2018: Patient related Outcome Measures
Ines Rombach, Crispin Jenkinson, Alastair M Gray, David W Murray, Oliver Rivero-Arias
Purpose: Missing data are a potential source of bias in the results of RCTs, but are often unavoidable in clinical research, particularly in patient-reported outcome measures (PROMs). Maximum likelihood (ML), multiple imputation (MI), and inverse probability weighting (IPW) can be used to handle incomplete longitudinal data. This paper compares their performance when analyzing PROMs, using a simulation study based on an RCT data set. Methods: Realistic missing-at-random data were simulated based on patterns observed during the follow-up of the knee arthroscopy trial (ISRCTN45837371)...
2018: Patient related Outcome Measures
Dieter Melchart, Axel Eustachi, Stephan Gronwald, Erich Wühr, Kristina Wifling, Beatrice E Bachmeier
Background: There is a global trend to a stronger active involvement of persons in the maintenance and restoring of health. The Competence Centre for Complementary Medicine and Naturopathy (CoCoNat) of the Technical University of Munich (TUM) has developed a lifestyle concept to enable each individual to manage his or her health - Individual Health Management (IHM) - and a web-based health portal named Virtual Tool for Education, Reporting, Information and Outcomes (VITERIO® ), which addresses these needs for practice and research...
2018: Patient related Outcome Measures
Laura Kelly, Steve Sizmur, Susanne Käsbauer, Jenny King, Robyn Cooper, Crispin Jenkinson, Chris Graham
Purpose: The Relational Aspects of Care Questionnaire (RAC-Q) is an electronic instrument which has been developed to assess staff's interactions with patients when delivering relational care to inpatients and those accessing accident and emergency (A&E) services. The aim of this study was to reduce the number of questionnaire items and explore scoring methods for "not applicable" response options. Patients and methods: Participants (n=3928) were inpatients or A&E attendees across six participating hospital trusts in England during 2015-2016...
2018: Patient related Outcome Measures
Fawz Kazzazi, Rebecca Haggie, Parto Forouhi, Nazar Kazzazi, Charles M Malata
Introduction: Maximizing response rates in questionnaires can improve their validity and quality by reducing non-response bias. A comprehensive analysis is essential for producing reasonable conclusions in patient-reported outcome research particularly for topics of a sensitive nature. This often makes long (≥7 pages) questionnaires necessary but these have been shown to reduce response rates in mail surveys. Our work adapted the "Total Design Method," initially produced for commercial markets, to raise response rates in a long (total: 11 pages, 116 questions), non-incentivized, very personal postal survey sent to almost 350 women...
2018: Patient related Outcome Measures
Barbra Katusiime, Sarah A Corlett, Janet Krska
Objectives: To revise the Living with Medicines Questionnaire version 2 (LMQ-2), which measures the burden of using prescribed medicines, to include cost and expand side effects and social issues. Methods: New statements were developed and validated through cognitive interviews with medicine users, and these and a global visual analog scale (VAS) were added to the 42-item LMQ-2. Construct validity was assessed through exploratory and confirmatory factor analyses using an online public survey...
2018: Patient related Outcome Measures
Fetch more papers »
Fetching more papers... Fetching...
Read by QxMD. Sign in or create an account to discover new knowledge that matter to you.
Remove bar
Read by QxMD icon Read

Search Tips

Use Boolean operators: AND/OR

diabetic AND foot
diabetes OR diabetic

Exclude a word using the 'minus' sign

Virchow -triad

Use Parentheses

water AND (cup OR glass)

Add an asterisk (*) at end of a word to include word stems

Neuro* will search for Neurology, Neuroscientist, Neurological, and so on

Use quotes to search for an exact phrase

"primary prevention of cancer"
(heart or cardiac or cardio*) AND arrest -"American Heart Association"