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Randall Winnette, Lisa M Hess, Steven J Nicol, Datchen Fritz Tai, Catherine Copley-Merriman
BACKGROUND: Soft tissue sarcomas (STS) are a heterogenous group of rare tumors that involve the connective tissue in the body (e.g. muscle, tendons). As with many rare tumors, little is known about the impact of STS on patient well-being. OBJECTIVE: The aim of this review was to better understand current knowledge related to patient experience and quality of life (QOL) following diagnosis of STS. METHODS: A systematic review of English-language articles published from 2005 to 2015 was conducted in the PubMed/MEDLINE, Embase, PsychINFO, and Evidence-Based Medicine databases...
October 15, 2016: Patient
Denzil G Fiebig
Within a generation, empirical researchers have experienced unprecedented increases in the availability of data. 'Big data' has arrived with considerable hype and a sense that these are dramatic shifts in the research environment that have wide-reaching implications across many disciplines. There is no doubt that the analysis of new and varied sources of data currently available to researchers in health have the potential to better measure, monitor and describe health outcomes of patients and to uncover interesting patterns in how patients respond to treatments and interact with the health system...
October 13, 2016: Patient
Bonnie A Clough, Sonia M Nazareth, Leanne M Casey
BACKGROUND: Patient non-attendance and dropout remains problematic in mental health settings. The theory of planned behavior (TPB) has proven useful in understanding such challenges in a variety of healthcare settings, but the absence of an adequate measure in mental health has hampered research in this area. OBJECTIVE: The aim of the current study was to develop and conduct an initial psychometric investigation of a brief measure, the Therapy Attitudes and Process Questionnaire (TAP), utilizing the TPB to understand factors associated with attendance in mental health settings...
October 7, 2016: Patient
Maarten de Wit, John R Kirwan, Peter Tugwell, Dorcas Beaton, Maarten Boers, Peter Brooks, Sarah Collins, Philip G Conaghan, Maria-Antonietta D'Agostino, Cathie Hofstetter, Rod Hughes, Amye Leong, Ann Lyddiatt, Lyn March, James May, Pamela Montie, Pamela Richards, Lee S Simon, Jasvinder A Singh, Vibeke Strand, Marieke Voshaar, Clifton O Bingham, Laure Gossec
There is increasing interest in making patient participation an integral component of medical research. However, practical guidance on optimizing this engagement in healthcare is scarce. Since 2002, patient involvement has been one of the key features of the Outcome Measures in Rheumatology (OMERACT) international consensus effort. Based on a review of cumulative data from qualitative studies and internal surveys among OMERACT participants, we explored the potential benefits and challenges of involving patient research partners in conferences and working group activities...
October 5, 2016: Patient
Katherine Treiman, Lauren McCormack, Murrey Olmsted, Nancy Roach, Bryce B Reeve, Christa E Martens, Rebecca R Moultrie, Hanna Sanoff
BACKGROUND: Patient-centered communication (PCC) is an essential component of patient-centered care and contributes to patient satisfaction, health-related quality of life, and other important patient outcomes. OBJECTIVE: The aim of this study was to develop and test survey questions to assess patients' experiences with PCC in cancer care. METHODS: We used a conceptual model developed by the National Cancer Institute as our framework. The survey questions align with the six core functions of PCC defined in the model: Exchanging Information, Managing Uncertainty, Enabling Patient Self-Management, Fostering Healing Relationships, Making Decisions, and Responding to Emotions...
September 23, 2016: Patient
Kirstie L Haywood, Roger Wilson, Sophie Staniszewska, Sam Salek
No abstract text is available yet for this article.
September 19, 2016: Patient
Kim Engler, David Lessard, Bertrand Lebouché
The use of patient-reported outcome (PRO) measures to provide added feedback to health providers is receiving interest as a means of improving clinical care and patient outcomes, and contributing to more patient-centered care. In human immunodeficiency virus (HIV), while PROs are used in research, their application in clinical practice has been limited despite their potential utility. PRO selection is an important consideration when contemplating their use. As past reviews of PROs in HIV have focused on particular areas (e...
September 16, 2016: Patient
Catherine Copley-Merriman, Susan Zelt, Marci Clark, Ari Gnanasakthy
Although some symptoms of dermatologic diseases, such as pruritus and pain, can be subjectively assessed only by patients, the most commonly used endpoints in dermatology drug research traditionally have been clinician-reported outcomes. Research has found that patient-reported outcomes (PROs) were included in only one-quarter of 125 trials conducted between 1994 and 2001. Our objective was to characterize the impact of PROs in dermatology drug development from the patient, prescriber, regulator, payer, and manufacturer perspectives using a case study approach...
September 15, 2016: Patient
Chad Gwaltney, Matthew Reaney, Meaghan Krohe, Mona M Martin, Heather Falvey, Patrick Mollon
BACKGROUND AND OBJECTIVES: This qualitative interview study was designed to highlight the symptoms and functional limitations experienced by patients in the year following a myocardial infarction (MI). This information can support the use or development of patient-reported outcome (PRO) instruments in the post-MI population. METHODS: Individual face-to-face interviews were conducted with 38 participants who had experienced an MI (with or without ST segment elevation) within the past month to <6 months (n = 17), or 6 months to ≤12 months (n = 21)...
September 14, 2016: Patient
Sylvia H Paz, Loretta Jones, José L Calderón, Ron D Hays
BACKGROUND: Depression and physical function are particularly important health domains for the elderly. The Geriatric Depression Scale (GDS) and the Patient-Reported Outcomes Measurement Information System (PROMIS(®)) physical function item bank are two surveys commonly used to measure these domains. It is unclear if these two instruments adequately measure these aspects of health in minority elderly. OBJECTIVE: The aim of this study was to estimate the readability of the GDS and PROMIS(®) physical function items and to assess their comprehensibility using a sample of African American and Latino elderly...
September 7, 2016: Patient
Claire Lafortune, Jacobi Elliott, Mary Y Egan, Paul Stolee
BACKGROUND: While standardized health assessments capture valuable information on patients' demographic and diagnostic characteristics, health conditions, and physical and mental functioning, they may not capture information of most relevance to individual patients and their families. Given that patients and their informal caregivers are the experts on that patient's unique context, it is important to ensure they are able to convey all relevant personal information to formal healthcare providers so that high-quality, patient-centered care may be delivered...
September 6, 2016: Patient
Hiten Naik, Doris Howell, Susie Su, Xin Qiu, M Catherine Brown, Ashlee Vennettilli, Margaret Irwin, Vivien Pat, Hannah Solomon, Tian Wang, Henrique Hon, Lawson Eng, Mary Mahler, Henry Thai, Valerie Ho, Wei Xu, Soo Jin Seung, Nicole Mittmann, Geoffrey Liu
BACKGROUND: To improve the precision of health economics analyses in oncology, reference datasets of health utility (HU) scores are needed from cancer survivors across different disease sites. These data are particularly sparse amongst Canadian survivors. METHODS: A survey was completed by 1759 ambulatory cancer survivors at the Princess Margaret Cancer Centre which contained demographic questions and the EuroQol-5D (EQ-5D) instrument. Clinical information was abstracted from electronic records and HU scores were calculated using Canadian health state valuations...
August 27, 2016: Patient
Joshua R Ehrlich, George L Spaeth, Noelle E Carlozzi, Paul P Lee
Low-vision rehabilitation (LVR) aims to improve the functioning of patients with chronic uncorrectable visual impairment. LVR is inherently a patient-centered intervention since its approach and goals are dictated by the needs and abilities of each individual patient. Accordingly, it is essential to have patient-centered outcome (PCO) measures to assess and compare the efficacy and effectiveness of low-vision interventions; however, there is a lack of evidence on the effectiveness of LVR interventions. We reviewed the literature in order to identify randomized controlled trials (RCTs) in the field of LVR and the outcome measures used to assess patient functioning in these trials...
August 5, 2016: Patient
Thomas Wilke, Sabine Bauer, Sabrina Mueller, Thomas Kohlmann, Rupert Bauersachs
OBJECTIVES: Since the introduction of non-vitamin K antagonist (VKA) oral anticoagulants (NOACs), an additional treatment option, apart from VKAs, has become available for stroke prevention in patients with atrial fibrillation (AF). For various reasons, it is important to consider patients' preferences regarding type of medication, particularly in view of the established relationship between preferences towards treatment, associated burden of treatment, and treatment adherence. This review aimed to systematically analyse the scientific literature assessing the preferences of AF patients with regard to long-term oral anticoagulant (OAC) treatment...
July 26, 2016: Patient
Benoit Arnould, Hélène Gilet, Donald L Patrick, Catherine Acquadro
OBJECTIVES: The objectives of this study were to finalize, develop the scoring, and explore the psychometric properties of the ACCEPTance by the Patients of their Treatment (ACCEPT©) questionnaire, as well as to provide the first elements for its interpretation and guidance for its future use. METHODS: ACCEPT© was finalized according to reference methods including testing in a pilot study, i.e., a multi-center, observational, longitudinal study conducted in France, in collaboration with a network of pharmacists...
July 25, 2016: Patient
Peter J Pitts
No abstract text is available yet for this article.
October 2016: Patient
Marion Danner, Vera Vennedey, Mickaël Hiligsmann, Sascha Fauser, Christian Gross, Stephanie Stock
BACKGROUND: In this study, we tested the feasibility of an interviewer-assisted analytic hierarchy process (AHP) in a special patient population with age-related macular degeneration (AMD). OBJECTIVES: One aim was to generate preference weights regarding AMD treatment characteristics. A secondary aim was to explore the consistency of preference judgments and reasons for inconsistency. METHODS: We generated quantitative importance weights for decision criteria using the matrix multiplication method...
October 2016: Patient
Ellen M Janssen, Jodi B Segal, John F P Bridges
OBJECTIVE: Choice experiments are increasingly used to obtain patient preference information for regulatory benefit-risk assessments. Despite the importance of instrument design, there remains a paucity of literature applying good research principles. We applied a novel framework for instrument development of a choice experiment to measure type 2 diabetes mellitus treatment preferences. METHODS: Applying the framework, we used evidence synthesis, expert consultation, stakeholder engagement, pretest interviews, and pilot testing to develop a best-worst scaling (BWS) and discrete choice experiment (DCE)...
October 2016: Patient
Jean Louise Miller, Sylvia Ruth Teare, Nancy Marlett, Svetlana Shklarov, Deborah Anne Marshall
OBJECTIVE: This study addresses the perspectives of patients with osteoarthritis (OA) about the gap between available support and their needs, with a focus on patient experience and what is important to them. It was a key component of a research initiative to co-develop an evidence-based model for central referral from primary to specialty care for arthritis patients. METHODS: Patients with OA and trained in engagement methods used adapted qualitative methods to co-design and conduct the study...
October 2016: Patient
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