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Amy Simon, Farrah Pompilus, William Querbes, Alex Wei, Sara Strzok, Craig Penz, Desiree Lyon Howe, Jessica R Hungate, Jae B Kim, Sonalee Agarwal, Patrick Marquis
OBJECTIVE: Acute intermittent porphyria is a rare metabolic disorder that affects heme synthesis. Patients with acute intermittent porphyria may experience acute debilitating neurovisceral attacks that require frequent hospitalizations and negatively impact quality of life. Although clinical aspects of acute intermittent porphyria attacks have been documented, the experience of patients is not well known, particularly for those more severely affected patients who experience frequent attacks...
June 19, 2018: Patient
Gang Chen, Miguel A Garcia-Gordillo, Daniel Collado-Mateo, Borja Del Pozo-Cruz, José C Adsuar, José Manuel Cordero-Ferrera, José María Abellán-Perpiñán, Fernando Ignacio Sánchez-Martínez
OBJECTIVES: The aim of this study was to compare the Parkinson's Disease Questionnaire-8 (PDQ-8) with three multi-attribute utility (MAU) instruments (EQ-5D-3L, EQ-5D-5L, and 15D) and to develop mapping algorithms that could be used to transform PDQ-8 scores into MAU scores. METHODS: A cross-sectional study was conducted. A final sample of 228 evaluable patients was included in the analyses. Sociodemographic and clinical data were also collected. Two EQ-5D questionnaires were scored using Spanish tariffs...
June 7, 2018: Patient
David A Katz, Kenda R Stewart, Monica Paez, Mark W Vander Weg, Kathleen M Grant, Christine Hamlin, Gary Gaeth
BACKGROUND: Providers often prescribe counseling and/or medications for tobacco cessation without considering patients' treatment preferences. OBJECTIVE: The primary aims of this study are to describe (1) the development of a discrete choice experiment (DCE) questionnaire designed to identify the attributes and levels of tobacco treatment that are most important to veterans; and (2) the decision-making process in choosing between hypothetical tobacco treatments...
June 1, 2018: Patient
Juan Marcos Gonzalez, F Reed Johnson, Bennett Levitan, Rebecca Noel, Holly Peay
No abstract text is available yet for this article.
May 30, 2018: Patient
Clare Villalba, Anjali Jaiprakash, Jared Donovan, Jonathan Roberts, Ross Crawford
BACKGROUND: A wealth of peer-reviewed data exists regarding people's health experience, yet practical ways of using the data to understand patients' experiences and to inform health co-design are needed. OBJECTIVE: This study aims to develop an applied and pragmatic method for using patient experience literature in co-design by transforming it into an accessible and creative co-design tool. METHOD: A scoping literature review of the CINAHL, MEDLINE, PsycINFO and PubMed electronic databases was conducted from January 2011 through August 2016...
May 26, 2018: Patient
Vivian Y W Guo, Carlos K H Wong, Rosa S M Wong, Esther Y T Yu, Patrick Ip, Cindy L K Lam
BACKGROUND: Mothers with chronic diseases may have spillover effects on their children. OBJECTIVE: The aim of this study was to estimate the spillover effects of mothers with chronic disease on their children's health-related quality of life (HRQOL) and behavior. METHOD: A cross-sectional study was conducted on 255 mother-child pairs (130 boys and 125 girls, mean age 8.4 years) from low-income Chinese families. We asked the mothers to self-report any doctor-diagnosed chronic diseases, and evaluate their children's HRQOL and behaviors with the Child Health Questionnaire-Parent Form-50 (CHQ-PF50) and the Strengths and Difficulties Questionnaire (SDQ), respectively...
May 18, 2018: Patient
Nasrin Tayyari Dehbarez, Morten Raun Mørkbak, Dorte Gyrd-Hansen, Niels Uldbjerg, Rikke Søgaard
BACKGROUND: Free choice of hospital has been introduced in many healthcare systems to accommodate patient preferences and incentivize hospitals to compete; however, little is known about what patients actually prefer. OBJECTIVES: This study assessed women's preferences for birthing hospital in Denmark by quantifying the utility and trade-offs of hospital attributes. METHODS: We conducted a discrete-choice experiment survey with 12 hypothetical scenarios in which women had to choose between three hospitals characterized by five attributes: continuity of midwifery care, availability of a neonatal intensive care unit (NICU), hospital services offered, level of specialization to handle rare events, and travel time...
May 16, 2018: Patient
Eileen Mack Thorley, Ravi G Iyer, Paul Wicks, Chris Curran, Sanjay K Gandhi, Victor Abler, Karen E Anderson, Noelle E Carlozzi
BACKGROUND: Chorea is the hallmark motor feature of Huntington disease (HD) and can negatively impact daily functioning and health-related quality of life (HRQoL). OBJECTIVE: The objective of this study was to evaluate how chorea impacts HRQoL and overall functioning among HD patients participating on the PatientsLikeMe website ( ). METHODS: A survey was provided to HD participants and/or their caregivers via PatientsLikeMe (9 February 2017-22 March 2017), comprising multiple-choice and open-ended questions designed to assess how chorea impacts HRQoL and overall functioning, and the importance of treating chorea...
May 11, 2018: Patient
Joanna Coast, Cara Bailey, Rosanna Orlando, Kathy Armour, Rachel Perry, Louise Jones, Philip Kinghorn
BACKGROUND AND OBJECTIVES: Adaptive preferences occur when people subconsciously alter their views to account for the possibilities available to them. Adaptive preferences may be problematic where these views are used in resource allocation decisions because they may lead to underestimation of the true benefits of providing services. This research explored the nature and extent of both adaptation (changing to better suit the context) and adaptive preferences (altering preferences in response to restricted options) in individuals approaching the end of life (EoL)...
May 9, 2018: Patient
Carol Mansfield, Donatus U Ekwueme, Florence K L Tangka, Derek S Brown, Judith Lee Smith, Gery P Guy, Chunyu Li, Brett Hauber
BACKGROUND: Screening rates for colorectal cancer are below the Healthy People 2020 goal. There are several colorectal cancer screening tests that differ in terms of accuracy, recommended frequency, and administration. In this article, we compare how a set of personal characteristics correlates with preferences for colorectal cancer screening test attributes, past colorectal cancer screening behavior, and future colorectal cancer screening intentions. METHODS: We conducted a discrete-choice experiment survey to assess relative preferences for attributes of colorectal cancer screening tests among adults aged 50-75 years in USA...
May 9, 2018: Patient
Ahmed Aber, Elizabeth Lumley, Patrick Phillips, Helen Buckley Woods, Georgina Jones, Jonathan Michaels
OBJECTIVES: The aim of this study was to identify domains that determine quality of life in patients with peripheral arterial disease and find the patient-reported outcome measures that can examine the identified themes. METHODS: A systematic review of all the main six databases was undertaken to identify primary qualitative studies reporting on the health and/or quality of life of patients with peripheral arterial disease. The quality of studies was assessed using the Critical Appraisal Skills Program criteria...
May 8, 2018: Patient
Catharina G M Groothuis-Oudshoorn, Terry N Flynn, Hong Il Yoo, Jay Magidson, Mark Oppe
No abstract text is available yet for this article.
April 25, 2018: Patient
David John Mott
No abstract text is available yet for this article.
June 2018: Patient
Erin Ward, Vinciya Pandian, Michael J Brenner
No abstract text is available yet for this article.
April 2018: Patient
Allison Barz Leahy, Chris Feudtner, Ethan Basch
Symptom monitoring using patient-reported outcomes (PROs) is not common in pediatric oncology, despite interest from stakeholders-including patients, families, clinicians, and regulatory organizations-and proven clinical benefit in adult oncology. This article examines the foundational data for patient-reported symptom reporting in this population and posits the next investigative steps toward the implementation of patient-reported symptom monitoring in the care and research of pediatric oncology patients. The reasoning behind, and feasibility of, monitoring symptoms in pediatric oncology patients using PRO measures are discussed, as well as specific tools that have been developed to track symptoms in this population, including innovative electronic self-reporting platforms built to engage children in the symptom reporting process...
April 2018: Patient
Caroline M Vass, Stuart Wright, Michael Burton, Katherine Payne
Discrete choice experiments (DCEs) are used to quantify the preferences of specified sample populations for different aspects of a good or service and are increasingly used to value interventions and services related to healthcare. Systematic reviews of healthcare DCEs have focussed on the trends over time of specific design issues and changes in the approach to analysis, with a more recent move towards consideration of a specific type of variation in preferences within the sample population, called taste heterogeneity, noting rises in the popularity of mixed logit and latent class models...
April 2018: Patient
Sean Grant, Glen S Hazlewood, Holly L Peay, Ann Lucas, Ian Coulter, Arlene Fink, Dmitry Khodyakov
Clinical practice guidelines (CPGs) have been widely used in healthcare policy, practice, and for suggesting future research. As patients increasingly become involved in CPG development to produce patient-centered recommendations, more research is needed on methods to engage patients, particularly methods allowing for scalable engagement of large, diverse, and geographically distributed groups of patients. In this article, we discuss practical considerations for using online methods to engage patients in CPG development...
April 2018: Patient
Eliza L Y Wong, Juan Manuel Ramos-Goñi, Annie W L Cheung, Amy Y K Wong, Oliver Rivero-Arias
BACKGROUND: An international valuation protocol exists for obtaining societal values for each of the 3125 health states of the five-level EuroQol-five dimensions (EQ-5D-5L) questionnaire. A feedback module (FM) that can be related to theoretical models used in behavioral economics was recently included in this protocol. OBJECTIVES: Our objective was to assess the impact of using an FM to estimate an EQ-5D-5L value set in Hong Kong. METHODS: EQ-5D-5L health states were elicited using a composite time trade-off (C-TTO) and a discrete-choice (DC) experiment...
April 2018: Patient
Ivana Nakarada-Kordic, Niamh Patterson, Jill Wrapson, Stephen D Reay
BACKGROUND: A tracheostomy is a surgically created opening through the anterior neck tissues and the trachea, into which a tube is inserted. Despite its influence on basic human needs such as respiration, communication and nutrition, little is known about the impact of tracheostomy on patients and their caregivers or what could be done to enable better care and quality of life (QoL) for these individuals. OBJECTIVE: The aim of this review was to better understand the current knowledge related to the experience and QoL of adults living with a tracheostomy and their caregivers so as to be able to improve these experiences...
April 2018: Patient
Danielle L Mosby, Matthew J Manierre, Steve S Martin, Paul Kolm, A Sami Abuzaid, Claudine T Jurkovitz, Daniel J Elliott, William S Weintraub
OBJECTIVE: Bridging the Divides (Bridges), a Centers for Medicare and Medicaid Services-funded program, developed a post-hospitalization care management infrastructure integrating information technology-enabled informatics with patient care for ischemic heart disease patients. The objective of this study was to assess patient satisfaction with the Bridges program and determine the patient characteristics associated with higher satisfaction. METHODS: All adult English-speaking patients who underwent a percutaneous coronary intervention, coronary artery bypass grafting, or catheterization plus acute myocardial infarction and agreed to participate in the Bridges program were eligible...
April 2018: Patient
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