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Health and Quality of Life Outcomes

Christopher W H Yau, Elena Pizzo, Chetankumar Prajapati, Tim Draycott, Erik Lenguerrand
BACKGROUND: Obstetric brachial plexus injuries (OBPIs) are rare but can have significant implications for those affected, their caregivers and the health system. Symptoms can range from restricted movement to complete paralysis of the arm. We investigated health-related quality of life in adults with OBPIs and parents of children with permanent OBPIs, compared these with population norms, and investigated whether certain socio-demographic or clinical factors were associated with the quality of life in these cohorts...
November 15, 2018: Health and Quality of Life Outcomes
Allan Gibofsky, James Galloway, Joern Kekow, Cristiano Zerbini, Maria de la Vega, Gavin Lee, Eun Young Lee, Catalin Codreanu, Cheryl Koehn, Kathy Steinberg, Eustratios Bananis, Dario Ponce de Leon, Anna Maniccia, Ara Dikranian
BACKGROUND: In order to better understand the perspectives of patients and physicians regarding the treatment and management of rheumatoid arthritis (RA), we present and compare results from a patient-based and a physician-based survey developed by the RA NarRAtive advisory panel. METHODS: The RA NarRAtive initiative is directed by a global advisory panel of 39 healthcare providers and patient organization leaders from 17 countries. A survey of patients self-reporting a diagnosis of RA and a physician-based survey, designed by the advisory panel, were fielded online by Harris Poll from September 2014 to April 2016, and from August 2015 to October 2015, respectively...
November 9, 2018: Health and Quality of Life Outcomes
Maria Mattera, Margaret K Vernon, Mireia Raluy-Callado, Jaromir Mikl
BACKGROUND: The rare disease, Hunter Syndrome (mucopolysaccharidosis type II; MPS II), characterized by iduronate-2-sulfatase deficiency, has heterogeneous symptoms often including cognitive impairment (CI). To evaluate physical functioning and daily activity limitations of patients with MPS II, the multidomain shortened Hunter Syndrome-Functional Outcomes for Clinical Understanding Scale (HS-FOCUS) questionnaire was previously developed and preliminarily validated. Here we gather data in a dedicated prospective longitudinal observational study using direct responses to the shortened instrument and assess its psychometric properties further...
November 8, 2018: Health and Quality of Life Outcomes
Zhihao Yang, Jan Busschbach, Gordon Liu, Nan Luo
BACKGROUND: To generate Chinese population norms for the EQ-5D-5L dimensions, EQ-VAS (Visual Analogue Scale) scores and EQ-5D-5L index scores, stratified by gender and age. The EQ-5D is a widely used generic health-related quality of life instrument to describe population health and health outcomes in clinical trials and health economic evaluations. Currently, there are no EQ-5D-5L population norms for China. METHODS: This norm study utilized the data collected in an EQ-5D-5L valuation study in China between December 2012 and January 2013...
November 8, 2018: Health and Quality of Life Outcomes
Henryk Skarżyński, Elżbieta Gos, Beata Dziendziel, Danuta Raj-Koziak, Elżbieta A Włodarczyk, Piotr H Skarżyński
BACKGROUND: When measuring the treatment effect in tinnitus with multi-item outcome instruments, it is crucial for both clinical and research purposes to take into consideration clinical importance of the outcome scores. The aim of the present study is to determine minimal important change (MIC) in tinnitus which is clinically meaningful to patients with otosclerosis. METHODS: The study population was 95 patients with otosclerosis, suffering from tinnitus. They completed the Tinnitus Functional Index before stapedotomy and 3 months after the surgery...
November 6, 2018: Health and Quality of Life Outcomes
Ester Cerezo-Téllez, María Torres-Lacomba, Orlando Mayoral-Del-Moral, Soraya Pacheco-da-Costa, David Prieto-Merino, Beatriz Sánchez-Sánchez
BACKGROUND: Chronic non-specific neck pain is related to limited cervical mobility, impaired function, neck muscles myofascial pain syndrome, and stress at work. The aforementioned factors are strongly related and may lead to a negative impact on health-related quality of life. There are some effective conservative Physical therapy interventions for treating chronic non-specific neck pain. Currently, Deep Dry Needling is emerging as an alternative for improving symptoms and consequently, the quality of life in patients with chronic non-specific neck pain...
November 6, 2018: Health and Quality of Life Outcomes
Žydrūnė Visockienė, Laura Narkauskaitė-Nedzinskienė, Roma Puronaitė, Aldona Mikaliūkštienė
BACKGROUND: Currently there is no diabetes-specific quality of life (QOL) instrument available in Lithuanian language. We aimed to develop a Lithuanian version of a widely-used individualised instrument - the Audit of Diabetes Dependent Quality of Life questionnaire (ADDQOL-19) and assess the validity and reliability in patients with type 1 and type 2 diabetes mellitus (DM). METHODS: This study was conducted at the Primary Care and Endocrinology Outpatient Clinics in Vilnius...
November 1, 2018: Health and Quality of Life Outcomes
Sarah Houben-Wilke, Daisy J A Janssen, Frits M E Franssen, Lowie E G W Vanfleteren, Emiel F M Wouters, Martijn A Spruit
BACKGROUND: The COPD Assessment Test (CAT) contains eight items (cough, phlegm, chest tightness, breathlessness, limited activities, confidence leaving home, sleeplessness and energy). The current study aimed 1) to better understand the impact of the respiratory and non-respiratory CAT item scores on the CAT total score; and 2) to determine the impact of pulmonary rehabilitation (PR) on CAT items and CAT total score. METHODS: CAT total score of ≥10 or ≥ 18 points was used to classify patients as highly symptomatic, a decrease of 2 points was considered as clinically relevant improvement...
October 30, 2018: Health and Quality of Life Outcomes
Amberly Brigden, Roxanne M Parslow, Daisy Gaunt, Simon M Collin, Andy Jones, Esther Crawley
BACKGROUND: Defining the minimally clinically important difference (MCID) is important for the design and analysis of clinical trials and ensures that findings are clinically meaningful. Studies in adult populations have investigated the MCID of The Short Form 36 physical function sub-scale (SF-36-PFS). However, to our knowledge no studies have defined the MCID of the SF-36-PFS in a paediatric population. We aimed to triangulate findings from distribution, anchor and qualitative methods to identify the MCID of the SF-36-PFS for children and adolescents with CFS/ME...
October 19, 2018: Health and Quality of Life Outcomes
Kathryn E Flynn, Harald Kliems, Nikita Saoji, Jacob Svenson, Elizabeth D Cox
BACKGROUND: Families play a critical role in supporting the health and well-being of children with chronic illnesses, who face a lifetime of responsibility for self-management of their condition. Our goal was to investigate whether the novel Patient-Reported Outcomes Measurement Information System® (PROMIS®) Pediatric Family Relationships measure, developed primarily within the general pediatric population, reflects the experiences of family relationships for chronically ill children and their parents...
October 19, 2018: Health and Quality of Life Outcomes
Knut Stavem, Liv A Augestad, Ivar S Kristiansen, Kim Rand
BACKGROUND: The EQ-5D-3 L instrument is a standardized questionnaire which was developed as a simple, generic measure of health for clinical and economic appraisal. To aid in the interpretation, scores are often compared with a normative group. The objectives of this study were 1) to provide population norms for the EQ-5D-3 L for Norway, and 2) to compare scores from postal and web surveys. METHODS: We conducted two surveys in samples that were aimed to be representative of the Norwegian general population: 1) a postal survey (n = 5000) and 2) a panel study with electronic data collection (n = 1936)...
October 19, 2018: Health and Quality of Life Outcomes
Mengyun Zheng, Hui Jin, Naiyang Shi, Chunxiao Duan, Donglei Wang, Xiaoge Yu, Xiaoning Li
BACKGROUND: Low health literacy often has an association with poor health outcomes such as low levels of self-efficacy, increased mortality, poor health status and reduced quality of life (QOL). The aim of the study was to quantitatively evaluate the relationship between health literacy (HL) and QOL based on a systematic review and meta-analysis. METHODS: EMBASE, PubMed, Web of Science, Elsevier, Cochrane Library, and Chinese electronic databases such as CNKI, and Wanfang were searched from 1970 until February 1, 2018...
October 16, 2018: Health and Quality of Life Outcomes
A Sundén, K Lidengren, E M Roos, L S Lohmander, E Ekvall Hansson
BACKGROUND: The Hip disability and Osteoarthritis Outcome Score (HOOS) is a self-administered hip-specific questionnaire intended to evaluate symptoms and functional limitations, and it is commonly used to evaluate interventions in individuals with hip dysfunction or hip osteoarthritis. The HOOS consists of 43 questions in five subscales: Pain, Symptoms, Function in daily living, Function in sport and recreation and Hip-Related Quality of Life. This study aimed to establish population-based reference values for the HOOS and to describe the variation of hip-related symptoms in an adult population...
October 11, 2018: Health and Quality of Life Outcomes
Yuanyi Cai, Min Zhu, Wei Sun, Xiaohong Cao, Huazhang Wu
BACKGROUND: Central venous catheters (CVC) have been widely used for patients with severe conditions. However, they increase the risk of catheter-related bloodstream infection (CRBSI), which is associated with high economic burden. Until now, no study has focused on the cost attributable to CRBSI in China, and data on its economic burden are unavailable. The aim of this study was to assess the cost attributable to CRBSI and its influencing factors. METHODS: A retrospective matched case-control study and multivariate analysis were conducted in a tertiary hospital, with 94 patients (age ≥ 18 years old) from January 2011 to November 2015...
October 11, 2018: Health and Quality of Life Outcomes
Louise Norman Jespersen, Susan Ishøy Michelsen, Bjørn Evald Holstein, Tine Tjørnhøj-Thomsen, Pernille Due
BACKGROUND: Measurement of quality of life demands thoroughly developed and validated instruments. The development steps from theory to concepts and from empirical data to items are sparsely described in the literature of questionnaire development. Furthermore, there seems to be a need for an instrument measuring quality of life and participation in a population with diverse disabilities. The aim of this paper was to present and discuss the initial steps in the development of the Electronic Quality of Life questionnaire (EQOL)...
October 11, 2018: Health and Quality of Life Outcomes
Minji K Lee, Kathleen J Yost, Karlyn E Pierson, Shanda H Blackmon
BACKGROUND: Health-related quality of life (QoL) deteriorates immediately after esophagectomy. Patients may benefit from periodic assessments to detect increased morbidity on the basis of subjective self-reports. Using input from patients and health care providers, we developed a brief prototype for the esophageal conduit questionnaire (Mayo Clinic Esophageal Conduit Outcomes Noting Dysphagia/Dumping, and Unknown outcomes with Intermittent symptoms over Time after esophageal reconstruction [CONDUIT] Report Card) and previously used it in comparative research...
October 10, 2018: Health and Quality of Life Outcomes
Tone Rustøen, Anners Lerdal, Caryl Gay, Anders Kottorp
BACKGROUND: The concept of hope has been measured using the Herth Hope Index (HHI) in different samples, but varying factor structures comprising different items from the HHI have been reported. Therefore, further testing with regard to the dimensionality of the instrument is recommended. Rasch modeling can be used to evaluate validity evidence of an instrument's underlying structure, to identify items with poor fit to the rest of the scale, and to identify items that perform inconsistently across groups...
October 3, 2018: Health and Quality of Life Outcomes
Mathilde M Husky, Farina Ferdous Farin, Philippe Compagnone, Christophe Fermanian, Viviane Kovess-Masfety
BACKGROUND: Chronic back pain is associated with significant burden, yet few epidemiological studies have provided data on chronic back pain, its predictors and correlates in France. METHODS: Data were drawn from a cross-sectional survey conducted in France (n = 17,249) using computer-assisted telephone interviews. Sample age ranges from 18 to 98 with a mean of 46.39 years (SD = 17.44), and was 56.7% female. Medical conditions were assessed using the CIDI, quality of life was assessed using both the physical and mental component scores of the SF-36...
September 26, 2018: Health and Quality of Life Outcomes
Ivanise Arouche Gomes de Souza, Claudia Cristina de Aguiar Pereira, Andrea Liborio Monteiro
BACKGROUND: Quality of life has become a key outcome in assessing the effectiveness of treatments and interventions in health. METHODS: Accordingly, this research study aimed to measure quality of life using the EQ-5D-3L instrument for patients from the Jamil Haddad National Institute of Traumatology and Orthopedics (Instituto Nacional de Traumatologia e Ortopedia Jamil Haddad - INTO) with femoral fractures, hospitalized between 11/2015 and 10/2016. RESULTS: A total of 165 orthopedic trauma patients with femoral fractures, aged 18 years or older, who were hospitalized and operated upon in the INTO were assessed...
September 24, 2018: Health and Quality of Life Outcomes
Eytan M Stein, Min Yang, Annie Guerin, Wei Gao, Philip Galebach, Cheryl Q Xiang, Subrata Bhattacharyya, Gaetano Bonifacio, George J Joseph
BACKGROUND: Preference valuations of health status are essential in health technology and economic appraisal. This study estimated utilities for treatment-related health states of acute myeloid leukemia (AML) and disutilities of severe adverse events (SAEs) using a representative sample of adults from the general population in the United States (US). METHODS: Treatment-related AML health states, defined based on literature and interviews with clinicians, included complete remission (CR), no CR, relapse, stem cell transplant (SCT), and post SCT short-term recovery...
September 21, 2018: Health and Quality of Life Outcomes
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