Abstract:
BACKGROUND:Mass screening could identify those with unrecognized celiac disease (CD), but the experience of being detected through screening and living with screening-detected CD should be explored before considering this as acceptable intervention. For this study we invited screening-detected adolescents to describe their experience living with screening-detected CD five years after diagnosis with the aim to explore how their perceptions, practices, and beliefs evolved. METHODS:Adolescents who were diagnosed through a population-based CD screening were invited to write narratives after being diagnosed. Of 153 adolescents who were eventually diagnosed through the screening, 91 wrote narratives one year after diagnosis and 72 five years after diagnosis. A qualitative content analysis resulted in a theme and categories that describe the experience living with screening-detected CD five years after diagnosis. RESULTS:The overall theme--Internalizing the threat of risk--illustrates that being detected through screening and the internalized threat of future health complications have impacted how these adolescents felt about the diagnosis, coped with the gluten-free diet (GFD), and thought about CD screening. This theme is supported by four categories: maintaining an imposed disease identity describes how they continued to define their diagnosis in relation to the screening. They also expressed moving from forced food changes to adapted diet routines by describing habits, routines, coping strategies, and the financial burden of the GFD. They had enduring beliefs of being spared negative consequences, however, even after five years, some doubted they had CD and worried that being detected and eating a GFD might not be beneficial, i.e. continuing to fear it is "all in vain". CONCLUSIONS:There was maintenance and evolution in the perceptions, practices, and beliefs of the adolescents after five years. Some have adjusted to the disease and adapted new habits and coping strategies to deal with the GFD, while others still doubt they have CD or that being detected was beneficial. The transition to adapting to the disease and GFD is ongoing, illustrating the importance of providing ongoing support for those with screening-detected CD as they adjust to this chronic disease and the GFD.
journal_name
Health Qual Life Outcomesjournal_title
Health and quality of life outcomesauthors
Nordyke K,Rosén A,Emmelin M,Ivarsson Adoi
10.1186/1477-7525-12-91subject
Has Abstractpub_date
2014-06-11 00:00:00pages
91issn
1477-7525pii
1477-7525-12-91journal_volume
12pub_type
杂志文章abstract:BACKGROUND:Hereditary Angioedema (HAE), a rare genetic disease, manifests as intermittent, painful attacks of angioedema. Attacks vary in frequency and severity and include skin, abdominal and life-threatening laryngeal swellings. This study aimed to develop a patient reported outcome (PRO) tool for the assessment of H...
journal_title:Health and quality of life outcomes
pub_type: 杂志文章
doi:10.1186/s12955-015-0292-7
更新日期:2015-07-01 00:00:00
abstract:BACKGROUND:Previous studies in quality of life (QOL) in individuals with disorders/differences of sex development (DSD) have been restricted to subpopulations of the condition. We describe QOL in adult persons with DSD compared to country specific references and assess the impact of diagnosis. METHODS:The multicentre ...
journal_title:Health and quality of life outcomes
pub_type: 杂志文章,多中心研究
doi:10.1186/s12955-018-0881-3
更新日期:2018-04-03 00:00:00
abstract:BACKGROUND:Novel oral anticoagulants (NOAC) such as dabigatran, when compared to warfarin, have been shown to potentially reduce the risk of stroke in patients with non-valvular atrial fibrillation (NVAF) together with lower healthcare resource utilization (HCRU) and similar total costs. This study expands on previous ...
journal_title:Health and quality of life outcomes
pub_type: 杂志文章
doi:10.1186/s12955-017-0705-x
更新日期:2017-06-21 00:00:00
abstract:BACKGROUND:To generate high-quality evidence, contextually relevant outcome measurement instruments are required. Quality of life evaluation among polio survivors typically involves the use of generic instruments, which are developed and validated among a different groups of people. There is no clear evidence whether t...
journal_title:Health and quality of life outcomes
pub_type: 杂志文章,评审
doi:10.1186/s12955-020-01552-4
更新日期:2020-09-21 00:00:00
abstract:BACKGROUND:The Hip disability and Osteoarthritis Outcome Score (HOOS) is a frequently used patient-reported outcome measure (PROM) for assessment of hip disorders and treatment effects following hip surgery. The objective of the study was to translate and adapt the Hip disability and Osteoarthritis Outcome Score (HOOS)...
journal_title:Health and quality of life outcomes
pub_type: 杂志文章
doi:10.1186/s12955-020-01390-4
更新日期:2020-05-12 00:00:00
abstract:BACKGROUND:Psychometric evidence is necessary to establish scientific integrity and clinical usefulness of translations and cultural adaptations of the Stroke-Specific Quality of Life (SS-QoL) scale. However, the limited evidence on psychometrics of Yoruba version of SS-QoL 2.0 (SS-QoL(Y)) is a significant shortcoming....
journal_title:Health and quality of life outcomes
pub_type: 杂志文章
doi:10.1186/s12955-017-0775-9
更新日期:2017-10-19 00:00:00
abstract:BACKGROUND:Systemic lupus erythematosus (SLE) often has a profound negative impact on health-related quality of life (HRQoL). In the absence of any qualitative studies in sub-Saharan Africa, we undertook a study to explore living experiences, perceptions and unmet needs of South African patients with SLE. METHODS:Twen...
journal_title:Health and quality of life outcomes
pub_type: 杂志文章,多中心研究
doi:10.1186/s12955-019-1132-y
更新日期:2019-04-16 00:00:00
abstract:BACKGROUND:Previous studies have reported that socioeconomically disadvantaged Australians have poorer self-rated dental health (SRDH), are less likely to be insured for dental services and are less likely to have regular dental visits than their more advantaged counterparts. However, less is known about the associatio...
journal_title:Health and quality of life outcomes
pub_type: 杂志文章
doi:10.1186/1477-7525-12-67
更新日期:2014-05-09 00:00:00
abstract:BACKGROUND:The objectives of the study were to develop web-based Spanish and Catalan versions of the EQ-5D-Y, and to compare scores and psychometric properties with the paper version. METHODS:Web-based and paper versions of EQ-5D-Y were included in a cross-sectional study in Palafolls (Barcelona), Spain and administer...
journal_title:Health and quality of life outcomes
pub_type: 杂志文章
doi:10.1186/s12955-015-0271-z
更新日期:2015-06-03 00:00:00
abstract:BACKGROUND:Different generic quality of life instruments such as the Nottingham Health Profile (NHP) and the Short Form 36 Health Survey (SF-36) have revealed conflicting results in patients with chronic lower limb ischaemia in psychometric attributes in short-term evaluations. The aim of this study was to compare the ...
journal_title:Health and quality of life outcomes
pub_type: 杂志文章
doi:10.1186/1477-7525-2-9
更新日期:2004-02-17 00:00:00
abstract:BACKGROUND:The Asthma Symptom Utility Index (ASUI) is a preference-based outcome measure used in US clinical trials and cost-effectiveness studies for asthma. This study evaluated ASUI preference weights in Europe to determine whether the multi-attribute utility function, based on preferences from a US population, is g...
journal_title:Health and quality of life outcomes
pub_type: 杂志文章
doi:10.1186/1477-7525-4-51
更新日期:2006-08-15 00:00:00
abstract:BACKGROUND:Given that bariatric surgery (BS) and lifestyle intervention (LI) represent two vastly different approaches to treating severe obesity, there is growing interest in whether individuals who seek BS versus LI also differ on weight-related behaviors. In the present study, we compared BS- and LI-seekers on physi...
journal_title:Health and quality of life outcomes
pub_type: 杂志文章
doi:10.1186/1477-7525-10-86
更新日期:2012-07-28 00:00:00
abstract:BACKGROUND:People suffering different types of stroke have differing demographic characteristics and survival. However, current estimates of disease burden are based on the same underlying assumptions irrespective of stroke type. We hypothesized that average Quality Adjusted Life Years (QALYs) lost from stroke would be...
journal_title:Health and quality of life outcomes
pub_type: 杂志文章
doi:10.1186/1477-7525-8-49
更新日期:2010-05-14 00:00:00
abstract:BACKGROUND:This study aimed to investigate the prevalence of abdominal obesity and its association with the health-related quality of life (HRQOL) in a randomly selected Chinese sample. METHODS:A population-based sample of 3,600 residents aged 18-80 years was selected randomly from 5 Chinese cities. Demographic inform...
journal_title:Health and quality of life outcomes
pub_type: 杂志文章
doi:10.1186/1477-7525-12-100
更新日期:2014-06-13 00:00:00
abstract:BACKGROUND:The primary aim of rheumatoid arthritis (RA) treatment is to induce remission, the absence of disease activity. The objective of this study was to explore the association between clinical endpoints used to gauge RA treatment efficacy and patient-reported outcomes of health-related quality of life, fatigue, a...
journal_title:Health and quality of life outcomes
pub_type: 杂志文章,多中心研究,随机对照试验
doi:10.1186/1477-7525-12-31
更新日期:2014-03-05 00:00:00
abstract:BACKGROUND:Psychosocial models including illness perception might explain individual differences in health-related quality of life (HRQoL) and daily functioning in chronically ill patients. The aim of this study was to assess the association of illness perception among rheumatoid arthritis (RA) patients with physical a...
journal_title:Health and quality of life outcomes
pub_type: 杂志文章
doi:10.1186/s12955-018-1064-y
更新日期:2018-12-19 00:00:00
abstract:BACKGROUND:Many patients with coronary artery disease (CAD) have overlapping gastroenterological causes of recurrent chest pain, mainly due to gastroesophageal reflux (GER) and aspirin-induced gastrointestinal tract damage. These symptoms can be alleviated by proton pump inhibitors (PPIs). The study addressed whether o...
journal_title:Health and quality of life outcomes
pub_type: 杂志文章,随机对照试验
doi:10.1186/1477-7525-9-77
更新日期:2011-09-22 00:00:00
abstract:BACKGROUND:Studies that compare health-related quality of life (HRQOL) and other patient-reported outcomes in different populations rest on the assumption that the measure has equivalent psychometric properties across groups. This study examined the measurement equivalence (ME) of the 36-item Medical Outcomes Study Sho...
journal_title:Health and quality of life outcomes
pub_type: 杂志文章,多中心研究,随机对照试验
doi:10.1186/1477-7525-10-29
更新日期:2012-03-13 00:00:00
abstract:BACKGROUND:This article describes the development and validation of a self-reported questionnaire, the KQoL-26, that is based on the views of patients with a suspected ligamentous or meniscal injury of the knee that assesses the impact of their knee problem on the quality of their lives. METHODS:Patient interviews and...
journal_title:Health and quality of life outcomes
pub_type: 杂志文章
doi:10.1186/1477-7525-6-48
更新日期:2008-07-10 00:00:00
abstract:BACKGROUND:This study aims to validate the Chinese version of the Reynolds' Suicidal Ideation Questionnaire (SIQ) in a Chinese society and explore a convenient short version. METHODS:A sample of 711 cases was derived from two territory-wide surveys of Hong Kong adolescents aged between 15 and 19 years old. RESULTS:Th...
journal_title:Health and quality of life outcomes
pub_type: 杂志文章
doi:10.1186/1477-7525-12-33
更新日期:2014-03-10 00:00:00
abstract:BACKGROUND:The last decade has evidenced a dramatic increase in the development and utilization of pediatric health-related quality of life (HRQOL) measures in an effort to improve pediatric patient health and well-being and determine the value of healthcare services. The emerging paradigm shift toward patient-reported...
journal_title:Health and quality of life outcomes
pub_type: 杂志文章
doi:10.1186/1477-7525-5-1
更新日期:2007-01-03 00:00:00
abstract:BACKGROUND:Given the postulated advantages of mother generated index (MGI) in incorporating the patients' viewpoint and in the absence of a validated India specific postpartum quality of life assessment tool we proposed to evaluate the utility of an adapted Mother-Generated-Index in assessing postpartum quality of life...
journal_title:Health and quality of life outcomes
pub_type: 杂志文章
doi:10.1186/1477-7525-6-107
更新日期:2008-12-02 00:00:00
abstract:BACKGROUND:Previous pediatric studies have observed a cross-informant variance in patient self-reported health-related quality of life (HRQoL) versus parent proxy-reported HRQoL. This study assessed in older children and adolescents with a variety of chronic pain conditions: 1) the consistency and agreement between ped...
journal_title:Health and quality of life outcomes
pub_type: 杂志文章
doi:10.1186/1477-7525-10-85
更新日期:2012-07-23 00:00:00
abstract:BACKGROUND:Participating in regular physical activity contributes to significant improvements of quality of life (QOL) in adults. Understanding psychosocial factors that influence physical activity and QOL in working adults may have important implications for future interventions aimed at improving their health. The ma...
journal_title:Health and quality of life outcomes
pub_type: 杂志文章
doi:10.1186/s12955-019-1145-6
更新日期:2019-04-25 00:00:00
abstract:BACKGROUND:Providers and patients have called for improved understanding of the health care requirements of adults with sickle cell disease (SCD) and have identified the need for a systematic, reliable and valid method to document the patient-reported outcomes (PRO) of adult SCD care. To address this need, the Adult Si...
journal_title:Health and quality of life outcomes
pub_type: 临床试验,杂志文章
doi:10.1186/s12955-014-0125-0
更新日期:2014-08-22 00:00:00
abstract:BACKGROUND:The concept of health-related quality of life (HRQoL) was brought up decades ago and has been well utilized in many different areas. Regarding immune thrombocytopenia (ITP) management, much work has been done to emphasize the necessity of taking HRQoL into consideration. However, data on HRQoL of children wi...
journal_title:Health and quality of life outcomes
pub_type: 杂志文章
doi:10.1186/s12955-016-0445-3
更新日期:2016-03-15 00:00:00
abstract:BACKGROUND:The Quality Adjusted Life Year influences the allocation of significant amounts of healthcare resources. Despite this surprisingly little research effort has been devoted to analysing how beliefs and attitudes to hastening death influence preferences for health states anchored at "dead" and "perfect health"....
journal_title:Health and quality of life outcomes
pub_type: 杂志文章
doi:10.1186/s12955-018-0985-9
更新日期:2018-07-31 00:00:00
abstract:BACKGROUND:Dizziness or vertigo is associated with both vestibular-balance and psychological factors. A common assessment tool is the Vertigo Symptom Scale (VSS) -short form, which has two subscales: vestibular-balance and autonomic-anxiety. Despite frequent use, the factor structure of the VSS-short form has yet to be...
journal_title:Health and quality of life outcomes
pub_type: 杂志文章
doi:10.1186/s12955-015-0207-7
更新日期:2015-01-22 00:00:00
abstract:BACKGROUND:Porphyria cutanea tarda (PCT) is a rare, photosensitive disease characterized by skin fragility and blistering on sun-exposed areas. There is little previous research on how this condition affects health-related quality of life (HRQoL) and to the best of our knowledge this is the largest sample of PCT patien...
journal_title:Health and quality of life outcomes
pub_type: 杂志文章
doi:10.1186/s12955-020-01328-w
更新日期:2020-03-30 00:00:00
abstract:BACKGROUND:Dental caries, traumatic dental injury (TDI) and malocclusion are common oral health conditions among preschool children and can have both physical and psychosocial consequences. Thus, it is important to measure the impact these on the oral health-related quality of life (OHRQoL) of children. The aim of the ...
journal_title:Health and quality of life outcomes
pub_type: 杂志文章
doi:10.1186/1477-7525-12-55
更新日期:2014-04-18 00:00:00