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 patients surveyed about their HRQoL. The aims of this study were to describe HRQoL, symptoms, susceptibility factors, disease activity and treatment in patients with PCT, and investigate the associations between these factors. METHODS:This is a cross-sectional, retrospective study based on patient-reported outcome and laboratory data. The Norwegian Porphyria Centre diagnoses all patients with PCT in Norway, all of whom are invited to participate in the Norwegian Porphyria Registry. Between December 2013-2015, 111 patients received a postal questionnaire and invitation to participate. RESULTS:Sixty-eight persons responded, with seven being excluded due to prolonged response time or missing information, resulting in 61 participants in the final analyses (55%). Median age was 60 years and 33 were female. We found a moderate negative relationship between the type and localisation of PCT symptoms and both mental (r = -.354 p < 0.01) and physical (r = -.441, p < 0.01) aspects of HRQoL. Participants who had started treatment when answering the questionnaire reported significantly better physical functioning and less bodily pain than those who had not started treatment. We did not observe an association between biochemical markers of disease activity and symptoms or HRQoL. Itching, a symptom that has received little attention in PCT was reported by 59% of the participants. CONCLUSIONS:Our results show that reduced HRQoL is associated with more symptoms and not having started treatment. PCT is a rare disease, and there is a need for the development of best-practice guidelines to facilitate good patient care.
journal_name
Health Qual Life Outcomesjournal_title
Health and quality of life outcomesauthors
Andersen J,Thomsen J,Enes ÅR,Sandberg S,Aarsand AKdoi
10.1186/s12955-020-01328-wsubject
Has Abstractpub_date
2020-03-30 00:00:00pages
84issue
1issn
1477-7525pii
10.1186/s12955-020-01328-wjournal_volume
18pub_type
杂志文章abstract:BACKGROUND:Iraq used chemical weapons extensively against the Iranians during the Iran-Iraq war (1980-1988). The aim of this study was to assess the health related quality of life (HRQOL) in people who had ophthalmologic complications due to the sulfur mustard gas exposure during the war. METHODS:The Veterans and Mart...
journal_title:Health and quality of life outcomes
pub_type: 杂志文章
doi:10.1186/1477-7525-7-2
更新日期:2009-01-19 00:00:00
abstract:BACKGROUND:Ulcerative colitis disease activity is determined by measuring symptoms and signs. Our aim was to determine which symptom domains are frequent and responsive to change in the evaluation of disease activity, which are those defined by three criteria: 1) they occur frequently during flares; 2) they improve dur...
journal_title:Health and quality of life outcomes
pub_type: 杂志文章
doi:10.1186/1477-7525-6-69
更新日期:2008-09-20 00:00:00
abstract:BACKGROUND:A valid and efficient stress measure is important for clinical and community settings. The objectives of this study were to translate the English version of the Perceived Stress Questionnaire (PSQ) into Chinese and to assess the psychometric properties of the Chinese version of the PSQ (C-PSQ). The C-PSQ eva...
journal_title:Health and quality of life outcomes
pub_type: 杂志文章
doi:10.1186/s12955-020-01307-1
更新日期:2020-03-13 00:00:00
abstract:INTRODUCTION:The primary objective of this sub analysis of the CONOCES study was to analyse outcomes in terms of mortality rates, quality of life and degree of autonomy over the first year in patients admitted to stroke units in Spain. The secondary objective was to identify the factors determining good prognosis. MET...
journal_title:Health and quality of life outcomes
pub_type: 杂志文章
doi:10.1186/s12955-015-0230-8
更新日期:2015-03-17 00:00:00
abstract:BACKGROUND:The goal of the research reported here was to understand the patient experience of living with myelofibrosis (MF) and establish content validity of the Modified Myeloproliferative Neoplasm Symptom Assessment Diary (MPN-SD). METHODS:Qualitative interviews were performed in patients with MF, including both co...
journal_title:Health and quality of life outcomes
pub_type: 杂志文章
doi:10.1186/s12955-019-1121-1
更新日期:2019-04-11 00:00:00
abstract:BACKGROUND:Few questionnaires on outpatients' satisfaction with hospital exist. All have been constructed without giving enough room for the patient's point of view in the validation procedure. The main objective was to develop, according to psychometric standards, a self-administered generic outpatient questionnaire e...
journal_title:Health and quality of life outcomes
pub_type: 杂志文章,多中心研究
doi:10.1186/1477-7525-2-43
更新日期:2004-08-04 00:00:00
abstract:BACKGROUND AND OBJECTIVE:A limited number of studies have evaluated the effects of oral contraceptives (OCs) on the quality of life (QOL) of polycystic ovary syndrome (PCOS) patients. This study aimed to compare the effects of using OCs containing levonorgestrel (LNG) and those containing desogestrel (DSG), cyproterone...
journal_title:Health and quality of life outcomes
pub_type: 杂志文章,随机对照试验
doi:10.1186/s12955-020-01544-4
更新日期:2020-08-31 00:00:00
abstract:BACKGROUND:The Oxford Shoulder Score (OSS) and the Shoulder Pain and Disability Index (SPADI) are patient-based outcome scores with valid psychometric properties which are widely used for shoulder interventions. OBJECTIVE:The purpose of the study is to adapt both questionnaires cross-culturally to Spanish, and to test...
journal_title:Health and quality of life outcomes
pub_type: 杂志文章
doi:10.1186/s12955-015-0256-y
更新日期:2015-05-23 00:00:00
abstract::The McMaster framework introduced by Kirshner & Guyatt is the dominant paradigm for the development of measures of health status and health-related quality of life (HRQL). The framework defines the functions of such instruments as evaluative, predictive or discriminative. Evaluative instruments are required to be sens...
journal_title:Health and quality of life outcomes
pub_type: 杂志文章
doi:10.1186/1477-7525-6-36
更新日期:2008-05-27 00:00:00
abstract:BACKGROUND:Assessing Health-related Quality of life (HRQoL) is necessary to evaluate care and treatments provided to patients with major depressive disorder (MDD), in addition to the traditional assessment of clinical outcomes. However, HRQoL remains under-utilized to assess the effectiveness of repetitive transcranial...
journal_title:Health and quality of life outcomes
pub_type: 杂志文章
doi:10.1186/1477-7525-10-87
更新日期:2012-07-28 00:00:00
abstract:BACKGROUND:Precise assessment of health-related quality of life (HRQOL) with a reliable and valid measure is a prerequisite to the enhancement of HRQOL. This study examined the psychometric properties of the Korean version of the Medical Outcomes Study HIV Health Survey (K-MOS-HIV). METHODS:The reliability and validit...
journal_title:Health and quality of life outcomes
pub_type: 杂志文章,多中心研究
doi:10.1186/s12955-018-0919-6
更新日期:2018-05-15 00:00:00
abstract:BACKGROUND:A linguistic validation of the Self-Assessment Goal Achievement (SAGA) questionnaire was conducted for 12 European languages, documenting that each translation adequately captures the concepts of the original English-language version of the questionnaire and is readily understood by subjects in the target po...
journal_title:Health and quality of life outcomes
pub_type: 杂志文章
doi:10.1186/1477-7525-10-40
更新日期:2012-04-23 00:00:00
abstract:BACKGROUND:Oral health-related quality of life (OHRQoL) has important implications for the clinical practice of dentistry and dental research and should contribute to professional judgment about restorative treatments and prosthetic replacement in patients who had reduced dentitions. The aim was to compare the OHRQoL a...
journal_title:Health and quality of life outcomes
pub_type: 杂志文章
doi:10.1186/s12955-019-1149-2
更新日期:2019-05-03 00:00:00
abstract:BACKGROUND:Compliance, palatability, gastrointestinal (GI) symptom, and treatment satisfaction patient- and observer-reported outcome (PRO, ObsRO) measures were developed/modified for patients with transfusion-dependent anemias or myelodysplastic syndrome (MDS) requiring iron chelation therapy (ICT). METHODS:This qual...
journal_title:Health and quality of life outcomes
pub_type: 杂志文章
doi:10.1186/s12955-017-0702-0
更新日期:2017-06-23 00:00:00
abstract:BACKGROUND:There is variation in the number of response alternatives used within health-related questionnaires. This study compared a four-and a five-point scale version of the Norwegian Function Assessment Scale (NFAS) by evaluating data quality, internal consistency and validity. METHODS:All inhabitants in seven bir...
journal_title:Health and quality of life outcomes
pub_type: 杂志文章,随机对照试验
doi:10.1186/1477-7525-6-14
更新日期:2008-02-15 00:00:00
abstract:BACKGROUND:Previous work using Mokken scaling analysis with the SF-36 has found subscales appearing to show excellent Mokken scaling properties. However, the values of scalability of the subscales are very large, raising the possibility that these are artificially high and this may result from violations of local stoch...
journal_title:Health and quality of life outcomes
pub_type: 杂志文章
doi:10.1186/s12955-014-0149-5
更新日期:2014-10-29 00:00:00
abstract:BACKGROUND:Knee Injury and Osteoarthritis Outcome Score (KOOS) is available in over 30 languages and a commonly used Patient-Reported Outcome (PRO) for assessment of treatment effects following knee surgery. The aim of the study was to report the linguistic translational process and evaluate the psychometric properties...
journal_title:Health and quality of life outcomes
pub_type: 杂志文章
doi:10.1186/1477-7525-11-107
更新日期:2013-06-27 00:00:00
abstract:BACKGROUND:Cavotricuspid isthmus (CTI) ablation is the treatment of choice in preventing recurrences of typical atrial flutter (AFl). However, little is known about long-term quality of life (QoL) after CTI ablation. METHODS AND RESULTS:From 01/2003 to 05/2005, 94 patients who consecutively underwent typical AFl ablat...
journal_title:Health and quality of life outcomes
pub_type: 杂志文章
doi:10.1186/1477-7525-12-47
更新日期:2014-04-07 00:00:00
abstract:BACKGROUND:The West-Haven Multidimensional Pain Inventory (MPI) can be used to describe behavioural and psychosocial consequences of long-term pain but little is known about how MPI items and MPI subgroups relate to goals that patients find important in rehabilitation. Life satisfaction measured by the LiSat-11 checkli...
journal_title:Health and quality of life outcomes
pub_type: 杂志文章
doi:10.1186/1477-7525-6-70
更新日期:2008-09-23 00:00:00
abstract:BACKGROUND:Although considerable progress has been made in the treatment of chronic kidney disease, compromised quality of life continues to be a significant problem for patients receiving hemodialysis (HD). However, in spite of the high prevalence of sleep complaints and disorders in this population, the relationship ...
journal_title:Health and quality of life outcomes
pub_type: 杂志文章
doi:10.1186/1477-7525-1-68
更新日期:2003-11-21 00:00:00
abstract:BACKGROUND:There is limited data examining the association between cardiorespiratory fitness (CRF) and health related quality of life (HRQOL) in healthy young adults. We examined the association between CRF and the HRQOL Physical Component Summary (PCS) and Mental Component Summary (MCS) scores in apparently healthy ma...
journal_title:Health and quality of life outcomes
pub_type: 杂志文章
doi:10.1186/1477-7525-7-47
更新日期:2009-05-28 00:00:00
abstract:BACKGROUND:Self-reported limitations in physical function often have only weak associations with measured performance on physical tests, suggesting that factors other than performance commonly influence self-reports. We tested if personal or health characteristics influenced self-reported limitations in three tasks, co...
journal_title:Health and quality of life outcomes
pub_type: 杂志文章
doi:10.1186/1477-7525-8-84
更新日期:2010-08-13 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:Heart Failure (HF) results in an immense impact on the patients' Health-related quality of life (HRQOL). Heart failure patients HRQOL is dependent on the patients' level of engagement in self-care behaviors. Therefore this study aimed to determine HF patients' health-related quality of life and its relations...
journal_title:Health and quality of life outcomes
pub_type: 杂志文章
doi:10.1186/s12955-020-01290-7
更新日期:2020-02-14 00:00:00
abstract:OBJECTIVE:End-stage renal disease (ESRD) leads to renal replacement therapy and certainly has an impact on patients' health-related quality of life (HRQoL). This study aimed to review and compare the HRQoL between peritoneal dialysis (PD) and hemodialysis (HD) patients using the 36-Item Short Form Health Survey (SF-36)...
journal_title:Health and quality of life outcomes
pub_type: 杂志文章,meta分析
doi:10.1186/s12955-020-01449-2
更新日期:2020-06-18 00:00:00
abstract:BACKGROUND:Although multiple language versions of health-related quality of life instruments are often used interchangeably in clinical research, the measurement equivalence of these versions (especially using alphabet vs pictogram-based languages) has rarely been assessed. We therefore investigated the measurement equ...
journal_title:Health and quality of life outcomes
pub_type: 杂志文章
doi:10.1186/1477-7525-1-7
更新日期:2003-04-17 00:00:00
abstract:BACKGROUND:Fatigue has a major influence on the quality of life of people with multiple sclerosis. The Fatigue Severity Scale is a frequently used patient-reported measure of fatigue impact, but does not generate the health state utility values required to inform cost-effectiveness analysis, limiting its applicability ...
journal_title:Health and quality of life outcomes
pub_type: 杂志文章
doi:10.1186/s12955-019-1205-y
更新日期:2019-08-05 00:00:00
abstract:BACKGROUND:The resilience to face disease is a process of positive adaptation despite the loss of health. It involves developing vitality and skills to overcome the negative effects of adversity, risks, and vulnerability caused by disease. In Mexico, the Mexican Resilience Measurement Scale (RESI-M) has been validated ...
journal_title:Health and quality of life outcomes
pub_type: 杂志文章
doi:10.1186/s12955-017-0817-3
更新日期:2017-12-13 00:00:00
abstract:OBJECTIVES:We assessed health-related quality of life (HRQOL), its associated factors, and examined measurement properties of the EuroQol - 5 Dimensions - 5 Levels (EQ-5D-5L) in HIV/AIDS patients. METHODS:A cross-sectional multi-site survey was conducted in 1016 patients (age: 35.4 ± 7.0 years; 63.8% male) in three ep...
journal_title:Health and quality of life outcomes
pub_type: 杂志文章
doi:10.1186/1477-7525-10-132
更新日期:2012-11-01 00:00:00
abstract:BACKGROUND:This study examined sex-specific differences in physical health-related quality of life (HRQoL) across subgroups of metabolic health and obesity. We specifically asked whether (1) obesity is related to lower HRQoL independent of metabolic health status and potential confounders, and (2) whether associations ...
journal_title:Health and quality of life outcomes
pub_type: 杂志文章
doi:10.1186/s12955-017-0688-7
更新日期:2017-06-10 00:00:00