Abstract:
BACKGROUND:Dyspnea is frequent in amyotrophic lateral sclerosis (ALS) and one of the most bothersome symptoms. The recently developed Dyspnea-ALS-Scale (DALS-15) is a disease-specific patient-reported outcome to detect and quantify dyspnea. OBJECTIVES:To analyze in a case-based approach the diagnostic and clinical implications and the benefit of the DALS-15 for individual patients in daily clinical routine. METHODS:Dyspnea was assessed by the 15-item comprising DALS-15 in two patients with ALS. Spirometry was performed and blood gases were analyzed. Results were evaluated in the clinical context of the respective patients. RESULTS:In one patient the presence of dyspnea detected by the DALS-15 indicated noninvasive ventilation (NIV) although forced vital capacity (FVC) and blood gas analysis were well preserved. After NIV implementation, the DALS-15 was helpful to determine the patient's need for medication, the timing of NIV titration and the adaptation of NIV sessions. In another patient, who was anarthric and no longer able to perform spirometry due to severe bulbar impairment, the DALS-15 allowed a standardized assessment of dyspnea-related distress independently of bulbar dysfunction. CONCLUSION:The DALS-15 provides a deeper insight into the respiratory status of individual patients. It helps to diagnose respiratory impairment in patients in whom NIV should be considered although FVC and blood gas results do not reveal indication for NIV. It is also valuable for the guidance of patients in later stages of respiratory impairment when NIV is already implemented, and in patients with severe bulbar dysfunction. The DALS-15 can improve specific symptom management and coordination of care and therefore has the potential to optimize individual treatment in ALS patients with dyspnea.
journal_name
Health Qual Life Outcomesjournal_title
Health and quality of life outcomesauthors
Vogt S,Schreiber S,Heinze HJ,Dengler R,Petri S,Vielhaber Sdoi
10.1186/s12955-019-1167-0subject
Has Abstractpub_date
2019-06-03 00:00:00pages
95issue
1issn
1477-7525pii
10.1186/s12955-019-1167-0journal_volume
17pub_type
杂志文章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: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: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:Single cardio-metabolic risk factors are each known modifiable risk factors for adverse health and quality of life outcomes. Yet, evidence on the clustered effect of these parameters and the metabolic syndrome (MetS) on health-related quality of life (HRQoL) is still limited and mostly cross-sectional. The o...
journal_title:Health and quality of life outcomes
pub_type: 杂志文章
doi:10.1186/s12955-020-01557-z
更新日期:2020-10-20 00:00:00
abstract:BACKGROUND:The aim of a rapid response system (RRS) is to improve the timely recognition and treatment of ward patients with deteriorating vital signs The system is based on a set of clinical criteria that are used to assess patient's vital signs on a general ward. Once a patient is evaluated as critical, a medical eme...
journal_title:Health and quality of life outcomes
pub_type: 杂志文章
doi:10.1186/1477-7525-11-74
更新日期:2013-05-01 00:00:00
abstract:BACKGROUND:Patients with head and neck cancer (HNC) who are receiving radiotherapy commonly face detrimental complications, including oral issues. However, oral symptoms are not well understood given the lack of available specific assessment instruments. The Vanderbilt Head and Neck Symptom Survey version (VHNSS) 2.0 i...
journal_title:Health and quality of life outcomes
pub_type: 杂志文章
doi:10.1186/s12955-021-01673-4
更新日期:2021-01-21 00:00:00
abstract:PURPOSE:Systemic family interventions have shown to be effective in adolescents with substance use disorder and delinquent behavior. The interventions target interactions between the adolescent and involved systems (i.e. youth, family, peers, neighbors, school, work, and society). Next to effectiveness considerations, ...
journal_title:Health and quality of life outcomes
pub_type: 杂志文章,评审
doi:10.1186/s12955-017-0722-9
更新日期:2017-09-19 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:INTRODUCTION:Health related quality of life is a multi-dimensional construct of particular interest in determining the consequences of illness and disease. This study aimed to determine the relationships between overweight/obesity, and associated obesogenic risk behaviours with health related quality of life and physic...
journal_title:Health and quality of life outcomes
pub_type: 杂志文章
doi:10.1186/s12955-019-1086-0
更新日期:2019-01-18 00:00:00
abstract:BACKGROUND:We previously reported that changes of 6-17 percent in the EORTC QLQ-C30 scores are regarded important by patients with multiple myeloma and thus may be considered as Minimal Important Differences (MIDs). However, patients' internal standard of measurement may have changed over time (response shift, RS). In ...
journal_title:Health and quality of life outcomes
pub_type: 杂志文章,随机对照试验
doi:10.1186/1477-7525-8-79
更新日期:2010-08-03 00:00:00
abstract:BACKGROUND:There is increasing international interest in the concept of mental well-being and its contribution to all aspects of human life. Demand for instruments to monitor mental well-being at a population level and evaluate mental health promotion initiatives is growing. This article describes the development and v...
journal_title:Health and quality of life outcomes
pub_type: 杂志文章
doi:10.1186/1477-7525-5-63
更新日期:2007-11-27 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:PURPOSE:Chronic kidney disease (CKD) induces frailty and worsens quality of life (QOL), even in the early stages of the disease and in young patients. However, there is a lack of knowledge about the relationship between frailty and QOL in CKD patients. Thus, we investigated this relationship in a sample of CKD patients...
journal_title:Health and quality of life outcomes
pub_type: 杂志文章
doi:10.1186/1477-7525-12-27
更新日期:2014-02-28 00:00:00
abstract:BACKGROUND:Adverse childhood experiences (ACE) have been previously linked to quality of life, health conditions, and life expectancy in adulthood. Less is known about the potential mechanisms which mediate these associations. This study examined how ACE influences adult health-related quality of life (HRQoL) in a low-...
journal_title:Health and quality of life outcomes
pub_type: 杂志文章
doi:10.1186/s12955-015-0323-4
更新日期:2015-08-11 00:00:00
abstract:BACKGROUND:A strong consensus exists for a systematic approach to linguistic validation of patient reported outcome measures (PROMs) and discrete methods for assessing their psychometric properties. Despite the need for robust evidence of the appropriateness of measures, transition from linguistic to psychometric valid...
journal_title:Health and quality of life outcomes
pub_type: 杂志文章
doi:10.1186/1477-7525-10-64
更新日期:2012-06-08 00:00:00
abstract:BACKGROUND:Quality of life (QoL) may often be reduced in survivors of a natural disaster. This paper investigated how posttraumatic growth (PTG), depression and posttraumatic stress interact and independently predict QoL in a longitudinal study of disaster survivors. METHODS:A total of 58 Norwegian adults who were pre...
journal_title:Health and quality of life outcomes
pub_type: 杂志文章
doi:10.1186/s12955-014-0202-4
更新日期:2015-02-07 00:00:00
abstract:BACKGROUND:Health-Related Quality of Life (HRQoL) is an important endpoint in oncology clinical trials aiming to investigate the clinical benefit of new therapeutic strategies for the patient. However, the longitudinal analysis of HRQoL remains complex and unstandardized. There is clearly a need to propose accessible s...
journal_title:Health and quality of life outcomes
pub_type: 杂志文章
doi:10.1186/s12955-014-0192-2
更新日期:2014-12-31 00:00:00
abstract:BACKGROUND:After long term disease free follow up (FUp) patients reconsider quality of life (QOL) outcomes. Aim of this study is assess QoL in prostate cancer patients who are disease-free at least 5 years after radical prostatectomy (RP). METHODS:367 patients treated with RP for clinically localized pCa, without bioc...
journal_title:Health and quality of life outcomes
pub_type: 杂志文章
doi:10.1186/1477-7525-7-94
更新日期:2009-11-13 00:00:00
abstract:BACKGROUND:With data from a diverse sample of patients either in treatment for cancer or post-treatment for cancer, we examine inter-domain and cross-domain correlations among the core domains of the Patient-Reported Outcomes Measurement Information System Sexual Function and Satisfaction measures (PROMIS® SexFS) and t...
journal_title:Health and quality of life outcomes
pub_type: 杂志文章
doi:10.1186/1477-7525-11-40
更新日期:2013-03-11 00:00:00
abstract:BACKGROUND:Global research shows a clear transition in health outcomes over the past two decades where improved survival was accompanied by lower health related quality of life (HRQoL) as measured by morbidity and disability. These trends suggest the need to better understand changes in population HRQoL. This paper com...
journal_title:Health and quality of life outcomes
pub_type: 杂志文章
doi:10.1186/s12955-014-0113-4
更新日期:2014-08-05 00:00:00
abstract:BACKGROUND:The EORTC-QLQ-C30 is a widely used health related quality of life (HRQoL) questionnaire in lung cancer patients. Small HRQoL treatment effects are often reported as mean differences (MDs) between treatments, which are rarely justified or understood by patients and clinicians. An alternative approach using od...
journal_title:Health and quality of life outcomes
pub_type: 杂志文章
doi:10.1186/s12955-015-0374-6
更新日期:2015-11-14 00:00:00
abstract:BACKGROUND:Little is known about the association between diabetes and health related quality of life (HRQL) in lower-middle income countries. This study aimed to investigate HRQL among individuals with and without diabetes in Bangladesh. METHODS:The analysis is based on data of a case-control study, including 591 pati...
journal_title:Health and quality of life outcomes
pub_type: 杂志文章
doi:10.1186/s12955-016-0530-7
更新日期:2016-09-13 00:00:00
abstract:BACKGROUND:Measuring quality of life (QOL) in a population is important for the predictions of health and social care needs. In Pakistan, health related quality of life data exist but there are no quality of life data of general population. In this study, quality of life was assessed among the Pakistani general populat...
journal_title:Health and quality of life outcomes
pub_type: 杂志文章
doi:10.1186/s12955-018-1065-x
更新日期:2019-01-14 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: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 t...
journal_title:Health and quality of life outcomes
pub_type: 杂志文章
doi:10.1186/1477-7525-12-91
更新日期:2014-06-11 00:00:00
abstract:BACKGROUND:Narcolepsy is a lifelong sleep disorder with a prevalence of between 0.03% and 0.06% and onset at around puberty. It is associated with psychiatric comorbidities and cognitive difficulties. No valid and reliable condition-specific health-related quality-of-life (HrQoL) instrument has been developed for this ...
journal_title:Health and quality of life outcomes
pub_type: 杂志文章
doi:10.1186/s12955-017-0707-8
更新日期:2017-07-04 00:00:00
abstract::. ...
journal_title:Health and quality of life outcomes
pub_type: 杂志文章,已发布勘误
doi:10.1186/s12955-019-1122-0
更新日期:2019-03-27 00:00:00
abstract:BACKGROUND:The EQ-5D-5 L and the SF-12 are the most commonly used generic measures of health-related quality of life among people with arthritis. However, there is little evidence on the extent to which the individual dimensions and domains of these instruments perform among this population. The objective was to examin...
journal_title:Health and quality of life outcomes
pub_type: 杂志文章
doi:10.1186/s12955-019-1129-6
更新日期:2019-04-17 00:00:00
abstract:BACKGROUND:This study aims to (i) evaluate the association between anxiety and depressive symptoms and health-related quality of life (HRQoL); and (ii) identify the effect modifiers of this relationship in patients with chronic obstructive pulmonary disease (COPD). METHODS:A total of 337 clinically stable COPD patient...
journal_title:Health and quality of life outcomes
pub_type: 杂志文章
doi:10.1186/1477-7525-8-108
更新日期:2010-09-27 00:00:00
abstract:BACKGROUND:Along with rapid economic development, the aging process in China is gradually accelerating. The living conditions of empty-nest rural elderly are worrisome. As a more vulnerable group, empty-nest elderly are facing more urgent health problems. This study explores the health-related quality of life (HRQOL) o...
journal_title:Health and quality of life outcomes
pub_type: 杂志文章
doi:10.1186/1477-7525-12-59
更新日期:2014-04-25 00:00:00