Health-related quality of life measurement in cystic fibrosis: advances and limitations.

Abstract:

:Health-related quality of life (HRQoL) measurement in cystic fibrosis (CF) allows the inclusion of the patient's perspective in research and clinical practice. HRQoL scales have been used for many purposes and this review focuses on how HRQoL measurement has been implemented in CF research and care. Specifically, the review considers 1) the instruments used to measure HRQoL, 2) the factors that influence how people report HRQoL, 3) the monitoring of HRQoL in clinical practice, 4) HRQoL as an outcome measure in interventions and clinical trials and 5) whether HRQoL can predict survival. The challenge for the future is to use the available information to develop and evaluate psychological interventions that would be expected to improve HRQoL in children and adults with CF.

journal_name

Chron Respir Dis

authors

Abbott J

doi

10.1177/1479972308098159

subject

Has Abstract

pub_date

2009-01-01 00:00:00

pages

31-41

issue

1

eissn

1479-9723

issn

1479-9731

pii

6/1/31

journal_volume

6

pub_type

杂志文章,评审
  • Attendance at pulmonary rehabilitation classes: an exploration of demographic, physiological and psychological factors that predict completion of treatment.

    abstract::Pulmonary rehabilitation (PR) is an effective treatment for people with chronic obstructive pulmonary disease (COPD). However, uptake and adherence to rehabilitation is poor and non-adherence is associated with poorer clinical outcomes. This study investigated the factors that might predict an individual completing hi...

    journal_title:Chronic respiratory disease

    pub_type: 杂志文章

    doi:10.1177/1479972314527469

    authors: Cassidy S,Turnbull S,Gardani M,Kirkwood K

    更新日期:2014-05-01 00:00:00

  • Discriminant validity of the Hospital Anxiety and Depression Scale, Beck Depression Inventory (II) and Beck Anxiety Inventory to confirmed clinical diagnosis of depression and anxiety in patients with chronic obstructive pulmonary disease.

    abstract::The objective of this study was to investigate the discriminant validity of commonly used depression and anxiety screening tools in order to determine the most suitable tool for patients with chronic obstructive pulmonary disease (COPD). COPD patients (n = 56) completed the Hospital Anxiety and Depression Scale (HADS)...

    journal_title:Chronic respiratory disease

    pub_type: 杂志文章,多中心研究

    doi:10.1177/1479972316634604

    authors: Phan T,Carter O,Adams C,Waterer G,Chung LP,Hawkins M,Rudd C,Ziman M,Strobel N

    更新日期:2016-08-01 00:00:00

  • 'Papillomatization' and 'malignant transformation' of an abscess cavity in a 25-year old man with recurrent respiratory papillomatosis who may have had Lemierre syndrome.

    abstract::We report here an unusual case of a 25-year old male with juvenile onset recurrent respiratory papillomatosis who developed an infestation of papillomata 'papillomatization' of an old abscess cavity that, when removed, was coincidently found to contain a 2 cm well differentiated squamous cell carcinoma. The abscess ca...

    journal_title:Chronic respiratory disease

    pub_type: 杂志文章

    doi:10.1191/1479972304cd042cr

    authors: Veale A,Jurisevic C,Pieterse S,Psaltis A

    更新日期:2004-01-01 00:00:00

  • Improvement in health status following cough-suppression physiotherapy for patients with chronic cough.

    abstract::Cough-suppression physiotherapy is a novel self-help therapy for chronic cough. We evaluated the effectiveness of cough physiotherapy in a pilot prospective observational study. We assessed cough-specific health-related quality of life (HRQOL) with the Leicester Cough Questionnaire (LCQ) and subjectively reported coug...

    journal_title:Chronic respiratory disease

    pub_type: 临床试验,杂志文章

    doi:10.1177/1479972311422547

    authors: Patel AS,Watkin G,Willig B,Mutalithas K,Bellas H,Garrod R,Pavord ID,Birring SS

    更新日期:2011-01-01 00:00:00

  • Management of suspected COVID-19 patients in a low prevalence region.

    abstract::The spread of the SARS-CoV-2 infection among population has imposed a re-organization of healthcare services, aiming at stratifying patients and dedicating specific areas where patients with suspected COVID-related respiratory disease could receive the necessary health care assistance while waiting for the confirmatio...

    journal_title:Chronic respiratory disease

    pub_type: 杂志文章

    doi:10.1177/1479973120961843

    authors: Scichilone N,Basile L,Battaglia S,Benfante A,Fonte R,Gambino F,Marino S,Messina R,Poma S,Principe S,Salamone G,Zammuto M

    更新日期:2020-01-01 00:00:00

  • Is there a learning effect when the 6-minute walk test is repeated in people with suspected pulmonary hypertension?

    abstract::The aim of the study was to determine if there was a difference in 6-minute walk distance (6MWD) when two 6-minute walk tests (6MWTs) were performed at the initial assessment prior to attendance at the pulmonary hypertension (PH) clinic and at the 6-month follow-up. Two 6MWTs were performed at both visits on a 32-m co...

    journal_title:Chronic respiratory disease

    pub_type: 杂志文章

    doi:10.1177/1479972317752762

    authors: Spencer L,Zafiropoulos B,Denniss W,Fowler D,Alison J,Celermajer D

    更新日期:2018-11-01 00:00:00

  • Setting up home noninvasive ventilation.

    abstract::Home noninvasive ventilation (NIV) is widely used to correct nocturnal alveolar hypoventilation in patients with chronic respiratory failure of various etiologies. The most commonly used ventilation mode is pressure support with a backup respiratory rate. This mode requires six main settings, as well as some additiona...

    journal_title:Chronic respiratory disease

    pub_type: 杂志文章,评审

    doi:10.1177/1479973119844090

    authors: Arnal JM,Thevenin CP,Couzinou B,Texereau J,Garnero A

    更新日期:2019-01-01 00:00:00

  • Comparison of the effectiveness of music and progressive muscle relaxation for anxiety in COPD--A randomized controlled pilot study.

    abstract::Acute effects of music and relaxation have not been evaluated in hospitalized subjects with chronic obstructive pulmonary disease (COPD). This study aims to evaluate the acute effects of music and progressive muscle relaxation (PMR) in hospitalized COPD subjects after a recent episode of exacerbation. A Randomized con...

    journal_title:Chronic respiratory disease

    pub_type: 杂志文章,多中心研究,随机对照试验

    doi:10.1177/1479972309346754

    authors: Singh VP,Rao V,V P,R C S,K KP

    更新日期:2009-01-01 00:00:00

  • Daily spirometry in an acute exacerbation of adult cystic fibrosis patients.

    abstract::To help answer the question of length of intravenous antibiotics during an acute exacerbation of cystic fibrosis (CF), we had subjects to follow daily home spirometry while on intravenous antibiotics. CF patients, 18 and older, with an acute exacerbation requiring intravenous antibiotics had a daily FEV1. The average ...

    journal_title:Chronic respiratory disease

    pub_type: 杂志文章

    doi:10.1177/1479972317743756

    authors: Stephen MJ,Long A,Bonsall C,Hoag JB,Shah S,Bisberg D,Holsclaw D,Varlotta L,Fiel S,Du D,Zanni R,Hadjiliadis D

    更新日期:2018-08-01 00:00:00

  • Functional status measures for the COPD patient: A practical categorization.

    abstract::The objective of this study is to review available functional status measures (FSMs) validated for use in the chronic obstructive pulmonary disease (COPD) population and categorizing the measures by their commonalities to formulate a framework that supports clinicians in the selection and application of FSMs. A litera...

    journal_title:Chronic respiratory disease

    pub_type: 杂志文章,评审

    doi:10.1177/1479973118816464

    authors: Lareau SC,Blackstock FC

    更新日期:2019-01-01 00:00:00

  • Digital technology in respiratory diseases: Promises, (no) panacea and time for a new paradigm.

    abstract::In a world where digital technology has revolutionized the way we work, shop and manage our finances it is unsurprising that digital systems are suggested as potential solutions to delivering clinically and cost-effective care for an aging population with one or more long-term conditions. However, recent evidence sugg...

    journal_title:Chronic respiratory disease

    pub_type: 杂志文章,评审

    doi:10.1177/1479972316637788

    authors: Pinnock H,McKinstry B

    更新日期:2016-05-01 00:00:00

  • COPD patients prescribed inhaled corticosteroid in general practice: Based on disease characteristics according to guidelines?

    abstract::In a primary care setting, our aim was to investigate characteristics of patients classified as having chronic obstructive pulmonary disease (COPD) and currently being prescribed inhaled corticosteroids (ICSs). The electronic patient record system in each participating general practice was searched for patients coded ...

    journal_title:Chronic respiratory disease

    pub_type: 杂志文章

    doi:10.1177/1479973119867949

    authors: Savran O,Godtfredsen N,Sørensen T,Jensen C,Ulrik CS

    更新日期:2019-01-01 00:00:00

  • Inhaler usability of a pressurized metered dose inhaler and a soft mist inhaler in patients with COPD: A simulated-use study.

    abstract::The objective of this study was to evaluate task performance and handling errors with soft mist inhalers (SMIs) or pressurized metered-dose inhalers (pMDIs) among patients with chronic obstructive pulmonary disease (COPD) experienced with, but not recently trained in, using these devices. This exploratory, noninterven...

    journal_title:Chronic respiratory disease

    pub_type: 杂志文章,多中心研究

    doi:10.1177/1479972318787914

    authors: Ding B,Siddiqui S,DePietro M,Petersson G,Martin UJ

    更新日期:2019-01-01 00:00:00

  • Clinical effects of cognitive impairment in patients with chronic obstructive pulmonary disease.

    abstract::The aim of this study was to evaluate the clinical effects of cognitive impairment in patients with chronic obstructive pulmonary disease (COPD). A total of 91 patients with stable moderate to very severe COPD were included in this study. Cognitive functions of the patients were evaluated using the mini-mental state e...

    journal_title:Chronic respiratory disease

    pub_type: 杂志文章

    doi:10.1177/1479972317743757

    authors: Yazar EE,Aydin S,Gunluoglu G,Kamat S,Gungen AC,Yildiz P

    更新日期:2018-08-01 00:00:00

  • Dyspnea-related anxiety: The Dutch version of the Breathlessness Beliefs Questionnaire.

    abstract::Dyspnea-related anxiety may lead to reduced quality of life and functional disability through fearful avoidance of dyspnea-evoking activity. We describe the validation of a generic - diagnosis-independent - instrument assessing dyspnea-related anxiety. A total of 187 patients with respiratory diseases completed the Br...

    journal_title:Chronic respiratory disease

    pub_type: 杂志文章

    doi:10.1177/1479972310383592

    authors: De Peuter S,Janssens T,Van Diest I,Stans L,Troosters T,Decramer M,Van den Bergh O,Vlaeyen JW

    更新日期:2011-01-01 00:00:00

  • Withholding and withdrawing life prolonging treatment in the intensive care unit: a current European perspective.

    abstract:BACKGROUND:Many deaths are now preceded by an end of life decision, particularly in the intensive care unit (ICU), but such practices vary considerably between countries, ICUs and individuals, depending on many factors including cultural and religious background, family and peer pressure and local practice. AIMS:In th...

    journal_title:Chronic respiratory disease

    pub_type: 杂志文章,评审

    doi:10.1191/1479972304cd021rs

    authors: Vincent JL,Berré J,Creteur J

    更新日期:2004-01-01 00:00:00

  • Fatigue in COPD: prevalence and effect on outcomes in pulmonary rehabilitation.

    abstract::Patients with chronic obstructive pulmonary disease (COPD) complain of dyspnea and fatigue. We sought to estimate the prevalence of high fatigue in this population and to determine whether individuals with high fatigue had a different response to pulmonary rehabilitation. This observational study was embedded within a...

    journal_title:Chronic respiratory disease

    pub_type: 杂志文章

    doi:10.1177/1479972310396737

    authors: Baltzan MA,Scott AS,Wolkove N,Bailes S,Bernard S,Bourbeau J,Maltais F,Canadian COPD Pulmonary Rehabilitation Research Group.

    更新日期:2011-01-01 00:00:00

  • Is the sinonasal questionnaire a useful screening instrument for chronic sinonasal diseases in pulmonary clinics?

    abstract::Dixon and coworkers (Dixon AE, Sugar EA, Zinreich SJ, et al. Criteria to screen for chronic sinonasal disease. Chest 2009; 136: 1324-1332.) recently developed a five-item questionnaire for diagnosing chronic sinonasal disease in patients with asthma. Our study was designed to determine how frequently patients attendin...

    journal_title:Chronic respiratory disease

    pub_type: 杂志文章

    doi:10.1177/1479972313485457

    authors: Ussavarungsi K,Limsuwat C,Berdine G,Nugent K

    更新日期:2013-05-01 00:00:00

  • Relationship between environmental exposures in children and adult lung disease: the case for outdoor exposures.

    abstract::There is a growing understanding that chronic respiratory diseases in adults have their origins in early life. Adverse environmental exposures occurring in vulnerable periods during lung growth and development in the fetal period and in early childhood that alter lung structure and limit the growth in lung function ma...

    journal_title:Chronic respiratory disease

    pub_type: 杂志文章,评审

    doi:10.1177/1479972309345929

    authors: Soto-Martinez M,Sly PD

    更新日期:2010-08-01 00:00:00

  • Clinical-effectiveness of self-management interventions in chronic obstructive pulmonary disease: An overview of reviews.

    abstract::Self-management (SM) is defined as the provision of interventions to increase patients' skills and confidence, empowering the individual to take an active part in their disease management. There is uncertainty regarding the optimal format and the short- and long-term benefits of chronic obstructive pulmonary disease (...

    journal_title:Chronic respiratory disease

    pub_type: 杂志文章,评审

    doi:10.1177/1479972316687208

    authors: Murphy LA,Harrington P,Taylor SJ,Teljeur C,Smith SM,Pinnock H,Ryan M

    更新日期:2017-08-01 00:00:00

  • Factors associated with a shorter time until the next pulmonary exacerbation in adult patients with cystic fibrosis.

    abstract::Time until the subsequent exacerbation (PEx) in cystic fibrosis (CF) is a significant health outcome and one of the significant end points in clinical trials. Risk factors associated with shorter time until the next exacerbation (TUNE) have not been reported. This is a prospective study. TUNE was the number of days fr...

    journal_title:Chronic respiratory disease

    pub_type: 杂志文章

    doi:10.1177/1479972311433575

    authors: Sequeiros IM,Jarad N

    更新日期:2012-02-01 00:00:00

  • A psychological intervention for smoking cessation delivered as treatment for smokers with chronic obstructive pulmonary disease: Multiple needs of a complex group and recommendations for novel service development.

    abstract::This pilot study investigated the benefits of adjunctive psychological intervention for smokers accessing standard smoking cessation interventions. Chronic obstructive pulmonary disease (COPD) smokers attending a smoking cessation service were offered up to 12 adjunctive clinical psychology sessions. Baseline data inc...

    journal_title:Chronic respiratory disease

    pub_type: 杂志文章

    doi:10.1177/1479972315586198

    authors: Yap SY,Lunn S,Pang E,Croft C,Stern M

    更新日期:2015-08-01 00:00:00

  • Breathing intensity and word use in individuals with COPD.

    abstract::Shifts in natural or spontaneous language have been reported with psychological and physical changes, as well as shifts in predetermined words selected to describe dyspnea. Less evidence exists for natural language shifts and breathing intensity, particularly for everyday life and for negative emotion. Therefore, this...

    journal_title:Chronic respiratory disease

    pub_type: 杂志文章

    doi:10.1177/1479972308096710

    authors: Michaels C,Meek PM,Dedkhard S

    更新日期:2008-01-01 00:00:00

  • Can a chronic disease management pulmonary rehabilitation program for COPD reduce acute rural hospital utilization?

    abstract::Chronic obstructive pulmonary disease (COPD) imposes a costly burden on healthcare. Pulmonary rehabilitation (PR) is the best practice to better manage COPD to improve patient outcomes and reduce acute hospital care utilization. To evaluate the impact of a once-weekly, eight-week multidisciplinary PR program as an int...

    journal_title:Chronic respiratory disease

    pub_type: 杂志文章

    doi:10.1177/1479972309104419

    authors: Rasekaba TM,Williams E,Hsu-Hage B

    更新日期:2009-01-01 00:00:00

  • Oral prednisolone for 4 days does not increase exercise tolerance in men with COPD.

    abstract::One of the primary objectives in management of chronic obstructive pulmonary disease (COPD) is preventing decrease in lung function and reducing the annual number of acute exacerbations of COPD (AECOPD). An oral course of systemic corticosteroids is a commonly used treatment in AECOPD. We hypothesize that this treatme...

    journal_title:Chronic respiratory disease

    pub_type: 信件,随机对照试验

    doi:10.1177/1479972317721929

    authors: Karlsson SL,Backer V,Godtfredsen NS

    更新日期:2018-05-01 00:00:00

  • The effect of continuous positive airway pressure on metabolic variables in patients with obstructive sleep apnoea.

    abstract::Obstructive sleep apnoea (OSA) is increasingly considered as a risk factor for metabolic disturbances, such as diabetes mellitus or dyslipidaemia. Continuous positive airway pressure (CPAP) therapy, the standard treatment for patients with OSA, may improve various metabolic variables, such as insulin sensitivity, gluc...

    journal_title:Chronic respiratory disease

    pub_type: 杂志文章,评审

    doi:10.1177/1479972313516882

    authors: Schlatzer C,Schwarz EI,Kohler M

    更新日期:2014-02-01 00:00:00

  • Systemic comorbidities in bronchiectasis.

    abstract::Bronchiectasis is a chronic inflammatory lung disease, which has similarities to chronic obstructive pulmonary disease (COPD). Comorbidities of COPD include increased risk of cardiovascular (CV) disease, loss of bone mineral density (BMD) and loss of skeletal muscle mass and function, all linked to systemic inflammati...

    journal_title:Chronic respiratory disease

    pub_type: 杂志文章

    doi:10.1177/1479972312459973

    authors: Gale NS,Bolton CE,Duckers JM,Enright S,Cockcroft JR,Shale DJ

    更新日期:2012-01-01 00:00:00

  • Monocyte count and the risk for acute exacerbation of fibrosing interstitial lung disease: A retrospective cohort study.

    abstract::Recent studies have suggested that an increased peripheral monocyte count predicts a poor outcome in fibrosing interstitial lung disease (ILD). However, the association between an increased monocyte count and acute exacerbations (AEs) of fibrosing ILD remains to be elucidated. Our retrospective cohort study aimed to a...

    journal_title:Chronic respiratory disease

    pub_type: 杂志文章

    doi:10.1177/1479973120909840

    authors: Kawamura K,Ichikado K,Anan K,Yasuda Y,Sekido Y,Suga M,Ichiyasu H,Sakagami T

    更新日期:2020-01-01 00:00:00

  • Prognostic value of forced expiratory volume in 1 second/forced vital capacity in idiopathic pulmonary fibrosis.

    abstract::Emphysema on high-resolution computed tomography of the chest is the recent focus in the general practice in idiopathic pulmonary fibrosis (IPF). However, adequate attention has not been paid to obstructive disorder. Therefore, we retrospectively evaluated the association between the degree of airway obstruction and l...

    journal_title:Chronic respiratory disease

    pub_type: 杂志文章

    doi:10.1177/1479972315603714

    authors: Nishiyama O,Yamazaki R,Sano A,Yamagata T,Sano H,Iwanaga T,Higashimoto Y,Kume H,Tohda Y

    更新日期:2016-02-01 00:00:00

  • Body mass index and chronic airflow limitation in a worldwide population-based study.

    abstract::Nutritional status has been associated with clinical outcome in chronic airflow limitation (CAL), but epidemiological studies are scarce. We aimed to assess the relationship between body mass index (BMI) and CAL, taking into account confounding factors. 18,606 participants (49% male, 21% smokers, mean age: 55.8 ± 11.2...

    journal_title:Chronic respiratory disease

    pub_type: 杂志文章

    doi:10.1177/1479972315626012

    authors: Vanfleteren LE,Lamprecht B,Studnicka M,Kaiser B,Gnatiuc L,Burney P,Wouters EF,Franssen FM

    更新日期:2016-05-01 00:00:00