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

Abbott, Janice

doi:10.1177/1479972308098159

Cited by 23 publications

(28 citation statements)

References 110 publications

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“…The high HRQoL scores reported by CF patients are a common finding in many studies (17). We found that the differences in CFQ domain scores were influenced by age.…”

Section: Discussionsupporting

confidence: 49%

Health-Related Quality of Life and Psychological Distress in Italian Patients With Cystic Fibrosis

et al. 2015

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Objective -The aim of this paper is to describe the health related quality of life (HRQoL) in an unselected hospital-based cohort of patients with Cystic fibrosis (CF), and to explore the association between HRQoL and psychological status. Study design -115 patients with CF (47 children, 26 adolescents and 42 adults) attending the Bambino Gesù Pediatric Hospital in Rome, Italy, were recruited. HRQoL was measured through the Cystic Fibrosis Questionnaire (CFQ), child and adult versions. The Youth Self Report Form and the General Health Questionnaire were used to screen for psychological distress in patients aged below and above 18 respectively. Multivariable logistic regression analysis was performed to explore the relationship between CFQ scores and psychological distress, adjusting for socio-demographic and clinical variables. Results -HRQoL was high, except for Social Limitations, Energy/Wellbeing and Treatment Constraints. Twenty-eight patients (24.4%) scored positive for psychological distress. HRQoL scores below median for Symptoms, Body Image and Social Limitations, and unemployment were significantly associated with the presence of psychological distress, while age, screening-based diagnosis, gender and medical factors were not. Conclusions -Screening for psychological distress should be part of routine management of patients with CF. Opportunities for age-appropriate socialization, work and leisure time should be allowed and encouraged.

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“…The high HRQoL scores reported by CF patients are a common finding in many studies (17). We found that the differences in CFQ domain scores were influenced by age.…”

Section: Discussionsupporting

confidence: 49%

Health-Related Quality of Life and Psychological Distress in Italian Patients With Cystic Fibrosis

et al. 2015

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“…Therefore, HRQOL measurement can provide added value because it can supply information not captured by other outcome measures. HRQOL may be informative not only as an efficacy measure, but it also potentially reflects safety issues, and for these reasons HRQOL is becoming important in labeling claims 6, 7.…”

Section: Introductionmentioning

confidence: 99%

Sensitivity to Change and Minimal Important Differences of the LupusQoL in Patients With Systemic Lupus Erythematosus

McElhone

Abbott

Sutton

et al. 2016

Arthritis Care & Research

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ObjectiveAs a health‐related quality of life (HRQOL) measure, the LupusQoL is a reliable and valid measure for adults with systemic lupus erythematosus (SLE). This study evaluates the responsiveness and minimal important differences (MIDs) for the 8 LupusQoL domains.MethodsPatients experiencing a flare were recruited from 9 UK centers. At each of the 10 monthly visits, HRQOL (LupusQoL, Short Form 36 health survey [SF‐36]), global rating of change (GRC), and disease activity using the British Isles Lupus Assessment Group 2004 index were assessed. The responsiveness of the LupusQoL and the SF‐36 was evaluated primarily when patients reported an improvement or deterioration on the GRC scale and additionally with changes in physician‐reported disease activity. MIDs were estimated as mean changes when minimal change was reported on the GRC scale.ResultsA total of 101 patients were recruited. For all LupusQoL domains, mean HRQOL worsened when patients reported deterioration and improved when patients reported an improvement in GRC; SF‐36 domains showed comparable responsiveness. Improvement in some domains of the LupusQoL/SF‐36 was observed with a decrease in disease activity, but when disease activity worsened, there was no significant change. LupusQoL MID estimates for deterioration ranged from −2.4 to −8.7, and for improvement from 3.5 to 7.3; for the SF‐36, the same MID estimates were −2.0 to −11.1 and 2.8 to 10.9, respectively.ConclusionAll LupusQoL domains are sensitive to change with patient‐reported deterioration or improvement in health status. For disease activity, some LupusQoL domains showed responsiveness when there was improvement but none for deterioration. LupusQoL items were derived from SLE patients and provide the advantage of disease‐specific domains, important to the patients, not captured by the SF‐36.

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“…physical, social and psychological functioning, respiratory symptoms, treatment burden and body image)' . 210 To populate a model of CF and CFRD that allows us to evaluate the clinical effectiveness and cost-effectiveness of screening for CFRD, we ideally need: ■ Data on QoL over the lifetime of CF in patients who do not develop CFRD. We would expect a decline in QoL over the decades.…”

Section: Quality-of-life Studies In Cystic Fibrosis and Cystic Fibrosmentioning

confidence: 99%

Screening for cystic fibrosis-related diabetes: a systematic review.

Waugh

Royle²,

Craigie³

et al. 2012

Health Technol Assess

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

Cited by 23 publications

References 110 publications

Health-Related Quality of Life and Psychological Distress in Italian Patients With Cystic Fibrosis

Health-Related Quality of Life and Psychological Distress in Italian Patients With Cystic Fibrosis

Sensitivity to Change and Minimal Important Differences of the LupusQoL in Patients With Systemic Lupus Erythematosus

Screening for cystic fibrosis-related diabetes: a systematic review.

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