Development of the ATAQ-IPF: a tool to assess quality of life in IPF

<p>Abstract</p> <p>Background</p> <p>There is no disease-specific instrument to assess health-related quality of life (HRQL) in patients with idiopathic pulmonary fibrosis (IPF).</p> <p>Methods</p> <p>Patients' perspectives were collected to develop domains and items for an IPF-specific HRQL instrument. We used item variance and Rasch analysis to construct the ATAQ-IPF (A Tool to Assess Quality of life in IPF).</p> <p>Results</p> <p>The ATAQ-IPF version 1 is composed of 74 items comprising 13 domains. All items fit the Rasch model. Domains and the total instrument possess acceptable psychometric characteristics for a multidimensional questionnaire. The pattern of correlations between ATAQ-IPF scores and physiologic variables known to be important in IPF, along with significant differences in ATAQ-IPF scores between subjects using versus those not using supplemental oxygen, support its validity.</p> <p>Conclusions</p> <p>Patient-centered and careful statistical methodologies were used to construct the ATAQ-IPF version 1, an IPF-specific HRQL instrument. Simple summation scoring is used to derive individual domain scores as well as a total score. Results support the validity of the ATAQ-IPF, and future studies will build on that validity.</p

Patients\u27 Perceptions and Patient-Reported Outcomes in Progressive-Fibrosing Interstitial Lung Diseases

The effects of interstitial lung disease (ILD) create a significant burden on patients, unsettling almost every domain of their lives, disrupting their physical and emotional well-being and impairing their quality of life (QoL). Because many ILDs are incurable, and there are limited reliably-effective, life-prolonging treatment options available, the focus of many therapeutic interventions has been on improving or maintaining how patients with ILD feel and function, and by extension, their QoL. Such patient-centred outcomes are best assessed by patients themselves through tools that capture their perceptions, which inherently incorporate their values and judgements. These patient-reported outcome measures (PROs) can be used to assess an array of constructs affected by a disease or the interventions implemented to treat it. Here, we review the impact of ILD that may present with a progressive-fibrosing phenotype on patients\u27 lives and examine how PROs have been used to measure that impact and the effectiveness of therapeutic interventions

Patients\u27 perceptions and patient-reported outcomes in progressive-fibrosing interstitial lung diseases

The effects of interstitial lung disease (ILD) create a significant burden on patients, unsettling almost every domain of their lives, disrupting their physical and emotional well-being and impairing their quality of life (QoL). Because many ILDs are incurable, and there are limited reliably-effective, life-prolonging treatment options available, the focus of many therapeutic interventions has been on improving or maintaining how patients with ILD feel and function, and by extension, their QoL. Such patient-centred outcomes are best assessed by patients themselves through tools that capture their perceptions, which inherently incorporate their values and judgements. These patient-reported outcome measures (PROs) can be used to assess an array of constructs affected by a disease or the interventions implemented to treat it. Here, we review the impact of ILD that may present with a progressive-fibrosing phenotype on patients\u27 lives and examine how PROs have been used to measure that impact and the effectiveness of therapeutic interventions

Patients\u27 Perceptions and Patient-Reported Outcomes in Progressive-Fibrosing Interstitial Lung Diseases

The effects of interstitial lung disease (ILD) create a significant burden on patients, unsettling almost every domain of their lives, disrupting their physical and emotional well-being and impairing their quality of life (QoL). Because many ILDs are incurable, and there are limited reliably-effective, life-prolonging treatment options available, the focus of many therapeutic interventions has been on improving or maintaining how patients with ILD feel and function, and by extension, their QoL. Such patient-centred outcomes are best assessed by patients themselves through tools that capture their perceptions, which inherently incorporate their values and judgements. These patient-reported outcome measures (PROs) can be used to assess an array of constructs affected by a disease or the interventions implemented to treat it. Here, we review the impact of ILD that may present with a progressive-fibrosing phenotype on patients\u27 lives and examine how PROs have been used to measure that impact and the effectiveness of therapeutic interventions

Gender influences health-related Quality of Life in IPF

Disclosure statements Dr. Han has received research support from the NIH. Dr. Bartholmai has received research support from the NIH and GlaxoSmithKline. Dr. Murray has received research support from the NIH. Dr. Giardino has received research support from the VAHS. Dr. Flaherty has received research support from Intermune and the NIH, consulting honorarium from GlaxoSmithKline and is a member of advisory boards for Boehringer Ingelheim and Gilead. Dr. Thompson has received research support from the NIH. Dr. Frederick has received research support from the NIH. Ms. Li has received research support from the NIH. Dr. Schwarz has received research support from the NIH. Dr. Limper received consulting fees and a research grant from Novartis and has received research support from the NIH. Dr. Martinez is a member of a steering committee for Actelion, Gilead, Centocor, and Genzyme and has received research support from Actelion and the NIH.Background HRQL in IPF patients is impaired. Data from other respiratory diseases led us to hypothesize that significant gender differences in HRQL in IPF also exist. Methods Data were drawn from the NIH-sponsored Lung Tissue Research Consortium (LTRC). Demographic and pulmonary physiology data along with MMRC, SF-12, and SGRQ scores from women vs. men were compared with two-sample t-tests. Multivariate linear regression was used to examine the association between SF-12 component scores and gender while adjusting for other relevant variables. Results The study sample consisted of 147 men and 74 women. Among several baseline variables, only DLCO% predicted differed between women and men, (43.7 vs. 38.0, p = 0.03). In general, men exhibited lower (better) MMRC scores (1.7 vs. 2.4, p = 0.02), particularly those with milder disease as measured by DLCO% predicted. In an adjusted analysis, SF-12 PCS scores in men were lower (worse) than women (p = 0.01), an effect that was more pronounced in men with greater dyspnea scores. In a similar analysis, SF-12 MCS scores in women were lower than men (worse) (48.3 vs. 54.4, p = 0.0004), an effect that was more pronounced in women with greater dyspnea scores. Conclusions Significant gender differences in HRQL exist in IPF. As compared to women, men reported less severe dyspnea, had worse SF-12 PCS scores, but better SF-12 MCS scores. Dyspnea appears to have a greater impact on the physical HRQL of men and the emotional HRQL of women. An improved understanding of the mechanism behind these differences is needed to better target interventions.This work is supported by the Lung Tissue Research Consortium (N01 HR46158 (Bartholmai), N01 HR46160 (Schwarz), N01 HR46161 (Limper), N01 HR46162 (Han, Martinez), N01 HR46164 (Li, Frederick, Thompson), KL2 RR024987 (Han), K24 HL04212 (Martinez).Peer Reviewedhttp://deepblue.lib.umich.edu/bitstream/2027.42/91956/1/2010 Respiratory Medicine - Gender Influences health-related Quality of Life in IPF.pd