Performance of the Patient-Reported Outcomes Measurement Information System-29 in scleroderma: A Scleroderma Patient-centered Intervention Network Cohort Study

on behalf of the SPIN Investigators

Research output: Contribution to journalArticle

Abstract

Objective. The Patient-Reported Outcomes Measurement Information System (PROMIS)-29 assesses seven health-related quality of life domains plus pain intensity. The objective was to examine PROMIS-29v 2 validity and explore clinical associations in patients with SSc. Methods. English-speaking SSc patients in the Scleroderma Patient-centered Intervention Network Cohort from 26 sites in Canada, the USA and the UK completed the PROMIS-29v 2 between July 2014 and November 2015. Enrolling physicians provided medical data. To examine convergent validity, hypotheses on the direction and magnitude of correlations with legacy measures were tested. For clinical associations, t-tests were conducted for dichotomous variables and PROMIS-29v 2 domain scores. Effect sizes (ESs) were labelled as small (<0.25), small to moderate (0.25-0.45), moderate (0.46-0.55), moderate to large (0.56-0.75) and large (>0.75).Results. There were 696 patients (87% female), mean (s.d.) disease duration 11.6 (8.7) years, 57% with limited cutaneous subtype. Validity indices were consistent with seven of nine hypotheses (|r| =0.51-0.87, P < 0.001), with minor divergence for two hypotheses. Gastrointestinal involvement was associated with significantly worse outcomes for all eight PROMIS-29v 2 domains (moderate or moderate to large ES in six of eight). Presence of joint contractures was associated with significant decrements in seven domains (small or small to moderate ESs). Skin thickening, diffuse cutaneous subtype and presence of overlap syndromes were significantly associated (small or small to moderate ESs) with five or six domains. Conclusion. This study further establishes the validity of the PROMIS-29v2 in SSc and underlines the importance of gastrointestinal symptoms and joint contractures in reduced health-related quality of life.

Original languageEnglish (US)
Pages (from-to)1302-1311
Number of pages10
JournalRheumatology (United Kingdom)
Volume56
Issue number8
DOIs
StatePublished - Aug 1 2017

Fingerprint

Information Systems
Cohort Studies
Contracture
Skin
Joints
Quality of Life
Canada
Patient Reported Outcome Measures
Physicians
Pain

Keywords

  • Clinical
  • PROMIS
  • Quality of life
  • Systemic sclerosis
  • Validation

ASJC Scopus subject areas

  • Rheumatology
  • Pharmacology (medical)

Cite this

Performance of the Patient-Reported Outcomes Measurement Information System-29 in scleroderma : A Scleroderma Patient-centered Intervention Network Cohort Study. / on behalf of the SPIN Investigators.

In: Rheumatology (United Kingdom), Vol. 56, No. 8, 01.08.2017, p. 1302-1311.

Research output: Contribution to journalArticle

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title = "Performance of the Patient-Reported Outcomes Measurement Information System-29 in scleroderma: A Scleroderma Patient-centered Intervention Network Cohort Study",
abstract = "Objective. The Patient-Reported Outcomes Measurement Information System (PROMIS)-29 assesses seven health-related quality of life domains plus pain intensity. The objective was to examine PROMIS-29v 2 validity and explore clinical associations in patients with SSc. Methods. English-speaking SSc patients in the Scleroderma Patient-centered Intervention Network Cohort from 26 sites in Canada, the USA and the UK completed the PROMIS-29v 2 between July 2014 and November 2015. Enrolling physicians provided medical data. To examine convergent validity, hypotheses on the direction and magnitude of correlations with legacy measures were tested. For clinical associations, t-tests were conducted for dichotomous variables and PROMIS-29v 2 domain scores. Effect sizes (ESs) were labelled as small (<0.25), small to moderate (0.25-0.45), moderate (0.46-0.55), moderate to large (0.56-0.75) and large (>0.75).Results. There were 696 patients (87{\%} female), mean (s.d.) disease duration 11.6 (8.7) years, 57{\%} with limited cutaneous subtype. Validity indices were consistent with seven of nine hypotheses (|r| =0.51-0.87, P < 0.001), with minor divergence for two hypotheses. Gastrointestinal involvement was associated with significantly worse outcomes for all eight PROMIS-29v 2 domains (moderate or moderate to large ES in six of eight). Presence of joint contractures was associated with significant decrements in seven domains (small or small to moderate ESs). Skin thickening, diffuse cutaneous subtype and presence of overlap syndromes were significantly associated (small or small to moderate ESs) with five or six domains. Conclusion. This study further establishes the validity of the PROMIS-29v2 in SSc and underlines the importance of gastrointestinal symptoms and joint contractures in reduced health-related quality of life.",
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author = "{on behalf of the SPIN Investigators} and Linda Kwakkenbos and Thombs, {Brett D.} and Dinesh Khanna and Carrier, {Marie Eve} and Murray Baron and Furst, {Daniel E.} and Karen Gottesman and {Van Den Hoogen}, Frank and Malcarne, {Vanessa L.} and Mayes, {Maureen D.} and Luc Mouthon and Nielson, {Warren R.} and Serge Poiraudeau and Robert Riggs and Maureen Sauv{\'e} and Fredrick Wigley and Marie Hudson and Bartlett, {Susan J.}",
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T1 - Performance of the Patient-Reported Outcomes Measurement Information System-29 in scleroderma

T2 - A Scleroderma Patient-centered Intervention Network Cohort Study

AU - on behalf of the SPIN Investigators

AU - Kwakkenbos, Linda

AU - Thombs, Brett D.

AU - Khanna, Dinesh

AU - Carrier, Marie Eve

AU - Baron, Murray

AU - Furst, Daniel E.

AU - Gottesman, Karen

AU - Van Den Hoogen, Frank

AU - Malcarne, Vanessa L.

AU - Mayes, Maureen D.

AU - Mouthon, Luc

AU - Nielson, Warren R.

AU - Poiraudeau, Serge

AU - Riggs, Robert

AU - Sauvé, Maureen

AU - Wigley, Fredrick

AU - Hudson, Marie

AU - Bartlett, Susan J.

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N2 - Objective. The Patient-Reported Outcomes Measurement Information System (PROMIS)-29 assesses seven health-related quality of life domains plus pain intensity. The objective was to examine PROMIS-29v 2 validity and explore clinical associations in patients with SSc. Methods. English-speaking SSc patients in the Scleroderma Patient-centered Intervention Network Cohort from 26 sites in Canada, the USA and the UK completed the PROMIS-29v 2 between July 2014 and November 2015. Enrolling physicians provided medical data. To examine convergent validity, hypotheses on the direction and magnitude of correlations with legacy measures were tested. For clinical associations, t-tests were conducted for dichotomous variables and PROMIS-29v 2 domain scores. Effect sizes (ESs) were labelled as small (<0.25), small to moderate (0.25-0.45), moderate (0.46-0.55), moderate to large (0.56-0.75) and large (>0.75).Results. There were 696 patients (87% female), mean (s.d.) disease duration 11.6 (8.7) years, 57% with limited cutaneous subtype. Validity indices were consistent with seven of nine hypotheses (|r| =0.51-0.87, P < 0.001), with minor divergence for two hypotheses. Gastrointestinal involvement was associated with significantly worse outcomes for all eight PROMIS-29v 2 domains (moderate or moderate to large ES in six of eight). Presence of joint contractures was associated with significant decrements in seven domains (small or small to moderate ESs). Skin thickening, diffuse cutaneous subtype and presence of overlap syndromes were significantly associated (small or small to moderate ESs) with five or six domains. Conclusion. This study further establishes the validity of the PROMIS-29v2 in SSc and underlines the importance of gastrointestinal symptoms and joint contractures in reduced health-related quality of life.

AB - Objective. The Patient-Reported Outcomes Measurement Information System (PROMIS)-29 assesses seven health-related quality of life domains plus pain intensity. The objective was to examine PROMIS-29v 2 validity and explore clinical associations in patients with SSc. Methods. English-speaking SSc patients in the Scleroderma Patient-centered Intervention Network Cohort from 26 sites in Canada, the USA and the UK completed the PROMIS-29v 2 between July 2014 and November 2015. Enrolling physicians provided medical data. To examine convergent validity, hypotheses on the direction and magnitude of correlations with legacy measures were tested. For clinical associations, t-tests were conducted for dichotomous variables and PROMIS-29v 2 domain scores. Effect sizes (ESs) were labelled as small (<0.25), small to moderate (0.25-0.45), moderate (0.46-0.55), moderate to large (0.56-0.75) and large (>0.75).Results. There were 696 patients (87% female), mean (s.d.) disease duration 11.6 (8.7) years, 57% with limited cutaneous subtype. Validity indices were consistent with seven of nine hypotheses (|r| =0.51-0.87, P < 0.001), with minor divergence for two hypotheses. Gastrointestinal involvement was associated with significantly worse outcomes for all eight PROMIS-29v 2 domains (moderate or moderate to large ES in six of eight). Presence of joint contractures was associated with significant decrements in seven domains (small or small to moderate ESs). Skin thickening, diffuse cutaneous subtype and presence of overlap syndromes were significantly associated (small or small to moderate ESs) with five or six domains. Conclusion. This study further establishes the validity of the PROMIS-29v2 in SSc and underlines the importance of gastrointestinal symptoms and joint contractures in reduced health-related quality of life.

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