Multicenter Study

. 2017 Aug 1;56(8):1302-1311.

doi: 10.1093/rheumatology/kex055.

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

Linda Kwakkenbos^{1

2

3}, Brett D Thombs^{1

2

4

5

6

7

8}, Dinesh Khanna⁹, Marie-Eve Carrier¹, Murray Baron^{1

4}, Daniel E Furst¹⁰, Karen Gottesman¹¹, Frank van den Hoogen^{12

13}, Vanessa L Malcarne^{14

15}, Maureen D Mayes¹⁶, Luc Mouthon^{17

18}, Warren R Nielson^{19

20}, Serge Poiraudeau^{17

21

22}, Robert Riggs¹¹, Maureen Sauvé^{23

24}, Fredrick Wigley²⁵, Marie Hudson^{1

4}, Susan J Bartlett^{4

25

26}; SPIN Investigators

Collaborators, Affiliations

Collaborators

SPIN Investigators:
Shervin Assassi, Isabelle Boutron, Angela Costa Maia, Ghassan El-Baalbaki, Carolyn Ells, Cornelia van den Ende, Kim Fligelstone, Catherine Fortune, Tracy Frech, Dominique Godard, Daphna Harel, Marie Hudson, Ann Impens, Yeona Jang, Sindhu R Johnson, Ann Tyrell Kennedy, Maggie Larche, Catarina Leite, Carlo Marra, Karen Nielsen, Janet L Poole, Janet Pope, Alexandra Portales, Tatiana Sofia Rodriguez Reyna, Anne A Schouffoer, Russell J Steele, Maria E Suarez-Almazor, Joep Welling, Durhane Wong-Rieger, Alexandra Albert, Guylaine Arsenault, Lyne Bissonnette, Gilles Boire, Alessandra Bruns, Patricia Carreira, Lorinda Chung, Pierre Dagenais, Christopher Denton, Robyn Domsic, James V Dunne, Paul Fortin, Anna Gill, Jessica Gordon, Genevieve Gyger, Ariane L Herrick, Monique Hinchcliff, Alena Ikic, Niall Jones, Artur Jose de B Fernandes, Suzanne Kafaja, Nader Khalidi, Benjamin Korman, Patrick Liang, Joanne Manning, Ariel Masetto, David Robinson, Sophie Roux, Elena Schiopu, Doug Smith, Robert Spiera, Virginia Steen, Evelyn Sutton, Carter Thorne, John Varga, Pearce Wilcox, Vanessa C Delisle, Claire Fedoruk, Rina S Fox, Shadi Gholizadeh, Lisa R Jewett, Brooke Levis, Sarah D Mills, Mia R Pepin, Jennifer Persmann

Affiliations

¹ Lady Davis Institute for Medical Research, Jewish General Hospital.
² Department of Psychiatry, McGill University, Montréal, Québec, Canada.
³ Clinical Psychology, Behavioural Science Institute, Radboud University, Nijmegen, the Netherlands.
⁴ Department of Medicine, McGill UniversityMontréal, Québec, Canada.
⁵ Department of Epidemiology, Biostatistics, and Occupational HealthMcGill University, Montréal, Québec, Canada.
⁶ Department of Educational and Counselling PsychologyMcGill University, Montréal, Québec, Canada.
⁷ Department of PsychologyMcGill University, Montréal, Québec, Canada.
⁸ School of Nursing, McGill University, Montréal, Québec, Canada.
⁹ University of Michigan Scleroderma Program, University of Michigan, Ann Arbor, Michigan, USA.
¹⁰ Division of Rheumatology, Geffen School of Medicine, University of California, Los Angeles.
¹¹ Scleroderma Foundation, Danvers, MA, USA.
¹² Department of Rheumatology, Radboud University Medical Center.
¹³ Department of Rheumatology, Sint Maartenskliniek, Nijmegen, The Netherlands.
¹⁴ Department of Psychology, San Diego State University.
¹⁵ San Diego Joint Doctoral Program in Clinical Psychology, San Diego State University and the University of California, San Diego, CA.
¹⁶ Department of Internal Medicine, Division of Rheumatology, McGovern Medical School, University of Texas, Houston, TX, USA.
¹⁷ Université Paris Descartes, Assistance Publique-Hôpitaux de Paris.
¹⁸ Service de Médecine Interne, Hôpital Cochin, Paris, France.
¹⁹ Beryl & Richard Ivey Rheumatology Day Programs, St Joseph's Health Care.
²⁰ Lawson Health Research Institute, London, Ontario, Canada.
²¹ Service de Médecine Physique et Réadaptation, Hôpital Cochin.
²² IFR Handicap, INSERM, Paris, France.
²³ Scleroderma Society of Ontario, Hamilton.
²⁴ Scleroderma Society of Canada, Ottawa, ON, Canada.
²⁵ Department of Medicine, Division of Rheumatology, Johns Hopkins University School of Medicine, Baltimore, MD, USA.
²⁶ McGill University Health Center, Montréal, Québec, Canada.

PMID: 28431140
PMCID: PMC5850469
DOI: 10.1093/rheumatology/kex055

Multicenter Study

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

Linda Kwakkenbos et al. Rheumatology (Oxford). 2017.

. 2017 Aug 1;56(8):1302-1311.

doi: 10.1093/rheumatology/kex055.

Authors

Collaborators

SPIN Investigators:
Shervin Assassi, Isabelle Boutron, Angela Costa Maia, Ghassan El-Baalbaki, Carolyn Ells, Cornelia van den Ende, Kim Fligelstone, Catherine Fortune, Tracy Frech, Dominique Godard, Daphna Harel, Marie Hudson, Ann Impens, Yeona Jang, Sindhu R Johnson, Ann Tyrell Kennedy, Maggie Larche, Catarina Leite, Carlo Marra, Karen Nielsen, Janet L Poole, Janet Pope, Alexandra Portales, Tatiana Sofia Rodriguez Reyna, Anne A Schouffoer, Russell J Steele, Maria E Suarez-Almazor, Joep Welling, Durhane Wong-Rieger, Alexandra Albert, Guylaine Arsenault, Lyne Bissonnette, Gilles Boire, Alessandra Bruns, Patricia Carreira, Lorinda Chung, Pierre Dagenais, Christopher Denton, Robyn Domsic, James V Dunne, Paul Fortin, Anna Gill, Jessica Gordon, Genevieve Gyger, Ariane L Herrick, Monique Hinchcliff, Alena Ikic, Niall Jones, Artur Jose de B Fernandes, Suzanne Kafaja, Nader Khalidi, Benjamin Korman, Patrick Liang, Joanne Manning, Ariel Masetto, David Robinson, Sophie Roux, Elena Schiopu, Doug Smith, Robert Spiera, Virginia Steen, Evelyn Sutton, Carter Thorne, John Varga, Pearce Wilcox, Vanessa C Delisle, Claire Fedoruk, Rina S Fox, Shadi Gholizadeh, Lisa R Jewett, Brooke Levis, Sarah D Mills, Mia R Pepin, Jennifer Persmann

Affiliations

¹ Lady Davis Institute for Medical Research, Jewish General Hospital.
² Department of Psychiatry, McGill University, Montréal, Québec, Canada.
³ Clinical Psychology, Behavioural Science Institute, Radboud University, Nijmegen, the Netherlands.
⁴ Department of Medicine, McGill UniversityMontréal, Québec, Canada.
⁵ Department of Epidemiology, Biostatistics, and Occupational HealthMcGill University, Montréal, Québec, Canada.
⁶ Department of Educational and Counselling PsychologyMcGill University, Montréal, Québec, Canada.
⁷ Department of PsychologyMcGill University, Montréal, Québec, Canada.
⁸ School of Nursing, McGill University, Montréal, Québec, Canada.
⁹ University of Michigan Scleroderma Program, University of Michigan, Ann Arbor, Michigan, USA.
¹⁰ Division of Rheumatology, Geffen School of Medicine, University of California, Los Angeles.
¹¹ Scleroderma Foundation, Danvers, MA, USA.
¹² Department of Rheumatology, Radboud University Medical Center.
¹³ Department of Rheumatology, Sint Maartenskliniek, Nijmegen, The Netherlands.
¹⁴ Department of Psychology, San Diego State University.
¹⁵ San Diego Joint Doctoral Program in Clinical Psychology, San Diego State University and the University of California, San Diego, CA.
¹⁶ Department of Internal Medicine, Division of Rheumatology, McGovern Medical School, University of Texas, Houston, TX, USA.
¹⁷ Université Paris Descartes, Assistance Publique-Hôpitaux de Paris.
¹⁸ Service de Médecine Interne, Hôpital Cochin, Paris, France.
¹⁹ Beryl & Richard Ivey Rheumatology Day Programs, St Joseph's Health Care.
²⁰ Lawson Health Research Institute, London, Ontario, Canada.
²¹ Service de Médecine Physique et Réadaptation, Hôpital Cochin.
²² IFR Handicap, INSERM, Paris, France.
²³ Scleroderma Society of Ontario, Hamilton.
²⁴ Scleroderma Society of Canada, Ottawa, ON, Canada.
²⁵ Department of Medicine, Division of Rheumatology, Johns Hopkins University School of Medicine, Baltimore, MD, USA.
²⁶ McGill University Health Center, Montréal, Québec, Canada.

PMID: 28431140
PMCID: PMC5850469
DOI: 10.1093/rheumatology/kex055

Erratum in

Performance of the Patient-Reported Outcomes Measurement Information System-29 in scleroderma: a Scleroderma Patient-centered Intervention Network Cohort Study.
Kwakkenbos L, Thombs BD, Khanna D, Carrier ME, Baron M, Furst DE, Gottesman K, van den Hoogen F, Malcarne VL, Mayes MD, Mouthon L, Nielson WR, Poiraudeau S, Riggs R, Sauvé M, Wigley F, Hudson M, Bartlett SJ. Kwakkenbos L, et al. Rheumatology (Oxford). 2023 Nov 2;62(11):3771. doi: 10.1093/rheumatology/kez234. Rheumatology (Oxford). 2023. PMID: 31168593 Free PMC article. No abstract available.

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-29v2 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-29v2 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-29v2 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-29v2 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.

Keywords: PROMIS; clinical; quality of life; systemic sclerosis; validation.

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References

1. Seibold J. Scleroderma In: Harris ED, Budd RC, Firestein GS. et al., eds. Kelley's textbook of rheumatology. Vol. 2 7th edn Philadelphia: Elsevier; 2005: 1279–308.
1. Wigley FM, Hummers LK.. Clinical features of systemic sclerosis In: Hochberg MC, Silman AJ, Smolen JS. et al., eds. Rheumatology. 3rd edn Philadelphia: Mosby; 2003: 1463–80.
1. Merkel PA, Herlyn K, Martin RW. et al. Measuring disease activity and functional status in patients with scleroderma and Raynaud’s phenomenon. Arthritis Rheum 2002;46:2410–20. - PubMed
1. Ntoumazios SK, Voulgari PV, Potsis K. et al. Esophageal involvement in scleroderma: gastroesophageal reflux, the common problem. Semin Arthritis Rheum 2006;36:173–81. - PubMed
1. Thombs BD, van Lankveld W, Bassel M. et al. Psychological health and well-being in systemic sclerosis: state of the science and consensus research agenda. Arthritis Care Res 2010;62:1181–9. - PubMed

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

Collaborators

Affiliations

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

Authors

Collaborators

Affiliations

Erratum in

Abstract

References

Publication types

MeSH terms

Grants and funding

LinkOut - more resources

Full Text Sources

Other Literature Sources

Medical

Molecular Biology Databases