Publications 2019

PUBLISHED PEER-REVIEWED ARTICLES 2019

1. Harel D, Mills SD, Kwakkenbos L, Carrier M-E, Nielsen K, Portales A, Bartlett SJ, Malcarne VL, Thombs BD, SPIN Investigators. Shortening patient-reported outcome measures through Optimal Test Assembly: Application to the Social Appearance Anxiety Scale in the Scleroderma Patient-centered Intervention Network Cohort. BMJ Open. In press.

2. Rice DB, Cañedo-Ayala M, Carboni Jiménez A, Carrier M-E, Cumin J, Malcarne V, Hagedoorn M, Thombs BD, Scleroderma Caregiver Advisory Team. Challenges and support service preferences of informal caregivers of people with systemic sclerosis: A cross-sectional survey. Disabil Rehabil. In press.

3. Cañedo-Ayala M, Rice DB, Levis B, Carrier ME, Cumin J, Malcarne VL, Hagedoorn M, Thombs BD, Scleroderma Caregiver Advisory Committee. Sociodemographic and caregiving factors associated with symptoms of depression among informal caregivers of people living with systemic sclerosis. Disabil Rehabil. In press.

4. Milette K, Thombs BD, Maiorino K, Nielson WR, Körner A, Peláez S. Challenges and coping with scleroderma: implications for a scleroderma-specific self-management program. Disabil Rehabil. In press.

5. Delisle VC, Gumuchian ST, El-Baalbaki G, Körner A, Malcarne VL, Peláez S, Carrier M-E, Pépin M, Thombs BD, Scleroderma Support Group Project Advisory Team. Training and support needs of scleroderma support group facilitators: the North American Scleroderma Support Group Facilitators Survey. J Scleroderma Relat Disord. In press.

6. Gumuchian ST, Delisle VC, Kwakkenbos L, Pépin M, Carrier M-E, Malcarne CL, Peláez S, El-Baalbaki G, Thombs BD, Scleroderma Support Group Project Advisory Team. Reasons for attending support groups and organizational preferences: the European Scleroderma Support Group Members Survey. Disabil Rehabil. In press.

Publications 2017

PUBLISHED PEER-REVIEWED ARTICLES 2017

1. Jewett LR, Kwakkenbos L, Carrier M-E, Malcarne V, Harcourt D, Rumsey N, Mayes MD, Assassi S, Körner A, Fox RS, Gholizadeh S, Mills SD, Fortune C, Portales A, Thombs BD, SPIN Investigators. Validation of the Body Concealment Scale for Scleroderma (BCSS): Replication in the Scleroderma Patient-centered Intervention Network (SPIN) Cohort. Body Image. 2017;31(20):99-106.

2. Kwakkenbos L, Thombs BD, Khanna D, Carrier ME, Baron M, Furst D, Gottesman K, van den Hoogen FHJ, Malcarne VL, Mayes MD, Mouthon L, Nielson WR, Poiraudeau S, Riggs R, Sauvé M, Wigley F, Hudson M, Bartlett SJ, SPIN investigators. Validation of the Patient-Reported Outcomes Measurement Information System-29 (PROMIS-29) in Scleroderma and Associations with Clinical Characteristics: A Scleroderma Patient-centered Intervention Network (SPIN) Cohort Study. Rheumatology. 2017;56(8)1302-1311.

3. Delisle VC, Gumuchian ST, Rice DB, Levis AW, Kloda LA, Körner A, Thombs BD. Perceived benefits and factors that influence the ability to establish and maintain patient support groups in rare diseases: A scoping review. The Patient - Patient–Centered Outcomes Research. 2017;10(3):283-293.

4. Thombs BD, Kwakkenbos L, Riehm KE, Saadat N, Fedoruk C. Comparison of self-efficacy for managing chronic disease between patients with systemic sclerosis and other chronic conditions: systematic review. Rheumatol Int. 2017;37(2):281-292.

Publications 2016

PUBLISHED PEER-REVIEWED ARTICLES 2016

1. Jewett LR, Kwakkenbos L, Carrier M-E, Malcarne V, Harcourt D, Rumsey N, Mayes MD, Assassi S, Körner A, Fox RS, Gholizadeh S, Mills SD, Fortune C, Portales A, Thombs BD, SPIN Investigators. Validation of the Body Concealment Scale for Scleroderma (BCSS): Replication in the Scleroderma Patient-centered Intervention Network (SPIN) Cohort. Body Image. In press.

2. Kwakkenbos L, Thombs BD, Khanna D, Carrier ME, Baron M, Furst D, Gottesman K, van den Hoogen FHJ, Malcarne VL, Mayes MD, Mouthon L, Nielson WR, Poiraudeau S, Riggs R, Sauvé M, Wigley F, Hudson M, Bartlett SJ, SPIN investigators. Validation of the Patient-Reported Outcomes Measurement Information System-29 (PROMIS-29) in Scleroderma and Associations with Clinical Characteristics: A Scleroderma Patient-centered Intervention Network (SPIN) Cohort Study. Rheumatology. In press.    

3. Levis AW, Harel D, Kwakkenbos L, Carrier ME, Mouthon L, Poireadeau S, Bartlett SJ, Khanna D, Malcarne VL, Sauve M, van den Ende CH, Poole JL, Schouffoer AA, Welling J, Thombs BD, and the SPIN Investigators. Development and validation of the Cochin Hand Function Scale- Short Form (CHFS-6) using optimal test assembly methods: A Scleroderma Patient-centered Intervention Network (SPIN) Cohort study. Arthritis Care Res.

4. Jewett LR, Kwakkenbos L, Carrier ME, Malcarne VL, Bartlett SJ, Furst DE, Gottesman K, Mayes MM, Assassi S, Harcourt D, Williamson H, Johnson SR, Körner A, Steen V, Fox RS, Gholizadeh S, Mills SD, Molnar JC, Rice DB, Thombs BD. Examination of the association of sex and race/ethnicity with appearance concerns: a Scleroderma Patient-Centered Intervention (SPIN) Cohort Study. Clin Exp Rheum.

5. Gumuchian ST, Peláez S, Delisle VC, Carrier ME, Jewett LR, El-Baalbaki G, Fortune C, Hudson M, Impens A, Körner A, Persmann J, Kwakkenbos L, Bartlett SJ, Thombs BD. Exploring sources of emotional distress among people living with scleroderma: a focus group study. PLOS ONE.


6. Riehm KE, Kwakkenbos L, Carrier ME, Bartlett SJ, Malcarne VL, Mouthon L, Nielson WR, Poiraudeau S, Nielsen K, Baron M, Frech T, Hudson M, Pope J, Sauve M, Suarez-Almazor ME, Wigley FM, Thombs BD, and the SPIN Investigators. Validation of the Self-Efficacy for Managing Chronic Disease (SEMCD) Scale: A Scleroderma Patient-centered Intervention Network (SPIN) Cohort Study. Arthritis Care Res.

7. Delisle VC, Gumuchian ST, Kloda L, Boruff J, El-Baalbaki G, Körner A, Malcarne VL, Thombs BD*, Scleroderma Support Group Project Advisory Team. The effect of support group peer-facilitator training programs to improve peer-facilitator and support group member outcomes: A systematic review. BMJ Open.

8. Delisle VC, Gumuchian ST, Peláez S, Malcarne VL, El-Baalbaki G, Körner A, Hudson M, Baron M, Thombs BD. Reasons for non-participation in scleroderma support groups. Clin Exp Rheumatol

Publications 2013

PUBLISHED PEER-REVIEWED ARTICLES 2013

1.Kwakkenbos L, Jewett LR, Baron M, Bartlett SJ, Furst D, Gottesman K, Khanna D, Malcarne VL, Mayes MD, Mouthon L, Poiraudeau S, Sauve M, Nielson WR, Poole JL, Assassi S, Boutron I, Ells C, van den Ende CHM, Hudson M, Impens A, Körner A, Leite C, Costa Maia A, Mendelson C, Pope J, Steele RJ, Suarez-Almazor ME, Ahmed S, Coronado-Montoya S, Delisle VC, Gholizadeh S, Jang Y, Levis B, Milette K, Mills SD, Razykov I, Fox RS, Thombs BD. The Scleroderma Patient-centered Intervention Network (SPIN) Cohort: Protocol for a cohort multiple randomized controlled trial (cmRCT) design to support trials of psychosocial and rehabilitation interventions in a rare disease context. BMJ Open 2013;3:e003563 

Publications 2012

PUBLISHED PEER-REVIEWED ARTICLES 2012

1. Thombs BD, Jewett LR, Assassi S, Baron M, Bartlett S, Costa Maia A, El-Baalbaki G, Furst D, Gottesman K, Haythornthwaite JA, Hudson M, Impens A, Korner A, Leite C, Mayes MD, Malcarne VL, Motivala SJ, Mouthon L, Nielson WR, Plante D, Poiraudeau S, Poole JL, Pope J, Sauve M, Steele RJ, Suarez-Almazor ME, Taillefer S, van den Ende C, Arthurs E, Bassel M, Delisle V, Milette K, Leavens A, Razykov I, Khanna D. New directions for patient-centered care in scleroderma: The Scleroderma Patient-centered Intervention Network (SPIN). Clin Exp Rheumatol.