PUBLICATIONS
Publications 2021
PUBLISHED PEER-REVIEWED ARTICLES 2021
1. Østbo N, Yakes Jimenez E, Harb S, Bourgeault A, Carrier ME, Thombs BD, Scleroderma Patient centered Intervention Network (SPIN) Diet and Nutrition Education Patient Advisory Team. Nutritioninformation resources used by people with systemic sclerosis and perceived advantages and disadvantages: a nominal group technique study. ACR Open Rheumatol. In press.
2. Thombs BD, Kwakkenbos L, Levis B, Bourgeault A, Henry RS, Levis AW, Harb S, Tao L, Carrier ME, Bustamente L, Duchek D, Dyas L, El-Baalbaki G, Ellis K, Rice DB, Wurz A, Nordlund J, Gagarine M, Turner KA, Østbø N, Culos-Reed N, Hebblethwaite S, Patten S, Bartlett SJ, Varga J, Mouthon L, Markham S, Martin MS, Benedetti A, and the SPIN-CHAT Patient Advisory Team and Program Facilitators on behalf of the Scleroderma Patient-centered Intervention Network Investigators. Effects of a multi-faceted education and support program on anxiety symptoms among people with systemic sclerosis with at least mild anxiety during COVID-19: a two-arm parallel partially nested randomised controlled trial. Lancet Rheumatol. Epub ahead of print.
3. Gholizadeh S, Rice DB, Carboni-Jiménez A, Kwakkenbos L, Boruff J, Malcarne VL, Thombs BD, Scleroderma Patient-centered Intervention Network (SPIN) Body Image Patient Advisory Team. Effects of cosmetic and other camouflage interventions on appearance-related and psychological outcomes among adults with visibledifferences: a systematic review. BMJ Open. 2021;11:e046634.
4. Wu Y, Kwakkenbos L, Henry RS, Carrier ME, Gagarine M, Harb S, Bourgeault A, Tao L, Carboni-Jiménez A, Negeri Z, Patten S, Bartlett SJ, Mouthon L, Varga J, Benedetti A, Thombs BD, SPIN Patient Advisors and SPIN Investigators. Factors associated with fears due to COVID-19: a Scleroderma Patient-centered Intervention Network (SPIN) COVID-19 Cohort study. J Psychosom Res. 2021;140:110314.
Publications 2020
PUBLISHED PEER-REVIEWED ARTICLES 2020
1. Wu Y, Kwakkenbos L, Henry RS, Tao L, Harb S, Bourgeault A, Carrier ME, Levis B, Sun Y, Bhandari PM, Carboni-Jiménez A, Gagarine M, He C, Krishnan A, Negeri Z, Neupane D, Bartlett S, Benedetti A, Thombs BD, Scleroderma Patient-centered Intervention Network (SPIN) COVID-19 Investigators,12 SPIN COVID-19 Patient Advisory Team. Validation of the COVID-19 Fears Questionnaires for Chronic Medical Conditions: a Scleroderma Patient-centered Intervention Network COVID-19 Cohort Study. J Psychosom Res. 2020;139:110271.
2. Sommer SJ, Harel D, Kwakkenbos L, Carrier ME, Gholizadeh S, Gottesman K, Malcarne V, Thombs BD, SPIN Investigators. Assessing Differential Item Functioning for the Social Appearance Anxiety Scale A Scleroderma Patient-centered Intervention Network (SPIN) Cohort Study. BMJ Open. 2020;10:e037639.
3. Thombs BD, Kwakkenbos L, Henry RS, Carrier ME, Patten S, Harb S, Bourgeault A, Tao L, Bartlett SJ, Mouthon L, Varga J, Benedetti A, SPIN Patient Advisors, SPIN Investigators. Changes in mental health symptoms from pre-COVID-19 to COVID-19 among participants with systemic sclerosis from four countries: a Scleroderma Patient-centered Intervention Network (SPIN) Cohort Study. J Psychosom Res. 2020;139:110262.
4. Daste C, Abdoul H, Foissac F, Papelard A, Alami S, Kwakkenbos L, Carrier ME, Lefèvre-Colau M-M, Thombs BD, Poiraudeau S, Rannou F, Mouthon L, Nguyen C. Development of a new patient-reported outcome measure to assess activities and participation in people with systemic sclerosis: The Cochin 17-item Scleroderma Functional Scale (CSF-17). Br J Dermatol. 2020;183(4):710-718.
5. Rice DB, Carboni-Jiménez A, Cañedo-Ayala M, Turner KA, Chiovitti M, Levis AW, Thombs BD. Demonstrated and perceived benefits and factors that influence the ability to establish and maintain services for informal caregivers of people with rare diseases: a scoping review. The Patient - Patient–Centered Outcomes Research. 2020;13(5):471-519.
6. Harb S, Cumin J, Rice DB, Peláez S, Hudson M, Bartlett SJ, Roren A, Furst DE, Frech TM, Nguyen C, Nielson WR, Thombs BD, Shrier I, SPIN-PACE Patient Advisory Team. Identifying barriers and facilitators to physical activity for people with scleroderma: A nominal group technique study. Disabil Rehabil. 2020;17:1-8.
7. Rice DB, Cañedo-Ayala M, Carboni-Jiménez A, Carrier ME, 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. 2020;42(16):2304-2310.
8. Milette K, Thombs BD, Dewez S, Körner A, Peláez S. Scleroderma patient perspectives on social support from close social relationships. Disabil Rehabil. 2020;42(11):1588-1598.
9. Thombs BD, Kwakkenbos L, Carrier, ME, Bourgeault A, Tao L, Harb S, Gagarine M, Rice D, Bustamante L, Ellis K, Duchek D, Wu Y, Bhandari PM, Neupane D, Carboni-Jiménez A, Henry RS, Krishan A, Sun Y, Levis B, He C, Turner KA, Benedetti A, Culos-Reed N, El-Baalbaki G, Hebblethwaite S, Bartlett SJ, Dyas L, Patten S, Varga J, Scleroderma Patient-centered Intervention Network (SPIN) COVID-19 Patient Advisory Team, SPIN Investigators. Protocol for a partially nested randomised controlled trial to evaluate the effectiveness of the Scleroderma Patient-centered Intervention Network COVID-19 Home-isolation Activities Together (SPIN-CHAT) Program to reduce anxiety among at-risk scleroderma patients. J Psychosom Res. 2020;135:110132.
10. Carrier M, Kwakkenbos L, et al. Protocol for a Randomized Feasibility Trial of the Scleroderma Patient-centered Intervention Network Self-Management (SPIN-SELF) Program. JMIR - Res Protoc. 2020;9(4):e16799.
11. Cañedo-Ayala M, Rice DB, Levis B, Carrier ME, Cumin J, Malcarne VL, Hagedoorn M, Thombs BD, the Scleroderma Caregiver Advisory Committee. Factors associated with symptoms of depression among informal caregivers of people with systemic sclerosis: a cross-sectional study, Disabil Rehabil. 2020;42(3):394-9.
Publications 2019
PUBLISHED PEER-REVIEWED ARTICLES 2019
1. Thombs BD, Aguila K, Dyas L, Carrier, ME, Fedoruk C, Horwood L, Cañedo-Ayala M, Sauvé M, Kwakkenbos L, Malcarne VL, El-Baalbaki G, Peláez S, Connolly K, Hudson M, Platt RW, SPIN-SSLED Support Group Advisory Team. Protocol for a partially nested randomized controlled trial to evaluate the effectiveness of the Scleroderma Patient-centered Intervention Network Support Group Leader EDucation (SPIN-SSLED) Program. Trials. 2019;20(717):1-12.
2. Rice DB, Cañedo-Ayala M, Carboni-Jiménez A, Carrier ME, 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. 2020;42(16):2304-2310.
3. Thombs BD, Dyas L, Pépin M, Aguila K, Carrier ME, Tao L, Harb S, Malcarne VL, El-Baalbaki G, Peláez S, Sauvé M, Hudson M, Platt RW, SPIN-SSLED Patient Advisory Team. Scleroderma Patient-centered Intervention Network – Scleroderma Support group Leader EDucation (SPIN-SSLED) Program: Non-randomised feasibility trial. BMJ Open. 2019;9:e029935.
4. Kwakkenbos L, Carboni-Jiménez A, Carrier ME, Pépin M, Peláez S, Malcarne VL, El-Baalbaki G, Thombs BD. the Scleroderma Patient-centered Intervention Network (SPIN) Support Group Project Advisory Team. Reasons for Not Participating in Scleroderma Patient Support Groups: a Comparison of Results from the North American and European Scleroderma Support Group Surveys. Disabil Rehabil. In press.
5. Becetti K, Kwakkenbos L, Carrier ME, Gordon J, Nguyen J, Mancuso C, Mouthon L, Nguyen C, Rannou F, Welling J, Thombs BD, Spiera R. Physical or occupational therapy utilization in systemic sclerosis: a Scleroderma Patient-centered Intervention Network Cohort study. J Rheumatol. 2019;46(12):1605-13.
6. Kwakkenbos L, Cumin J, Carrier M-E, Bartlett SJ, Malcarne VL, Mouthon L, Nielson WR, Rannou R, Welling J, Thombs BD, SPIN Investigators. Factors associated with patient-reported likelihood of using online self-care interventions: a Scleroderma Patient-centered Intervention Network (SPIN) Cohort study. BMJ Open. 2019;9:e029542.
7. Milette K, Thombs BD, Maiorino K, Nielson WR, Körner A, Peláez S. Challenges and strategies for coping with scleroderma: implications for a scleroderma-specific self-management program. Disabil Rehabil. 2019;41(21):2506-2515.
8. Pépin M, Kwakkenbos L, Carrier ME, Peláez S, El-Baalbaki G, Malcarne VL, Thombs BD, Scleroderma Patient-centered Network (SPIN) Support Group Project Advisory Team. Reasons for attending support groups and organizational preferences: a replication study using the North American Scleroderma Support Group Survey. J Scleroderma Relat Disord. 2019;4(3): 173-186.
9. Tao L, Fedoruk C, Turner KA, Cumin J, Carrier ME, Carboni-Jiménez A, Pépin M, Kwakkenbos L, Thombs BD, SPIN Patient Advisory Board. The Scleroderma Research Topics Survey for patients and health care professionals: A Scleroderma Patient-centered Intervention Network (SPIN) project. J Scleroderma Relat Disord. 2019;4(3): 165-172.
10. Gumuchian ST, Delisle VC, Kwakkenbos L, Pépin M, Carrier ME, 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. 2019;41(8):974-982.
11. Delisle VC, Gumuchian ST, El-Baalbaki G, Körner A, Malcarne VL, Peláez S, Carrier ME, 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. Disabil Rehabil. 2019;41(20):2477-2482.
12. Turner KA, Rice DB, Carboni-Jiménez A, Boruff J, Thombs BD. Effects of training and support programs for leaders of illness-based support groups: commentary and updated evidence. Syst Rev. 2019;8(1):67.
13. Harel D, Mills SD, Kwakkenbos L, Carrier ME, 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. 2019;9:e024010.
Publications 2018
PUBLISHED PEER-REVIEWED ARTICLES 2018
1. Azar M, Rice DB, Kwakkenbos L, Carrier M-E, Shrier I, Bartlett SJ, Hudson M, Mouthon L, Poiraudeau S, van den Ende CHM, Johnson SR, Rodriguez Reyna TS, Schouffoer AA, Welling J, Thombs BD, SPIN Investigators. Exercise habits and factors associated with exercise in systemic sclerosis: a Scleroderma Patient-centered Intervention Network (SPIN) Cohort Study. Disabil Rehabil. 2018;40(17):1997-2003
2. Dougherty DH, Kwakkenbos L, Carrier M-E, Salazar G, Assassi S, Baron M, Bartlett SJ, Furst DE, Gottesman K, van den Hoogen F, Malcarne VL, Mouthon L, Nielson WR, Poiraudeau S, Sauvé M, Boire G, Bruns A, Chung L, Denton CD, Dunne JV, Fortin P, Frech T, Gill A, Gordon J, Herrick AL, Hinchcliff M, Hudson M, Johnson SR, Jones N, Kafaja S, Larche M , Manning J, Pope J, Spiera R, Steen V, Sutton E, Thorne C, Wilcox P, Thombs BD, Mayes MD, SPIN Investigators. The Scleroderma Patient-centered Intervention Network (SPIN) Cohort: baseline clinical features and comparison to other large scleroderma cohorts. Rheumatology. 2018;57(9):1623-1631.
3. Kwakkenbos L, Sanchez TA, Turner KA, Mouthon L, Carrier ME, Hudson M, van den Ende CH, Schouffoer AA, Welling JJ, Sauvé M, Thombs BD. The association of sociodemographic and disease variables with hand function: a Scleroderma Patient-centered Intervention Network cohort study. Clin Exp Rheumatol. 2018;36(Suppl. 113):S88-S94.
4. Fox RS, Kwakkenbos L, Carrier ME, Mills SD, Gholizadeh S, Jewett LR, Roesch SC, Merz EL, Assassi S, Furst DE, Gottesman K, Mayes MD, Thombs BD, Marlcarne BL, and the SPIN Investigators. Validation of the Brief Fear of Negative Evaluation Scale‐II in patients with systemic sclerosis: A Scleroderma Patient‐centered Intervention Network Cohort study. Arthritis Care Res. 2018;70(11): 1646-1652.
5. Mills SD, Kwakkenbos L, Carrier ME, Gholizadeh S, Fox RS, Jewett LR, Gottesman K, Roesch SC, Thombs BD, Malcarne VL, and the SPIN Investigators. Validation of the Social Appearance Anxiety Scale in Patients with Systemic Sclerosis: A Scleroderma Patient-centered Intervention Network Cohort Study. Arthritis Care Res. 2018;70(10):1557-1562.
6. Pal NE, Gumuchian ST, Delisle VC, Pépin M, Malcarne VL, Carrier M-E, Kwakkenbos L, Peláez S, El-Baalbaki G, Thombs BD, Scleroderma Support Group Project Advisory Team. Development and preliminary validation of the Scleroderma Support Group Leader Self-efficacy Scale. J Scleroderma Relat Disord. 2018;3(1):106-111. [IF=N/A].
7. Carrier M-E, Kwakkenbos L, Boutron I, Welling J, Sauve M, van den Ende C, Schouffoer AA, Hudson M, Thombs BD, Mouthon L, SPIN Investigators. Randomized Feasibility Trial of the Scleroderma Patient-centered Intervention Network Hand Exercise Program (SPIN-HAND): Study Protocol. Journal of Scleroderma and Related Disorders. 2018;3(1):91-97. [IF=N/A].
8. Gholizadeh S, Kwakkenbos L, Carrier M-E, Mills SD, Fox RS, Jewett LR, Gottesman K, Roesch S, Thombs BD, Malcarne VL, SPIN Investigators. Validation of the Social Anxiety Interaction Scale (SIAS-6) in systemic sclerosis: A Scleroderma Patient-centered Intervention Network (SPIN) Cohort Study. J Scleroderma Relat Disord. 2018;3(1):98-105. [IF=N/A]
9. Merz EL, Kwakkenbos L, Carrier ME, Gholizadeh S, Mills SD, Fox RS, Jewett LR, Williamson H, Harcourt D, Assassi S, Furst DE, Gottesman K, Mayes MD, Moss T, Thombs BD, Malcarne VL, SPIN Investigators. Factor structure and convergent validity of the Derriford Appearance Scale-24 using standard scoring versus using “not applicable” responses as missing data: A Scleroderma Patient-centered Intervention Network (SPIN) Cohort study. BMJ Open. 2018;8:e018641.
10. Rice DB, Cañedo Ayala M, Turner KA, Gumuchian ST, Malcarne VL, Hagedoorn M, Thombs BD, Scleroderma Caregiver Advisory Committee. Use of the nominal group technique to identify stakeholder priorities and inform survey development: an example with informal caregivers of people with scleroderma. BMJ Open. 2018;8:e019726.
11. Gumuchian ST, Delisle VC, Peláez S, Malcarne VL, El-Baalbaki G, Kwakkenbos L, Jewett LR, Carrier M-E, Pépin M, Thombs BD, Scleroderma Support Group Project Advisory Team. Reasons for not participating in scleroderma patient support groups: A cross-sectional study. Arthritis Care Res. 2018;70(2):275-283.
12. Gumuchian ST, Peláez S, Delisle VC, Carrier ME, Jewett LR, El-Baalbaki G, Fortune C, Hudson M, Körner A, Kwakkenbos L, Bartlett SJ. Understanding coping strategies among people living with scleroderma: a focus group study. Disabil Rehabil. 2018;40(25):3012-21.
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 2015
PEER-REVIEWED ORAL CONFERENCE PRESENTATIONS 2015
1.Kwakkenbos L, Thombs BD, Bartlett S, Hudson M, Mouthon L, Malcarne V, Sauve M, Khanna D, SPIN investigators. The PROMIS-29 in systemic sclerosis: associations with clinical characteristics. PHO Inaugural Meeting, Philadelphia, USA. May 2015.
2. Gholizadeh S, Mills SD, Fox RS, Jewett LR, Carrier ME, Kwakkenbos L, Gottesman K, Roesch SC, Thombs BD, Malcarne VL, SPIN Investigators. A Psychometric Analysis of the Social Interaction Anxiety Scale (SIAS-6) in Systemic Sclerosis: Preliminary results from the Scleroderma Patient-centered Intervention Network (SPIN) Cohort. American College of Rheumatology/Association for Rheumatology Health Professionals Annual Scientific Meeting, San Francisco, CA, USA. Nov 2015.
3.Bartlett SJ, Carrier ME, Correira H, Kwakkenbos L, Thombs BD, SPIN investigators. PROMIS-29 en français: coordinating translation efforts in Canada and France for a universal approach. PHO Inaugural Meeting, Philadelphia, USA. May 2015.
4. Kwakkenbos L, Thombs BD, Bartlett SJ, Carrier ME, Hudson M, Mouthon L, Malcarne V, Sauve M, Khanna D, SPIN investigators. The PROMIS-29 in Systemic Sclerosis: Associations with Clinical Characteristics in the Scleroderma Patient-Centered Intervention Network (SPIN) Cohort. American College of Rheumatology/Association for Rheumatology Health Professionals Annual Scientific Meeting, San Francisco, CA, USA. Nov 2015.
PEER-REVIEWED CONFERENCE POSTER PRESENTATIONS 2015
1. Kwakkenbos L, Thombs BD, Bartlett SJ, Carrier ME, Hudson M, Mouthon L, Malcarne V, Sauve M, Khanna D, SPIN investigators. Construct Validity of the PROMIS-29 in Systemic Sclerosis: Results from the Scleroderma Patient-Centered Intervention Network (SPIN) Cohort. American College of Rheumatology/Association for Rheumatology Health Professionals Annual Scientific Meeting, San Francisco, CA, USA. Nov 2015.
2. Mills SD, Gholizadeh S, Fox RS, Jewett LR, Carrier ME, Kwakkenbos, L, Gottesman K, Roesch SC, Thombs BD, Malcarne VL, SPIN Investigators. Psychometric Properties of the Social Appearance Anxiety Scale in Patients with Limited and Diffuse Systemic Sclerosis: Analysis from the Scleroderma Patient-centered Intervention Network Cohort. American College of Rheumatology/Association for Rheumatology Health Professionals Annual Scientific Meeting, San Francisco, CA, USA. Nov 2015.
3. Azar M, Rice D, Hudson M, Kwakkenbos L, Thombs BD, SPIN Investigators. Exercise Habits and its Associated Factors in Scleroderma. 2015 Scleroderma National Conference, Scleroderma Society of Canada, Hamilton, Ontario, Canada. September 2015.
4. Carrier M-E, Kwakkenbos L, Thombs BD, SPIN investigators. An international collaboration to collect data and develop online interventions for scleroderma patients: the Scleroderma Patient-centered Intervention Network (SPIN). 2015 Scleroderma National Conference, Scleroderma Society of Canada, Hamilton, Ontario, Canada. September 2015.
5. Gumuchian S, Delisle V, Razykov I, Carrier M-E, El-Baalbaki G, Kwakkenbos L, Thombs BD, Bartlett SJ. Using focus group discussions to develop an online resource to help individuals with scleroderma manage emotional distress. 2015 Scleroderma National Conference, Scleroderma Society of Canada, Hamilton, Ontario, Canada. September 2015.
6. Kwakkenbos L, Thombs BD, Bartlett S, Hudson M, Mouthon L, Malcarne V, Sauve M, Khanna D, SPIN investigators. Measuring quality of life in scleroderma using the PROMIS-29 measure: evidence from the Scleroderma Patient-centered Intervention Network (SPIN). 2015 Scleroderma National Conference, Scleroderma Society of Canada, Hamilton, Ontario, Canada. September 2015.
7. Milette K, Nielson W, Khanna D, Thombs BD. Learning from personal experiences of people coping with and managing scleroderma. 2015 Scleroderma National Conference, Scleroderma Society of Canada, Hamilton, Ontario, Canada. September 2015.
8. Riehm KE, Kwakkenbos L, Carrier ME, Nielson W, Nielsen K, Thombs BD, SPIN Investigators. Can the Self-Efficacy to Manage Chronic Disease Scale be used to evaluate self-efficacy in patients with systemic sclerosis? A psychometric analysis in the Scleroderma Patient-Centered Intervention Network (SPIN) Cohort. 2015 Scleroderma National Conference, Scleroderma Society of Canada, Hamilton, Ontario, Canada. September 2015.
9. Kwakkenbos L, Thombs BD, Bartlett S, Hudson M, Mouthon L, Malcarne V, Sauve M, Khanna D, SPIN investigators. Construct validity of the PROMIS-29 in systemic sclerosis: preliminary results from the Scleroderma Patient-centered Intervention Network (SPIN) Cohort. EULAR 2015, Rome, Italy. June 2015.
10.Gumuchian S, Delisle V, Razykov I, Carrier ME, El-Baalbaki G, Kwakkenbos L, Thombs BD, Bartlett S. Focus groups to inform the development of a scleroderma emotional distress internet-based coping tool. 76th Canadian Psychological Association Convention, Ottawa, Canada. Jun 2015.
11.Kwakkenbos L, Thombs BD, Bartlett S, Hudson M, Mouthon L, Malcarne V, Sauve M, Khanna D, SPIN investigators. Construct validity of the PROMIS-29 in systemic sclerosis: preliminary results from the Scleroderma Patient-centered Intervention Network (SPIN) Cohort. PHO Inaugural Meeting, Philadelphia, USA. May 2015.
12.Kwakkenbos L, Thombs BD. Novel approaches for pragmatic evaluations and dissemination of E-health interventions: the Scleroderma Patient-centered Intervention Network. 4th Association for Researchers in Psychology and Health (ARPH) Conference, Ghent, Belgium. Feb 2015.
ARTICLES IN PROFESSIONNAL OR CULTURAL JOURNALS 2015
1. Carrier ME, Kwakkenbos L. Introducing the Scleroderma Patient-centered Intervention Network (SPIN ) Co-Director and Coordinator. The Scleroderma Reporter. Scleroderma Society of Ontario. Spring/Summer 2015
2. Gumuchian S, Delisle VC, Thombs BD. Illuminating the support group experience: Helping leaders get the support they need. The Scleroderma Reporter. Scleroderma Society of Ontario. Spring/Summer 2015.
Publications 2014
INVITED SPEAKER PRESENTATIONS 2014
1. Kwakkenbos L. Overcoming barriers to evaluating psychological interventions: the cohort multiple randomized controlled trial (cmRCT) design. Appearance Matters: An International Conference about the Impact of Appearance in our Society, Kristianstad, Sweden, Dec 2014.
2. Kwakkenbos L. Ethical considerations in pre-consent randomization models. Trials within Cohorts Symposium, London School of Hygiene & Tropical Medicine, November 10-11, 2014.
3. Thombs BD. The cmRCT design in a rare disease context: The Scleroderma Patient-centered Intervention Network. Trials within Cohorts Symposium, London School of Hygiene & Tropical Medicine, November 10-11, 2014.
4. Thombs BD. A hydrid cohort-trial design for internet-based outcome data collection: The Scleroderma Patient-centered Intervention Network. Lupus 2014, Quebec City, Quebec, Canada, September 2014.
LOCAL SCIENTIFIC PRESENTATIONS 2014
1.Thombs BD. Using the cohort multiple randomized controlled trial (cmRCT) design for pragmatic intervention trials: An example from a rare disease context. Réseau de recherche en interventions en sciences infirmières du Québec, Montreal, Quebec, Canada. January 15, 2014.
ARTICLES IN PROFESSIONAL OR CULTURAL JOURNALS 2014
1.Thombs BD. Towards better care for scleroderma: An update from the Scleroderma Patient-centered Intervention Network. The Scleroderma Connection, Scleroderma Society of Canada, Fall 2014, p. 6-7.
PEER-REVIEWED ORAL CONFERENCE PRESENTATIONS 2014
1. Jewett LR, Delisle VC, Mendelson C, Malcarne VL, Hudson M, Thombs BD. Visible differences from medical illness: body image concerns in scleroderma. In symposium (Malcarne VL, discussant): Overcoming barriers to developing, testing, and disseminating interventions for body image distress in a rare disease context: the Scleroderma Patient-centered Intervention Network (SPIN). Appearance Matters 6, Bristol, UK, July 2014.
2. Welling J, Thombs BD. Patient organizations in the Scleroderma Patient-centered Intervention Network (SPIN): Partner, expert and advocate. In symposium (Malcarne VL, discussant): Overcoming barriers to developing, testing, and disseminating interventions for body image distress in a rare disease context: the Scleroderma Patient-centered Intervention Network (SPIN). Appearance Matters 6, Bristol, UK, July 2014.
3. Williamson H, Malcarne VL. Delivering an online disease-specific body image intervention: examples from the SPIN Body Image Project. In symposium (Malcarne VL, discussant): Overcoming barriers to developing, testing, and disseminating interventions for body image distress in a rare disease context: the Scleroderma Patient-centered Intervention Network (SPIN). Appearance Matters 6, Bristol, UK, July 2014.
4. Kwakkenbos L, Thombs BD. Leveraging an innovative trial design for pragmatic evaluations of psychological interventions: the cohort multiple randomized controlled trial (cmRCT) design. In symposium (Malcarne VL, discussant): Overcoming barriers to developing, testing, and disseminating interventions for body image distress in a rare disease context: the Scleroderma Patient-centered Intervention Network (SPIN). Appearance Matters 6, Bristol, UK, July 2014.
5. Kwakkenbos L. Measurement considerations in cross-national studies: Translation and assessment of metric equivalencies. In symposium (Geenen R and Redmond A, Chairs). The Scleroderma Patient-centered Intervention Network (SPIN): Meeting the challenges of research into a rare disease. European League Against Rheumatism Congress 2014, Paris, France, June 14, 2014.
6. Mouthon L. Delivering an online disease-specific rehabilitation intervention: Examples from the SPIN Hand Project In symposium (Geenen R and Redmond A, Chairs). The Scleroderma Patient-centered Intervention Network (SPIN): Meeting the challenges of research into a rare disease. European League Against Rheumatism Congress 2014, Paris, France, June 14, 2014.
7. Thombs BD. Leveraging an innovative trial design for a rare disease context: The cohort multiple RCT (cmRCT) design. In symposium (Geenen R and Redmond A, Chairs). The Scleroderma Patient-centered Intervention Network (SPIN): Meeting the challenges of research into a rare disease. European League Against Rheumatism Congress 2014, Paris, France, June 14, 2014.
PEER-REVIEWED CONFERENCE POSTER PRESENTATIONS 2014
1. Kwakkenbos L, Thombs BD. Overcoming barriers to developing, testing, and disseminating psychosocial and rehabilitation interventions in a rare disease context: the Scleroderma Patient-centered Intervention Network (SPIN). International Conference on Rare Disease and Orphan Drugs (ICORD) 2014 Annual Meeting, Ede, the Netherlands. Oct 2014.
2. Kwakkenbos L, Jewett LR, Thombs BD. Overcoming barriers to developing, testing, and disseminating psychosocial and rehabilitation interventions in a rare disease context: the Scleroderma Patient-centered Intervention Network (SPIN). International Society for Research on Internet Interventions 7th Scientific Meeting, Valencia, Spain. Oct 2014.
3. Milette K, Mendelson C, Khanna D, Nielson W, Thombs BD. The SPIN self-management program for scleroderma: Learning from personal experiences (preliminary analysis). 122nd American Psychological Association convention, Washington, DC. Aug 2014.
4. Kwakkenbos L, Jewett LR, Thombs BD. An international collaboration to conduct large-scale trials of non-pharmacological interventions in scleroderma: The Scleroderma Patient-centered Intervention Network (SPIN). 45th Laurentian Conference of Rheumatology, Tremblant, Quebec, Canada. May 2014.
5. Malcarne VL, Mayes MD, Assassi S, Fox RS, Gholizadeh S, Gottesman K, Harcourt D, Kwakkenbos L, Jewett LR, Mendelson C, Mills SD, Rumsey N, Strohauer T, Williamson H, Thombs BD. Developing an intervention for body image distress in systemic sclerosis: An update from the Scleroderma Patient-centered Intervention Network (SPIN). 3rd Systemic Sclerosis World Congress, Rome, Italy. Feb 2014.
6. Kwakkenbos L, Jewett LR, Thombs BD.An international collaboration to conduct large-scale trials of non-pharmacological interventions in scleroderma: The Scleroderma Patient-centered Intervention Network (SPIN). 3rd Systemic Sclerosis World Congress, Rome, Italy. Feb 2014.
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.