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PUBLICATIONS

Publications 2021

PEER-REVIEWED CONFERENCE POSTER PRESENTATIONS 2021

 

1. Østbø N, Yakes Jimenez E, Harb S, Bourgeault A, Carrier ME, Thombs BD, SPIN - Diet and Nutrition Education Patient Advisory Team. Nutrition information resources used by people with scleroderma and perceived advantages and disadvantages: a nominal group technique study. 2021 Canadian Rheumatology Association Annual Scientific Meeting. Online. February 2021.

2. Harb S, Peláez S, Carrier ME, Kwakkenbos L, Bartlett SJ, Hudson M, Mouthon L, Sauvé M, Welling J, Shrier I, Thombs BD, SPIN – Physical Activity Enhancement Patient Advisory Team, SPIN Investigators. Barriers and facilitators to physical activity for people with scleroderma: a Scleroderma Patient-centered Intervention Network (SPIN) Cohort study. 2020 Canadian Rheumatology Association Annual Scientific Meeting. Online. February 2021.

3. Tao L, Carboni-Jiménez A, Turner K, Østbø N, Aguila K, Boruff J, Krishnan A, Ahmed S, Thombs BD, Kwakkenbos L. Perceived barriers and facilitators of using synchronous telerehabilitation of physical and occupational therapy in musculoskeletal disorders: a scoping review. 2021 Canadian Rheumatology Association Annual Scientific Meeting. Online. February 2021.

4. Wu Y, Kwakkenbos L, Henry RS, Carrier ME, Gagarine M, Harb S, Bourgeault A, Tao L, Carboni-Jiménez A, Negeri Z, Patten SB, Bartlett SJ, Mouthon L, Varga J, Benedetti A, Thombs BD, SPIN Investigators. Factors associated with fears due to COVID-19: a Scleroderma Patient-centered Intervention Network (SPIN) COVID-19 Cohort study. 2021 Canadian Rheumatology Association Annual Scientific Meeting. Online. February 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.
 

INVITED SPEAKER PRESENTATIONS 2021

 

1. Thombs BD. Using cohorts and other routinely collected data in randomized controlled trials: Examples from the Scleroderma Patient-centered Intervention Network. McGill University, Faculty of Medicine, Department of Epidemiology, Biostatistics, and Occupational Health. Montreal, Quebec, Canada. March 29, 2021.

2. Ellis K. L’Exercice et la Sclérodermie: Y Faire Face Pendant le Confinement de la Covid-19. Groupe de soutien en Outaouais - Sclérodermie Québec. February 9th, 2021 (presented via videoconference).

3. Ellis K. Getting Active - Where to start and how to keep going. Scleroderma Foundation - Tri-State Chapter. February 7, 2021 (presented via videoconference).

4. Thombs BD. Supporting mental health during COVID-19 among people vulnerable due to a pre-existing medical condition: the SPIN-CHAT Trial. Weill Cornell Medicine, Department of Psychiatry, Psychology Grand Rounds. New York, New York, USA, January 21, 2021 (presented via videoconference due to COVID-19).

Publication 2020

PEER-REVIEWED ORAL CONFERENCE PRESENTATIONS 2020

 

1. Carboni-Jiménez A, Rice DB, Cañedo-Ayala M, Thombs BD*. The experience of informal caregivers of persons with systemic sclerosis: a SPIN-CARE study. In Rice DB (Chair). Patientcentered Interdisciplinary Research in a Rare Disease Context: The Scleroderma Patient-centered Intervention Network (SPIN) (Symposium). 2020 Interdisciplinary Conference in Psychology, Ottawa, Ontario, Canada. May 2020 (presented via internet due to COVID-19). 

2. Harb S, Peláez S, Carrier M-E, Kwakkenbos L, Bartlett SJ, Hudson M, Mouthon L, Sauvé M, Welling J, Thombs BD*, Shrier I, Scleroderma Patient-centered Intervention Network (SPIN) – Physical Activity Enhancement Patient Advisory Team, SPIN Investigators. Physical activity barriers and facilitators in scleroderma: A Scleroderma Patient-centered Intervention Network (SPIN) Cohort study. In Rice DB (Chair). Patient-centered Interdisciplinary Research in a Rare Disease Context: The Scleroderma Patient-centered Intervention Network (SPIN) (Symposium). 2020 Interdisciplinary Conference in Psychology, Ottawa, Ontario, Canada. May 2020 (presented via internet due to COVID-19). 

3. Thombs BD*, Dyas L, Pépin M, Aguila K, Carrier ME, Tao L, Harb S, Malcarne VL, El-Baalbaki G, Peláez S, Sauve M, Hudson M, Platt RW, SPIN-SSLED Patient Advisory Team. Patients supporting patients: The SPIN – Scleroderma Support group Leader Education (SPIN-SSLED) Program. In Rice DB (Chair). Patient-centered Interdisciplinary Research in a Rare Disease Context: The Scleroderma Patient-centered Intervention Network (SPIN) (Symposium). 2020 Interdisciplinary Conference in Psychology, Ottawa, Ontario, Canada. May 2020 (presented via internet due to COVID-19).

4. Kwakkenbos L, Carrier ME, Turner K, Tao L, Aguila K, Carboni-Jiménez A, Cañedo Ayala M, Harb S, Welling J, Sauve M, van den Ende C, Schouffoer A, Hudson M, Nguyen C, Boutron I, Rannou F, Thombs B, Mouthon L, and the SPIN Investigators. Randomized controlled trial of an internet-based exercise program to improve hand function in patients with scleroderma: a Scleroderma Patient- centered Intervention Network (SPIN) study. 6th Systemic Sclerosis World Congress. Prague, Czech Republic, March 2020.

 

PEER-REVIEWED CONFERENCE POSTER PRESENTATIONS 2020

 

1. Kwakkenbos L, Carboni-Jiménez A, Carrier ME, Pépin M, Peláez S, Malcarne VL, El-Baalbaki G, Thombs BD, Scleroderma 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. 6th Systemic Sclerosis World Congress. Prague, Czech Republic, March 2020.

2. Kwakkenbos L, Hudson M, Schraven L, Thonen-Velthuizen J, Thombs BD. Development and evaluation of a patient decision aid for autologous hematopoietic stem cell transplantation in systemic sclerosis. 6th Systemic Sclerosis World Congress. Prague, Czech Republic, March 2020.

3. Meier A, Gholizadeh S, Ataseven B, Roesch S, Carrier ME, Kwakkenbos L, Thombs BD, Malcarne VL. The relationship of patient sociodemographic and scleroderma disease characteristics with social interaction anxiety: A Scleroderma Patient-centered Intervention Network cohort study. 6th Systemic Sclerosis World Congress. Prague, Czech Republic, March 2020.

4. Carboni-Jiménez A, Rice DB, Cañedo-Ayala M, Levis B, Imran M, Chiovitti M, Thombs BD. Caregiving intensity and perceived burden among informal caregivers of persons with systemic sclerosis compared to other chronic medical conditions: A systematic review. 6th Systemic Sclerosis World Congress. Prague, Czech Republic, March 2020.

5. Carrier ME,  Kwakkenbos L, Nielson WR, Fedoruk C, Nielsen K, Milette K, Pope J, Frech T, Gholizadeh S, Hummers L, Johnson SR, Piotrowski P, Jewett L, Gordon J, Chung L, Bilsker D, Turner K, Cumin J, Welling J, Fortune C, Leite C, Gottesman K, Sauve M, Rodriguez Reyna TS, Hudson M, Larche M, van Breda W, Suarez-Almazor ME, Bartlett SJ, Malcarne VL, Mayes MD, Boutron I, Mouthon L, Wigley F, Thombs BD, SPIN Investigators. Randomized feasibility trial of the Scleroderma Patient-centered Intervention Network Self-Management (SPIN-SELF) program. 6th Systemic Sclerosis World Congress. Prague, Czech Republic, March 2020.

6. Fedoruk C, Kwakkenbos L, Carrier ME, Rice DB, Turner KA, Cañedo-Ayala M, Carboni-Jiménez A, Tao L, Harb S, Gholizadeh S, Aguila K, Thombs BD. The Scleroderma Patient-centered Intervention Network (SPIN): Engaging patients in rheumatology research. 6th Systemic Sclerosis World Congress. Prague, Czech Republic, March 2020.

7. 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. 6th Systemic Sclerosis World Congress. Prague, Czech Republic, March 2020.

8. Harb S, Peláez S, Thombs BD, Shrier I, SPIN-PACE Patient Advisory Team. Use of a cohort-based survey to identify important barriers and facilitators to physical activity for people with scleroderma: A Scleroderma Patient-centered Intervention Network cohort study protocol. 6th Systemic Sclerosis World Congress. Prague, Czech Republic, March 2020.

9. Sommer SJ, Harel D, Mills S, Kwakkenbos L, Carrier ME, Gholizadeh S, Portales A, Nielson K, Bartlett S, Malcarne V, Thombs BD. Investigating differential item functioning on the Social Appearance Anxiety Scale for French- and English-speaking patients: A Scleroderma Patient-centered Intervention Network cohort study. 6th Systemic Sclerosis World Congress. Prague, Czech Republic, March 2020.

10. Tao L, Kwakkenbos L, Carboni-Jiménez A, Turner KA, Aguila K, Boruff J, Ahmed S, Thombs BD. Perceived barriers and facilitators of using synchronous telerehabilitation of physical and occupational therapy in musculoskeletal disorders: A scoping review. 6th Systemic Sclerosis World Congress. Prague, Czech Republic, March 2020.

11. Thombs BD, Dyas L, Pépin M, Razykov I, Aguila K, Carrier ME, Tao L, Malcarne V, El-Baalbaki G, Platt R, Hudson M, Sauve M, Connolly K, Scleroderma Support Group Advisory Team. Feasibility trial of the Scleroderma Patient-centered Intervention Network Support Group Leader Education (SPIN-SSLED) program. 6th Systemic Sclerosis World Congress. Prague, Czech Republic, March 2020.

12. Wojeck RK, Kwakkenbos L, Carrier ME, Bailey DE, Knisely MR, Somers TJ, Bartlett SJ, Pope J, Nielson WR, Nielson K, Thombs BD, Silva SG, SPIN Investigators. Trajectories of pain in systemic sclerosis. 6th Systemic Sclerosis World Congress. Prague, Czech Republic, March 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.

 

INVITED SPEAKER PRESENTATIONS 2020

 

1. Rice DB. Identifying the needs and priorities of informal caregivers for people living with systemic sclerosis. 19th Bi-Annual National Scleroderma Conference. October 5, 2020 (presented via videoconference due to COVID-19).

2. Thombs BD. Patients Supporting Patients: The SPIN – Scleroderma Support group Leader EDucation (SPIN-SSLED). 19th Bi-Annual National Scleroderma Conference. October 5, 2020 (presented via videoconference due to COVID-19).

3. Thombs BD. Patients Supporting Patients: The SPIN – Scleroderma Support group Leader EDucation (SPIN-SSLED). 19th Bi-Annual National Scleroderma Conference. Niagara Falls, Ontario, Canada. September 19, 2020 (presented via videoconference due to COVID-19).

4. Thombs BD. The Scleroderma Patient-centered Intervention Network (SPIN): A Patient-Researcher Partnership to Support Better Living with Scleroderma. 19th Bi-Annual National Scleroderma Conference. Niagara Falls, Ontario, Canada. September 19, 2020 (presented via videoconference due to COVID-19).

5. Thombs BD. The Scleroderma Patient-centered Intervention Network (SPIN). Health and Wellness Lab, University of Calgary, Alberta. September 2, 2020 (presented via videoconference due to COVID-19).

6. Ellis K. Behaviour Change and Sticking to It: Motivating Yourself at Home. Scleroderma Victoria. August 28, 2020 (presented via videoconference due to COVID-19).

7. Rice DB. Identifying the Needs and Priorities of Informal Caregivers for People Living with Systemic Sclerosis. Scleroderma Foundation - Michigan Chapter. July 23, 2020 (presented via videoconference).

8. Thombs BD. The Scleroderma Patient-centered Intervention Network (SPIN): partnering with patients to develop, test, and deliver psychosocial, educational, and rehabilitation interventions. Johns Hopkins University School of Medicine, Department of Rheumatology, Baltimore, USA, May 18, 2020 (not presented due to COVID-19).

9. Ellis K. Exercising at home with Scleroderma – Coping during COVID-19. Scleroderma & Raynaud’s United Kingdom (SRUK) - Leeds Support group. May 14, 2020 (presented via videoconference due to COVID-19).

10. Thombs BD. Patient support programs from the Scleroderma Patient-centered Intervention Network (SPIN). 6th Systemic Sclerosis World Congress. Prague, Czech Republic, March 6, 2020. (not presented due to COVID-19).

11. Thombs BD. The Scleroderma Patient-centered Intervention Network: A Patient-Researcher Partnership to Improve the Lives of People Living with Scleroderma. Lethbridge-Layton-Mackay Rehabilitation Centre, Montreal, Quebec, Canada. January 14, 2020.

Publication 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.

 

PEER-REVIEWED CONFERENCE POSTER PRESENTATIONS 2019

 

1. Thombs BD, Kwakkenbos L, Carrier M-E, Rice DB, Fedoruk C, Turner K, Cañedo-Ayala M, Carboni-Jiménez A, Tao L, Harb S, Gholizadeh S, Aguila K, Sauve M, SPIN Investigators. Addressing Challenges to Patient-centered Care in a Rare Disease Context: The Scleroderma Patient-centered Intervention Network (SPIN). The 2019 Scleroderma Foundation Patient Education Conference. Chicago, Illinois, USA, July 2019.

2. Fedoruk C, Kwakkenbos L, Carrier M-E, Rice DB, Turner KA, Cañedo-Ayala M, Carboni-Jiménez A, Tao L, Harb S, Gholizadeh S, Aguila K, Thombs BD. The Scleroderma Patient-centered Intervention Network (SPIN): Engaging patients in rheumatology research. The 2019 Scleroderma Foundation Patient Education Conference. Chicago, Illinois, USA, July 2019.

3. Fedoruk C, Kwakkenbos L, Carrier M-E, Rice DB, Turner KA, Cañedo-Ayala M, Carboni-Jiménez A, Tao L, Harb S, Gholizadeh S, Aguila K, Thombs BD. The Scleroderma Patient-centered Intervention Network (SPIN): Engaging patients in rheumatology research. The 2019 Laurentian Conference of Rheumatology. Estérel, Quebec, Canada, May 2019.

4. Turner KA, Kwakkenbos L, Cumin J, Carrier M-E, Boutron I, Bartlett SJ, Malcarne V, Mouthon L, Nielson WR, Welling J, Thombs BD. Factors influencing patient-reported willingness to participate in an online self-care intervention: a Scleroderma Patient-centered Intervention Network (SPIN) Cohort study. The 2019 Laurentian Conference of Rheumatology. Estérel, Quebec, Canada, May 2019.

5. Fedoruk C, Kwakkenbos L, Carrier M-E, Rice DB, Turner KA, Cañedo-Ayala M, Carboni-Jiménez A, Tao L, Harb S, Gholizadeh S, Aguila K, Thombs BD. The Scleroderma Patient-centered Intervention Network (SPIN): Engaging Patients in Rheumatology Research. 10th Annual Lady Davis Institute Scientific Retreat. Montreal, Quebec, Canada, May 2019.

6. Harb S, Cumin J, Rice DB, Peláez S, Thombs BD, Shrier I. Identifying Barriers and Facilitators to Physical Activity for People with Scleroderma: A Nominal Group Technique Study. 10th Annual Lady Davis Institute Scientific Retreat. Montreal, Quebec, Canada, May, 2019.

7. Tao L, Cumin J, Turner KA, Carrier M-E, Fedoruk C, Carboni-Jiménez A, Pépin M, Kwakkenbos L, Thombs BD. The Scleroderma Research Topics Survey for patients and health care professionals: A Scleroderma Patient-centered Intervention Network (SPIN) project. 10th Annual LDI Scientific Retreat. Montreal, Quebec, Canada, May 2019.

8. Kwakkenbos L, Carrier M-E, Boutron I, Welling J, Sauve M, van den Ende C, Schouffoer AA, Hudson M, Nguyen C, Rannou F, Thombs BD, Mouthon L, SPIN Investigators. Randomized feasibility trial of the Scleroderma Patient-centered Intervention Network Hand Exercise Program (SPIN-HAND). 2019 Canadian Rheumatology Association Annual Scientific Meeting. Montreal, Quebec, Canada, February-March, 2019.

9. Carboni-Jiménez A, Rice DB, Chiovitti M, Cañedo-Ayala M, Thombs BD. Caregiving intensity and perceived burden among informal caregivers of persons with systemic sclerosis compared to other chronic medical conditions. 2019 Canadian Rheumatology Association Annual Scientific Meeting. Montreal, Quebec, Canada, February-March, 2019.

10. Rice DB, Cañedo-Ayala M, Carboni-Jiménez A, Carrier M-E, Cumin J, Malcarne V, Hagedoorn M, Thombs BD, Caregiver Advisory Committee. Challenges and service preferences of informal caregivers of people with systemic sclerosis. 2019 Canadian Rheumatology Association Annual Scientific Meeting. Montreal, Quebec, Canada, February-March, 2019.

11. Gholizadeh S, Kwakkenbos L, Carrier M-E, Mills SD, Fox RS, Gottesman K, Roesch SR, Thombs BD, Malcarne VL. Latent profile analysis-derived typologies of systemic sclerosis patients using body image indicators: A Scleroderma Patient-centered Intervention Network (SPIN) Cohort Study. 2019 Canadian Rheumatology Association Annual Scientific Meeting. Montreal, Quebec, Canada, February-March, 2019. 

12. Harb S, Cumin J, Rice DB, Peláez S, Thombs BD, Shrier I. Use of the nominal group technique to identify barriers and facilitators to physical activity for people with scleroderma. 2019 Canadian Rheumatology Association Annual Scientific Meeting. Montreal, Quebec, Canada, February-March, 2019.

13. Tao L, Cumin J, Turner KA, Carrier M-E, Fedoruk C, Carboni-Jiménez A, Pépin M, Kwakkenbos L, Thombs BD. The Scleroderma Research Topics Survey for patients and health care professionals: A Scleroderma Patient-centered Intervention Network (SPIN) project. 2019 Canadian Rheumatology Association Annual Scientific Meeting. Montreal, Quebec, Canada, February-March, 2019.

14. Fedoruk C, Kwakkenbos L, Carrier M-E, Rice DB, Turner KA, Cañedo-Ayala M, Carboni-Jiménez A, Tao L, Harb S, Gholizadeh S, Aguila K, Thombs BD. The Scleroderma Patient-centered Intervention Network (SPIN): engaging patients in rheumatology research. 2019 Canadian Rheumatology Association Annual Scientific Meeting. Montreal, Quebec, Canada, February-March, 2019.

15. Turner KA, Kwakkenbos L, Cumin J, Carrier M-E, Boutron I, Bartlett SJ, Malcarne V, Mouthon L, Nielson WR, Welling J, Thombs BD. Factors influencing patient-reported willingness to participate in an online self-care intervention: A Scleroderma Patient-centered Intervention Network (SPIN) Cohort study. 2019 Canadian Rheumatology Association Annual Scientific Meeting. Montreal, Quebec, Canada, February-March, 2019.

16. Thombs BD, Dyas L, Pépin M, Razykov I, Aguila K, Carrier ME, Malcarne V, El-Baalbaki G, Platt R, Hudson M, Sauve M, Connolly K, Scleroderma Support Group Advisory Team. Feasibility trial of the Scleroderma Patient-centered Intervention Network Support Group Leader Education (SPIN-SSLED) Program. 2019 Canadian Rheumatology Association Annual Scientific Meeting. Montreal, Quebec, Canada, February-March, 2019.

17. Thombs BD, Kwakkenbos L, Carrier M-E, Rice DB, Fedoruk C, Turner K, Cañedo-Ayala M, Carboni-Jiménez A, Tao L, Harb S, Gholizadeh S, Aguila K, Sauve M, SPIN Investigators. Addressing Challenges to Patient-centered Care in a Rare Disease Context: The Scleroderma Patient-centered Intervention Network (SPIN). 2019 Canadian Rheumatology Association Annual Scientific Meeting. Montreal, Quebec, Canada, February-March, 2019.

 

ARTICLES IN PROFESSIONAL OR CULTURAL JOURNALS 2019

 

1. Nouveau programme de formation du SPIN pour les animateurs de groupes de soutien pour la sclérodermie /New SPIN Training Program for Scleroderma Support Group Leaders. Le Bulletin, Sclérodermie Québec, Spring-Summer 2019.

 

2. Neues SPIN-Trainingsprogramm für Leiter*innen von Sklerodermie-Selbsthilfegruppen. Scleroderma Liga e.V. Website News, Scleroderma Liga e.V. March 3, 2019.

 

3. Fedoruk C, Carrier ME, Kwakkenbos L, Thombs BD. The Scleroderma Patient-centered Intervention Network (SPIN): An Innovative Cohort-Based Initiative for Scleroderma. Journal of the Canadian Rheumatology Association, Canadian Rheumatology Association. 2019;29(1):14-15.

 

4. Online program on the way for people with rare autoimmune disease. JGH News, Jewish General Hospital Newspaper. January 2019.

 

INVITED SPEAKER PRESENTATIONS 2019

 

1. Thombs BD. The Scleroderma Patient-centered Intervention Network (SPIN). Conferences of Medical Researchers and Meetings with the Presidents of the Provincial Associations of Scleroderma. Montreal, Quebec, Canada. September 5, 2019.

2. Fedoruk C. The who, why, and how of getting involved in scleroderma research. Scleroderma Foundation Annual Patient Education Conference. Chicago, Illinois, USA, July 21, 2019.

 

3. Dyas, L. The SPIN Scleroderma Support Group Leader Education (SSLED) Program. Scleroderma Foundation Annual Patient Education Conference. Chicago, Illinois, USA, July 20, 2019.

 

4. Thombs BD. The Scleroderma Patient-centered Intervention Network (SPIN). Scleroderma Patient Forum and Education Day. Winnipeg, Manitoba. May 25, 2019.

 

5. Kwakkenbos L, Tao L, Carboni-Jiménez A, Turner KA, Aguila K, Boruff J, Ahmed S, Thombs BD. Perceived barriers and facilitators of using synchronous telerehabilitation of physical and occupational therapy in musculoskeletal disorders: A scoping review. The 9th Annual Edith Strauss Interactive Day. Montreal, Quebec, Canada, April 23, 2019.

 

6. Thombs BD. The Scleroderma Patient-centered Intervention Network. McGill Rare Disease Interest Group. rareDIG Rare Disease Day. Montreal, Quebec, Canada, February 28, 2019.

 

PEER-REVIEWED ORAL CONFERENCE PRESENTATIONS 2019

1. Harb S, Cumin J, Rice DB, Peláez S, 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. The 2019 Laurentian Conference of Rheumatology. Estérel, Quebec, Canada, May 2019.

Publication 2017

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.

 

PEER-REVIEWED ORAL CONFERENCE PRESENTATIONS 2018

 

1. Turner KA, Kwakkenbos L, Sanchez T, Carrier M-E, Mouthon L, Hudson M, Van den Ende C, Schouffoer A, Welling J, Sauvé M, Thombs BD*. The Association of sociodemographic and disease variables with hand function in systemic sclerosis.  Canadian Dermatology Association 93rd Annual Conference, Montreal, Quebec, Canada, June 2018.

 

2. Harel D, Ishihara M, Levis B, Thombs BD. Optimal methods for shortening patient-reported outcome measures. 12th International Conference on Health Policy Statistics. Charleston, South Carolina, USA. January 2018.

 

PEER-REVIEWED CONFERENCE POSTER PRESENTATIONS 2018

 

1. Gholizadeh S, Kwakkenbos L, Carrier ME, Mills SD, Fox RS, Jewett LR, Gottesman K, Roesch SC, Thombs BD, Malcarne VL. Identifying distinct subgroups of systemic sclerosis patients using body image indicators. 18th National Scleroderma Conference. Calgary, Alberta, September, 2018.

 

2. Cañedo-Ayala M, Rice DB, Levis B, Carrier M-E, Cumin J, Malcarne V, Hagedoorn M, Thombs BD, Caregiver Advisory Committee. Caregiver, care recipient, and caregiving factors associated with symptoms of depression among informal caregivers of people living with systemic sclerosis. 18th National Scleroderma Conference. Calgary, Alberta, September, 2018.

 

3. Rice DB, Cañedo-Ayala M, Carboni-Jiménez A, Carrier M-E, Cumin J, Malcarne V, Hagedoorn M, Thombs BD, Caregiver Advisory Committee. Challenges and support service preferences of informal caregivers of people with systemic sclerosis: a cross-sectional survey. 18th National Scleroderma Conference. Calgary, Alberta, September, 2018.

 

4. Turner KA, Kwakkenbos L, Sanchez T, Carrier M-E, Mouthon L, Hudson M, Van den Ende C, Schouffoer A, Welling J, Sauvé M, Thombs BD*. The association of sociodemographic and disease variables with hand function in systemic sclerosis. 18th National Scleroderma Conference. Calgary, Alberta, September, 2018.

 

5. Carboni-Jiménez A, Rice DB, Thombs BD. Caregiving intensity and perceived burden among caregivers of persons with systemic sclerosis compared to other chronic medical conditions. 18th National Scleroderma Conference. Calgary, Alberta, September, 2018.

 

6. Carboni-Jiménez A, Rice DB, Chiovitti M, & Thombs BD. Caregiving Intensity and Perceived Burden Among Informal Caregivers of Persons with Systemic Sclerosis Compared to Other Chronic Medical Conditions. The 18th Bi-annual National Scleroderma Canada Conference, Calgary, Alberta, September 2018.

 

7. Turner KA, Kwakkenbos L, Sanchez T, Carrier M-E, Mouthon L, Hudson M, Van den Ende C, Schouffoer A, Welling J, Sauvé M, Thombs BD. The association of sociodemographic and disease variables with hand function in systemic sclerosis. 18th National Scleroderma Conference. Calgary, Alberta, September, 2018.

 

8. Gholizadeh S, Kwakkenbos L, Carrier ME, Mills SD, Fox RS, Jewett LR, Gottesman K, Roesch SC, Thombs BD, Malcarne VL. Identifying distinct subgroups of systemic sclerosis patients using body image indicators. 18th National Scleroderma Conference, Calgary, Alberta, September, 2018.

 

9. Cañedo-Ayala M, Rice DB, Levis B, Carrier M-E, Cumin J, Malcarne V, Hagedoorn M, Thombs BD*, Caregiver Advisory Committee. Caregiver, care recipient, and caregiving ractors associated with symptoms of depression among informal caregivers of people living with systemic sclerosis. 18th National Scleroderma Conference, Calgary, Alberta, September, 2018.

 

10. Rice DB, Cañedo-Ayala M, Carboni-Jiménez A, Carrier M-E, Cumin J, Malcarne V, Hagedoorn M, Thombs BD, Caregiver Advisory Committee. Challenges and support service preferences of informal caregivers of people with systemic sclerosis: a cross-sectional survey, 18th National Scleroderma Conference. Calgary, Alberta, September, 2018.

 

11. Turner KA, Kwakkenbos L, Sanchez T, Carrier M-E, Mouthon L, Hudson M, Van den Ende C, Schouffoer A, Welling J, Sauvé M, Thombs BD. The association of sociodemographic and disease variables with hand function in systemic sclerosis. Canadian Dermatology Association 93rd Annual Conference, Montreal, Canada, June 2018.

 

12. Cañedo-Ayala M, Rice DB, Levis B, Carrier ME, Cumin J, Malcarne V, Hagedoorn M, Thombs BD*, Caregiver Advisory Committee. Caregiver Advisory Committee. Caregiver, care recipient, and caregiving factors associated with symptoms of depression among informal caregivers of people living with systemic sclerosis. 5th Annual Skin Research Group of Canada Conference, Montreal, Quebec, Canada, June 2018.

 

13. Carboni-Jiménez A, Rice DB, Thombs BD*. Caregiving intensity and perceived burden among informal caregivers of persons with systemic sclerosis compared to other chronic medical conditions. 5th Annual Skin Research Group of Canada Conference, Montreal, Quebec, Canada, June 2018.

 

14. Pepin M, Kwakkenbos L, Pelaez S, Carrier M-E, Malcarne VL, El-Baalbaki G, Thombs BD*. Reasons for attending support groups and organizational preferences: the North American Support Group Survey. 5th Annual Skin Research Group of Canada Conference, Montreal, Quebec, Canada, June 2018.

 

15. Cañedo-Ayala M, Rice DB, Levis B, Carrier M-E, Cumin J, Malcarne V, Hagedoorn M, Thombs BD, & The Caregiver Advisory Committee. Caregiver, care recipient, and caregiving factors associated with symptoms of depression among informal caregivers of people living with systemic sclerosis. The 2018 Laurentian Conference of Rheumatology, Estérel, Canada, May 2018.    

 

16. Carboni Jiménez A, Rice DB, Thombs BD. Examining Caregiver Intensity and Perceived Burden of Informal Caregivers to Persons with Chronic Medical Conditions: A Systematic Review. The 2018 Laurentian Conference of Rheumatology, Estérel, Canada, May 2018.

 

17. Carboni Jiménez A, Rice DB, Thombs BD. Examining Caregiver Intensity and Perceived Burden of Informal Caregivers to Persons with Chronic Medical Conditions: A Systematic Review. International Congress of Applied Psychology, Montreal, Quebec, Canada. June 2018.

 

18. Cañedo-Ayala M, Rice DB, Levis B, Carrier M-E, Cumin J, Malcarne V, Hagedoorn M, Thombs BD, Caregiver Advisory Committee. Caregiver, Care Recipient, and Caregiving Factors Associated with Symptoms of Depression among Informal Caregivers of People Living with Systemic Sclerosis. International Congress of Applied Psychology, Montreal, Quebec, Canada. June 2018.

 

19. Becetti K, Gordon JK, Nguyen J, Mancuso C, Kwakkenbos L, Carrier ME, Thombs BD, Spiera RF, SPIN Investigators. Rates and Predictors of Physical Therapy and Occupational Therapy Utilization in Systemic Sclerosis: A Scleroderma Patient-centered Intervention Network Cohort Study. The 5th Systemic Sclerosis World Congress, Bordeaux, France, February 2018.

 

20. Becetti K, Gordon JK, Nguyen J, Mancuso C, Kwakkenbos L, Carrier ME, Thombs BD, Spiera RF, SPIN Investigators. Mental Health Care in Systemic Sclerosis; Rates of Utilization and Associated Factors in the Scleroderma Patient-centered Intervention Network Cohort. The 5th Systemic Sclerosis World Congress, Bordeaux, France, February 2018.

 

21. Kwakkenbos L, Carrier ME, Boutron I, Welling J, Sauve M, van den Ende CHM, Schouffoer AA, Hudson M, Thombs BD, Mouthon L, and the SPIN Investigators. Randomized feasibility trial of the Scleroderma Patient-centered Intervention Network Hand Exercise Program (SPIN-HAND). The 5th Systemic Sclerosis World Congress, Bordeaux, France, February 2018.

 

22. Kwakkenbos L, Dougherty DH, Carrier ME, Salazar G, Assassi S, Baron M, Bartlett SJ, Furst DE, Gottesman K, van den Hoogen F, Malcarne VL, Mouthon L, Nielson WR, Sauvé M, Thombs BD, Mayes MD, and the SPIN Investigators. The Scleroderma Patient-Centered Intervention Network (SPIN) Cohort: baseline clinical features and comparison to other large scleroderma cohorts. The 5th Systemic Sclerosis World Congress, Bordeaux, France, February 2018.

 

23. Kwakkenbos L, Cumin J, Carrier M-E, Boutron I, Bartlett SJ, Malcarne V, Mouthon L, Nielson WR, Welling J, Thombs B.D. Factors Influencing Patient-reported Willingness to Participate in an Online Self-care Intervention: A Scleroderma Patient-centered Intervention Network (SPIN) Cohort Study. The 5th Systemic Sclerosis World Congress, Bordeaux, France, February 2018.

 

24. Pepin M, Kwakkenbos L, Pelaez S, Carrier M-E, Malcarne V, Gumuchian ST, Delisle VC, El-Baalbaki G, Thombs BD. Reasons for attending support groups and organizational preferences: The North American Support Group Survey. The 5th Systemic Sclerosis World Congress, Bordeaux, France, February 2018.

 

25. Turner KA, Kwakkenbos L, Sanchez T, Carrier M-E, Mouthon L, Hudson M, Van den Ende C, Schouffoer A, Welling J, Sauvé M, Thombs BD. The Association of Sociodemographic and Disease Variables with Hand Function in Systemic Sclerosis. The 5th Systemic Sclerosis World Congress, Bordeaux, France, February 2018.

 

26. Rice DB, Cañedo-Ayala M, Gumuchian ST, Hagedoorn M, Malcarne V, Thombs BD, & The Caregiver Advisory Committee. (2016). Focus Group Discussions to Inform the Development of Services for Informal Caregivers of Patients with Scleroderma. The 5thSystemic Sclerosis World Congress, Bordeaux, France, February 2018.

 

27. Rice DB, Cañedo-Ayala M, Carrier M-E, Cumin J, Malcarne V, Hagedoorn M, Thombs BD, & The Caregiver Advisory Committee. Challenges and Service Preferences of Informal Caregivers of People with Systemic Sclerosis. The 5thSystemic Sclerosis World Congress, Bordeaux, France, February 2018.

 

28. Cañedo-Ayala M, Rice DB, Levis B, Carrier M-E, Cumin J, Malcarne V, Hagedoorn M, Thombs BD, & The Caregiver Advisory Committee. Caregiver, Care Recipient, and Caregiving Factors Associated with Symptoms of Depression among Informal Caregivers of People Living with Systemic Sclerosis. The 5th Systemic Sclerosis World Congress, Bordeaux, France, February 2018.

 

ARTICLES IN PROFESSIONAL OR CULTURAL JOURNALS 2018

1. SPIN – Initiative zur Entwicklung von Unterstützungsprogrammen für Sklerodermie. Scleroderma Liga e.V. Website News,  Scleroderma Liga e.V. December 14, 2018.

2. Le SPIN-SHARE à la Conférence nationale sur la sclérodermie: Lancement de programmes de soutien axés sur les patients sclérodermiques/The SPIN-SHARE at the National Scleroderma Conference: Moving forward with patient-centrered support programs. Le Bulletin, Sclérodermie Québec, Fall-Winter 2018.

 

3. SPIN-SHARE at the National Scleroderma Conference: Moving Forward with Patient-centered Support Programs. Scleroderma Canada Newsletter, Scleroderma Canada. Winter 2018.

 

4. SPIN launches online platform to provide self-management tools. Lady Davis Institute Research Newsletter, the Lady Davis Institute for Medical Research. November 2018.

 

5. Scleroderma Patient-centered Intervention Network (SPIN): An International Patient-researcher Partnership. IMHA on the move! The Institute of Musculoskeletal Health and Arthritis, Canadian Institutes of Health Research, October 2018.

 

6. Carrier ME, Cumin J. Le projet SPIN-SHARE: Accessibilité gratuite aux programmes de soutien en ligne du RIPS/The SPIN-SHARE project: Making SPIN’s online support programs accessible for free. Le Bulletin, Sclérodermie Québec, Spring-Summer 2018.

 

INVITED SPEAKER PRESENTATIONS 2018

 

1. Gholizadeh S. The SPIN Scleroderma Support Group Leader Education (SSLED) Program. Scleroderma Foundation of

Southern California Annual Board Meeting. Marina Del Rey, California, USA. December 8, 2018.

 

2. Fedoruk C. The SPIN-SHARE Program. The Scleroderma Society of Ontario Patient Information Session. Ottawa, Ontario, Canada. November 27, 2018.

 

3. Thombs BD. The SPIN-SHARE Program. Scleroderma Canada Living with Scleroderma Patient Forum. Halifax, Nova Scotia, Canada. November 24, 2018.

 

4. Rice DB. SPIN-CARE: Caring for caregivers. Scleroderma Canada Living with Scleroderma Patient Forum. London, Ontario, Canada. November 11, 2018.

 

5. Thombs BD. The SPIN-SHARE Program. Scleroderma Canada Living with Scleroderma Patient Forum. London, Ontario, Canada. November 11, 2018.

 

6. Thombs BD. The Scleroderma Patient-centered Intervention Network – Support Group Leader Education Program (SPIN-SSLED). Scleroderma Foundation (USA) Monthly Chapter Meeting. Teleconference. October 4, 2018.

 

7. Kwakkenbos L. Scleroderma Research 101. 18th Bi-Annual National Scleroderma Conference. Calgary, Alberta, Canada. September 22, 2018.

 

8. Thombs BD. Making tough healthcare decisions. 18th Bi-Annual National Scleroderma Conference. Calgary, Alberta, Canada. September 22, 2018.

 

9. Thombs BD. The SPIN-SHARE Program. 18th Bi-Annual National Scleroderma Conference. Calgary, Alberta, Canada. September 22, 2018.

 

10. Kwakkenbos L. Managing fatigue. 18th Bi-Annual National Scleroderma Conference. Calgary, Alberta, Canada. September 21, 2018.

 

11. Rice DB. SPIN-CARE: Caring for caregivers. 18th Bi-Annual National Scleroderma Conference. Calgary, Alberta, Canada. September 21, 2018.

 

12. Thombs BD. Supporting Support Group Leaders: The SPIN Scleroderma Support Group Leader Education (SSLED) Program. 18th Bi-Annual National Scleroderma Conference. Calgary, Alberta, Canada. September 21, 2018.

 

13. Patient-focused research in scleroderma: The Scleroderma Patient-centered Intervention Network. 5th Annual Skin Research Group of Canada Conference. Montreal, Quebec, Canada. June 23, 2018.

 

14. Thombs BD, Kwakkenbos L. Addressing psychological concerns of newly diagnosed patients: Scleroderma Patient-centered Intervention Network programs. World Scleroderma Congress, Round-table Networking Meeting for Leaders of Patient Associations. Bordeaux, France, February 17, 2018.

Publication 2017

PEER-REVIEWED ORAL CONFERENCE PRESENTATIONS 2017

 

1. Kwakkenbos L. Novel approaches for pragmatic evaluations and dissemination of E-health interventions: the Scleroderma Patient-centered Intervention Network. 5th Association for Researchers in Psychology and Health (ARPH) Conference, Leiden, The Netherlands. Feb 2017.

 

PEER-REVIEWED CONFERENCE POSTER PRESENTATIONS 2017

 

1. Gholizadeh S, Kwakkenbos L, Carrier ME, Mills SD, Fox RS, Jewett LR, Gottesman K, Roesch SC, Thombs BD, Malcarne VL. Latent Profile Analysis-Derived Typologies of Systemic Sclerosis Patients Using Body Image Indicators: A Scleroderma Patient-Centered Intervention Network (SPIN) Cohort Study. ACR/ARHP Annual Meeting, San Diego, CA, USA. Nov 2017.

2. 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, and the 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. ACR/ARHP Annual Meeting, San Diego, CA, USA. Nov 2017.

 

3. Harel, D., Levis, A.W., Kwakkenbos, L., & Thombs, B.D. (2017) Using Optimal Test Assembly Methods to Shorten Patient-Reported Outcome Measures. ENAR Spring Meeting. Washington, DC.

4. Cañedo-Ayala M, Rice DB, Gumuchian ST, Thombs BD. Informal Caregivers for Scleroderma Focus Groups. 125th American Psychological Association Annual Convention, Washington, DC, USA. August 2017.

5. Cañedo-Ayala M, Rice DB, Gumuchian ST, Thombs BD. Informal Caregivers for Scleroderma Focus Groups. 78th Canadian Psychological Association Annual Convention, Toronto, Ontario, Canada. June 2017.

6. Pal NP, Gumuchian ST, Delisle VC, Thombs BD. The Scleroderma Support Group Leader Survey. 2017 Canadian Psychological Association Convention, Toronto, Ontario, Canada. June 2017.

 

7. Gumuchian ST, Delisle VC, Malcarne VL, El-Baalbaki G, Pelaez S, Jewett LR, Kwakkenbos L, Thombs BD, Scleroderma Support Group Team. The Scleroderma Support Group Non-Attenders Survey: A cross-sectional Study. 2017 Canadian Psychological Association Convention, Toronto, Ontario, Canada. June 2017.

8. Cañedo-Ayala M, Rice DB, Levis B, Carrier ME, Cumin J, Hagedoorn M, Thombs BD, the Caregiver Advisory Committee. Exploring Symptoms of Depression in Informal Caregivers of Persons with Scleroderma. Lady Davis Institute Scientific Retreat, Montreal, Quebec, Canada. May 2017.

9. Rice DB, Cañedo-Ayala M, Gumuchian ST, Thombs BD. Informal Caregivers for Scleroderma Focus Groups. Laurentian Conference of Rheumatology, Estérel, Quebec, Canada. May 2017.

 

ARTICLES IN PROFESSIONAL OR CULTURAL JOURNALS 2017

 

1. Rice DB, Jiménez Carboni A, Cañedo Ayala M, Thombs BD. Une étude du RIPS pour soutenir les aidant(e)s naturel(le)s/The Experience of Informal Caregivers: SPIN-CARE Supporting Caregivers. Le Bulletin, Sclérodermie Québec, Winter 2017.

 

2. Thombs BD, Kwakkenbos L, Carrier ME. Le RIPS a le vent dans les voiles. Le Petit Journal, Association des sclérodermiques de France. September 2017.

 

3. Thombs BD, Kwakkenbos L, Carrier ME. Le RIPS a le vent dans les voiles. Le Bulletin, Sclérodermie Québec. March 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.

Publication 2016

INVITED SPEAKER PRESENTATIONS 2016

 

1. Kwakkenbos L. Managing fatigue. 2016 Scleroderma National Conference, Scleroderma Society of Canada, Montreal, Quebec, Canada. Sept 17, 2016.

 

2. Jewett LR. Body image distress. 2016 Scleroderma National Conference, Scleroderma Society of Canada, Montreal, Quebec, Canada. Sept 17, 2016.

3. Delisle VC, Gumuchian S. Support groups. 2016 Scleroderma National Conference, Scleroderma Society of Canada, Montreal, Quebec, Canada. Sept 17, 2016.

 

4. Thombs B. Making tough healthcare decisions to optimize your health and well-being: A toolkit. Scleroderma Foundation Annual Patient Conference. New Orleans, Louisiana, USA. July 2016.

 

5. Delisle VC. The Scleroderma Support Group Survey: Understanding people's experiences with scleroderma support groups. Scleroderma Foundation Annual Patient Conference. New Orleans, Louisiana, USA. July 31, 2016.

6. Jewett LR, Gholizadeh S. Body image distress in scleroderma. Scleroderma Foundation Annual Patient Conference. New Orleans, Louisiana, USA. July 30, 2016.

 

7. Kwakkenbos L. Coping with the everyday challenges of scleroderma. 3rd Systemic Sclerosis World Congress. Lisbon, Portugal. February 2016.

 

8. Delisle VC. Do support groups help? 3rd Systemic Sclerosis World Congress. Lisbon, Portugal. February 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. 

 

PEER-REVIEWED ORAL CONFERENCE PRESENTATIONS 2016

 

1. Levis AW, Harel D, Kwakkenbos L, Thombs BD*. Using optimal test assembly methods for shortening patient-reported outcome measures: development and validation of the Cochin Hand Function Scale-6. Statistical Society of Canada Annual Meeting, St. Catharines, Ontario, Canada. May 2016.

 

PEER-REVIEWED CONFERENCE POSTER PRESENTATIONS 2016

 

1. Becetti K, Gordon JK, Nguyen J, Mancuso C, Kwakkenbos L, Carrier ME, Thombs BD, Spiera RF, SPIN Investigators. Rates and predictors of physical therapy and occupational therapy utilization in systemic sclerosis: a Scleroderma Patient-centered Intervention Network Cohort study. American College of Rheumatology/Association for Rheumatology Health Professionals Annual Scientific Meeting, Washington, DC, USA. November 2016.

 

2. Becetti K, Gordon JK, Nguyen J, Mancuso C, Kwakkenbos L, Carrier ME, Thombs BD, Spiera RF, SPIN Investigators. Mental health care in systemic sclerosis: rates of utilization and associated factors in the Scleroderma Patient-centered Intervention Network Cohort. American College of Rheumatology/Association for Rheumatology Health Professionals Annual Scientific Meeting, Washington, DC, USA. November 2016.

 

3. Azar M, Rice DB, Kwakkenbos L, Carrier ME, 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. American College of Rheumatology/Association for Rheumatology Health Professionals Annual Scientific Meeting, Washington, DC, USA. November 2016.

 

4. Becetti K, Gordon JK, Nguyen J, Mancuso C, Kwakkenbos L, Carrier M-E, Thombs BD, Spiera RF, and the SPIN Investigators. Mental Health Care in Systemic Sclerosis: Rates of Utilization and Associated Factors in the Scleroderma Patient-centered Intervention Network Cohort. 17th Annual National Scleroderma Conference, Scleroderma Society of Canada, Montreal, Quebec, Canada. September 2016.
 

5. Becetti K, Gordon JK, Nguyen J, Mancuso C, Kwakkenbos L, Carrier M-E, Thombs BD, Spiera RF, and the SPIN Investigators. Rates and Predictors of Physical Therapy and Occupational Therapy Utilization in Systemic Sclerosis: A Scleroderma Patient-centered Intervention Network Cohort Study. 17th Annual National Scleroderma Conference, Scleroderma Society of Canada, Montreal, Quebec, Canada. September 2016.

 

6. Gumuchian ST,Delisle VC, Peláez S, Carrier M-E, Jewett LR, El-Baalbaki G, Kwakkenbos L, Thombs BD, & Bartlett SJ. Exploring the sources of emotional distress and management strategies among people living with scleroderma through focus groups: A Scleroderma Patient-centered Intervention Network Study. 2016 Scleroderma National Conference, Scleroderma Society of Canada, Montreal, Quebec, Canada. September 2016.

 

7. Jewett LR, Kwakkenbos L, Carrier M-E, Malcarne VL, Bartlett SJ, Furst DE, Gottesman K, Mayes MD, Assassi S, Harcourt D, Williamson H, Johnson SR, Körner A, Steen V, Fox RS, Gholizadeh S, Mills SD, Rice DB, Thombs BD, SPIN Investigators. Examination of the Association of Sex and Race/Ethnicity with Appearance Concerns: A Scleroderma Patient-centered Intervention Network (SPIN) Cohort Study. 17th Annual National Scleroderma Conference, Scleroderma Society of Canada. Montreal, Quebec, Canada. September 17, 2016.

 

8. Rice DB, Thombs BD. Focus Group Discussions to Inform the Development of Services for Informal Caregivers of Patients with Scleroderma. 2016 Scleroderma National Conference, Scleroderma Society of Canada, Montreal, Quebec, Canada. September 2016.

9. Pepin MR, Delisle VC, Gumuchian ST, Malcarne VL, El-Baalbaki G, Pelaez S, Thombs BD, Scleroderma Support Group Team. The Scleroderma Support Group European Survey: Understanding people’s experiences with scleroderma support groups. 2016 Scleroderma National Conference, Scleroderma Society of Canada, Montreal, Quebec, Canada. September 2016.

10. Gumuchian ST, Delisle VC, Malcarne VL, El-Baalbaki G, Pelaez S, Jewett LR, Kwakkenbos L, Thombs BD, Scleroderma Support Group Team. The Scleroderma Support Group Non-Attenders Survey: A Cross-sectional Study. 2016 Scleroderma National Conference, Scleroderma Society of Canada, Montreal, Quebec, Canada. September 2016

11. Carrier ME, Kwakkenbos L, Thombs BD, SPIN Investigators. An International Collaboration to Collect Data and Develop Online Interventions for Scleroderma Patients and an Update from the Scleroderma Patient centered Intervention Network (SPIN). Scleroderma Foundation Annual Patient Conference. New Orleans, Louisiana, USA. July 2016.

 

12. Jewett LR, Kwakkenbos L, Carrier M-E, Malcarne VL, Bartlett SJ, Furst DE, Gottesman K, Mayes MD, Assassi S, Harcourt D, Williamson H, Johnson SR, Körner A, Steen V, Fox RS, Gholizadeh S, Mills SD, Rice DB, Thombs BD, SPIN Investigators. Examination of the Association of Sex and Race/Ethnicity with Appearance Concerns: A Scleroderma Patient-centered Intervention Network (SPIN) Cohort Study. Scleroderma Foundation Annual Patient Conference. New Orleans, Louisiana, USA. July 2016.

 

13. 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). Scleroderma Foundation Annual Patient Conference. New Orleans, Louisiana, USA. July 2016.

14. Delisle VC, Gumuchian ST, Malcarne VL, El-Baalbaki G, Pelaez S, Thombs, BD. The Scleroderma Support Group Survey: Understanding people's experiences with scleroderma support groups. Scleroderma Foundation Annual Patient Conference. New Orleans, Louisiana, USA. July 2016.

15. Jewett LR, Kwakkenbos L, Carrier M-E, Malcarne VL, Steele RJ, Gottesman K, Thombs BD, and the SPIN Investigators. Confirmatory Factor Analysis and Assessment of Differential Item Functioning of the Satisfaction with Appearance Scale (SWAP) in Systemic Sclerosis: A Comparison across Sex, Race/Ethnicity, and Disease Subtype. Appearance Matters 7, London, UK. June 2016.

16. Gumuchian ST, Delisle VC, Malcarne VL, El-Baalbaki G, Pelaez S, Jewett LR, Kwakkenbos L, Thombs BD, The Scleroderma Support Group Team. The Scleroderma Support Group Non-Attenders Survey: A Cross-sectional Study. 47th Laurentian Conference of Rheumatology, l'Estérel, Quebec, Canada, May 2016.

17. Azar M, Rice D, Kwakkenbos L, Carrier ME, Shrier I, Hudson M, Thombs BD, SPIN Investigators. Exercise Habits and Associated Factors in Scleroderma: A Scleroderma Patient-centered Intervention Network (SPIN) Cohort Study. 4th Systemic Sclerosis World Congress, Lisbon, Portugal. February 2016.

18. Carrier ME, ​Kwakkenbos L, Thombs BD, SPIN Investigators. An International Collaboration to Collect Data and Develop Online Interventions for Scleroderma Patients and an Update from the Scleroderma Patient-centered Intervention Network (SPIN). 4th Systemic Sclerosis World Congress, Lisbon, Portugal. February 2016.

19. Delisle VC, Gumuchian ST, Malcarne VL, El-Baalbaki G, Pelaez S, Thombs BD. The Scleroderma Support Group Team. The Scleroderma Support Group Survey: Understanding People’s Experiences with Scleroderma Support Groups. 4th Systemic Sclerosis World Congress, Lisbon, Portugal. February 2016.

 

20. 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: Results from the Scleroderma Patient-centered Intervention Network Cohort. 4th Systemic Sclerosis World Congress, Lisbon, Portugal. February 2016.

 

21. Gumuchian ST, Delisle VC, Peláez S, Carrier ME, Jewett L, El-Baalbaki G, Kwakkenbos L, Thombs BD, Bartlett SJ. Exploring the Sources of Emotional Distress and Management Strategies among People Living with Scleroderma through Focus Groups: A Scleroderma Patient-centered Intervention Network Study. 4th Systemic Sclerosis World Congress, Lisbon, Portugal. February 2016.

 

22. Kwakkenbos L, Thombs BD, Bartlett SJ, Carrier ME, Hudson M, Mouthon L, Malcarne V, Sauve M, Khanna D, SPIN Investigators. Associations of Clinical Disease Characteristics with PROMIS-29 Domains: A Scleroderma Patient-Centered Intervention Network (SPIN) Cohort Study. 4th Systemic Sclerosis World Congress, Lisbon, Portugal. February 2016.

 

23. 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: A Scleroderma Patient-Centered Intervention Network (SPIN) Cohort Study. 4th Systemic Sclerosis World Congress, Lisbon, Portugal. February 2016.

 

24. Mills SD, Gholizadeh S, Fox RS, Jewett LR, Carrier ME, Kwakkenbos L, Gottesman K, Roesch SC, Thombs BD, Malcarne VL, the 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. 4th Systemic Sclerosis World Congress, Lisbon, Portugal. February 2016.

 

25. 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 Scleroderma Patient-Centered Intervention Network Cohort Study. 4th Systemic Sclerosis World Congress, Lisbon, Portugal. February 2016. Poster Prize (500 euros)

Publication 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.

 

INVITED SPEAKER PRESENTATIONS 2015

1. Challenges in rare disease research. iSPIN: Combining Forces. Vrije Universiteit, Amsterdam, the Netherlands, October 2, 2015.

 

2. Gholizadeh S, Jewett LR. Body image distress in scleroderma. 2015 Scleroderma National Conference, Scleroderma Society of Canada, Hamilton, Ontario, Canada. September 19, 2015.

 

3. Delisle VC, Gumuchian ST. The Scleroderma Support Group Survey: Understanding people’s experiences with scleroderma. 2015 Scleroderma National Conference, Scleroderma Society of Canada, Hamilton, Ontario, Canada. September 19, 2015.

4. Empowering patients with rare diseases: The Scleroderma Patient-centered Intervention Network. Canadian Organization for Rare Diseases, Rare Disease Day Conference 2015. Toronto, Ontario, Canada. March 7, 2015.

Publication 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.

Publication 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 

 

ARTICLES IN PROFESSIONAL OR CULTURAL JOURNALS 2013

 

1. Sauve M. Rare but not alone: the new face of rare disorders in Canada. National Post, Oct 2013 

2. Milette, Katherine, An Update on SPIN’s Online Self-Management Program, The Scleroderma Connection, Scleroderma Society of Canada, Winter 2013, p.4. 

3. The Scleroderma Patient-centered Intervention Network (SPIN), Scleroderma Manitoba, Fall 2013. 

4. International Collaboration Working to Improve the Lives of Those Living with Scleroderma, Scleroderma Voice, Fall 2013, p.13-14. 

5. Frketich J. Scleroderma: A ‘Lonely and frightening’ disease, Hamilton Spectator, September 26, 2013.

6. Milette K. An Update on SPIN’s Online Self-Management Program, Sclerodata, Scleroderma Association of BC, Spring 2013, p. 9. 

7. SPIN Research Group, Coping with Stress, The Scleroderma Connection, Scleroderma Society of Canada, Spring 2013, p.4. 

8. The Scleroderma Patient-centered Intervention Network (SPIN), Scleroderma Association of Manitoba, February 2013.  

 

LOCAL SCIENTIFIC PRESENTATIONS 2013

 

1. Thombs BD. Delivering patient-centered care in a rare disease context: the Scleroderma Patient-centered Intervention Network. Jewish General Hospital, Department of Psychiatry Research Day, Montreal, Quebec, Canada. April 26, 2013. 

2. Thombs BD. The Scleroderma Patient-centered Intervention Network (SPIN): an international partnership to develop, test, and deliver psychosocial and rehabilitation services in a rare disease context. Lady Davis Institute for Medical Research, Principal Investigator Talk Series, Montreal, Quebec. April 10, 2013. 

3. Thombs BD. Using the cohort multiple randomized controlled trial (cmRCT) design in a rare disease context: the Scleroderma Patient-centered Intervention Network. Jewish General Hospital, Lady Davis Institute for Medical Research, Centre for Clinical Epidemiology and Community Studies. Montreal, Quebec, Canada. April 9, 2013. 

4. Thombs BD. Using a cohort trial design in a rare disease context: the Scleroderma Patient-centered Intervention Network. Montreal Chest Institute. Respiratory Epidemiology and Clinical Research Unit. Montreal, Quebec, Canada. February 1, 2013.

 

PEER-REVIEWED CONFERENCE POSTER PRESENTATIONS 2013

 

1. Razykov I, Delisle VC, El-Baalbaki G, Kwakkenbos L, Thombs BD, Bartlett SJ. Developing an Internet-based intervention for coping with emotions and stress in scleroderma: A qualitative study. 2013 Scleroderma Canada Congress, Hamilton, Canada. Sep 2013. 

2. Milette K, Mendelson C, Khanna D, Nielson W, Thombs BD. The SPIN self-management program for scleroderma: Learning from personal experiences (a preliminary look). Scleroderma Canada Congress, Hamilton, Ontario. Sep 2013. 

 

INVITED SPEAKER PRESENTATIONS 2013

 

1. Thombs BD. How can direct patient collaboration increase relevance and value of research projects: the Scleroderma Patient-Centered Intervention Network. Canadian Organization for Rare Disorders 5th Rare Disease Day Conference. Toronto, Ontario, Canada. February 28, 2013. 

2. Thombs BD. The Scleroderma Patient-centered Intervention Network (SPIN): an international partnership to develop, test, and deliver psychosocial and rehabilitation services. Mexican College of Rheumatology, National Institute of Medical Sciences and Nutrition, Mexico City, Mexico. July 3, 2013.

3. Kwakkenbos L. The Scleroderma Patient-centered Intervention Network (SPIN). Scleroderma Society UK Annual General Meeting, London, United Kingdom, June 29, 2013.

4. Kwakkenbos L. A Novel Approach for Pragmatic Evaluations of Psychological Interventions: the Cohort Multiple Randomized Controlled Trial (cmRCT) Design. Center for Appearance Research, University of the West of England, Bristol, United Kingdom, June 28, 2013.

5. Kwakkenbos L, Thombs BD. Novel approaches for evaluating psychological interventions: the cohort multiple randomized controlled trial (cmRCT) design. Canadian Psychological Association Convention, Quebec City, Canada. Jun 2013. 

6. Thombs BD. The Scleroderma Patient-centered Intervention Network (SPIN): an international partnership to develop, test, and deliver psychosocial and rehabilitation services in a rare disease context. Institut Cochin, Institute de Recherche biomédicale, Paris, France. January 18, 2013.

7. Thombs BD. The Scleroderma Patient-centered Intervention Network. Scleroderma Society of Canada, 14th Annual Conference. Hamilton, Ontario, Canada. September 28, 2013.

 

PEER-REVIEWED ORAL CONFERENCE PRESENTATIONS 2013

 

1. Kwakkenbos L, Thombs BD. Novel approaches for evaluating psychological interventions: the cohort multiple randomized controlled trial (cmRCT) design. Canadian Psychological Association Convention, Quebec City, Canada. Jun 2013.

Publication 2012

ARTICLES IN PROFESSIONAL OR CULTURAL JOURNALS 2012

 

1. Jewett,L. The Scleroderma Patient-centered Intervention Network (SPIN), Sclerodata, Scleroderma Association of BC, Summer 2012, p.7. 

2. Thombs B.The Scleroderma Patient-centered Intervention Network (SPIN), Scleroderma Report, Scleroderma Society of Ontario Newsletter, Fall 2011-Winter 2012. 

 

PEER-REVIEWED ORAL CONFERENCE PRESENTATIONS 2012

 

1. Thombs BD. The Scleroderma Patient-centered Intervention Network. 43rd Laurentian Conference of Rheumatology. Tremblant, Quebec, Canada. May 11, 2012. 

 

INVITED SPEAKER PRESENTATIONS 2012

 

1. Thombs BD. Scleroderma Patient-centered Intervention Network (SPIN). Scleroderma Society of Canada, 13th Annual Conference. Vancouver, British Columbia, Canada. September 28, 2012. 

2. Thombs BD. The Scleroderma Patient-centered Intervention Network. 2012 Rare Disease Day Conference: Innovations in Research, Therapies and Policy for Rare Disorders.Canadian Organization for Rare Disorders. Ottawa, Ontario, Canada. March 1, 2012. 

3. Thombs BD. Using the cmRCT model in a rare disease context: the Scleroderma Patient-centered Intervention Network. Cohort Multiple Randomised Controlled Trial (cmRCT) Design Workshop. The University of Sheffield, School of Health and Related Research, Public Health Section, Sheffield, United Kingdom. July 6, 2012. 

4. Jewett LR. The Scleroderma Patient-centered Intervention Network: internet-based management of body image distress. Scleroderma Educational Forum. Scleroderma Society of Ontario / Scleroderma Foundation. Niagara Falls, New York, USA. October 20, 2012. 

5. Jewett LR. “SPIN” – Managing depression and body image. Scleroderma Society of Canada, 13th Annual Conference. Vancouver, British Columbia, Canada. September 29, 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.

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