Publications 2019

PEER-REVIEWED CONFERENCE POSTER PRESENTATIONS 2019

1. 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.

2. 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.

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 service preferences of informal caregivers of people with systemic sclerosis. 2019 Canadian Rheumatology Association Annual Scientific Meeting. Montreal, Quebec, Canada, February-March, 2019.

4. 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. 

5. 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.

6. 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.

7. 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.

8. 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.

9. 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.

10. 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.

Publications 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.

Publications 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.

Publications 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)

Publications 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.

 

Publications 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

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.