Publications 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. 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.

2. 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.

3.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.

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

5. 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.

6. 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.

7. 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. Thombs BD. Le RIPS a le vent dans les voiles. Le Bulletin, Sclérodermie Québec, March 2017.

PUBLISHED PEER-REVIEWED ARTICLES 2017

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

2. Gumuchian ST, Delisle VC, Kwakkenbos L, Pépin M, Carrier M-E, Malcarne CL, Peláez S, El-Baalbaki G, Thombs BD, Scleroderma Support Group Project Advisory Team. Reasons for attending support groups and organizational preferences: the European Scleroderma Support Group Members Survey. The Patient - Patient–Centered Outcomes Research.

3. 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.

4. 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. 

 

Publications 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)

Publications 2015

PEER-REVIEWED ORAL CONFERENCE PRESENTATIONS 2015

1.Kwakkenbos L, Thombs BD, Bartlett S, Hudson M, Mouthon L, Malcarne V, Sauve M, Khanna D, SPIN investigators. The PROMIS-29 in systemic sclerosis: associations with clinical characteristics. PHO Inaugural Meeting, Philadelphia, USA. May 2015.

2. Gholizadeh S, Mills SD, Fox RS, Jewett LR, Carrier ME, Kwakkenbos L, Gottesman K, Roesch SC, Thombs BD, Malcarne VL, SPIN Investigators. A Psychometric Analysis of the Social Interaction Anxiety Scale (SIAS-6) in Systemic Sclerosis: Preliminary results from the Scleroderma Patient-centered Intervention Network (SPIN) Cohort. American College of Rheumatology/Association for Rheumatology Health Professionals Annual Scientific Meeting, San Francisco, CA, USA. Nov 2015.

3.Bartlett SJ, Carrier ME, Correira H, Kwakkenbos L, Thombs BD, SPIN investigators. PROMIS-29 en français: coordinating translation efforts in Canada and France for a universal approach. PHO Inaugural Meeting, Philadelphia, USA. May 2015.

4. Kwakkenbos L, Thombs BD, Bartlett SJ, Carrier ME, Hudson M, Mouthon L, Malcarne V, Sauve M, Khanna D, SPIN investigators. The PROMIS-29 in Systemic Sclerosis: Associations with Clinical Characteristics in the Scleroderma Patient-Centered Intervention Network (SPIN) Cohort. American College of Rheumatology/Association for Rheumatology Health Professionals Annual Scientific Meeting, San Francisco, CA, USA. Nov 2015.

PEER-REVIEWED CONFERENCE POSTER PRESENTATIONS 2015

1. Kwakkenbos L, Thombs BD, Bartlett SJ, Carrier ME, Hudson M, Mouthon L, Malcarne V, Sauve M, Khanna D, SPIN investigators. Construct Validity of the PROMIS-29 in Systemic Sclerosis: Results from the Scleroderma Patient-Centered Intervention Network (SPIN) Cohort. American College of Rheumatology/Association for Rheumatology Health Professionals Annual Scientific Meeting, San Francisco, CA, USA. Nov 2015.

2. Mills SD, Gholizadeh S, Fox RS, Jewett LR, Carrier ME, Kwakkenbos, L, Gottesman K, Roesch SC, Thombs BD, Malcarne VL, SPIN Investigators. Psychometric Properties of the Social Appearance Anxiety Scale in Patients with Limited and Diffuse Systemic Sclerosis: Analysis from the Scleroderma Patient-centered Intervention Network Cohort. American College of Rheumatology/Association for Rheumatology Health Professionals Annual Scientific Meeting, San Francisco, CA, USA. Nov 2015.

3. Azar M, Rice D, Hudson M, Kwakkenbos L, Thombs BD, SPIN Investigators. Exercise Habits and its Associated Factors in Scleroderma. 2015 Scleroderma National Conference, Scleroderma Society of Canada, Hamilton, Ontario, Canada. September 2015.

4. Carrier M-E, Kwakkenbos L, Thombs BD, SPIN investigators. An international collaboration to collect data and develop online interventions for scleroderma patients: the Scleroderma Patient-centered Intervention Network (SPIN). 2015 Scleroderma National Conference, Scleroderma Society of Canada, Hamilton, Ontario, Canada. September 2015.

5. Gumuchian S, Delisle V, Razykov I, Carrier M-E, El-Baalbaki G, Kwakkenbos L, Thombs BD, Bartlett SJ. Using focus group discussions to develop an online resource to help individuals with scleroderma manage emotional distress. 2015 Scleroderma National Conference, Scleroderma Society of Canada, Hamilton, Ontario, Canada. September 2015.

6. Kwakkenbos L, Thombs BD, Bartlett S, Hudson M, Mouthon L, Malcarne V, Sauve M, Khanna D, SPIN investigators. Measuring quality of life in scleroderma using the PROMIS-29 measure: evidence from the Scleroderma Patient-centered Intervention Network (SPIN). 2015 Scleroderma National Conference, Scleroderma Society of Canada, Hamilton, Ontario, Canada. September 2015.

7. Milette K, Nielson W, Khanna D, Thombs BD. Learning from personal experiences of people coping with and managing scleroderma. 2015 Scleroderma National Conference, Scleroderma Society of Canada, Hamilton, Ontario, Canada. September 2015.

8. Riehm KE, Kwakkenbos L, Carrier ME, Nielson W, Nielsen K, Thombs BD, SPIN Investigators. Can the Self-Efficacy to Manage Chronic Disease Scale be used to evaluate self-efficacy in patients with systemic sclerosis? A psychometric analysis in the Scleroderma Patient-Centered Intervention Network (SPIN) Cohort. 2015 Scleroderma National Conference, Scleroderma Society of Canada, Hamilton, Ontario, Canada. September 2015.

9. Kwakkenbos L, Thombs BD, Bartlett S, Hudson M, Mouthon L, Malcarne V, Sauve M, Khanna D, SPIN investigators. Construct validity of the PROMIS-29 in systemic sclerosis: preliminary results from the Scleroderma Patient-centered Intervention Network (SPIN) Cohort. EULAR 2015, Rome, Italy. June 2015. 

10.Gumuchian S, Delisle V, Razykov I, Carrier ME, El-Baalbaki G, Kwakkenbos L, Thombs BD, Bartlett S. Focus groups to inform the development of a scleroderma emotional distress internet-based coping tool. 76th Canadian Psychological Association Convention, Ottawa, Canada. Jun 2015.

11.Kwakkenbos L, Thombs BD, Bartlett S, Hudson M, Mouthon L, Malcarne V, Sauve M, Khanna D, SPIN investigators. Construct validity of the PROMIS-29 in systemic sclerosis: preliminary results from the Scleroderma Patient-centered Intervention Network (SPIN) Cohort. PHO Inaugural Meeting, Philadelphia, USA. May 2015.

12.Kwakkenbos L, Thombs BD. Novel approaches for pragmatic evaluations and dissemination of E-health interventions: the Scleroderma Patient-centered Intervention Network. 4th Association for Researchers in Psychology and Health (ARPH) Conference, Ghent, Belgium. Feb 2015.

 

ARTICLES IN PROFESSIONNAL OR CULTURAL JOURNALS 2015

1. Carrier ME, Kwakkenbos L. Introducing the Scleroderma Patient-centered Intervention Network (SPIN ) Co-Director and Coordinator. The Scleroderma Reporter. Scleroderma Society of Ontario. Spring/Summer 2015

2. Gumuchian S, Delisle VC, Thombs BD. Illuminating the support group experience: Helping leaders get the support they need. The Scleroderma Reporter. Scleroderma Society of Ontario. Spring/Summer 2015.

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.

Publications 2014

INVITED SPEAKER PRESENTATIONS 2014

1. Kwakkenbos L. Overcoming barriers to evaluating psychological interventions: the cohort multiple randomized controlled trial (cmRCT) design. Appearance Matters: An International Conference about the Impact of Appearance in our Society, Kristianstad, Sweden, Dec 2014.

2. Kwakkenbos L. Ethical considerations in pre-consent randomization models. Trials within Cohorts Symposium, London School of Hygiene & Tropical Medicine, November 10-11, 2014.

3. Thombs BD. The cmRCT design in a rare disease context: The Scleroderma Patient-centered Intervention Network. Trials within Cohorts Symposium, London School of Hygiene & Tropical Medicine, November 10-11, 2014.

4. Thombs BD. A hydrid cohort-trial design for internet-based outcome data collection: The Scleroderma Patient-centered Intervention Network. Lupus 2014, Quebec City, Quebec, Canada, September 2014.

 

LOCAL SCIENTIFIC PRESENTATIONS 2014

1.Thombs BD. Using the cohort multiple randomized controlled trial (cmRCT) design for pragmatic intervention trials: An example from a rare disease context. Réseau de recherche en interventions en sciences infirmières du Québec, Montreal, Quebec, Canada. January 15, 2014.


ARTICLES IN PROFESSIONAL OR CULTURAL JOURNALS 2014

1.Thombs BD. Towards better care for scleroderma: An update from the Scleroderma Patient-centered Intervention Network. The Scleroderma Connection, Scleroderma Society of Canada, Fall 2014, p. 6-7.

 

PEER-REVIEWED ORAL CONFERENCE PRESENTATIONS 2014

1. Jewett LR, Delisle VC, Mendelson C, Malcarne VL, Hudson M, Thombs BD. Visible differences from medical illness: body image concerns in scleroderma. In symposium (Malcarne VL, discussant): Overcoming barriers to developing, testing, and disseminating interventions for body image distress in a rare disease context: the Scleroderma Patient-centered Intervention Network (SPIN). Appearance Matters 6, Bristol, UK, July 2014. 

2. Welling J, Thombs BD. Patient organizations in the Scleroderma Patient-centered Intervention Network (SPIN): Partner, expert and advocate. In symposium (Malcarne VL, discussant): Overcoming barriers to developing, testing, and disseminating interventions for body image distress in a rare disease context: the Scleroderma Patient-centered Intervention Network (SPIN). Appearance Matters 6, Bristol, UK, July 2014. 

3. Williamson H, Malcarne VL. Delivering an online disease-specific body image intervention: examples from the SPIN Body Image Project. In symposium (Malcarne VL, discussant): Overcoming barriers to developing, testing, and disseminating interventions for body image distress in a rare disease context: the Scleroderma Patient-centered Intervention Network (SPIN). Appearance Matters 6, Bristol, UK, July 2014. 

4. Kwakkenbos L, Thombs BD. Leveraging an innovative trial design for pragmatic evaluations of psychological interventions: the cohort multiple randomized controlled trial (cmRCT) design. In symposium (Malcarne VL, discussant): Overcoming barriers to developing, testing, and disseminating interventions for body image distress in a rare disease context: the Scleroderma Patient-centered Intervention Network (SPIN). Appearance Matters 6, Bristol, UK, July 2014. 

5. Kwakkenbos L. Measurement considerations in cross-national studies: Translation and assessment of metric equivalencies. In symposium (Geenen R and Redmond A, Chairs). The Scleroderma Patient-centered Intervention Network (SPIN): Meeting the challenges of research into a rare disease. European League Against Rheumatism Congress 2014, Paris, France, June 14, 2014. 

6. Mouthon L. Delivering an online disease-specific rehabilitation intervention: Examples from the SPIN Hand Project In symposium (Geenen R and Redmond A, Chairs). The Scleroderma Patient-centered Intervention Network (SPIN): Meeting the challenges of research into a rare disease. European League Against Rheumatism Congress 2014, Paris, France, June 14, 2014. 

7. Thombs BD. Leveraging an innovative trial design for a rare disease context: The cohort multiple RCT (cmRCT) design. In symposium (Geenen R and Redmond A, Chairs). The Scleroderma Patient-centered Intervention Network (SPIN): Meeting the challenges of research into a rare disease. European League Against Rheumatism Congress 2014, Paris, France, June 14, 2014. 

PEER-REVIEWED CONFERENCE POSTER PRESENTATIONS 2014

1. Kwakkenbos L, Thombs BD. Overcoming barriers to developing, testing, and disseminating psychosocial and rehabilitation interventions in a rare disease context: the Scleroderma Patient-centered Intervention Network (SPIN). International Conference on Rare Disease and Orphan Drugs (ICORD) 2014 Annual Meeting, Ede, the Netherlands. Oct 2014.  

2. Kwakkenbos L, Jewett LR, Thombs BD. Overcoming barriers to developing, testing, and disseminating psychosocial and rehabilitation interventions in a rare disease context: the Scleroderma Patient-centered Intervention Network (SPIN). International Society for Research on Internet Interventions 7th Scientific Meeting, Valencia, Spain. Oct 2014. 

3. Milette K, Mendelson C, Khanna D, Nielson W, Thombs BD. The SPIN self-management program for scleroderma: Learning from personal experiences (preliminary analysis). 122nd American Psychological Association convention, Washington, DC. Aug 2014. 

4. Kwakkenbos L, Jewett LR, Thombs BD. An international collaboration to conduct large-scale trials of non-pharmacological interventions in scleroderma: The Scleroderma Patient-centered Intervention Network (SPIN). 45th Laurentian Conference of Rheumatology, Tremblant, Quebec, Canada. May 2014.  

5. Malcarne VL, Mayes MD, Assassi S, Fox RS, Gholizadeh S, Gottesman K, Harcourt D, Kwakkenbos L, Jewett LR, Mendelson C, Mills SD, Rumsey N, Strohauer T, Williamson H, Thombs BD. Developing an intervention for body image distress in systemic sclerosis: An update from the Scleroderma Patient-centered Intervention Network (SPIN). 3rd Systemic Sclerosis World Congress, Rome, Italy. Feb 2014. 

6. Kwakkenbos L, Jewett LR, Thombs BD.An international collaboration to conduct large-scale trials of non-pharmacological interventions in scleroderma: The Scleroderma Patient-centered Intervention Network (SPIN). 3rd Systemic Sclerosis World Congress, Rome, Italy. Feb 2014.

Publications 2013

PUBLISHED PEER-REVIEWED ARTICLES 2013

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

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.

Publications 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.