A correspondence on patient-researcher co-presentation of research results, led by team member Vanessa Cook, and co-authored by patient partner Amy Gietzen, team member Elsa-Lynn Nassar, SPIN collaborator Dr. Amanda Wurz, and Dr. Brett Thombs, has recently been published in The Lancet Rheumatology, the world's top rheumatology journal. The piece comments on SPIN's piloted method of co-presenting at The 2021 National Scleroderma Conference and highlights how collaborating with patients may improve the dissemination of research results to patients living with scleroderma and ensure that research is meaningful to those it affects.  Click here to read the full correspondence.

We are excited to share that team member Elsa-Lynn Nassar has been admitted to McGill’s PhD program in Clinical Psychology and will continue with the team for the next several years! Elsa will begin the program in September 2023, and her research will focus on improving knowledge translation and patient engagement in health (including mental health) research. Congratulations, Elsa!

Dr. Sarah Markham, a patient partner on our team, recently published an opinion piece in BMJ in response to our team’s latest publication titled “Comparison of mental health symptoms before and during the covid-19 pandemic: evidence from a systematic review and meta-analysis of 134 cohorts.” The article emphasized the importance of high-quality research in the field of mental health. Read the full article here.

A living systematic review on COVID-19 mental health changes, led by Sheryl and co-authored by other LSR members, has been published in the BMJ. This review evaluated longitudinal studies that compared mental health outcomes prior to the pandemic and during COVID-19. The team analyzed data from 134 cohorts of people from 31 countries. They found that there are no or minimal changes in mental health among the general population and 11 subgroups (e.g., age groups, sex or gender, pre-existing medical or mental health conditions). One exception is among women for whom there were consistent negative small changes across outcome domains. The results suggest that mental health in COVID-19 is more nuanced than previously assumed and that this is largely a story of resilience. To read the paper in BMJ [LINK] and view the infographic [LINK], click on the provided links

Dr. Wu and the team compared the accuracy of the 7-item Hospital Anxiety and Depression Scale Depression subscale (HADS-D) with the 14-item full scale (HADS-T) to screen for depression. In this study, 20,700 participants (2,285 major depression cases) from 98 studies were included. We found that sensitivity and specificity of the HADS-T were not superior to the HADS-D for detecting major depression. Thus, using the full 14-item HADS-T for depression screening would require additional time and patient burden without improving accuracy. Read more about the publication here: https://pubmed.ncbi.nlm.nih.gov/36689386/.

The SPIN team has been awarded a 1-year $20,000 Planning and Dissemination Grant-Institute Community Support for its project titled “Towards Understanding Pain Sources, Patterns, and Barriers to Effective Management in Systemic Sclerosis: A Patient-Researcher Partnership Musculoskeletal Health and Arthritis.” Thanks to team member Elsa-Lynn Nassar for her leadership on the proposal. This project will involve SPIN researchers and patient partners to jointly develop a tool to assess sources of pain in systemic sclerosis (SSc), pain management services, and barriers to improving pain management. Congrats to the SPIN team!

We are excited to share that Marc Parsons (McGill PhD candidate in biostatistics and DEPRESSD team member) has been granted a McGill University Health Centre Research Institute (RI-MUHC) 2023 Studentship for his proposed thesis work entitled: Using flexible regression methods to analyse depression trajectories in an individual participant data meta-analysis of pregnant and postpartum women. This studentship was awarded based on the basis of academic performance, publications, research experience, training environment, and the merits of the proposed research project.

The SPIN Team was awarded a $100,000 Arthritis Society of Canada Innovation Grant for its project titled “A Scleroderma Patient-centered Intervention Network patient-researcher partnership to understand pain sources, patterns, and barriers to effective management in systemic sclerosis”. Thanks to team member Elsa-Lynn Nassar for her work on the proposal. The project will involve a patient-researcher partnership to jointly develop a pain assessment tool for scleroderma and administer the final version of the tool to the SPIN cohort. This will provide improved techniques for pain assessment in scleroderma and improved understanding of the multi-faceted nature of scleroderma pain, which is critical for improving management. Congrats to the SPIN Team!

Palak Desai recently joined the team as a part-time research assistant. She’s pursuing a M.Sc. in Public Health at McGill University. Palak’s research interests involve addressing challenges related to social aspects of health. Click here to read more about Palak!

The SPIN Scleroderma Support group Leader Education (SPIN-SSLED) Program Trial results were published in Orphanet Journal of Rare Diseases. In the trial, 148 existing or candidate peer support group leaders were randomised to the 13-week videoconference-based program or to waitlist, and primary outcome data were provided by 146 (99%) participants. Satisfaction with the program was extremely high (30.3 out of possible 32 points), and participants attended an average of 11.4 out of 13 sessions. The program improved support group leader self-efficacy substantially, as well as leader volunteer satisfaction. The SPIN-SSLED Program continues to be offered by SPIN in collaboration with our patient organization partners. Link

A meta-research review led by team member Elsa-Lynn Nassar and co-authored by other team members, including Brooke Levis, Marieke Neyer, and Danielle Rice, was recently published in the International Journal of Methods in Psychiatric Research. The team assessed the completeness and transparency of reporting of recently published depression screening accuracy studies. A total of 106 studies were included and assessed for consistency with the Standards for Reporting of Diagnostic Accuracy Studies (STARD) statement requirements. Overall, the team found that recently published depression screening accuracy studies are not optimally reported, with individual studies adequately reporting an average of approximately a third of the items in the STARD checklist. Of the 34 STARD items or sub-items, there were 8 items adequately reported, 7 partially reported, 11 inadequately reported, and 4 not applicable in ≥ 50% of included studies; the remaining 4 items had mixed reporting. The team concluded that there is a need for attention to more fulsome reporting of methodological conduct of these studies, mostly related to test methods, test results, and analysis aspects. In order to improve the quality of reporting in depression screening accuracy studies, the research community, journal editors, reviewers, and funders should endorse and implement adherence to STARD. To learn more about the study, click here!

We are excited to share that the DEPRESSD team was awarded a 5-year funding (1.4 million) by CIHR for “The DEPRESsion Screening Data (DEPRESSD) Project: A Novel International Individual Participant Data Meta-analysis Collaboration to Advance Research on Depression Screening Tool Accuracy, Develop Statistical Methodology, and Conduct Meta-Research.” This grant will allow our team to update datasets for depression screening tools and conduct related studies in three categories: clinical, development and evaluation of Statistical Methods for IPDMA (Individual participant data meta-analysis) , and meta-research.

We are happy to share that the COVID-19 LSR team's paper on sex and gender differences in mental health symptom changes from pre-pandemic to early-pandemic is now published in Scientific Reports. This paper, led by Tiffany, identified 12 studies that reported dichotomized sex or gender data both prior to and during the COVID-19 pandemic. Assessed outcomes included anxiety symptoms, depression symptoms, general mental health, and stress. The paper concludes that mental health outcomes did not differ or were worse by small amounts among females/women compared to males/men during early COVID-19. Mental health changes should continue to be monitored longitudinally in COVID-19 taking into consideration sex and gender, as well as other population subgroups. Read more about the publication here: https://www.nature.com/articles/s41598-022-14746-1.

Dr. Thombs appeared on the July 3rd edition of Montreal CJAD 800’s Health Matters for World Scleroderma Day and discussed work that the SPIN Team is doing, including in COVID-19. Listen to the full episode here.

The SPIN Team was awarded a $20,000 CIHR Planning and Dissemination Grant and ranked very high for its proposal titled “Engaging Patients to Develop a Systemic Program of Patient Engagement in Musculoskeletal and Rare Disease Research: Putting Patients First”. The proposal was led by team member Elsa-Lynn Nassar, Dr. Brett Thombs, patient partner Maureen Sauvé, and Dr. Linda Kwakkenbos. This grant will support SPIN’s patient engagement work, which will involve engaging SPIN’s patient partners, scleroderma patient organization leaders, researchers, and clinicians to jointly develop an evidence-based framework for a patient engagement program. Congrats to the SPIN Team!