The SPIN-HAND toolkit for hand function

THE SPIN-HAND TOOLKIT FOR HAND FUNCTION

Significant functional impairment of the hands is nearly universal in scleroderma. Hand exercises may improve hand function, but developing, testing and disseminating rehabilitation interventions in scleroderma is challenging. To address this issue, SPIN experts in physical medicine, rehabilitation, physical and occupational therapy, and behavioural therapies, and SPIN Patient Advisory Board members designed an online hand exercise program to improve hand function for scleroderma patients (SPIN-HAND). In 2020, following the testing phases of SPIN-HAND by over 450 participants of the Cohort, SPIN publicly launched SPIN-HAND on its online platform dedicated to disseminating tools to patients. SPIN-HAND, SPIN’s first publicly accessible toolkit, is available via the SPIN-SHARE platform: tools.spinsclero.com.

About the SPIN-HAND Program

Expert Introduction to Program

A health expert welcomes users by giving them a brief overview of the different modules, levels of mobility, and exercises that can be found within each. A full transcript is available below the video.

Patient Introduction to Program

The welcome page also includes a patient video introduction. A patient describes her experience with coping with hand limitations by discussing helpful adaptive techniques and how she incorporated the hand exercise routine into her daily life. Again, a full transcript is available below the video.

4 Exercise Modules

4 modules that each present different exercises to address a different area of function:
1. Thumb Flexibility & Strength
2. Finger Bending (Make a Fist)
3. Finger Extension
4. Wrist Flexibility & Strength

Detailed Video Instructions for Hand Exercises, with 2 Difficulty Levels

Under each exercise, users will be prompted to select their difficulty level (either Mild to Moderate or Severe) to access the different exercises. Easy-to-follow instructional videos demonstrate how to perform each exercise properly with pictures to illustrate common mistakes. A written transcript is provided under each video.

My Goals Feature (Goal Setting & Progress Tracking)

The SPIN-HAND exercise program includes a section on learning how to set realistic, measurable goals and to track and achieve them. The My Goals page allows users to (1) create goals relating to their selected exercises, (2) share their goals with family and friends via email to enhance motivation, and (3) input and track their progress online.

Scleroderma and Your Hands

Under “More Info”, the “Scleroderma and Your Hands” page provides useful information about many different problems that can occur and strategies for addressing those problems. Topics covered in this section include: Raynaud’s phenomenon, swelling of the hands, arthritis, sclerodactyly and joint contracture, tendon friction, calcium deposits (calcinosis), ulcers, and Carpal Tunnel Syndrome. The program does not provide medical advice and always emphasizes that patients should develop personalized treatment plans with their healthcare provider(s).

Patient Stories Feature

The SPIN-HAND Program also includes a section with videos of patients describing their own experience with hand involvement and how exercising has helped. These patients represent a variety of different backgrounds and experiences with scleroderma.

Trial Status

Feasibility and full-scale trials are completed. SPIN enrolled 466 patients from the SPIN Cohort in the full-scale trial. Results of the trial are currently under review for publication.

The SPIN-HAND Toolkit is now available to the public via the SPIN-SHARE dissemination initiative: tools.spinsclero.com. Want to start the program now? Open the SPIN-HAND toolkit

Feasibility and full-scale trials are completed. SPIN enrolled 466 patients from the SPIN Cohort in the full-scale trial. Results of the trial are currently under review for publication. Due to low numbers of people who accessed the intervention as part of the trial, however, we are unsure of the effects on hand function for those who use it. Nonetheless, we do not believe there are harms from using the program, and it may be beneficial for some people.

Associated Publications

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. Link

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. Link

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. 2016;68(11):1704-1713. Link

SPIN-HAND Funders

The SPIN-HAND program has been funded by the Arthritis Society, the Canadian Institutes of Health Research, the Lady Davis Institute for Medical Research of the Jewish General Hospital, Jewish General Hospital Foundation, McGill University, the Scleroderma Society of Ontario, Scleroderma Canada, Sclérodermie Québec, Scleroderma Manitoba, Scleroderma Atlantic, the Scleroderma Association of BC, Scleroderma SASK, Scleroderma Australia, Scleroderma New South Wales, Scleroderma Victoria, Scleroderma Queensland.