Worth Reading

The Scleroderma Clinics at St. Paul's hospital and You
(summary of a presentation given by Clinic Coordinator Fran Schooley
to the 2013 SABC Annual General Meeting, recorded by SABC volunteer Robyn Buzza Fox)

Recognized as the leading clinic in western Canada with combined scleroderma specialty clinics at St. Paul's, the demand for access is increasing. A welcome addition to Dr. Jim Dunne's original rheumatology clinic and Dr. Pearce Wilcox's respiratory clinic has been Dr. Chris Ryerson with his focus on pulmonary hypertension. Dr. Tom Goetz is at the helm of the hand/joint clinic, offering treatment or surgery for ulcerated hands/elbows and restricted joint movement. It is hoped that cardiac care will be expanding and other clinic connections will be added.

The Clinic's original caseload has tripled in recent years, and Coordinator Fran Schooley reports a significant increase in new referrals. The expanding caseload is likely attributable to improvements in standards of care and the widening range of options for drug therapy - good news for people living with scleroderma. Additionally, more doctors are correctly diagnosing SSc at earlier stages, thus allowing for earlier intervention. This is good news - health professionals now have more tools in their tool box! The Clinic's doctors are also actively involved with a number of scleroderma research initiatives and have published a number of peer-reviewed studies.

With the correct paper work in hand**, it is almost always possible for you to have access to your community-based specialist and the services of the scleroderma clinics at St. Paul's hospital in Vancouver as well. It no longer needs to be one or the other.

Clinic Outreach
If your scleroderma is stable and your medical needs are being met, you may not need the services of the Clinic. But if you have complications, find yourself having a 'flare,' or feel that a second opinion would be helpful, you can ask to be referred (requiring an MSP referral) to the Clinic. Your doctors can always be copied on your information, and you can be referred back to them again. It is also possible to attend the Clinic on annual basis for a review e.g. your medications, keeping up with new therapies available, new trials, etc. (Note: It is always a good idea to have an up to date list of your medications/supplements with you at all times.)

You may be your doctor’s only scleroderma patient so please keep in mind that the Clinic is available as a resource to your doctor as well.

Clinic Day
If it's your Clinic day, please remember to allow extra time (insert joke about parking and unreliable elevators :-) ) and be patient. Bring items to make yourself more comfortable and pass the time (water, snacks if allowed that day, reading material, music player, items that help you with the dry air and fluctuating temperatures, medications, etc.) While you wait, there is behind-the-scenes coordination of your results taking place for the doctors who are meeting to discuss your test results and formulate the next step. Fran's goal for your time at the Clinic is to ensure that as much as possible is accomplished for you that day.

Expanding Distance Options
Modern technology is expanding outreach capabilities e.g. the 'tele-health' system for consults in isolated communities. Another distance option: after an initial full profile is undertaken in the Vancouver Clinic, web visits can be arranged to follow up with you together with your local doctor/specialists at their local office via video/teleconference.

When It's Urgent
Scleroderma is not predictable. If you have a sudden change, or even if you have recently been seen for a flare that remains unrelenting, you or your legally designated representative++ may contact Fran. If you are hospitalized, with the correct permissions in place, Fran may be a resource or an advocate for you.

**Contact Fran at: 604.806.8818 - press 2.

++As the course of this disease is often unpredictable, advance care planning is helpful. For more information, please visit:
http://www2.gov.bc.ca/gov/topic.page?id=E7A581A9BC0A467E916CFC5AD2D3B1E8

 


SABC 30th Annual General Meeting
June 2014 - Richmond, BC
EXCERPTS & UPDATES FROM SABC DIRECTORS' REPORT


 


SABC 29th Annual General Meeting
June 1, 2013 - Langley, BC
SABC DIRECTORS' ANNUAL REPORT

Foreword: This past year has included times of celebration (an unusually well-received national scleroderma conference was held in BC) and sorrow (beloved, long serving association co-founder Jeannette Stach was among those who succumbed to SSc-related symptoms). After decades of multi-faceted service, including editing our newsletter, Joan Kelly, our last surviving co-founder, will relinquish the editor's role this fall to Grant Dustin, who was a co-founder of our national organization and served as its Treasurer for several years. We are also saying a fond goodbye to our long-serving, befreckled BC Treasurer, Joanne Shale, who has kept our books through over a decade of significant growth. David Queen, lead rider on the Queen tandem bike and husband of SSc patient Rosanne (the other rider) will begin service as Treasurer in July.

2012 Annual General Meeting: This short meeting was held in a picnic shelter in Stanley Park on June 16, 2012 during a heavy rainstorm and the inaugural Scleroderma Ride for Research. Tributes were paid to key fundraisers Harv and Dhar Dhanda (Grandma's Gala), Denise Kostash and other members of the Spencer family (Spencer Skate for Scleroderma), and Rosanne and David Queen (Scleroderma Ride for Research). The Treasurer's report was approved and an impressive slate of nominees was elected by acclamation.

National scleroderma Conference:We co-hosted the largest ever scleroderma conference in BC at the Hilton in Burnaby in late September. One hundred seventy-five SSc patients and their loved ones, researchers, nurses, student researchers and their mentors from across Canada participated. The entire program was very highly rated. Over 70 of our volunteers contributed, which is amazing. Thanks! A comprehensive report appeared in the spring edition of Sclerodata. A similar conference will be held in Hamilton, Ontario at the Sheraton Hotel on September 28-29 (www.sclerodermacongress.ca).

Research: Detailed information is available through Canadian Scleroderma Research Group (www.csrg-grcs.com) and/or Scleroderma Society of Canada (www.scleroderma.ca). Research results internationally are extensive, impressive and burgeoning. The CSRG has joined a large, multi-national cohort of researchers intent on increasing their ability to perform research, jointly. Such collaboration will, for example, permit many studies of bio-markers and of pathophysiologic mechanisms of the disease near its onset which, because of relatively small, isolated numbers, is not currently feasible. The World Scleroderma Foundation's third Systemic Sclerosis World Congress will take place in Rome in February 2014. Over 1,500 researchers and patients are expected to attend. The program will emphasize clinically relevant developments in the field, with an emphasis on improving the quality of life for patients with scleroderma, worldwide. Major, collaborative steps are now being taken to improve diagnosis and treatment, to determine cause(s), and to eliminate the disease.

In BC, Dr. Jim Dunne, Director of the St. Paul's Hospital Scleroderma Clinic, and his colleagues have published four peer-reviewed research papers in the past two years. They are continuing to research biomarkers in scleroderma and are completing a study of organ damage and progression. One of the best genetic labs in the world is located at UBC. An approach is being made to test the feasibility of doing gene arrays on a group of patients with genetic lab personnel. Research combining longitudinal clinical data, biomarkers, and gene arrays would be difficult and expensive, but could be helpful.

Communications: A decision to publish Sclerodata, our newsletter, three rather than four times a year was reversed. Quarterly publication meshes better with fundraisers. We provided $1,300 from Dhanda funds to help defray the cost of creating a new national website at www.scleroderma.ca, now successfully launched. We are committed, in principle, to transferring our website, which we will continue to manage, to a national provincial micro-site option that is under active development, and have reserved $1,500 in Dhanda funds to expedite the transfer. The result should be greatly improved, one-stop service of benefit to SSc patients, everywhere. Robyn Fox has been regularly updating our website (www.sclerodermabc.ca); Facebook page and CanadaHelps on-line donation site. Recent initiatives include joining the "LinkedIn" social network for professionals, and set up of an account with PayPal for Non Profits (Canada) with services helpful to our members, event organizers and office.

Fundraisers: Harv and Dhar Dhanda will host the 5th and final Grandma's Gala in memory of Gurmej Kaur Dhanda on September 5, 2013. Last year's event raised an amazing $20,000, which has been dedicated to helping our Association increase its social media profile, raise awareness, support educational and training initiatives and support the 2012 national conference. This year's target is $25,000! We are grateful that the Dhanda's will continue to fund a $1,000 scholarship and provide $2,500 for SSc research, annually. In 2014 they will shift their overall philanthropic focus by raising funds for another worthy initiative close to Harv's heart, and to use Dr. Dhanda's skills as an eye surgeon to provide surgery to those in need in India. Rosanne and David Queen's inaugural Scleroderma Ride for Research last September raised $10,000 for research! This year's ride will take place in Stanley Park in fair rather than foul weather on September 22. The Spencer family scleroderma skate on April 7, 2013 raised over $4,000 for patient support and research - a new record. Next year's skate in memory of Irene Spencer will also be held in April. We are thankful to Gordon Stach and his son David and daughter Dolores for research donations made in memory of wife-and-mother Jeannette.

Health Fair: Organizer Dianne McPhee and Robyn Fox, Tom Mueller, Helene Lewis Munro, Melissa Patton, Melanie Rak, and Rosanne Queen actively participated in the 4th Annual UBC Community and Patient Fair for Health Professional Education on October 31. The fair provides a unique opportunity for interaction between patients and medical students. We will also participate in this year’s fair on October 23.

Christmas Luncheon: You and your loved ones are invited to join us at a no-host luncheon on December 1 at 11:30 am at the Poco Inn and Suites at 1545 Lougheed Highway, Port Coquitlam.

Respectfully submitted by Bob Buzza on behalf of SABC Directors
Buzza, Dustin, Fox, Kelly, McPhee, Morton, Mueller, Patton, Queen, Rak and Shale

 

 

Joint Conference of
the Scleroderma Society of Canada & the Canadian Scleroderma Research Group
September 28/29, 2012
Hilton Vancouver Metrotown, Burnaby, BC

Click here to view our conference summary and related material

 

 

Patient health survey results... What next?
By Maureen Sauve,
President, Scleroderma Society of Canada (from a power-point presentation at the 2nd Scleroderma World Conference, Madrid)

So we've done the survey... Now what?
Survey data are only valuable if people know about them, understand them and use them. Surveys in and of themselves have no real value. It is the analysis and communication of this data that is valuable. Effectively, we need to know the data well enough to identify areas where the data can be most useful in driving change.

Value of patient survey results

  • Provides accurate and up-to-date information based on scientific data, not personal opinions.
  • Leads to transparency in decision-making, which is important for buy-in from policy makers and funding agencies.
  • Helps shape or improve policies, programs, and research priorities which ultimately leads to improved patient health outcomes.

improved patient health outcomes. For scientists to have success in their applications for funding for research programs they need scientific evidence to support their claims. Personal opinions and observations are insufficient as justification for funding requests or healthcare policy changes. The survey provides this scientific evidence-based data.

Create an action plan
Create an action plan to communicate results to: Patients. Policy makers. Media. Medical publications. Special interest groups. Service clubs. Women's groups. Simply getting information to potential users can be challenging. First we need to identify potential users and target a method of communicating with them that is most likely to be effective. Creating an action plan allows us to customize our approach to each of these audiences. How information is presented to special interest groups and policymakers may be entirely different.

Put findings into context
Keep your audience in mind.what do they need know and want to know?

Communicate results by keeping intended audience in mind so that the messages and images are clear, comprehensible, relative and appealing to that audience. Add policy recommendations and conclusions. If the target audience is a special interest group like "Changing Faces," we might want to highlight information that addresses body image concerns in the survey data. Alternatively, when addressing government bodies concerned with disability and employment issues, we are more likely to highlight the high rate of disability related to scleroderma in attempt to influence policy makers to acknowledge and classify scleroderma-related disabilities.

Communicating results
Ensure that the patients who participated in the survey receive the results. Prepare a presentation. Touch on the highlights. Use descriptive analysis, not detailed statistics. Write articles for magazines, newspapers - including local papers. Women's Health; Skin Alliance; Changing Faces. Communicating the results should take many different forms from e-mails to written letter, web-sites, PowerPoint presentations, to radio talk-show interviews. When making a presentation it is important not to get bogged down in the details - you don't want to present all 69 symptoms and the statistics that go along with them. It is far more effective to highlight the top 3 or 5 than to overwhelm your audience with all the details. Have the rest of the details as back-up, but focus your communication on the highlights of each area.

Outcomes of the Canadian Scleroderma Survey
One of the major outcomes of the Canadian Survey is the Creation of SPIN - the Scleroderma Patient-centered Intervention Network. SPIN was developed to address under-researched areas identified through the survey. The Canadian data has been used to successfully secure funding for this international research group to develop and evaluate non-pharmacological interventions for patients with systemic sclerosis. The target area for these interventions are the issues that patients identified as important in the survey. These include:

  • Hand function
  • Psychological distress
  • Body image concerns
  • Development of a General Program of Self-Management

Compare Data
Look for comparable data.

What are the similarities? The similarities reinforce the credibility of the data. What are the differences and explanations? Are they the result of healthcare policies, differences in government funding of treatments? Can the differences be explained? Now that there is European data available I would really like to compare your findings with ours in order to identify the similarities and differences. This will be particularly relevant if there are certain healthcare policies in place that have resulted in improved healthcare outcomes.

Acknowledgments
The Health Communications Unit at the Centre for Health Promotion: University of Toronto

Understanding and Using the Demographics and Health Surveys - DHS Curriculum Facilitator's Guide: Module 7, July/August, 2011 Calverton, Maryland, USA. ICF Macro.

**Editor(s) note
We are in complete agreement with Maureen's opinion 'that it is important for patients to realize that this project was developed in direct response to the efforts that they made in communicating with the research community through the completion of the questionnaires..and most importantly, that those efforts have translated into a well-funded project to address the needs identified within the survey.' Thank you Maureen, for offering this insight into the value of surveys; the information is certain to improve participation in future surveys!

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