Canadian Scleroderma Patient Survey of Health Concerns and Research Priorities Report
A Lay summary of the Report by Bob Buzza

The core objective of the patient survey was to assess among scleroderma patients a broad range of symptoms and experiences with the disease and with the healthcare system.   Its main purpose was to determine issues that are important for scleroderma patients, in order to focus research and development initiatives into areas identified as important to patients throughout Canada. 
The following is a summary of the highlights of that initiative…..

Demographics

Disease Subsets

Getting Diagnosed

• 17 months on average between patients’ first visit to a physician and diagnosis
• 75% diagnosed in less that one year
• 15% took more than 2 years and as many as 38 years to be diagnosed
• 80% saw 2 or more doctors to obtain a diagnosis
• 30% saw 4 or more doctors to obtain a diagnosis
• 10% diagnosed by family doctor or general practitioner
• 52% diagnose by rheumatologist
  
  

Current Medical Care

• 56% treated by a rheumatologist
• 19% treated by family doctor, general practitioner
• 12% not receiving treatment
• Overall patients expressed satisfaction with the medical care they are receiving
• Patients are split over whether or not their doctors’ diagnosis is correct
  

Symptoms

Following are the symptoms most commonly reported by patients:

• 91% reported fatigue, with 49% reporting fatigue most of the time/always
• 85% reported Raynauds, with 47% reporting most of the time/always
• 84% reported joint pain, with 44% reporting most of the time/always
• 83% reported stiffness of hands, with 44% reporting most of the time/always
• 80% reported difficulty sleeping, with 35% reporting most of the time/always

Those who reported symptoms were asked to rank the severity.  Following are the symptoms which reportedly most impacted their quality of life:

• 75% rated fatigue as moderate/severe/extremely severe, with 35% ranking severe/extremely severe
• 73% rated raynauds as moderate/severe/extremely severe, with 36% ranking severe/extremely severe
• 71% rated joint pain as moderate/severe/extremely severe, with 27% ranking severe/extremely severe
• 70% rated finger ulcers as moderate/sever/extremely severe, with 38% ranking severe/extremely severe
• 65% rated difficulty sleeping as Moderate/severe/extremely severe, with 28% ranking severe/extremely severe
• 65% rated erectile dysfunction as moderate/severe/extremely severe, with 33% ranking severe/extremely severe
  

Treatment and Healthcare Service

Physicians recommended prescription drugs for 83% of patients, exercise therapy for 33%, vitamins and/or supplements for 33% and bandages, ointments and creams for 27%. No other treatment or therapy was recommended by physicians to more than 20% of patients. Substantially fewer patients utilized physiotherapy and occupational therapy than recommended by their physicians

Hospitalization

36% have been hospitalized for scleroderma or scleroderma symptoms
Main reasons for hospitalization were Heart/Lung, Gastro-intestinal, Vascular problems and Infections

Mental Health Issues

• 33% have utilized mental health services due to problems related to living with scleroderma
• 40% have participated in support groups
• 52% don’t have, or don’t know if they have access to support group services
• 60% felt that mental health services available were inadequate
• 48% felt down, depressed or hopeless at least several days in the last two seeks, including 18% on more than half of the days.
• 77% expressed some degree of concern about their physical appearance due to scleroderma-related hand and/or face involvement
  

Financial and Employment Implications

• 26% are currently receiving disability benefits, 24% were employed full-time, and 30% were retired
• 47% of working patients indicated that scleroderma affected their ability to work very much/extremely
• 63% have private health insurance
• 27% pay more for medical than they can afford, while 30% are not confident that they can get the necessary medical Care without being set back financially
  
  

Highlights and Conclusions

Even though it is estimated that 16,000 Canadians suffer from Scleroderma, and many children, spouses, siblings, other family members, friends and co-workers are affected in one way or another by this potentially disabling and too often deadly multisystem disorder of the connective tissue, and more than 5 years of intensive multidisciplinary research work by the Canadian Scleroderma Research Group, the information about the disease, its cause, its symptoms and its treatment/s is
still minimal.

Further research in all aspects of this disease (i.e. medical, social, psychological, financial and biological) is still needed to better help patients cope with scleroderma and its symptoms, and improve patient’s health and overall quality of life.

Previous surveys have indicated that researcher’ and clinicians’ research priorities are sometimes very different from patients’ and do not reflect what the patients are really concerned about when it comes to their disease.  This motivated the CSRG to team up with the Scleroderma Society of Canada to ask scleroderma patients what THEIR main concerns and preoccupations were, in order to revisit their research agenda for the coming years.

1. Report Highlights
Between September 2008 and September 2009, 676 respondents completed the survey in English or French.  Most were Canadians, women around 54 years old, white and married.  The average length of time since being diagnosed was 10 years.  2 out of 3 had post secondary education.  CREST, Limited scleroderma and Diffuse scleroderma were the most common
diagnoses.  The average time between the patient’s first visit to a physician and diagnosis was 17 months.  80% of patients saw  2 or  more doctors before obtaining a diagnosis.  17%  of respondents saw 5 or more doctors.  52% were diagnosed by a rheumatologist and 18% were diagnosed by a family doctor/general practitioner.  More than 56% were currently being treated
by a rheumatologist and 19% were being treated by their family doctor/general practitioner and 12% were not receiving treatment. Gastrointestinal problems were commonly reported as an “other health condition.”

Doctors recommended prescription drugs for 83% of respondents, exercise therapy for 34%, vitamins and/or supplements for 33%, and bandages, ointments and cream for 27%.  Fewer respondents used physiotherapy and occupational therapy than was recommended. A lot more respondents used vitamins/supplements, and non-prescription medications than were doctor recommended. 40% of respondents have participated in support groups, 52% did not know if they have access to support group services. 48% felt “down, depressed or hopeless” at least several days in the last two weeks, including 15% who felt those same emotions more than half of those days.  3 out of 4 respondents had some degree of concern about their physical appearance due to
scleroderma-related hand and/or face involvement.  One third of respondents reported being disabled, on sick leave or unemployed, and most of them because (84% ) because of scleroderma.  One quarter of respondents were receiving disability benefits at the time of the survey, 24% were employed full-time and 30% were retired.  Half the working respondents said that scleroderma affected their ability to work.  One quarter said that the disease affected their finances.  64% had private health insurance and 46% were not receiving some health care services because of cost considerations.  Individuals with scleroderma may be less satisfied with their medical care than individuals with other medical illnesses.

Out of a list of 69 symptoms, patients rated which symptoms were the most frequent and the most severe.  The top 5 symptoms were fatigue, Raynaud’s, stiff  hands, joint pain and difficulty making a fist.  In terms of impact, the top 5 symptoms were fatigue, difficutly sleeping,  joint pain, difficulty concentrating and difficulty making a fist.

2. Limitations
This project was not an easy one and many limitations were identified.  A variety of strategies to reach patients were needed and in the end, the number of patients who answered the survey either online or on paper was somewhat lower than anticipated.  It seems the length of the survey discouraged many respondents and consequently, missing data was an issue.          

Having the survey accessible online 24/7 was an asset, but authenticity and quality of responses could be questioned considering that anybody could answer the survey, even those without the disease.  Answers could not be checked and some had to be discarded when in doubt.  Non-Canadian respondents had to be excluded when came time to mostly access health care services for example.

The number of respondents in Ontario, BC and Quebec was disproportionate in comparison with the other provinces, possibly due to the important role of the SSC provincial chapter in those 3 provinces and their success at distributing the promotional material during their patient meetings.

3. Conclusions
This survey of people with scleroderma was a successful first attempt to give a voice to people with scleroderma in order to better identify some of their concerns, allowing the Canadian Scleroderma Research Group, with the help of the Scleroderma Society of Canada, to start revisiting  their research priorities. In September of 2009, the people involved in this initiative got together in Montreal, QC, to look at  a preliminary version of this report and the following are some of the groups’ proposed action items:

Healthcare concerns

• Research is needed on why specific healthcare service and interventions are under- or over-utilized by patients compared to physician recommendations.
• We need to look at effectiveness of specific healthcare services and lifestyle interventions.
• We have to come up with recommendations of medical and lifestyle choices that may be of benefit to patients.
• Mechanisms need to be developed to gather information on healthcare services and ways of paying for them, and making them available to patients.
  

Satisfaction with Medical Care

We need to find out if individuals with scleroderma are less satisfied with their medical care than individuals with other medical illness, and if so, why.

Symptoms

People with scleroderma might not all be aware of  the possible symptoms that they could suffer from.  Dissemination to patients of what they may expect might benefit by somehow normalizing their experience as much as possible. Studies focusing on sleep issues in scleroderma could help better understand why people with scleroderma might often experience difficulties sleeping.  It might also be interesting to compare to other chronic diseases.

Emotional Issues

Emotional issues were not uncommon and fear may be an important problem – fear of dying, disablement.  Self-management  Programs could be used to help people better cope with these fears.The investigative group plans to meet again to continue discussing these results and move forward with more in-depth analysis of specific aspects of this survey.