Arthritis & Rheumatism, Volume 62,
November 2010 Abstract Supplement
Abstracts of the American College of
Rheumatology/Association of Rheumatology Health Professionals
Annual Scientific Meeting
Atlanta, Georgia November 6-11, 2010.
Frequency and Impact of Symptoms Experienced by Patients with Systemic Sclerosis: Results from a Canadian National Survey.
Bassel1, Marielle, Hudson3, Marie, Taillefer4, Suzanne S., Schieir1, Orit, Baron1, Murray, Thombs2, Brett D.
Patients with systemic sclerosis (SSc) report a number of problems that have been linked to disability and reduced quality of life. Due to the rarity and heterogeneity of SSc, not enough is known about the range of problems faced by individuals living with SSc. Several studies have assessed problems faced by patients with SSc, however, knowledge about the relative importance of these different problems is limited by the small number of studies that have been conducted, the relatively narrow scope of potential problems assessed in existing studies, and the small sample sizes in these studies. The objective of the present study was to identify, in a large SSc sample, symptoms of SSc that patients rated as frequent and that highly impacted their ability to carry out daily activities.
Patients with SSc were recruited to complete the anonymous Canadian Scleroderma Patient Survey of Health Concerns and Research Priorities through patient advocacy group websites, Canadian magazines, scleroderma-related newsletters, and support groups across Canada. The survey included questions regarding the frequency and impact of 69 SSc symptoms, which were generated from a panel of Canadian Scleroderma Research Group and Scleroderma Society of Canada members using existing questionnaires, symptom checklists and research articles. Descriptive analyses were performed dichotomizing symptom frequencies into never or rarely versus sometimes, most of the time or always and symptom impact on daily activities into no or minimal impact versus moderate to severe impact. In addition, for each item, among patients with symptom frequency of at least sometimes, the percentage of patients with at least moderate impact on daily activities was calculated.
Our study included 464 Canadian persons with SSc. The 5 highest-rated symptoms in terms of frequency were fatigue (89%), Raynaud's phenomenon (86%), hand stiffness (81%), joint pain (81%) and difficulty sleeping (76%). The same 5 symptoms were the highest-rated in terms of having a moderate to severe impact on daily activities, in the order of fatigue (72%), Raynaud's phenomenon (67%), joint pain (64%), hand stiffness (59%), and difficulty sleeping (59%). In addition to these symptoms, items related to decreased hand function (difficulty making a fist; difficulty holding objects; difficulty opening hand; difficulty faucet) were frequently endorsed by more than 400 patients and of these patients, at least 67% endorsed a moderate to severe impact on daily activities.
The results of this study confirmed the importance of core symptoms of SSc with respect to quality of life, such as fatigue. Limitations in hand function, another area identified by patients as being significant, is common and contributes to overall disability levels. However, little literature exists testing the effectiveness of rehabilitation techniques to improve hand function among patients with SSc. Other areas with very little research that appear to play important roles in daily functioning include sleeping problems and male sexual functioning. A patient- researcher consensus is suggested in order to focus future SSc research.
To cite this abstract, please use the following information:
Bassel, Marielle, Hudson, Marie, Taillefer, Suzanne S., Schieir, Orit, Baron, Murray, Thombs, Brett D.; Frequency and Impact of Symptoms Experienced by Patients with Systemic Sclerosis: Results from a Canadian National Survey. [abstract]. Arthritis Rheum 2010;62 Suppl 10 :1346