Better support and information needed for range of SSc patients

Greater needs voiced by those recently diagnosed, survey study finds

Steve Bryson, PhD avatar

by Steve Bryson, PhD |

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People with systemic sclerosis (SSc) have a wide range of support and information needs, regardless of their disease duration, a survey found.

Patients with less time since diagnosis had greater needs overall and in areas of learning how to manage their condition and how to cope psychologically and socially.

Ideally, specialists who care for SSc patients “can provide formal educational resources to new patients or direct them to organizations … which can provide those resources,” the researchers recommended.

Details of the survey were in the study “Support and information needs of people with systemic sclerosis by time since diagnosis: A cross-sectional study,” published in the Journal of Scleroderma and Related Disorders.

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SSc, also called scleroderma, is a chronic autoimmune disease affecting connective tissue, which supports and holds organs and joints together. The disease is marked by skin fibrosis (scarring) and potential changes to organs, including the heart, lungs, digestive tract, and kidneys.

Its course can be unpredictable, withs symptoms ranging from mild to life-threatening depending on which parts of the body are affected and the extent of involvement.

Because of these challenges, many people with SSc attend support groups associated with patient organizations to learn about their disease, how to manage it best, and to obtain social support. However, whether SSc patients’ support and informational needs change over time is unknown.

According to researchers based in Canada and the Netherlands, “understanding the informational and support needs of people recently diagnosed versus others who have lived longer with SSc could potentially improve the ability of health care providers and SSc support groups to address needs at different disease stages.”

Study participants were SSc patients living in Canada or the U.S. who attended support groups and completed an anonymous 30-item survey on why they frequented such groups.

Of the 175 SSc patients who completed the survey, most were women (86%), white (86%), living in the U.S. (60%), and were in a relationship or married (68%). Among them, 40 had been diagnosed in the previous three years (23%), 50 between four and nine years ago (28%), and 76 participants more than 10 years before the study (43%).

The survey was divided into different themes: Obtaining Interpersonal and Social Support (Theme 1), Learning about Disease Treatment and Symptom Management Strategies (Theme 2), and Discussing Other Aspects of Living with Scleroderma (Theme 3). Responses were categorized as either not important or somewhat important and important or very important.

Between 67% and 97% (median of 81%) rated the 10 items in the Obtaining Interpersonal and Social Support theme as important or very important. There were, however, no statistically significant differences between patient groups with different times since diagnosis.

Needs ranged from managing the disease to discussing it with doctors

For example, all (100%) newly diagnosed SSc patients rated the item “Learning how other group members deal with issues related to scleroderma” as important or very important, compared with 97% in the four- to nine-year group, and 95% in the more than 10-year group.

Other items in this theme followed similar trends, including “Spending time with people who understand what it is like to live with scleroderma,” “Getting comfort and reassurance from other individuals with scleroderma in the group,” and “Knowing that I am not alone.”

For the 11 items in the Learning About Disease Treatment and Symptom Management Strategies theme, 73% and 92% (median of 82%) of participants rated them as important or very important.

Most of these responses across time were not statistically significant, including the items “Getting suggestions from other group members,” “Learning about medications used in SSc treatments and their potential side effects,” and “Learning about current scleroderma research.”

By contrast, 95% of recently diagnosed SSc patients (three or fewer years) rated “Learning how to more effectively discuss my medical care with my physician and other health care providers” as important or very important, compared with 78% in the four- to nine-year group, and 75% of the more than 10-year group.

The importance of the item “Learning about alternative healing practices, such as acupressure, herbs and vitamins, that can complement my medical treatment” significantly declined over time. For recently diagnosed patients, 85% rated it as important or very important, versus 76% in the four- to nine-year group and 64% in the more than 10-year group.

In the Discussing Other Aspects of Living with Scleroderma theme, 21% and 59% (median 44%) rated the nine items as important or very important. Statistically significant differences between recently diagnosed patients and the other two groups were seen.

Here, the significantly different items included “Learning how to talk with family and friends about my scleroderma,” “Learning how to handle financial issues associated with living with scleroderma,” and “Learning about sexual issues that may arise as a result of my scleroderma.”

Study results “confirm that SSc patients have a range of information and support needs, regardless of disease duration,” the researchers concluded. “Respondents with less time since diagnosis, however, have greater needs overall and in particular areas related to learning how to manage their disease and to cope psychologically and socially.”