Systemic sclerosis (SSc) patients face significant bodily and social restrictions that undermine their self-image and confidence, and uncertainties about the disease’s cause and prognosis undercut their confidence in their care, according to the a study of patient perceptions.
Researchers hope that the data collected for their study — “It’s Not Me, It’s Not Really Me – Insights From Patients On Living With Systemic Sclerosis: An Interview Study” — will lead to strategies that improve patients’ care and quality of life.
The study was published in the journal Arthritis Care & Research.
Thirty adults with limited or diffuse SSc were interviewed in Australia for the study, and six themes were identified as major concerns:
- Bodily malfunction: Restrictive pain, debilitating physical changes, and pervasive exhaustion weighed heavily on patients.
“The severe and constant pain was ‘wearing on the soul,’ and constrained the participants’ ability to live with purpose as they had to give up former activities they enjoyed including sport or playing music,” the researchers wrote.
- Social function: Losing their jobs and becoming socially isolated were mentioned as difficulties.
Participants felt “small,” “childlike,” “useless,” or like “a failure,” they told the researchers. Those feelings sometimes intensified to self-hate, loathing, or extreme sadness.
- Identity: Physical changes made the patients feel alone, powerless, or misunderstood.
- Insecurity about care: SSc is not a well-understood disease, patients said, and there is a lot of ambiguity around diagnosing it and its cause. Patients also talked about treatment limitations, seeking reassurance from doctors about their outcome, and fear of progression.
- Avoiding the “sick role”: Many said they try to avoid thinking about their illness, or they hide their pain to protect family members.
Interviewees said they were better able to accept their illness after seeing others with more severe diseases. Those with the limited disease expressed said they were grateful to not have diffuse SSC or pronounced organ involvement.
“This also helped them to avoid the victim mentality – ‘I should just be grateful, not see myself like a victim,’” the researchers wrote.
- Perseverance and hope: Patients discussed optimism about treatment, taking control of their health, pursuing alternative therapies, and seeking support.
“Uncertainties about the cause, diagnosis and prognosis can undermine confidence in care, leading to anxiety and therapeutic nihilism,” the researchers wrote. “Access to psychosocial care to support the patients’ role and functioning capacity, as well as communication and education that explicitly address their concerns regarding management may potentially improve treatment satisfaction, self-efficacy, adherence and outcomes in patients with systemic sclerosis.”