Patients' perspectives and experiences living with systemic sclerosis: a systematic review and thematic synthesis of qualitative studies

Ayano Nakayama, David J. Tunnicliffe, Vivek Thakkar, Davinder Singh-Grewal, Sean O'Neill, Jonathan C. Craig, Allison Tong

Research output: Contribution to journalArticlepeer-review

46 Citations (Scopus)


Objective. Systemic sclerosis (SSc) is a chronic, progressive autoimmune disease with major end-organ involvement. Much attention has been focused on the management of physical and clinical manifestations; however, the effect of the disease and treatment on the patient's identity, relationships, functioning, and mental well-being are less known. We aimed to describe the patients' perspectives and experiences of living with SSc. Methods. Electronic databases were searched to October 2014. Thematic synthesis was used to analyze the findings. Results. We included 26 studies involving 463 patients. Six key themes were identified: distressing appearance transformation (disturbing facial changes, stigmatizing sickness, unrecognizable self), palpable physical limitations (bodily restrictions, frustrating mind-body disconnect, pervasive fatigue, disabling pain), social impairment (breaking intimacy, struggling to fulfill family responsibilities, maintaining work, losing independence), navigating uncertainty (diagnostic ambiguity, medically fending for oneself, unpredictable course of illness), alone and misunderstood (fearful avoidance of fellow patients, invisible suffering), and gradual acceptance and relative optimism (adapting to change and accepting limitations, taking a positive spin, cautious hoping, empowering relationships, valuing medical support). Conclusion. SSc is a rare and unpredictable illness that undermines patients' sense of certainty and control and impairs their self-image, identity, and daily functioning. Patient-centered care that encompasses strategies to promote self-esteem, resilience, and self-efficacy may help to improve treatment satisfaction and health and quality of life outcomes for patients with SSc.
Original languageEnglish
Pages (from-to)1363-1375
Number of pages13
JournalJournal of Rheumatology
Issue number7
Publication statusPublished - 2016
Externally publishedYes


  • Health behavior
  • Qualitative research
  • Quality of life/psychology
  • Review
  • Social support
  • Systemic sclerosis


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