TY - JOUR
T1 - Patients' perspectives and experiences living with systemic sclerosis : a systematic review and thematic synthesis of qualitative studies
AU - Nakayama, Ayano
AU - Tunnicliffe, David J.
AU - Thakkar, Vivek
AU - Singh-Grewal, Davinder
AU - O'Neill, Sean
AU - Craig, Jonathan C.
AU - Tong, Allison
PY - 2016
Y1 - 2016
N2 - 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.
AB - 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.
KW - health behavior
KW - qualitative research
KW - quality of life
KW - systemic scleroderma
UR - http://handle.uws.edu.au:8081/1959.7/uws:36821
U2 - 10.3899/jrheum.151309
DO - 10.3899/jrheum.151309
M3 - Article
SN - 0315-162X
VL - 43
SP - 1363
EP - 1375
JO - The Journal of Rheumatology
JF - The Journal of Rheumatology
IS - 7
ER -