Patients’ Perspectives and Experiences Living with Systemic Sclerosis: A Systematic Review and Thematic Synthesis of Qualitative Studies

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

doi:10.3899/jrheum.151309

Cited by 60 publications

(65 citation statements)

References 35 publications

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“…Consistent with previous qualitative studies on SSc, our work confirms patients’ experience of the disease, mainly by its physical burden, social restriction and the disease navigating uncertainty [12, 24–27]. Interestingly, we collected new information regarding patients’ representation of SSc.…”

Section: Discussionsupporting

confidence: 86%

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Patients’ views and needs about systemic sclerosis and its management: a qualitative interview study

Mouthon

Alami

Boisard

et al. 2017

BMC Musculoskelet Disord

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BackgroundSystemic sclerosis (SSc) is a chronic connective-tissue disease responsible for reduced life expectancy, disability and a decreased quality of life. In order to optimize patients-physicians relationship and care strategy we aimed to survey views of patients on SSc and its management to reveal potential hurdles and improve health care strategies.MethodsA qualitative study combined semi-structured interviews, focus groups, and a direct observation of an information session was performed between November 2008 and January 2009.ResultsTwenty-five patients with SSc were included. They encounter difficulties to have a clear representation of their disease. Physical, psychological, and social repercussions of SSc may lead to a psychological distress and different coping strategies, which widely differ among interviewed patients. Patients’ views on their therapeutic journey and the management of their disease highlighted strong expectations about patient-physician relationship. These expectations were numerous, complex and sometimes ambivalent. Patients expected physicians to be human and attentive but also involved in research in the field and to provide psychological and affective support to help them to accept the uncertainty of disease evolution and lack of curative treatment. They also expected more individualized management, improvements in diagnosis and follow-up organization, more efforts in education and information, comprehensive behaviors and support from working colleagues and relatives, and increased funding from the health care system.ConclusionsOur results suggest that SSc management could be optimized, particularly with more attention to the patient–practitioner relationship. Patient profiles should be more precisely defined in terms of coping strategies and treatment preferences to propose more individualized options.

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Section: Discussionsupporting

confidence: 86%

“…Along the same line, qualitative studies on SSc are important as they emphasize important issues for patients [12, 24–27]. Unfortunately, despite their importance, personal factors are not covered enough by patient-reported outcome measures [25].…”

Section: Discussionmentioning

confidence: 99%

Patients’ views and needs about systemic sclerosis and its management: a qualitative interview study

Mouthon

Alami

Boisard

et al. 2017

BMC Musculoskelet Disord

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“…As expressed by our participants', shortness of breath, pain and tiredness are common problems in SSc and are considered barriers for the ability to perform PA/exercises, verifying the findings in studies regarding SSc (Nakayama et al, ; Sumpton et al, ), RA (Veldhuijzen van Zanten et al, ) and pulmonary diseases (Gaunaurd et al, ; Thorpe et al, ; Thorpe, Johnston, & Kumar, ).…”

Section: Disease‐related Hinders and Other Barrierssupporting

confidence: 85%

Experiences of physical activity and exercise in individuals with systemic sclerosis: A qualitative study

Pettersson

Nordin

Svenungsson

et al. 2020

Musculoskeletal Care

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Introduction: Exercise is emerging as an important part of the treatment in systemic sclerosis-patients with no-mild lung involvement. However, it has not been studied how patients experience physical activity and exercises. We thus explored and described experiences of physical activity/exercises in systemic sclerosis-individuals.Method: Sixteen systemic sclerosis-patients were purposefully recruited to represent variation in gender, age, and lung disease. Semi-structured individual interviews were performed, transcribed and analyzed with qualitative content analysis.Results: Three themes (categories) emerged: 1) Essential for life and health (An effective treatment, Reduces fear of deterioration, and Feeling healthy and satisfied with oneself); 2) Disease-related hinders and other barriers (Disease consequences, Risk of worsening, and Non-disease related barriers); and 3) Self-care and/or support (Self-confidence in physical activity/exercise, and, Education and support from healthcare and other).Conclusions: Physical activity/exercises were experienced as essential for life and health and as an effective treatment. It reduced fear of deterioration and made the participants feel healthy and satisfied with oneself. However, participants also experienced disease-related barriers like shortness of breath and pain, and they expressed a risk of worsening. Participants felt confidence in their physical activity/exercises and expressed that education and support from healthcare could be facilitating. Our findings add new knowledge about how systemic sclerosis-patients perceive physical activity/exercise and can contribute to the development of patient education and PA/exercise programs. K E Y W O R D S exercise, interview, qualitative research

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“…sense of coherence and hostility) also appear to be linked to psychological distress [14]. Acceptance of the condition [12], use of humor as a coping strategy [15], relative optimism [11], empowering relationships, and valuing social support [6] may improve quality of life in SSc patients.…”

Section: Introductionmentioning

confidence: 99%

“…Scleroderma may cause changes in appearance, and skin deformities appear to be one of the strongest stressors in the life of patients [11]. SSc is associated with decreased appearance self-esteem, particularly in female patients, regardless of the objective extent of skin involvement and most coping styles [12].…”

Section: Introductionmentioning

confidence: 99%

Personality and Psychopathology in Patients with Systemic Sclerosis

Csókási

Hargitai

Járai

et al. 2017

TOPSYJ

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Patients’ Perspectives and Experiences Living with Systemic Sclerosis: A Systematic Review and Thematic Synthesis of Qualitative Studies

Cited by 60 publications

References 35 publications

Patients’ views and needs about systemic sclerosis and its management: a qualitative interview study

Patients’ views and needs about systemic sclerosis and its management: a qualitative interview study

Experiences of physical activity and exercise in individuals with systemic sclerosis: A qualitative study

Personality and Psychopathology in Patients with Systemic Sclerosis

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