Psychosocial Aspects of Scleroderma

Kwakkenbos, Linda; Delisle, Vanessa C.; Fox, Rina S.; Gholizadeh, Shadi; Jewett, Lisa R.; Levis, Brooke; Milette, Katherine; Mills, Sarah D.; Malcarne, Vanessa L.; Thombs, Brett D.

doi:10.1016/j.rdc.2015.04.010

Cited by 63 publications

(58 citation statements)

References 53 publications

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“…Additionally, none of the previous studies identified concerns about physical appearance as a barrier to attending support groups. This is an important consideration in SSc because many patients experience extensive facial and bodily disfigurement .…”

Section: Discussionmentioning

confidence: 99%

Reasons for Not Participating in Scleroderma Patient Support Groups: A Cross‐Sectional Study

Gumuchian

Delisle

Peláez

et al. 2018

Arthritis Care & Research

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Section: Discussionmentioning

confidence: 99%

Reasons for Not Participating in Scleroderma Patient Support Groups: A Cross‐Sectional Study

Gumuchian

Delisle

Peláez

et al. 2018

Arthritis Care & Research

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“…SSc has an important social and emotional impact [ 30 ]. It is associated with increased functional impairment, body image distress due to skin lesions, and psychosocial comorbidity, particularly depression.…”

Section: Discussionmentioning

confidence: 99%

Improvement of Mouth Functional Disability in Systemic Sclerosis Patients over One Year in a Trial of Fat Transplantation versus Adipose‐Derived Stromal Cells

Onesti

Fioramonti

Carella

et al. 2016

Stem Cells International

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Background. Systemic sclerosis (SSc) is a multisystem disease characterized by cutaneous and visceral fibrosis. Face and mouth changes include telangiectasia, sicca syndrome, and thinning and reduction of mouth width (microcheilia) and opening (microstomia). We applied autologous fat transplantation compared with autologous adipose-derived stromal cells (ADSCs) injection to evaluate the clinical improvement of mouth opening. Methods. From February to May 2013 ten consecutive SSc patients were enrolled from the outpatient clinic of Plastic Surgery Department of Sapienza University of Rome. Patients were divided into two groups as follows: 5 patients were treated with fat transplantation and 5 patients received infiltration of ADSCs produced by cell factory of our institution. To value mouth opening, we use the Italian version of Mouth Handicap in Systemic Sclerosis Scale (IvMHISS). Mouth opening was assessed in centimetres (Maximal Mouth Opening, MMO). In order to evaluate compliance and physician and patient satisfaction, we employed a Questionnaire of Satisfaction and the Visual Analogic Scale (VAS) performed before starting study and 1 year after the last treatment. Results and Conclusion. We noticed that both procedures obtained significant results but neither one emerged as a first-choice technique. The present clinical experimentation should be regarded as a starting point for further experimental research and clinical trials.

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“…Systemic sclerosis (SSc), or scleroderma, is a rare chronic, autoimmune connective tissue disease characterised by abnormal fibrotic processes and excessive collagen production 23–25. Support groups, most led by people with SSc, play an important role for many people with the disease 17 26–30. Many people with SSc, however, cannot access support groups because they are not available close to where they live, and many initiated support groups are not sustained due to challenges that could be addressed via leader training 18 19…”

Section: Introductionmentioning

confidence: 99%

Scleroderma Patient-centered Intervention Network—Scleroderma Support group Leader EDucation (SPIN-SSLED) program: non-randomised feasibility trial

et al. 2019

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ObjectivesThe Scleroderma Patient-centered Intervention Network—Scleroderma Support group Leader EDucation (SPIN-SSLED) Programme was designed to improve confidence and self-efficacy and to reduce burden for support group leaders. Objectives were to (1) evaluate feasibility of programme delivery, including required resources, management issues and scientific aspects (eg, performance of outcome measures) and (2) assess user satisfaction and identify any modifications needed to improve programme content or delivery based on participant feedback.DesignNon-randomised feasibility trial.SettingNorth American patient organisations.ParticipantsCurrent support group leaders or potential new leaders referred by patient organisations.InterventionThe programme included 13 modules delivered live via videoconference over 3 months (April to July 2018) in 60 to 90 min sessions.Outcome measures(1) Elements of feasibility, including enrolment and consent procedures, percentage of referred group leaders who consented to participate, session attendance and technical support requirements; (2) programme usability, understandability, organisation and clarity; (3) leader satisfaction with the programme and (4) planned trial outcome measures, including support group leader self-efficacy, burnout, emotional distress and physical function.ResultsAll 12 referred potential participants consented to enrol, and 10 were included in two training groups of five participants each. Participants attended 95% of sessions. Required technical support was minimal, and videoconferencing technology functioned well. Overall programme satisfaction rating was 9.4/10. Mean item rating on the eight items of the Client Satisfaction Questionnaire-8 was 3.83 (1=low satisfaction; 4=high satisfaction). Pre-post scores on the Scleroderma Support Group Leader Self-efficacy Scale increased by 1.7 SDs (large effect); scores on burnout, emotional distress and physical function improved by 0.44, 0.38 and 0.45 SDs (moderate effects).ConclusionThe SPIN-SSLED Programme was feasibly delivered, including management, resource and scientific aspects. Participant satisfaction was high. The programme is ready to be tested in a full-scale randomised controlled trial.Trial registration number NCT03508661

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Psychosocial Aspects of Scleroderma

Cited by 63 publications

References 53 publications

Reasons for Not Participating in Scleroderma Patient Support Groups: A Cross‐Sectional Study

Reasons for Not Participating in Scleroderma Patient Support Groups: A Cross‐Sectional Study

Improvement of Mouth Functional Disability in Systemic Sclerosis Patients over One Year in a Trial of Fat Transplantation versus Adipose‐Derived Stromal Cells

Scleroderma Patient-centered Intervention Network—Scleroderma Support group Leader EDucation (SPIN-SSLED) program: non-randomised feasibility trial

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