| Emotional Adjustment and Scleroderma |
 Hello, I am Janey Willis, ISN Guide to Emotional Adjustment. I know from experience that scleroderma can place unique demands on patients and caregivers alike. I have systemic scleroderma (SSc). It is common to suffer reactive depression with scleroderma. If you or someone you care about is having a difficult or suicidal time right now, call your nearest suicide hotline, or a doctor, or hospital. This is a medical emergency and it is okay to go to the emergency room or to call for help from your local police or fire department. The important thing is to make a call—any call—until you find help. | |
| Emotional Adjustment and Scleroderma (MAIN MENU) | | | |
| Quality of LIfe (QOL) with Scleroderma |
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| Overview of Quality of Life (QOL) |
| The quality of life (QOL) is affected any time something prevents us from maintaining our normal routine or from doing something that we enjoy. A broken arm will affect your QOL on a temporary basis, but a chronic illness may it affect it indefinitely. |
| A chronic illness such as scleroderma affects our lives in so many ways. Going to lunch with friends or simply taking a walk around the neighborhood become a chore. The secret is to find alternatives. What have you not done in your life that could make you just as happy as before, but with less effort? For example, rather than going out to lunch, have your friends bring you lunch. Have a picnic in the yard so you don't have to clean up the house. Go for a stroll rather than a walk. Stop and smell the roses or watch the hummingbirds pick bugs out of the air. It's amazing how some of the simpliest things can add a sense of quality to your life. |
| Quality of Life with Scleroderma |
| Disease and Symptom Burden in Systemic Sclerosis: the Patients' Perspective. Patients with SSc report significant symptomatic and emotional burden which affects their quality of life and psychological well-being. Additional research is needed in this area to develop, validate and implement relevant patient measures that assess disease burden in SSc.Maria Suarez-Almazor. 1056/436. ACR 2004. |
| Quality of Life in Systemic Sclerosis. Health-related QOL (Quality of life) appears to be particularly low in systemic sclerosis compared to other patient groups, and to significantly decrease over a one-year period. Vanessa L. Malcarne. ACR Conference Oct. 2003. |
| Quality of Life in Scleroderma: Compared to Psoriatic Arthritis, SLE, Rheumatoid Arthritis and Healthy Controls. Quality of life is adversely affected in SSc with a strong correlation between disability and the presence of > 10 tender points, arthritis, high skin score and GI involvement. SSc patients with arthritis are more disabled than those with PsA and experience more severe pain than RA patients. Sindhu R. Johnson. ACR Conference Oct. 2003. |
| Symptoms and QOL |
| The Relative Contributions Of Pulmonary Artery Systolic Pressure (PASP) And Forced Vital Capacity (FVC) To Function And Health Related Quality Of Life (HRQOL) In Systemic Sclerosis (SSc). Although it is obvious from clinical practice that for patients with either severe PAH or ILD, lung disease may be an important cause of morbidity, in the average patient the degree of pulmonary involvement is not severe enough to interfere significantly with function or HRQoL. Disease severity outside the lung appears to be more important. M. Baron. AB0495 EULAR 2007. (Also see: Pulmonary Involvement ) |
| Gastrointestinal Symptoms, Perceived Functioning and Quality of Life Issues Correlate with Gastric Myoelectrical Activity in Systemic Sclerosis (SSc) Patients. GI symptoms, quality of life issues and perceived functioning significantly correlated with gastric myoelectrical activity, which has been shown to reflect gastric dysmotility in SSc patients. Terry A. McNearney. 1137/396 ACR 2006. (Also see: Gastrointestinal Involvement ) |
| Scleroderma Care and Research Journal, Vol. 3, No. 2 |
 Scleroderma Care and Research Journal: Spring 2006. This free online PDF medical journal issue includes articles on Health Related Quality of Life: A Primer with a Focus on Scleroderma, and Pulmonary Arterial Hypertension in Systemic Sclerosis: Risk Factors and Diagnosis. SCTC Spring 2006. (Also see: SCAR Journals and Pulmonary Hypertension) Posted 07-20-06. |
| Health-related quality of life in patients with pulmonary arterial hypertension. Health-related quality of life is severely impaired in patients with pulmonary arterial hypertension and is associated with measures of functional status. Specific associations with impaired health-related quality of life suggest potential areas for targeted intervention. PubMed. Respir Res. 2005 Aug 10;6(1):92. (Also see: Pulmonary Hypertension) |
| Gastrointestinal Manifestations and Health Related Quality of Life in Systemic Sclerosis (SSc). Patients with SSc report poor health-related quality of life, both on a physical and psychological level. GI symptoms are common in SSc and are associated with significantly poorer mental health. S. S. Taillefer. FRI0125 EULAR 2005. (Also see: Gastrointestinal Involvement) |
| Comorbid Psychiatric Disorders and Quality of Life in Fibromyalgia Patients. Lifetime psychiatric disorders and affective spectrum symptoms are prevalent in FM and may be independent with pain severity and hypersensitivity to pressure in FM patients. Laura Bazzichi. ACR Conference Oct. 2003. (Also see: Fibromyalgia) |
| Assessing QOL |
| Disease and Symptom Burden in Systemic Sclerosis: A Patient Perspective. Patients with SSc report significant symptomatic and emotional burdens, which, in turn, affect their Quality Of Life (QOL) and psychological well-being. J Rheumatol 2007;34:1718-26. |
| Problems Faced by Scleroderma (SSc) Patients: The Scleroderma Concerns Questionnaire. Problems of most concern to patients were the uncertain course of the disease, the lack of a cure, the possibility of a shortened life, feeling tired/fatigue, not knowing what will happen next, and not being able to do the things they used to do. Thomas Arsenault. 1150/409 ACR 2006. |
| The Scleroderma Assessment Questionnaire. A new self-assessment questionnaire for evaluation of disease status in patients with systemic sclerosis. The Scleroderma Assessment Questionnaire (SAQ) is a sensitive measurement of disease status and level of impairment of different organ systems in patients with systemic sclerosis. PubMed. Z Rheumatol. 2006 Mar 3. |
| Disability, Pain and Dyspnea Predict Levels of Depression in Systemic Sclerosis (SSc). Depressive symptoms are quite common among patients with SSc, both diffuse and limited. Disability, pain and shortness of breath were shown to predict levels of depression. Decreasing disability and treating pain and shortness of breath could prevent high levels of depressive symptoms in SSc. Suzanne Taillefer. 1569/345. ACR 2005. |
| Responsiveness of the SF-36 and the Health Assessment Questionnaire Disability Index in a Systemic Sclerosis Clinical Trial. These data support inclusion of both the SF-36 and HAQ-DI as outcome measures in future clinical trials of diffuse SSc. J Rheumatol 2005 May;32:832-40. |
| Validation of French version of the Scleroderma Health Assessment Questionnaire (SSc HAQ). This study showed the value of the SSc HAQ, which is a simple, discriminant, reproducible self-administered questionnaire to evaluate French-speaking SSc patients. In addition, we suggest the use of a new outcome measure, the SSc HAQ score, to assess this systemic disease more accurately. PubMed. Clin Rheumatol. 2005 Feb;24(1):3-10. |
| Health-related quality of life measured by the Short Form 36 (SF-36) in systemic sclerosis: correlations with indexes of disease activity and severity, disability, and depressive symptoms. Patients with systemic sclerosis (SSc) perceived a reduced HR-QOL similar to that of patients with rheumatoid arthritis (RA). SF-36 may provide useful information in their evaluation. PubMed. Clin Rheumatol. 2004 Aug 6. |
| Health-related quality of life (HRQOL)in systemic sclerosis as measured by the Short Form 36: relationship with clinical and biologic markers. The SF-36 shows that HRQOL is impaired in patients with SSc. Higher scores in MSS and vitality in patients with diffuse scleroderma (dSSc) and correlations of high SF-36 scores with specific organ involvement suggest that SSc patients with severe disease are more able to cope with HRQOL modification. PubMed. Arthritis Rheum. 2004 Jun 15;51(3):475-81. |
| The Value of the Scleroderma Assessment Questionnaire (SAQ) to Demonstrate Change in Patients with Systemic Sclerosis Over Time. The Scleroderma Assessment Questionnaire (SAQ) is a sensitive measurement to demonstrate change in patients with systemic sclerosis over time. Predrag Ostojic. FRI0289 EULAR 2004. |
| Evaluation of Health-Related Quality of Life (HRQL) in Patients with Systemic Sclerosis (SSc). Patients with SSc presented a worse HRQL than the reference population. Pain and gender influence HRQL in SSc patients. HRQL measures can be used to objectively evaluate responses to treatment. Montserrat Núñez. FRI0294 EULAR 2004. |
| Quality of life assessment with the MOS-SF36 in patients with systemic sclerosis (SS). The quality of life in SS patients is correlated with the clinical severity of the disease. The use of SF-36 to measure the quality of life is useful for the clinical evaluation of patients with SSc. PubMed. Rev Med Interne. 2004 Jan; 25(1): 16-21. |
| Systemic sclerosis: Patients' perceptions of their condition. The beliefs held and symptoms experienced by patients with SSc are not ruled by disease subtype, skin score, functional ability, or severity of digital ischemia. This suggests patients' beliefs and emotional response are associated with the meaning they ascribe to their condition rather than its severity. PubMed. Arthritis Rheum. 2003 Oct 15;49(5):689-96. |
| To live with scleroderma is a very difficult challenge, owing to the various and sometimes painful or incapacitating consequences of the disease. The various life aids, the patients association, and the non pharmaceutical treatments have an important role to play besides the intervention of the medical specialists of the organs involved by scleroderma. PubMed. Rev Prat 2002 Nov 1;52(17):1918-22 |
| Improving on the QOL |
| Rare autoimmune rheumatic illnesses during pregnancy: systemic sclerosis, polymyositis/dermatomyositis and vasculitis. Autoimmune rheumatic diseases (ARD) affect young females durrng childbearing age. Over the last decades, improvements in survival as well as quality of life in patients affected with ARD have led to an increased number of pregnancies observed during the course of such diseases. PubMed. Z Rheumatol. 2006 May 3. (Also see: Pregnancy and Scleroderma, Dermatomyositis, and Vasculitis) |
| Weight Training Gives MS Patients Physical, Emotional Benefits. Lifting weights can improve muscle strength and quality of life for people afflicted with the degenerative disease multiple sclerosis, a new University of Florida study finds. The study, published in the December issue of the journal Multiple Sclerosis, showed that after eight weeks of supervised resistance training on conventional gym equipment, eight MS patients had stronger muscles, could walk better, and reported less overall fatigue and disability. Newswise. 01/13/05. (Also see: Multiple Sclerosis) |
| Weather conditions can influence rheumatic diseases. These data suggest that in the future it may be possible to modulate pharmacological and non-pharmacological treatments for some osteoarthritic patients depending on the predictable weather conditions in order to avoid, as much as possible, the disease-associated joint pain and functional incapacity, thus improving patients' quality of life. PubMed. Proc West Pharmacol Soc. 2004;47:134-6. |
| Intravenous Immunoglobulins (IVIg) in the Treatment of Joint Involvement in Patients Affected by Systemic Sclerosis. In SSc quality of life may be significantly impaired by articular involvement. IVIg have already shown a benefit in SSc, leading to a rapid decrease of skin score. Preliminary results show that IVIg treatment may improve skin and articular involvement by reducing pain and ameliorating quality of life in SSc pts. F. Nacci. FRI0112 EULAR 2003 (Also see: Treatments and Skeletal Involvement) |
| Personal Stories |
| Caregiving by Dee Dee Hunt When living with a chronic illness, we encounter "angels." They take different forms: Doctors, nurses, family, friends and caregivers. |
| Cindy Fuchs-Morrissey: Mother of a Progressive Systemic Sclerosis Child Some days she feels like a very stiff old lady. |
| Marina: Diffuse Scleroderma At forty-five, I am single, have three well-adjusted adult children, as well as a conviction that despite the low quality of life SD gives me, it has also brought me closer to my faith... |
| Patty S.: Localized Scleroderma, Pulmonary Hypertension and Sjögren's There's no more putting off for tomorrow in my world. |
