Individuals living with lupus: findings from the LUPUS UK Members Survey 2014
| Autor: | Amy R. Bland, Chris Maker, Jane Dunnage, Ian N. Bruce, Catharine Morgan |
|---|---|
| Jazyk: | angličtina |
| Rok vydání: | 2018 |
| Předmět: |
Adult
Male Weakness Pediatrics medicine.medical_specialty Activities of daily living SLE Acupuncture Therapy LUPUS UK Disease 03 medical and health sciences 0302 clinical medicine Cost of Illness Rheumatology Quality of life Activities of Daily Living Adaptation Psychological Patient experience medicine Humans Lupus Erythematosus Systemic Lupus around the World survey Registries 030212 general & internal medicine skin and connective tissue diseases Aged Massage 030203 arthritis & rheumatology Health Services Needs and Demand Systemic lupus erythematosus patient experience business.industry Middle Aged medicine.disease United Kingdom 3. Good health Charities Health Care Surveys Needs assessment Quality of Life Female medicine.symptom business Immunosuppressive Agents Needs Assessment |
| Zdroj: | Morgan, C, Bland, A, Maker, C, Dunnage, J & Bruce, I 2018, ' Individuals living with Lupus: Findings from the LUPUS UK Members Survey 2014 ', Lupus . https://doi.org/10.1177/0961203317749746 Lupus |
| DOI: | 10.1177/0961203317749746 |
| Popis: | Systemic lupus erythematosus (SLE) is a complex and unpredictable disease which varies greatly among patients and has a significant impact on an individual's daily living and quality of life. A better understanding of the patients' experiences with the disease is vital to the effective management of the disease. LUPUS UK, a national UK-registered charity supporting people with systemic and discoid lupus, conducted a UK-wide survey of individuals living with lupus in order to provide foundation information to support and identify gaps needing further research. An anonymous survey was sent to 5660 LUPUS UK members in order to obtain demographic, diagnosis, symptom and treatment information. A total of 2527 surveys were returned by 2371 females (mean age 56.9 years, SD 13.6) and 156 males, (mean age 60.9 years, SD 15.7). Individuals reported a mean (SD) time to diagnosis from the first symptom of 6.4 (9.5) years, with 47% ( n = 1186) initially being given a different diagnosis prior to lupus. Fatigue/weakness (91%, n = 2299) and joint pain/swelling (77.4%, n = 1957) were the most common symptoms that interfere with daily activities, while 73% ( n = 1836) noted having some problems that make them unable to carry out their usual daily activities. Thirty-two per cent ( n = 806) were also seeking support beyond traditional pharmacological treatments, such as acupuncture and massage. This study highlights the range and frequency of symptoms difficult to live with on a daily basis and support areas needing further research to improve patients' well-being. |
| Databáze: | OpenAIRE |
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