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INTRODUCTION: Lipoedema is a chronic disorder in which excessive fat distribution occurs predominantly from the waist down, resulting in a disproportion between the lower extremities and upper torso. Lipoedema is often not recognized, while patients experience pain and easy bruising. As a long-term condition, lipoedema has a massive effect on patients' lives and mental health. The aim of this study is to explore patient characteristics, quality of life, physical complaints and comorbidities in patients with lipoedema. METHODS: A survey was conducted by email amongst lipoedema patients, consisting of informed consent and multiple questionnaires. The questionnaires included general patient characteristics, physical complaints, comorbidities, RAND-36 and EQ-5D-3L. Participants who responded to a message on the Dutch Lipoedema Association website were recruited. RESULTS: All lipoedema patients experience physical complaints, with pain (88.3 %) and easy bruising (85.9 %) as primary complaints. The diagnosis was mostly made by a dermatologist after visiting a mean of 2.8 doctors. Furthermore, mean time from onset until diagnosis was 18 years. Quality of life (59.3) was significantly lower than the Dutch female average (74.9; p < 0.001). Additionally, patients with comorbidities had significant lower quality of life (RAND 54.7, p < 0.001). CONCLUSIONS: Lipoedema patients often have severe complaints and experience lower quality of life regarding physical, emotional and social functioning. Additionally, comorbidities have a large impact on quality of life.
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This study aimed to explore patients' perceptions regarding the impact that lower limb chronic oedema has on their quality of life (QoL). A quantitative descriptive design was used to collect data from patients with lower limb chronic oedema. A condition-specific validated questionnaire was distributed to a purposive sample (n = 122) through manual lymphatic drainage/vascular/health clinics in Ireland. Results indicated that patients with lower limb chronic oedema experience a wide range of physical problems such as limb heaviness (74%, n = 66), weakness (44%, n = 40) and pain (38%, n = 34). Additionally, difficulties with walking (53%, n = 48), standing (51%, n = 46) and bending (45%, n = 40) were reported. Concerns regarding poor body image were strongly evident (76%, n = 68). Difficulties finding clothing/footwear to fit oedematous limb(s) were reported (59%, n = 53), in addition to finding clothes that participants would like to wear (64%, n = 58). Emotional symptoms of irritability (42%, n = 38), anxiety (41%, n = 37) and tension (40%, n = 36) were reported. Over half of the participants (55%, n = 49) stated that their chronic swelling affected their social functioning and their ability to engage in leisure activities. This study has identified that lower limb chronic oedema has significant psychological, social and physical implications for persons' QoL.
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Objectives: The aim of this study was to determine the ability of the central sensitization inventory (CSI), a new screening instrument, to assist clinicians in identifying patients with central sensitivity syndromes (CSSs). Methods: Patients from a psychiatric medical practice (N = 161), which specialized in the assessment and treatment of complex pain and psychophysiological disorders, were assessed for the presence of a CSS. CSI scores, using a previously determined cutoff of “40” of “100,” were compared between the CSS patient group (n = 99) and the non-CSS patient group (n = 62). Information on false positives, false negatives, true positives, and true negatives were analyzed, and sensitivity and specificity analyses were conducted. In addition, CSS-relevant variables such as depression, abuse, and substance abuse were examined. Results: A large percentage of CSS patients had comorbid major depressive disorder (80%) and abuse history (43%), which was higher than rates for the patients without a CSS (55% and 24%, respectively). The CSI correctly identified 82.8% (n = 82) of CSS patients as having a CSS (ie, sensitivity) and 54.8% (n = 28) of non-CSS patients as not having a CSS (ie, specificity). False-positive patients (not diagnosed with a CSS, but scoring >40 on the CSI) reported more severe pain, interference in daily functioning, and abuse history, compared with the non-CSS patients who scored below 40 (ie, true negatives). Conclusions: The CSI is a useful and valid instrument for screening patients for the possibility of a CSS, although the chances of false positives are relatively high when evaluating patients with complex pain and psychophysiological disorders.
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In 2014 250 women with Lipoedema took part in our survey about their experiences with Lipoedema. The results give a clear picture of what living with Lipoedema is like and reveal that along with the pain and discomfort caused by Lipoedema, many simple tasks that other people regard as straightforward become extremely challenging for people with Lipoedema. Lipoedema UK’s Big Survey 2014 led to the development of the Royal College of GPs’ e-learning course, a half hour course, which enables GPs to recognise Lipoedema and diagnose patients Our survey was created by Lipoedema UK, the Lymphoedema Department at St George’s Hospital, London, and the support of the Lymphoedema Support Network.
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Lipoedema UK was founded in 2012 by women with lipoedema and clinicians working in the Lymphoedema Service at St George's Hospital in London. Its patron is Professor Peter Mortimer, the UK's leading Lipoedema expert, and its nurse consultant is Sandy Ellis, who diagnoses and treats many women with Lipoedema in the UK and is also the nurse consultant in the St George's team. The charity's objectives are to educate doctors, health professionals and the public about lipoedema and its symptoms, so it may be diagnosed and treated earlier.
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