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Experiences of healthcare and treatments in women with lipedema - results from a Swedish national survey
Jönköping University, School of Health and Welfare, HHJ, Department of Nursing Science. Jönköping University, School of Health and Welfare, The Jönköping Academy for Improvement of Health and Welfare.ORCID iD: 0000-0003-4292-5493
Jönköping University, School of Health and Welfare, HHJ, Department of Social Work. Futurum, Academy for Health and Care, Jönköping County Council.ORCID iD: 0000-0001-6804-9490
Jönköping University, School of Health and Welfare, HHJ, Department of Nursing Science. Jönköping University, School of Health and Welfare, The Jönköping Academy for Improvement of Health and Welfare.
Jönköping University, School of Health and Welfare, HHJ, Department of Nursing Science. Jönköping University, School of Health and Welfare, The Jönköping Academy for Improvement of Health and Welfare.ORCID iD: 0000-0002-0848-6098
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2023 (English)Conference paper, Oral presentation with published abstract (Refereed)
Abstract [en]

Objectives 

Lipedema is associated with multiple health problems which limit daily life. Still, the disease is frequently misunderstood in healthcare, and research from the patient’s perspective is relatively sparse. A Swedish national survey was conducted, to comprehensively examine health and quality of life among women with lipedema. Furthermore, the study explored participants’ self-care, self-reported effects of different treatments, and experiences when seeking healthcare.

Results

In total, 245 women with lipedema responded to the survey. The majority were 40-59 years old, and over half of the participants were in lipedema stage 3. Overall, in most age groups, women with lipoedema scored approximately 25-35 points lower in their physical and mental health than an age-matched general Swedish female population. Moreover, it often took decades from disease onset, including many healthcare visits, to be correctly diagnosed. Compared to a general female population, women with lipedema scored significantly lower on satisfaction with healthcare in dimensions of availability, information and knowledge, Experiences of emotional support, continuity and coordination, respect and treatment, and participation and involvement. Particularly low scores were recorded in participants’ overall impression of healthcare, including expectations of care, perceived efficiency, being cared for, and accessing information about treatment alternatives. Women with lipedema used several different treatments to manage their health problems. Most common were performing low-intensity exercise and using compression garments, of which approximately half of the participants rated as having a good or a very good effect. Less used, but self-reported as more effective, were conservative and surgical treatments performed by healthcare professionals.  

Conclusion

Lipedema has a significant negative impact on health and quality of life. Still, the diagnosis delay is extensive, and women with lipedema generally report low levels of satisfaction with healthcare. Although managing lipedema symptoms with self-care is common, treatments performed in healthcare were identified as having the most positive effects. Unfortunately, these are less likely to be used, suggesting barriers to healthcare. 

Learning objectives

This research aims to contribute to a holistic understanding of lipedema, including the management of lipedema symptoms from the patient’s perspective and the challenges these women face in healthcare. This is essential when implementing effective treatment plans and prioritising healthcare interventions.

At the conclusion of this activity, participants should be able to: 

  1. Recognize and describe experiences that women with lipedema have regarding their treatment and healthcare
  2. Identify healthcare improvements for women with lipedema
Place, publisher, year, edition, pages
2023.
National Category
Nursing
Identifiers
URN: urn:nbn:se:hj:diva-60216OAI: oai:DiVA.org:hj-60216DiVA, id: diva2:1752188
Conference
FDRS 2023 Conference, 14-16 April 2023, Atlanta, USA
Available from: 2023-04-21 Created: 2023-04-21 Last updated: 2023-04-21Bibliographically approved

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Falck, JohannaRolander, BoNygårdh, AnnetteJonasson, Lise-LotteMårtensson, Jan

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Falck, JohannaRolander, BoNygårdh, AnnetteJonasson, Lise-LotteMårtensson, Jan
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HHJ, Department of Nursing ScienceThe Jönköping Academy for Improvement of Health and WelfareHHJ, Department of Social WorkHHJ. ADULT
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