Today, I’d like to tell you about a study done by a group of surgeons from a reconstructive and aesthetic surgery center in Germany. The aim of this study was to provide further insights into the characteristics of lipedema. They also wanted to provide a baseline prior to surgery in order to better assess the effectiveness of surgical procedures for lipedema. The title of the paper is Characteristics and Patient Reported Outcome Measures in Lipedema Patients – Establishing a Baseline for Treatment Evaluation in a High-Volume Center. This paper was published in the Journal of Clinical Medicine in May 2022.
Who were the participants in this study?
511 patients diagnosed with lipedema who came to the surgery center for consultation and met the study eligibility requirements were included in this study. Patients were excluded if they were under the age of 18 or had already received liposuction or bariatric surgery.
What were the methods used in this study?
The study made use of different tools.
An intake questionnaire was used to record their height, weight, age of onset of symptoms and age at diagnosis, pain, quality of life, physical limitations, family history of lipedema, which treatments for lipedema they had undergone so far, what comorbidities they have, and their smoking status. The participants were also asked to rate the severity of 18 different symptoms known to be associated with lipedema using a 0-10 scale (10 = most severe).
The World Health Organization Quality of Life-BREF questionnaire was also utilized. This is a patient self-report survey about their overall health. The four health domains covered in this tool are physical health, psychological health, social relationships, and environment. This instrument also has a special quality of life section. Higher scores indicate better health and quality of life.
Because authors strongly believe that psychological issues need to be measured as much as physical impairments, another questionnaire used was the Patient Health Questionnaire (PHQ-9). This instrument consists of nine different items that assess depression. The participants were asked to rate the frequency that specific symptoms of depression that occurred over the last month, rating them from 0 (did not occur at all) to 4 (happened every day.) The higher the score, the higher the depression severity.
What were the results of this study?
Intake questionnaire. All participants were female, their mean age was 40 years, and their mean BMI was just over 33. On average, 16 years elapsed between the onset of symptoms and getting a diagnosis of lipedema. Over 80% of participants reported that the onset of their lipedema symptoms occurred during a period of hormonal change, such as puberty, pregnancy, or menopause, with puberty being by far the most frequently cited (67.3%).
When asked if another family member was suspected of having lipedema, the most common response was “mother” at 33.6%, followed by “grandmother” at 28.4%.
The authors used a model of three (3) stages of lipedema, while we at Lipedema Simplified use four (4) stages. With a three-stage model, most of the participants were in stage 2 (almost 58%) followed by stage 3 (36.6%). Only 8.6% of the participants were in stage 1. Many participants did not have symptoms in their arms (42%) but of those who did, 36% were classified as stage-2 in their arms.
In the area of comorbidities, hypothyroidism (31.6%) and joint pain (27.3%) were common, but diabetes was rare (3%). Comorbidities were more prevalent as the stage increased. For instance, joint pain was much more common, at 40%, in those who had stage 3 lipedema compared to just over 10% for those with stage 1 lipedema.
69% reported that attempts to lose weight had little to no effect. The most weight they lost was 5 kg (11 lbs).
Symptom severity rating. The most severe symptoms, each with a rating of over 7 out of 10, included:
- Feeling of “heavy” legs
- Feeling of tired legs
- Bruising (hematomas)
- Feeling of tension in legs
- Hypersensitivity to touch
- Swelling
When asked how their symptoms affected their daily life and ability to work, 96% reported some level of leg impairment, and 64% had an impairment in their arm function. 49% of participants were either severely limited in their ability to work or completely unable to work due to their symptoms. Additionally, 25% of respondents reported that the negative impact of lipedema on their quality of life was the most severe at 10 out of 10 on the rating scale. Each of these responses was positively correlated with the stage of lipedema, with the later stages of lipedema suffering the greater negative impacts.
The PHQ-9 was completed by 337 patients. The test results suggested that 54% of participants were at risk of suffering from moderate to severely depressed moods. Also, there was a positive correlation between the lipedema stage and a higher risk for depression.
333 patients completed the WHOQOL-BREF questionnaire. Remember, a higher score suggests better health and quality of life. The average score across all the domains was 60.5 out of the maximal score of 100. The lowest scores were obtained in the physical health (average score of 54) and in the mental health (average score of 51) domains. Interestingly, the highest average score was in the environment domain at 71.
What are the conclusions?
The authors conclude that lipedema remains a poorly understood disease, but hopefully, this study provided some insight into symptoms experienced by women before they have undergone a liposuction intervention. They note that previous studies of the effectiveness of liposuction for lipedema have usually been with shorter follow-ups and the baseline data is typically done retrospectively. This means that participants in previous studies were asked to remember how they were doing prior to surgery. Because memory can be faulty, this may not be entirely accurate information. It is the hope of the authors that they will have much higher quality data due to collecting this baseline information prior to surgery.
Takeaways
This study is important for women with lipedema because it contributes to a growing body of data that looks at the symptoms and characteristics of lipedema as experienced by the women themselves. Although the authors want to use this baseline information to help decide which liposuction procedure would be better for lipedema, I believe that the contribution to understanding the condition can have a wider impact. As we better understand what it’s like to have lipedema across the stages and types, we may be able to come up with better treatments, of which surgery will only be one of the options.
For more updates on the latest research regarding lipedema, check out Lipedema Simplified’s Flash Briefings. It’s our daily mini-podcast where we share tips, tools, and research pertaining to Lipedema.
~ Leslyn Keith, OTD, CLT-LANA
Board President, Director of Research | The Lipedema Project