Diagnostic Delay, Psychosocial Burden and Treatment Expectations in 100 Patients with Lipedema: A Cross-Sectional Observational Study

Background/Objectives: Lipedema is a chronic adipose tissue disorder predominantly affecting females, characterized by symmetrical, painful accumulation of fatty tissue in the lower limbs and often the arms. Despite its estimated high prevalence, it remains systematically underdiagnosed in Italy. This study describes the clinical, demographic, psychological, and therapeutic characteristics of 100 patients referred to a specialist center, focusing on diagnostic delay and its impact on quality of life. Methods: Cross-sectional observational study using a structured questionnaire (18 items) administered to 100 consecutive female patients (mean age 35.2 years; range 18–58) at the Salus Mea outpatient clinic of Dr. Luisella Troyer between September 2023 and January 2026. The questionnaire covered demographics, onset, clinical symptoms, previous treatments, psychological impact, and willingness to undergo treatment. In accordance with Italian regulations on non-interventional observational studies involving anonymized data (Determina AIFA 2008; D.Lgs. 211/2003), formal ethics committee approval was not required. All participants provided informed consent; data were processed in GDPR compliance (EU 2016/679). Results: 85% of patients had no previous diagnosis; 63% discovered the condition independently online. 91% present spontaneous bruising; 76% report pain on palpation. 77% exhibit body-avoidance behaviors in public; 59.6% report frequent sadness, melancholy, or anger. 89% declare willingness to undergo specific treatment; 65% are tentatively willing to undergo surgery. Conclusions: The data confirm severe, systematic diagnostic delay of lipedema in the Italian healthcare context, with significant psychosocial impact on quality of life. The near-universal treatment willingness reflects an unmet therapeutic need requiring urgent responses from the healthcare system.

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Journal
Zenodo (CERN European Organization for Nuclear Research)
Published
2026-05-17
DOI
https://doi.org/10.5281/zenodo.20247976
Primary Topic
Lymphatic System and Diseases
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article
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article

Diagnostic Delay, Psychosocial Burden and Treatment Expectations in 100 Patients with Lipedema: A Cross-Sectional Observational Study

Fiorini Giorgio, Troyer Luisella Rosa Anna
Zenodo (CERN European Organization for Nuclear Research)
Lymphatic System and Diseases
article

Diagnostic Delay, Psychosocial Burden and Treatment Expectations in 100 Patients with Lipedema: A Cross-Sectional Observational Study

Fiorini Giorgio, Troyer Luisella Rosa Anna
article en

Abstract

Background/Objectives: Lipedema is a chronic adipose tissue disorder predominantly affecting females, characterized by symmetrical, painful accumulation of fatty tissue in the lower limbs and often the arms. Despite its estimated high prevalence, it remains systematically underdiagnosed in Italy. This study describes the clinical, demographic, psychological, and therapeutic characteristics of 100 patients referred to a specialist center, focusing on diagnostic delay and its impact on quality of life. Methods: Cross-sectional observational study using a structured questionnaire (18 items) administered to 100 consecutive female patients (mean age 35.2 years; range 18–58) at the Salus Mea outpatient clinic of Dr. Luisella Troyer between September 2023 and January 2026. The questionnaire covered demographics, onset, clinical symptoms, previous treatments, psychological impact, and willingness to undergo treatment. In accordance with Italian regulations on non-interventional observational studies involving anonymized data (Determina AIFA 2008; D.Lgs. 211/2003), formal ethics committee approval was not required. All participants provided informed consent; data were processed in GDPR compliance (EU 2016/679). Results: 85% of patients had no previous diagnosis; 63% discovered the condition independently online. 91% present spontaneous bruising; 76% report pain on palpation. 77% exhibit body-avoidance behaviors in public; 59.6% report frequent sadness, melancholy, or anger. 89% declare willingness to undergo specific treatment; 65% are tentatively willing to undergo surgery. Conclusions: The data confirm severe, systematic diagnostic delay of lipedema in the Italian healthcare context, with significant psychosocial impact on quality of life. The near-universal treatment willingness reflects an unmet therapeutic need requiring urgent responses from the healthcare system.

Zenodo (CERN European Organization for Nuclear Research)
Salus (United States) (US)
Openalex Percentile: Top 8%
Lymphatic System and Diseases
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Diagnostic Delay, Psychosocial Burden and Treatment Expectations in 100 Patients with Lipedema: A Cross-Sectional Observational Study — Fiorini Giorgio, Troyer Luisella Rosa Anna · Zenodo (CERN European Organization for Nuclear Research) (2026) | TGRS Research Map | TGRS