Abstract
Background: Lipedema is associated with pain, bruising, heaviness and limitations in physical and social functioning. Real-world patient-reported outcome data are important to describe disease burden and inform clinical pathways.
Methods: Anonymous cross-sectional electronic survey of women diagnosed with lipedema at IbsenSykehusene (Aug 2021–Aug 2025). The survey was sent to 719 participants who had all accepted automated electronic communication to ensure a single communication pathway; patients who had opted out were not contacted. Outcomes included RAND-12 domain scores (0–100; higher = better), unweighted Physical Composite Score (PCS) and Mental Composite Score (MCS) (study-specific, unweighted means of domains), four lipedema-specific symptom frequency items (0–4; higher = worse), employment status, BMI and waist-to-height ratio (WtHR). Primary comparison: consultation only versus any operated. Analyses used available-case denominators.
Results: 202 respondents (consultation only n = 114; operated any n = 88). Operated respondents reported higher PCS (mean difference 15.2; 95% CI 7.7–22.7) and higher MCS (mean difference 15.3; 95% CI 8.6–22.0). Lipedema symptom frequency and the symptom composite were lower in the operated group. Work participation differed meaningfully (higher full-time employment, lower sick leave/disability among operated respondents). WtHR and BMI were used to contextualize adiposity phenotype.
Conclusions: In this real-world clinic population, surgical treatment delivered within a consistent pathway was associated with meaningful improvements in physical and mental health and reductions in lipedema symptom burden. These practice-based findings support the clinical purpose of the pathway while acknowledging the limits of cross-sectional, anonymous data.
Introduction
Lipedema is a chronic adipose tissue disorder marked by disproportionate fat deposition in the limbs, pain, easy bruising, heaviness and functional limitations. Although described early in the 20th century, the condition remains incompletely characterized and recent consensus statements and guidelines have helped standardise care. Patients frequently report impaired work participation and social activity; systematic collection of patient-reported outcomes is therefore important to improve care and to evaluate the effect of interventions such as surgery.
IbsenSykehusene is a private specialist provider in Norway with three hospitals (Porsgrunn, Gardermoen and Gjøvik). The first lipedema surgery in our programme was performed on 22 August 2021. Over the four-year period to 28 August 2025, 285 patients underwent lipedema surgery (700 procedures). All surgical patients were female; age among surgical patients ranged 18–73 years (mean 42.4; median 43). All patients were assessed and operated on by the same two surgeons, providing diagnostic and treatment consistency.
Methods
Design and recruitment
Anonymous cross-sectional electronic survey administered as a quality improvement initiative to women diagnosed with lipedema at IbsenSykehusene between August 2021 and August 2025. The survey was sent to 719 participants who had all accepted automated electronic communication to ensure a single communication pathway; invitations were distributed by automated email only to patients who had consented to receive automated electronic communications, and patients who had opted out were not contacted. This ensured a consistent, auditable distribution channel and allowed follow-up reminders where appropriate, but may introduce selection bias.
Respondents self-reported treatment status and were grouped as consultation only (not operated) or operated (any: operated at IbsenSykehusene and/or elsewhere). Primary analyses compare consultation only vs operated (any); sensitivity analyses compare consultation only vs each operated subgroup.
Measures
- RAND-12: domain scores 0–100 (higher = better).
Two unweighted composite measures were derived for interpretation: Physical Component Score (PCS) PCS = mean(PF, RP, BP, GH) and MCS = mean(VT, SF, RE, MH). These composites are study-specific unweighted summaries and are not equivalent to SF-12 norm-based PCS/MCS. RAND-12 was administered using the Norwegian FHI translation; tables use official English item wording for readability.
- RAND Scale Definitions:
- PCS (Physical Component Summary): Composite score summarizing overall physical health, weighted by the following scales:
- PF (Physical Functioning): How well you can perform daily physical activities.
- RP (Role Physical): Limitations in physical activities due to health problems.
- BP (Bodily Pain): The severity of your body pain.
- GH (General Health): Your perception of your overall health and health outlook.
- MCS (Mental Component Summary): A composite score summarizing the components of the mental dimension:
- Vitality (VT)
- Social Functioning (SF)
- Role Emotional (RE)
- Mental Health (MH)
- PCS (Physical Component Summary): Composite score summarizing overall physical health, weighted by the following scales:
- Lipedema-specific symptoms: four items (pain, bruising, heaviness, mobility limitations) coded 0–4 (Never–Always) and averaged into a symptom composite (higher = worse).
- Employment status: categorised (full-time, part-time, sick leave, disability, not employed); percentages reported using non-missing denominators.
- Anthropometrics: BMI (WHO categories) from self-reported height/weight and waist-to-height ratio (WtHR) as a pragmatic marker of central adiposity. WtHR is clinically useful in lipedema because central obesity is not the typical lipedema distribution and WtHR better reflects cardiometabolic risk than BMI alone.
Response & scoring
719 invited; 202 respondents (28% response). Completion (final page): 160/202 (79.2%). Item completeness was high for treatment category (202/202), the four symptom items (193/202) and RAND general health (192/202). Analyses used available-case denominators; valid n reported for each result.
Scoring: RAND-12 domain scoring followed standard 0–100 scaling. Continuous comparisons used Welch’s t-test with 95% CIs and Hedges g; ordinal symptom comparisons used Mann–Whitney U with effect size r. Exploratory regression models adjusted for BMI or WtHR where data permitted.
Results
Participants & treatment categories
N = 202 respondents: consultation only 114 (56.4%); operated at IbsenSykehusene 65 (32.2%); operated elsewhere 11 (5.4%); operated at IbsenSykehusene + elsewhere 12 (5.9%); operated (any) = 88.
Anthropometrics
BMI and WtHR summaries in tables; waist measures had some missingness. WtHR was used to identify central adiposity and support interpretation.
RAND-12 & composites
Operated respondents had higher scores across most RAND-12 domains and substantially higher PCS and MCS. Principal differences were in perceived general health, physical functioning, role limitation due to physical health, and bodily pain interference. Social functioning differences were smaller.
Lipedema-specific symptoms
Operated respondents reported lower frequency of pain, bruising, heaviness and mobility limitations. Symptom composite: consultation mean 2.99 vs operated mean 2.27 (p ≈ 1.8×10⁻⁸).
Employment
Among non-missing responders (consultation n = 93; operated n = 68): full-time employment 40.9% consultation vs 55.9% operated; sick leave and disability higher in consultation only. See Table 2 for details (percentages use non-missing denominators).
Sensitivity analyses
Differences in PCS/MCS persisted in exploratory models adjusted for BMI and WtHR, though missingness and anonymous design limit causal interpretation.
Discussion
Principal findings. Consultation-only respondents reported markedly poorer perceived health and higher symptom burden than operated respondents. Differences were largest in physical domains and disease-specific symptoms; mental health measures also differed substantially, while social functioning showed smaller separation.
The findings speak directly to the raison d’être of IbsenSykehusene – valid treatment outcomes and improved quality of life: women reporting lipedema surgery within our standardized pathway had substantially better physical and mental health scores and lower disease-specific symptom frequency than women reporting consultation only.
Although these cross-sectional, anonymous data cannot prove causality and are open to selection and timing biases, the coherent signal across RAND-12 domains and disease-specific items — delivered by the same surgical team and within a consistent pathway — is consistent with a meaningful patient-centred benefit of surgical treatment. On that basis, the results provide credible, practice-based support for the role of surgery for selected patients and for continued investment in timely diagnostic pathways, careful surgical selection, and routine short-term PROM monitoring to ensure benefits are realised and equitably delivered.
Why social functioning differences may be smaller. Social participation depends on support networks, work flexibility and coping strategies and therefore may change less directly with physical symptom improvement; social recovery may require adjunct interventions.
Limitations
This is an anonymous cross-sectional QI survey and therefore descriptive. Group differences may reflect baseline differences, timing since surgery, or selection/non-response bias (survey sent only to those consenting to automated communications). Lack of linkage prevented adjustment for disease stage, comorbidity or time since surgery. Anthropometrics were self-reported; waist circumference had missingness. Because the survey is cross-sectional and the groups may differ at baseline, the observed associations should not be interpreted as definitive proof that surgery caused the improvements; prospective, linked evaluation is required.
Conclusion
In this real-world clinic population, surgical treatment delivered within a consistent pathway was associated with meaningful improvements in physical and mental health and reductions in lipedema symptom burden, supporting the core mission of IbsenSykehusene to improve patient wellbeing.
Implications for QI & practice
- Focus QI on diagnostic consistency, standardised surgical selection and pre-operative optimisation.
- Given the staged treatment pattern (mean ≈ 2.5 procedures often within 12 months), semiannual (twice-yearly) PROM checkpoints are pragmatic to monitor outcomes across the treatment course.
- Pain, mobility and mental wellbeing remain domains for targeted peri-operative optimisation and service partnerships (e.g. dietetics, physiotherapy, psychological support or vocational advice as appropriate within the private specialist model).