Norwegian Validation of LIPQOL Questionnaire Offers New Measure of Lipedema Quality of Life

Lipedema is a chronic condition that predominantly affects females, characterized by a painful, disproportionate accumulation of adipose tissue in the legs and sometimes the arms. It is frequently misdiagnosed as obesity, and females with lipedema report reduced quality of life compared to the general population, particularly in domains such as physical functioning, pain, social functioning, emotional well-being, and energy. Until now, there has been no validated Norwegian disease-specific patient-reported outcome measure (PROM) assessing quality of life in this patient group, limiting the evaluation of treatment effects in both clinical practice and research.

A new cross-sectional validation study published in Frontiers in Global Women’s Health set out to translate and validate a Norwegian version of the Lipedema Quality of Life questionnaire, known as LIPQOL. The research team, led by Julianne Lundanes of Nord-Trøndelag Hospital Trust and including collaborators from Western Norway University of Applied Sciences, Førde Hospital Trust, the University of Bergen, a German medical practice for vascular diseases, and the Norwegian University of Science and Technology, recruited 432 females with lipedema in Norway through the Norwegian Lymphedema and Lipedema Association’s email registry, which included approximately 2,400 individuals with either lipedema or lymphedema.

The LIPQOL questionnaire was originally developed in German, inspired by the Lymphedema Quality of Life (LYMQOL) questionnaire but adapted specifically for lipedema. The Norwegian research team initially intended to develop a new disease-specific quality-of-life questionnaire for people with lipedema in Norway. During preparatory discussions with clinicians and patient representatives about which aspects of living with lipedema should be represented in such an instrument, the team became aware of the recently developed German LIPQOL and critically examined its content against the aspects identified as important. Finding that the LIPQOL corresponded well with the content considered relevant, the researchers decided to translate it rather than develop a new and potentially overlapping instrument.

The translation from German into Norwegian was carried out by three Norwegian researchers with basic German skills, assisted by artificial intelligence-based translation tools including ChatGPT-5 and Microsoft Copilot. This pragmatic AI-assisted approach was informed by recent recommendations concerning the use of AI-assisted methods in questionnaire translation. The researchers worked collaboratively to ensure correspondence in wording, meaning, and conceptual content between the German and Norwegian versions. The translation was subsequently reviewed by a nutrition researcher who is a native German speaker with strong Norwegian language skills, and finally by two patient representatives who considered the wording, meaning, relevance, and comprehensibility of the items from a patient perspective.

One modification was made to the response structure of the original questionnaire. The German version includes a “Not applicable” option, allowing respondents to skip an item when it is not relevant to their situation. For the Norwegian validation study, this explicit response option was removed to encourage respondents to provide answers whenever an item was applicable and thereby maximize the amount of available data. The team identified two items for which a genuinely non-applicable situation could reasonably arise: the item concerning compression garments, for respondents who did not use them, and the item concerning the impact of lipedema on a romantic relationship, for respondents without a partner. Respondents were not required to answer all items, and unanswered items were treated as missing and excluded from the calculation of the domain score, corresponding to the scoring consequence of selecting “Not applicable” in the original German version.

The LIPQOL consists of three single items and four subscales: Function, Body image, Symptoms, and Feelings. Each subscale score is calculated as the mean of its completed items, with more than 50 percent of the items within a domain required for a domain score to be calculated. The Norwegian versions of the LIPQOL and the RAND-12 questionnaires were distributed via the online platform Questback. The RAND-12, a widely used and freely available measure of generic health-related quality of life that is strongly correlated with the longer RAND-36, was applied for convergent validity testing through its physical component score (PCS) and mental component score (MCS).

A total of 494 participants responded to the survey, a response rate of 21 percent, of whom 62 were excluded because they did not have lipedema, leaving 432 participants with lipedema. Most participants were aged 46 to 64 years (60 percent), and 92 percent reported receiving an official lipedema diagnosis from a health care professional. Notably, 71 percent reported that more than 10 years had elapsed from symptom debut to diagnosis, and 25 percent also had concomitant lymphedema. The mean body weight was 88.7 kilograms, mean height was 166.8 centimeters, and mean body mass index was 31.9 kilograms per square meter.

The psychometric properties of the questionnaire were assessed using confirmatory factor analysis (CFA) for ordinal data with weighted least squares mean and variance estimation. The overall goodness of fit was evaluated using the root mean square error of approximation (RMSEA), the standardized root mean square residual (SRMR), the comparative fit index (CFI), and the Tucker-Lewis index (TLI). Model fit was indicated by RMSEA close to or below 0.06, SRMR close to or below 0.08, and by CFI as well as TLI close to or above 0.95. Internal consistency was assessed using composite reliability from the CFA, with scores of 0.70 or above considered acceptable.

The unmodified CFA showed CFI = 0.929, TLI = 0.922, SRMR = 0.073, and RMSEA = 0.079 (90 percent CI: 0.073 to 0.084). All composite reliability values were considered reasonable, ranging from 0.890 to 0.916. No subscales were affected by floor or ceiling effects, although some individual items showed such effects. Modification indices were evaluated, and two modifications were performed between items 5 and 8, and between items 17 and 18. With modification indices, the overall structure validity showed reasonable but not unequivocal support for the four-factor structure, with CFI = 0.944, TLI = 0.938, SRMR = 0.068, and RMSEA = 0.070 (90 percent CI: 0.064 to 0.075). The modified model yielded a chi-square statistic of χ²(342) = 929.1, compared with χ²(344) = 1091.4 for the unmodified model.

Item 5, which assesses whether participants perceive wearing compression garments as burdensome, exhibited a low factor loading of 0.325 within the Function subscale. The researchers explain that this item is not directly related to functional ability, so a participant may demonstrate excellent functional capacity while still finding compression garments burdensome, likely accounting for the low loading. Modification indices indicated covariance between item 5 and item 8, both of which address the use of compression garments but belong in different subscales. Item 17 and item 18 were also highly correlated, as both assess similar symptoms: item 17 assesses the presence of a feeling of pressure in the legs, while item 18 assesses whether the legs feel heavier as the day progresses. The researchers limited the model modifications to two, aiming to make the minimum number of theoretically justifiable changes necessary to achieve acceptable model fit while minimizing the risk of overfitting.

Because missing responses were mainly in items that could conditionally not apply, the team conducted a sensitivity analysis to assess whether excluding participants with incomplete data affected the results. They re-estimated the same four-factor model using maximum likelihood estimation with and without full information maximum likelihood (FIML), which allows participants with partially missing item data to be included. The sensitivity analysis yielded results very much like those obtained from the complete-case analysis, with the overall model fit remaining essentially the same. This indicates that the missing data and the consequent selection of complete cases had only a minor effect on the substantive results of the CFA, although statistical missing-data methods such as FIML cannot completely resolve the underlying issue of item non-applicability.

Convergent validity was investigated by assessing correlations between the LIPQOL subscales and the PCS and MCS from RAND-12. All LIPQOL variables were significantly associated with both PCS and MCS (P < 0.001). Large correlations were observed between PCS and Function (Spearman’s rho = −0.682), Symptoms (Spearman’s rho = −0.550), and overall quality of life (Spearman’s rho = 0.554). Large correlations were also seen between MCS and Feelings (Spearman’s rho = −0.685) and overall quality of life (Spearman’s rho = 0.608). These findings suggest that the disease-specific impairments captured by the LIPQOL are reflected in broader aspects of generic health-related quality of life, while the measures remain sufficiently distinct to capture different aspects of quality of life.

The relatively strong association between the Function and Symptoms subscales, with a latent factor correlation of 0.819, should be considered when interpreting the instrument. However, the researchers note that strong associations between domains do not necessarily indicate that they measure the same construct. Symptoms and functional limitations are conceptually distinct aspects of quality of life but are also likely to be closely related in females with lipedema. The subscale scores should therefore be interpreted as related rather than independent dimensions of quality of life. The strong correlation between function and symptoms suggests that symptom severity has a substantial impact on physical functioning, highlighting the importance of symptom management for maintaining functional ability, quality of life, and work capacity.

The study has both strengths and limitations. Strengths include the robust overall sample size of 432 participants and the fact that this is the first validation study using this questionnaire. Other validated and non-validated lipedema-specific questionnaires assess symptom burden; however, this is the only multi-domain lipedema-specific health-related quality-of-life instrument. Moreover, most previous studies have used the LYMQOL questionnaire, which was originally developed for patients with lymphedema and includes items irrelevant for lipedema, or other generic PROMs not adapted to lipedema. Lymphedema and lipedema are often confused, although their pathophysiology differs substantially.

Nevertheless, several limitations should be acknowledged. The cross-sectional design precluded assessment of test-retest reliability and responsiveness. Information on previous lipedema surgery, stage, and type was not collected, limiting assessment of measurement properties across clinically relevant subgroups. As data collection was anonymous, reported diagnoses could not be independently verified. Recruitment through the patient organization may also have introduced selection bias towards more engaged patients, potentially limiting representativeness. Furthermore, the 25 percent of participants who also had concomitant lymphedema may affect the results, as patients with lymphedema seem to have more functional disability and lower life satisfaction compared to females with lipedema. Cross-cultural validity and formal content validity according to COSMIN recommendations were not evaluated, and formal cognitive interviewing was not undertaken.

The researchers conclude that the findings provide encouraging, although not unequivocal, initial support for the measurement properties of the Norwegian LIPQOL for assessing quality of life among females with lipedema. The tool may be useful in both clinical settings and research, as it is a short questionnaire with easy scoring that shows preliminary support for its validity and reliability. However, this is the first validation study of the LIPQOL questionnaire, and the German version has not yet been published or validated either. Future research should seek to further establish the measurement properties of the LIPQOL through continued German-Norwegian collaboration and resolve the remaining methodological issues identified in the present study, providing a stronger foundation for subsequent cross-cultural validation and evaluation of the instrument in other languages and populations. The questionnaire has the potential to become a standard disease-specific instrument for assessing quality of life in females with lipedema.

Subject of Research: Initial psychometric evaluation of the Lipedema Quality of Life questionnaire in females with lipedema in Norway

Article Title: Initial psychometric evaluation of the Lipedema Quality of Life questionnaire in females with lipedema in Norway

Article References: Lundanes, J., Andersen, J. R., Dierkes, J., Schrader, K., & Nymo, S. (2026). Initial psychometric evaluation of the Lipedema Quality of Life questionnaire in females with lipedema in Norway. Frontiers in Global Women's Health, 7, Article 1917274. https://doi.org/10.3389/fgwh.2026.1917274

Image Credits: AI Generated

DOI: 10.3389/fgwh.2026.1917274

Keywords: lipedema, LIPQOL, quality of life, psychometric validation, patient-reported outcome measures, womens health, Norway, Initial, psychometric, evaluation, Quality, Life