Quality of life in women with lipoedema: a contextual behavioral approach

Abstract

Purpose

Lipoedema is a chronic, progressive adipose disorder of unknown etiology, often underdiagnosed or misdiagnosed as obesity. It manifests itself with accumulation of the fat in lower parts of the body and associated edema and, due to numerous physical and psychological consequences, affects the quality of life (QOL) of those who suffer. The aim of this study was to investigate the psychological factors that might have an impact on the QOL of women with lipoedema from the contextual behavioral viewpoint.

Methods

In an Internet-based cross-sectional study, women suffering from lipoedema (N = 120) were asked to fill in questionnaires assessing: symptom severity, QOL (WHOQOL-BREF), satisfaction with life (SWLS), psychological flexibility (Acceptance and Action Questionnaire-II), social connectedness (Social Connectedness Scale-Revised) and other psychological factors. The majority of participants were from the USA, the UK, and Australia.

Results

Multiple hierarchical regression analyses showed that a higher level of QOL was predicted by higher levels of psychological flexibility and social connectedness, while controlling for symptom severity. Higher level of SWL was predicted only by higher level of social connectedness.

Conclusions

Acceptance and Commitment Therapy with psychological flexibility as the target of change and Functional Analytic Psychotherapy with social connectedness as the target of change might be useful in treating women with lipoedema; however, further research in this area is needed. The authors conclude that psychological and biomedical interventions for women with lipoedema and their QOL merit more attention from researchers and the medical community than is currently received.

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Fig. 1

Notes

  1. 1.

    http://groups.yahoo.com/neo/groups/lipedema_lipodema_lipoedema/info (current number of members is 1370).

  2. 2.

    Other locations such as: Canada (N = 4), New Zealand (N = 3), Germany (N = 2), South Africa (N = 2), Peru (N = 2), Puerto Rico (N = 2), Egypt (N = 1) Greece (N = 1), Israel (N = 1), Portugal (N = 1), Isle of Man (N = 1), Norway (N = 1). Four participants did not provide their location.

  3. 3.

    WHOQOL-BREF, Questionnaire, June 1997, Updated 1/10/2014 retrieved from http://depts.washington.edu/seaqol/WHOQOL-BREF.

References

  1. 1.

    Langendoen, S. I., Habbema, L., Nijsten, T. E. C., & Neumann, H. A. M. (2009). Lipoedema: From clinical presentation to therapy. A review of the literature. British Journal of Dermatology, 161(5), 980–986.

    Article  CAS  PubMed  Google Scholar 

  2. 2.

    Herbst, K. L. (2012). Rare adipose disorders (RADs) masquerading as obesity. Acta Pharmacologica Sinica, 33(2), 155–172.

    PubMed Central  Article  CAS  PubMed  Google Scholar 

  3. 3.

    Földi, M., & Földi, E. (2006). Földi’s textbook of lymphology: For physicians and lymphedema therapists (2nd ed.). Munich: Elsevier.

    Google Scholar 

  4. 4.

    Bosman, J. (2011). Lipedema: Poor knowledge, neglect or disinterest? Journal of Lymphoedema, 6(2), 109.

    Google Scholar 

  5. 5.

    Fife, C. E., Maus, E. A., & Carter, M. J. (2010). Lipedema: A frequently misdiagnosed and misunderstood fatty deposition syndrome. Advances in Skin & Wound Care, 23(2), 81–92.

    Article  Google Scholar 

  6. 6.

    Seo, C. A. (2014). You mean it’s not my fault: Learning about lipedema, a fat disorder. Narrative Inquiry in Bioethics, 4(2), E6–E9.

    Article  PubMed  Google Scholar 

  7. 7.

    Hayes, S. C., Barnes-Holmes, D., & Wilson, K. G. (2012). Contextual behavioral science: Creating a science more adequate to the challenge of the human condition. Journal of Contextual Behavioral Science, 1, 1–16.

    Article  Google Scholar 

  8. 8.

    Hayes, S. C., Strosahl, K. D., & Wilson, K. G. (2011). Acceptance and Commitment Therapy: The process and practice of mindful change (2nd ed.). New York: The Guilford Press.

    Google Scholar 

  9. 9.

    Tsai, M., Kohlenberg, R. J., Kanter, J. W., Kohlenberg, B., Follette, W. C., & Callaghan, G. M. (2008). A guide to Functional Analytic Psychotherapy: Awareness, courage, love, and behaviorism. New York: Springer Science & Business Media.

    Google Scholar 

  10. 10.

    Bond, F. W., Hayes, S. C., Baer, R. A., Carpenter, K. M., Guenole, N., Orcutt, H. K., et al. (2011). Preliminary psychometric properties of the Acceptance and Action Questionnaire-II: A revised measure of psychological inflexibility and experiential avoidance. Behavior Therapy, 42(4), 676–688.

    Article  PubMed  Google Scholar 

  11. 11.

    Kashdan, T. B., & Rottenberg, J. (2010). Psychological flexibility as a fundamental aspect of health. Clinical Psychology Review, 30(7), 865–878.

    PubMed Central  Article  PubMed  Google Scholar 

  12. 12.

    Lundgren, T., Dahl, J., & Hayes, S. C. (2008). Evaluation of mediators of change in the treatment of epilepsy with Acceptance and Commitment Therapy. Journal of Behavioral Medicine, 31(3), 225–235.

    Article  PubMed  Google Scholar 

  13. 13.

    Wicksell, R. K., Kemani, M., Jensen, K., Kosek, E., Kadetoff, D., Sorjonen, K., et al. (2013). Acceptance and Commitment Therapy for fibromyalgia: A randomized controlled trial. European Journal of Pain, 17(4), 599–611.

    Article  CAS  PubMed  Google Scholar 

  14. 14.

    Vowles, K. E., & McCracken, L. M. (2008). Acceptance and values-based action in chronic pain: A study of treatment effectiveness and process. Journal of Consulting and Clinical Psychology, 76(3), 397–407.

    Article  PubMed  Google Scholar 

  15. 15.

    Lillis, J., Luoma, J. B., Levin, M. E., & Hayes, S. C. (2010). Measuring weight self-stigma: The Weight Self-stigma Questionnaire. Obesity, 18(5), 971–976.

    Article  PubMed  Google Scholar 

  16. 16.

    Lillis, J., & Kendra, K. E. (2014). Acceptance and Commitment Therapy for weight control: Model, evidence, and future directions. Journal of Contextual Behavioral Science, 3(1), 1–7.

    PubMed Central  Article  PubMed  Google Scholar 

  17. 17.

    Pearson, A. N., Follette, V. M., & Hayes, S. C. (2012). A pilot study of Acceptance and Commitment Therapy as a workshop intervention for body dissatisfaction and disordered eating attitudes. Cognitive and Behavioral Practice, 19(1), 181–197.

    Article  Google Scholar 

  18. 18.

    Kanter, J. W., Holman, G., Wetterneck, C. T., Tsai, M., & Kohlenberg, R. J. (2014). A new contextual behavioral model for social connection for Functional Analytic Psychotherapy. In Presented at the symposium presented at the Association for Contextual Behavioral Science 12th Annual World Conference, Minneapolis, MN.

  19. 19.

    Reis, H. T., & Shaver, P. R. (1988). Intimacy as an interpersonal process. In S. Duck (Ed.), Handbook of research in personal relationships (pp. 367–389). London: Wiley.

    Google Scholar 

  20. 20.

    Seppala, E., Rossomando, T., & Doty, J. R. (2013). Social connection and compassion: Important predictors of health and well-being. Social Research, 80(2), 411–430.

    Google Scholar 

  21. 21.

    Holt-Lunstad, J., Smith, T. B., & Layton, J. B. (2010). Social relationships and mortality risk: A meta-analytic review. PLoS Medicine, 7(7), e1000316. doi:10.1371/journal.pmed.1000316.

    PubMed Central  Article  PubMed  Google Scholar 

  22. 22.

    Mangabeira, V., Kanter, J., & Del Prette, G. (2012). Functional Analytic Psychotherapy (FAP): A review of publications from 1990 to 2010. International Journal of Behavioral Consultation and Therapy, 7(2–3), 78–89.

    Article  Google Scholar 

  23. 23.

    Diener, E., Emmons, R. A., Larsen, R. J., & Griffin, S. (1985). The Satisfaction with Life Scale. Journal of Personality Assessment, 49(1), 71.

    Article  CAS  PubMed  Google Scholar 

  24. 24.

    Pavot, W., & Diener, E. (2008). The Satisfaction with Life Scale and the emerging construct of life satisfaction. The Journal of Positive Psychology, 3(2), 137–152.

    Article  Google Scholar 

  25. 25.

    The WHOQOL Group. (1998). Development of the World Health Organization WHOQOL-BREF quality of life assessment. Psychological Medicine, 28(3), 551–558.

    Article  Google Scholar 

  26. 26.

    Skevington, S. M., Lotfy, M., O’Connel, K. A., & WHOQOL Group. (2004). The World Health Organization’s WHOQOL-BREF quality of life assessment: Psychometric properties and results of the international field trial. A report from the WHOQOL group. Quality of Life Research, 13(2), 299–310.

    Article  CAS  PubMed  Google Scholar 

  27. 27.

    Berlim, M. T., Pavanello, D. P., Caldieraro, M. A. K., & Fleck, M. P. (2005). Reliability and validity of the WHOQOL BREF in a sample of Brazilian outpatients with major depression. Quality of Life Research, 14(2), 561–564.

    Article  PubMed  Google Scholar 

  28. 28.

    Gloster, A. T., Klotsche, J., Chaker, S., Hummel, K. V., & Hoyer, J. (2011). Assessing psychological flexibility: What does it add above and beyond existing constructs? Psychological Assessment, 23, 970–982.

    Article  PubMed  Google Scholar 

  29. 29.

    Lee, R. M., Draper, M., & Lee, S. (2001). Social connectedness, dysfunctional interpersonal behaviors, and psychological distress: Testing a mediator model. Journal of Counseling Psychology, 48(3), 310–318.

    Article  Google Scholar 

  30. 30.

    Raes, F., Pommier, E., Neff, K. D., & Van Gucht, D. (2011). Construction and factorial validation of a short form of the Self-Compassion Scale. Clinical Psychology & Psychotherapy, 18, 250–255.

    Article  Google Scholar 

  31. 31.

    Sandoz, E. K., Wilson, K. G., Merwin, R. M., & Kellum, K. (2013). Assessment of body image flexibility: The Body Image-Acceptance and Action Questionnaire. Journal of Contextual Behavioral Science, 2(1–2), 39–48.

    Article  Google Scholar 

  32. 32.

    Evans, C., & Dolan, B. (1993). Body Shape Questionnaire: Derivation of shortened “alternate forms”. International Journal of Eating Disorders, 13(3), 315–321.

    Article  CAS  PubMed  Google Scholar 

  33. 33.

    Fairburn, C. G., & Beglin, S. J. (1994). Assessment of eating disorder psychopathology: Interview or self-report questionnaire? International Journal of Eating Disorders, 16, 363–370.

    CAS  PubMed  Google Scholar 

  34. 34.

    Leonard, R. C., Knott, L. E., Lee, E. B., Singh, S., Smith, A. H., Kanter, J., et al. (2014). The development of the Functional Analytic Psychotherapy Intimacy Scale. The Psychological Record, 64(4), 647–657.

    Article  Google Scholar 

  35. 35.

    McCracken, L. M. (2013). Committed action: An application of the psychological flexibility model to activity patterns in chronic pain. The Journal of Pain, 14(8), 828–835.

    Article  PubMed  Google Scholar 

  36. 36.

    Champey, J., Corruble, E., Gottenberg, J., Buhl, C., Meyer, T., Caudmont, C., et al. (2006). Quality of life and psychological status in patients with primary Sjögren’s syndrome and sicca symptoms without autoimmune features. Arthritis Care & Research, 55(3), 451–457.

    Article  Google Scholar 

  37. 37.

    Chen, H., Gould, M. K., Blanc, P. D., Miller, D. P., Kamath, T. V., Lee, J. H., & Sullivan, S. D. (2007). Asthma control, severity, and quality of life: Quantifying the effect of uncontrolled disease. Journal of Allergy and Clinical Immunology, 120(2), 396–402.

    Article  PubMed  Google Scholar 

  38. 38.

    Danieli, E., Airò, P., Bettoni, L., Cinquini, M., Antonioli, C. M., Cavazzana, I., et al. (2005). Health-related quality of life measured by the Short Form 36 (SF-36) in systemic sclerosis: Correlations with indexes of disease activity and severity, disability, and depressive symptoms. Clinical Rheumatology, 24(1), 48–54.

    Article  PubMed  Google Scholar 

  39. 39.

    Hahn, B. A., Kirchdoerfer, L. J., Fullerton, S., & Mayer, E. (1997). Patient-perceived severity of irritable bowel syndrome in relation to symptoms, health resource utilization and quality of life. Alimentary Pharmacology & Therapeutics, 11(3), 553–559.

    Article  CAS  Google Scholar 

  40. 40.

    Welch, G., Weinger, K., & Barry, M. J. (2002). Quality-of-life impact of lower urinary tract symptom severity: Results from the health professionals follow-up study. Urology, 59(2), 245–250.

    Article  PubMed  Google Scholar 

  41. 41.

    Belsley, D. (1991). Conditioning diagnostics: Collinearity and weak data in regression. New York: Wiley.

    Google Scholar 

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Correspondence to Joanna E. Dudek.

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Dudek, J.E., Białaszek, W. & Ostaszewski, P. Quality of life in women with lipoedema: a contextual behavioral approach. Qual Life Res 25, 401–408 (2016). https://doi.org/10.1007/s11136-015-1080-x

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Keywords

  • Lipoedema
  • Quality of life
  • Acceptance and Commitment Therapy (ACT)
  • Functional Analytic Psychotherapy (FAP)
  • Psychological flexibility
  • Social connectedness