Lymphedema and Health-Related Quality of Life

Sammanfattning: The overall aim of this thesis was to develop a lymphedema-specific instrument for measuring health-related quality of life (HRQoL) and to evaluate how persons with lymphedema experience HRQoL. Lymphedema is defined as swelling in one or more parts of the body that is due to impaired lymph drainage and transport. The impairments in the lymph system can be congenital or secondary to, e.g., cancer treatment. The fact that lymphedema is often chronic emphasizes the importance to measure HRQoL. To this purpose the Lymphedema Quality of Life Inventory (LyQLI) was developed and psychometrically tested in two studies [Papers I and II presented here]. Further, the LyQLI was used to evaluate HRQoL in a cross-sectional study [Paper III] and a longitudinal study of two different interventions [Paper IV]. Methods: In Study I, 126 patients with lymphedema in the limbs and/or genital, breast, or head and neck regions participated by twice completing the LyQLI, to assess the validity and reliability of the instrument. In Study II, 68 patients with upper (ULL) or lower limb lymphedema (LLL) participated in a trial to examine the responsiveness and sensitivity of the LyQLI. The standardize response means (SRM) was used to evaluate responsiveness, and box plots were applied for sensitivity. In Study III, Spearman’s correlation coefficient, Kruskal-Wallis test, and Mann-Whitney U-test were performed to compare different lymphedema subgroups. The Wilcoxon signed-rank tests was applied to compare the lymphedema population to the general Swedish population using the 36-item Short-Form Health Survey (SF-36). In Study IV, changes in HRQoL after two different interventions, conservative treatment with a rehabilitation program (RP) and surgical treatment with liposuction (LS), were evaluated. The RP was conducted in one site in Sweden, and LS was performed in three different countries, Australia, Scotland, and Sweden. In total, 75 persons with lymphedema completed the LyQLI before the interventions and after 1, 3, 6, and 12 months. Results: In Paper I, the results of the reliability tests show that the intraclass correlation coefficient (ICC) was moderate, and Cronbach’s alpha was moderate to high. The concurrent validity was considered moderate. Also the results of the SRM and box plot calculations [Paper II] were considered moderate. Paper III, shows that the majority of the participants experienced low impact of the lymphedema on HRQoL, although 20% reported high impact. The study’s results also show that some subgroups, e.g., younger persons, persons with LLL, and persons working part-time experienced high impact on HRQoL. Further, the results show that the lymphedema population rated lower HRQoL than the general Swedish population. In Paper IV, results show that 45% of participants in the LS sample experienced high impact on HRQoL at baseline. Both interventions improved the participants’ HRQoL. In the LS sample, the improvement continued to increase until the end of the study, 12 months after surgery.Conclusions: The LyQLI is a reliable and valid HRQoL instrument suitable for use in the clinic or in cross-sectional studies including patients with lymphedema, irrespective of which part of the body is affected. Responsiveness and sensitivity were tested in patients with LLL or ULL; consequently, the LyQLI can be used in longitudinal studies in patients with lymphedema in the limbs. Altogether 20% of the persons with lymphedema had high impact of the disease on HRQoL, but in some subgroups the impact was even higher and it is important that these individuals be identified. For this purpose, the LyQLI may be an important instrument, which can also be used to identify patients’ lymphedema-related problems and concerns, and determine the kind of support they need.