Pia Klernas, Aina Johnsson, John Boyages, Hakan Brorson, Alex Munnoch and Karin Johansson. Lymphatic Research and Biology 2018

Main findings

• Using disease-specific patient reports outcomes (PRO) instruments may show intervention-related changes in health-related quality of life (HRQoL) more precisely. Important features of a PRO instrument are validity and reliability, as well as sensitivity and responsiveness.
• The Lymphedema Quality of life Inventory (LyQLI) is a lymphedema-specific PRO instrument that measures HRQoL in patients with lymphedema in various parts of the body.
• The primary purpose of this study was to evaluate the responsiveness of LyQLI. A secondary purpose was to evaluate sensitivity by comparing different patient groups. To evaluate responsiveness, two treatment groups were used:
  • Rehabilitation program (RP) conducting conservative lymphedema treatment in patients with mild/moderate/severe ULL or LLL.
  • LS in patients with moderate/severe ULL or LLL.
• Lymphedema Quality of Life Inventory is a self-managed questionnaire that assesses HRQoL in lymphedema patients. It comprises 45 items. Forty-one items are divided into three multi-item domains: physical (12), psychosocial (16), and practical (13). For each item, the impact of lymphedema over the last 4 weeks is assessed on a 4-point Likert scale (0: None, 1: A little bit, 2: Somewhat, 3: A lot). Scores are presented as the mean for each domain, ranging from 0.0 to 3.0. A higher score indicates lower HRQoL.
• In the rehabilitation program 18 patients completed all measurements.
• In the liposuction group 50 patients completed the measurements. This group was collected from three different clinics.
• Liposuction, which reduces excess volume quickly and in large amounts, so the expected responsiveness is high. The other was an extended conservative treatment program, including the components of the CDT concept. In CDT, excess volume reduction is often more modest, but still significant; so a lower level of responsiveness is expected. This was supported by the results.
• The hypothesis that a domain of several items would be more sensitive than a single item was supported by the results.
• The third hypothesis was that external responsiveness would be at least moderate, that is, a decrease in perceived tension/heaviness would correlate moderately with an increase in HRQoL, and a reduction in limb volume would correlate moderately with an increase in HRQoL. The rehab program (RP) sample, found a ‘‘moderate’’ to ‘‘strong’’ correlation between a decrease in perceived tension/heaviness and an increase in HRQoL. The correlations particularly in perceived tension were significant in two domains. These results indicate that the hypothesis was supported in the rehab sample for perceived tension. However, the relatively small sample size (n=18) may be a limitation. Since both VAS and LyQLI are subjective measurements, it is plausible that they would correlate.
• The reduction in limb volume and the increase in perceived HRQoL in the liposuction-sample were significant; however, the correlation between the two variables was considered low (r<0.3). Therefore, their hypothesis that the two variables should have at least a moderate correlation was not supported.
• LyQLI responsiveness and sensitivity indicated that the tool can be used to evaluate patients undergoing conservative or surgical lymphoedema treatments.