Health-related quality of life in patients with lymphoedema – a cross-sectional study

Pia Klernas , Aina Johnsson , Vibeke Horstmann and Karin Johansson. Scand J Caring Sci; 2017

Click to read the abstract

Ab Health-related quality of life in patients with lymphoedema – a cross-sectional study

Pia Klernas , Aina Johnsson , Vibeke Horstmann and Karin Johansson. Scand J Caring Sci; 2017

Introduction: Lymphoedema may cause complex problems that can strongly influence patients’ health-related quality of life (HRQoL). The main purpose of this study was to investigate the impact of lymphoedema on HRQoL in patients with varying forms of lymphoedema.

Methods: The Lymphoedema Quality of Life Inventory (LyQLI), measuring three domains, physical, psychosocial and practical, and the Short Form 36 Health Survey Questionnaire (SF-36), measuring eight health domains, were sent to 200 lymphoedema patients. Out of those who answered both questionnaires, 88 patients had lymphoedema secondary to cancer treatment and they additionally received the Functional Assessment of Cancer Therapy Scale-General (FACT-G). The relation between continuous variables and the three domains were analysed by Spearman’s correlation coefficients, and Kruskal– Wallis test was used to analyse categorical variables.

Results: Altogether 129 patients completed the LyQLI and SF-36 and 79 of them also completed FACT-G. Twenty per cent had a high mean score (≥2.0) in at least one domain of the LyQLI, thus having a low HRQoL. Lower HRQoL was found in the practical domain of LyQLI in patients with lower limb lymphoedema compared to patient with lymphoedema in upper limb or head/neck (p = 0.002) and in patients working part-time compared to patients working full-time (p = 0.005). The impact on HRQoL tended to decrease with age, with a significant correlation in the psychosocial domain (rs = 0.194, p = 0.028). Compared with the general Swedish population, patients with lymphoedema scored significantly lower in general health (p = 0.006), vitality (p = 0.002) and social functioning (p = 0.025) assessed by the SF-36. From a cancer-specific view, HRQoL was similar to other Swedish studies using the FACT-G.

Conclusions: This study indicates that about 20% of the patients with lymphoedema had major impact on their HRQoL. More effort and research is needed to identify, understand and support groups of patients with severe lymphoedema-related problems.

Main findings

  • One of the limitations of the present study is that the sample size is relatively small.
  • Health-related quality of life (HRQoL) was evaluated via the questionnaire LyQLI.
  • The principal findings indicate that the lymphoedema patients had significantly lower general health, vitality and social functioning compared with the general Swedish population.
  • The results from the LyQLI showed that physical symptoms like swelling/tightness, heaviness and the inconveniences of physical awareness of the lymphoedema were problems that most influenced HRQoL.
  • Psychosocial problems such as frustration/annoyance, embarrassment, negative self-image, limitations and attention to the condition had a big impact on the participants’ HRQoL.
  • Findings also showed that practical problems such as finding clothes and shoes that fit highly impact HRQoL.
  • Outcomes from this study showed that patients working part-time were more affected in HRQoL concerning physical and practical problems compared with patients working full-time. The explanation may be that the patients worked part-time because of their impairments.
  • Patients with LLL/genitalia lymphoedema had a tendency to report more impact on HRQoL compared with patients with ULL and head/neck lymphoedema, especially in the practical domain where the differences were significant.