Quality of Life Questionnaires in Breast Cancer-Related Lymphedema Patients

Review of the Literature

Anouk J.M. Cornelissen, Melissa Kool, Xavier H.A. Keuter, Esther M. Heuts, Andrzej A. Piatkowski de Grzymala, Rene´R.W.J. vander Hulst, and Shan Shan Qiu. Lymphatic Research and Biology Feb 13, 2018

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Quality of Life Questionnaires in Breast Cancer-Related Lymphedema Patients: Review of the Literature

Anouk J.M. Cornelissen, Melissa Kool, Xavier H.A. Keuter, Esther M. Heuts, Andrzej A. Piatkowski de Grzymala, Rene´R.W.J. vander Hulst, and Shan Shan Qiu. Lymphatic Research and Biology Feb 13, 2018

Purpose: Lymphedema of the arm is one of the most common and underestimated side effects of breast cancer treatment. It is known to negatively affect the quality of life (QoL) in breast cancer survivors. However, there are multiple questionnaires used to measure QoL in lymphedema patients. The current study aimed to determine the most complete and accurate questionnaire.

Methods: A systematic literature search in Cochrane Library database CENTRAL, MEDLINE, and EMBASE was conducted in August 2016 by two independent researchers. The strategy used for the search was: ((‘‘Lymphedema’’[Mesh]) AND (‘‘Quality of life’’[Mesh])). All QoL questionnaires for patients with breast cancer-related lymphedema (BCRL) were included. An overview of the assessed QoL domains and arm symptom-specific questions was made, to assess the most complete and accurate questionnaire.

Results: A total of 142 studies were identified, of which 49 met the inclusion criteria and 15 different questionnaires were extracted. The Lymphedema Quality of Life Inventory (LyQLI), assesses all QoL domains, except for the possibility of wearing the clothes of choice, and assess all specific arm symptoms. The Lymphedema Functioning, Disability, and Health (Lymph-ICF) Questionnaire assesses all QoL domains, except for sexual functioning, and does assess all specific arm symptoms.

Conclusion: According to the results obtained, the LyQLI and Lymph-ICF questionnaires were the two most complete and accurate questionnaires to assess QoL in patients with BCRL, because these questionnaires assess the largest number of QoL domains and specific arm symptoms.

Main findings

  • Questionnaire characteristics
    • The 15 identified questionnaires were subdivided in three categories:
      • Group I: General health questionnaires; this group consisted of six questionnaires.
      • Group II: Cancer-specific questionnaires; this group consisted of three questionnaires.
      • Group III: Lymphedema-specific questionnaires; this group consisted of six questionnaires.
  • All of the assessed questionnaires were validated previously. In group I, one out of six questionnaires used a combination of visual analogue scale (VAS) score and categories. The rest of the questionnaires used categories. All the questionnaires reported on mental function. Only one questionnaire reported on hobbies and jobs. Four questionnaires reported on physical function and daily activities. In addition, only one questionnaire included questions on mobility, two on social activity, and one on sexual function. The DASH questionnaire was the only questionnaire in this group which assessed all QoL domains.
  • Previous studies showed that lymphedema of the arm in breast cancer survivors did not influence global QoL. However, there was a major impact on many specific symptoms such as fatigue and arm symptoms. This suggests that more specific PROMs are needed to measure QoL. In this context, to measure the impact of lymphedema on QoL it is not only important to assess global QoL and the different QoL domains, but also to assess all specific arm symptoms.
  • An important difference between the Lymph-ICF and the LyQLI is the answer type. The Lymph-ICF uses VAS, whereas the LyQLI uses categorical answers. A VAS is commonly used to rate various subjective experiences, and therefore it is often used in QoL measurements. Potential advantages of these scales are the wide score range and high sensitivity. An important disadvantage is that they have a lower completion rate than other rating scales.
  • Lymph-ICF and LyQLI questionnaires seem to be the two most complete and accurate questionnaires to assess QoL in patients. Based on these results, one of these two questionnaires should be used in research and clinical practice concerning QoL in BCRL patients.