Assessing and monitoring the impact of lymphoedema/ chronic oedema

The following has been prepared by Dr V. L. Keeley, Consultant in Palliative Medicine, Derby Lymphoedema Service, Royal Derby Hospital, United Kingdom.

LYMQOL has been developed to assess the impact of lymphoedema/ chronic oedema of the arm(s) or leg(s) on the quality of life of patients. It can also be used to monitor the impact of treatment. It has been validated and presented at lymphoedema conferences a further formal publication is in preparation.

• V L Keeley, D Veigas, S Crooks, J Locke, H Forrow.  The development of a condition-specific quality of life measure for lymphoedema (LYMQOL).  European Journal of Lymphology 2004; 12(41) Sp: 36
• British Lymphology Society Annual Conference (2005). The validation of a condition-specific quality of life tool for lymphoedema (LYMQOL).
• International Society of Lymphology Conference (2005) Salvador, Brazil.The validation of a condition-specific quality of life tool for lymphoedema (LYMQOL).
• Keeley V et.al (2010) A quality of life measure for limb lymphoedema (LYMQOL) Journal of Lymphoedema, 5 (1) p26-37 read full article

You are welcome to use LYMQOL, but we would be grateful if you would let us know if you plan to use it and feed back your experiences. We ask you to complete your contact details and intended use on the slip below and return it to us. We would then send you updated versions and results of any further studies we undertake.

There are separate arm and leg questionnaires, Appendix 1 & 2. Scoring is as follows:

Arm: The score for individual responses are provided in the scoring copy of the questionnaire (Appendix 3). If the item is not scored and left blank or the recorded response is not applicable this is scored with a 0.

Domain totals are calculated by adding the individual scores and dividing the total by the number of questions answered. (If >50% of questions per domain are not answered this cannot be calculated and =0).

The four domains and their corresponding questions are:

• Function 1 (a-h), 2, 3.
• Appearance 4,5,6,7,8.
• Symptoms  9,10,11,12,13,14
• Emotion 15,16,17,18,19,20.

Overall quality of life (Q21) is scored as the value marked by the patient, between 0-10.

Leg: The score for the individual responses are provided in the scoring copy of the questionnaire (Appendix 4). If the item is not scored and left blank or the recorded response is not applicable this is scored with a 0.

Domain totals are calculated by adding the individual scores and dividing the total by the number of questions answered. (If >50% of questions per domain are not answered this cannot be calculated and =0).

The four domains and their corresponding questions are:

• Function 1 (a-f), 2,3
• Appearance 4,5,6,7,8,9,10
• Symptoms 11,12,13,14,15
• Emotion 16,17,18,19,20,21.

Overall quality of life (Q22) is scored as the value marked by the patient, between 0-10.

If you have any further questions, please contact Derby Lymphoedema Service, M&G Level 3, Royal Derby Hospital, Uttoxeter Rd, Derby, United Kingdom DE22 3NE or contact Katie Riches, research nurse on (01332) 787931 or Katie.riches@nhs.net