Registering patient reported symptoms in patients with lymphoedema – is there a validated questionnaire with good psychometric properties?

Hanne Paltiel, Spesialist i onkologisk fysioterapi, spesialfysioterapeut. Klinikk for Kliniske servicefunksjoner, St. Olavs Hospital, Universitetssykehuset i Trondheim. hanne.paltiel@gmail.com.

Inger-Lise Nesvold, Avdelingsledende fysioterapeut, PhD. Oslo Universitetssykehus.

Ingrid Riphagen, informasjonsmedarbeider, MSc, Norges teknisknaturvitenskapelige Universitet, NTNU, Trondheim.

Wilma van de Veen, spesialfysioterapeut. Klinikk for Kliniske servicefunksjoner, St. Olavs Hospital, Universitetssykehuset i Trondheim.

Abstract

Purpose: Patients with lymphoedema report various symptoms. In Norway objective treatment measures have primarily been utilized. Hence we saw a need to study available questionnaires and identify those which register patient reported symptoms.

Method: Standard text books were reviewed and searches made in PubMed, Embase, BNI, Ovid Nursing Database and CINAHL. Text books and the identified articles were reviewed to get an overview of registered symptoms, clinical viability of the questionnaires, their psychometric properties and other relevant factors for registering lymphoedema and evaluating treatment.

Result: Fourteen articles met the inclusion criteria, and 16 questionnaires were identified.  Swelling or a feeling of swelling, heaviness, numbness, tightness and pain were most frequently registered. Four questionnaires did not describe the psychometric properties and the remaining 12 had varying levels of validity and reliability. Several methods of scoring were utilized; categorical yes/no, various Likert scales and VAS. Several time scales were used. Five questionnaires had 50 questions or more.

Conclusion: Several validated questionnaires which register subjective symptoms in patients with lymphoedema were identified. Some provide the means to ensure a more accurate assessment. LYMFQOL arm and LYMFQOL leg assess the most frequently reported subjective symptoms on a user-determined time scale. A 4-part Likert scale for grading the severity of the symptoms is used. Both questionnaires are tested for validity and reliability with satisfactory results. LYMFQOL arm and leg register health related quality of life and can help the physiotherapist to select appropriate treatment. A Norwegian version of both questionnaires has been pilot tested. 

Key words: lymphoedema, questionnaire, subjective symptoms.

Download the full article in Norwegian.