COMPARISON OF METHODS FOR ITEM GENERATION AND PRETESTING OF FIVE LYMPHOEDEMA-SPECIFIC HEALTH-RELATED QUALITY OF LIFE QUESTIONNAIRES

Author(s)

Williams AEBiomarin Europe Ltd, London, United Kingdom

OBJECTIVES: A systematic literature review identified four patient-reported outcome (PRO) measures that have been used in the assessment of quality of life for patients with upper limb lymphoedema. These are in addition to the author’s newly devised questionnaire.  However the developers had all used different methods to devise the items with the final measures incorporating different items and domains.  The objective was to compare the methods that had been used and review in the light of available guidance on best practice. METHODS: Review and tabulate the available information on each PRO regarding its development.  Key aspects of the evaluation included specificity of target population, source of item generation, number of initial items generated, drafting of item/question wording, pretesting and defining the domains. RESULTS: Two of the five PROs had been developed to assess the quality of life of patients with upper or lower limb lymphoedema decreasing the specificity of the target population; two of the PROs did not use patients as the source for items relying on clinicians; the number of items initially generated by the remaining three PROs were 98, 134 and 495, but none of the developers evaluated the point of saturation; different approaches were used for analyses of the items generated to create the initial draft of items/questions; not all PROs were pretested. Number of domains ranged from two to seven and number of items/questions in initial drafts ranged from 5 to 70. CONCLUSIONS: Each of the PROs measuring the same concept have been developed using different methods of generating the items and pretesting an initial draft of the PRO.  To advance the field of measuring quality of life of lymphoedema patients, it will be important to establish which PRO measure has the best validity, that is, best reflects the impact of lymphoedema on their health and well-being. 

Conference/Value in Health Info

2010-11, ISPOR Europe 2010, Prague, Czech Republic

Value in Health, Vol. 13, No. 7 (November 2010)

Code

PMC53

Topic

Patient-Centered Research

Topic Subcategory

Patient-reported Outcomes & Quality of Life Outcomes

Disease

Multiple Diseases

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