To identify from the published literature the feasibility and the application of the individualized measures [Patient Generated Index (PGI), Schedule for the Evaluation of Individual Quality of Life (SEIQOL), and the short form of it (the direct weighting SEIQOL-DW)] in the context of cancer and to summarize the evidence on the psychometric properties of these measures.
Ovid Medline, PubMed, Embase, and CINAHL were searched up to April 2016. All studies were included if they reported information about the psychometric properties of the individualized measures and included patients diagnosed with any type of cancer at any age. Effect size (ES) was calculated to test for the responsiveness.
Fifty-four full articles were reviewed. Full-text assessment of these articles resulted in 27 eligible studies that were included in our analysis. The majority of the studies (81%) reported data on the SEIQOL-DW, and only 15% on the PGI. Fourteen areas of quality-of-life (QOL) concerns were identified by patients using the PGI with the top 4 being family (90%), health (85%), finance (85%), and work (80%). At the global level, the correlation between the individualized and standard measures ranged from 0.45 to 0.49 and, at the symptom level, from 0.26 to 0.51. The ES of the individualized measures was high (ranged from 0.98 to 1.0) in the studies that expected high positive change compared to standard QOL measures (ES = 0.1).
Individualized measures are feasible and acceptable among people with cancer and could easily be incorporated clinically and used in a research context. Individualized measures are sensitive to change and cover a wide range of patients QOL concerns in comparison with standard measures.