Measuring patient-reported outcomes in solid organ transplant recipients: an overview of instruments developed to date
Cleemput, I. and Dobbels, F.
Improvements in organ preservation methods, immunosuppressive regimens and general post-transplant care have resulted in an increased life expectancy and a continually decreasing morbidity after solid organ transplantation. As attention gradually moves towards improving subjective patient outcomes, the use of patient-reported outcome measures (PROs) thus becomes increasingly important in post-transplant patient management. This paper provides a brief systematic overview of the transplant-specific PRO measures, and their psychometric properties, developed and used in solid organ transplant recipients to date. PRO measures may focus on or encompass different aspects of life relevant to organ transplant patients: overall quality of life (QOL), physical, psychological and social functioning, and adherence. Overall QOL can be measured using transplant-specific or generic QOL instruments, or a combination of both. In general, very little information is available on the psychometric properties of PRO measures, and there is no gold standard for PRO measurement. Transplant-specific and generic PRO instruments are complementary. Generic instruments will continue to be important for economic evaluations, but transplant-specific instruments may be more useful for patient management purposes, as they are generally more sensitive to small but clinically relevant changes in outcomes in transplant populations.
Cognitive/mental functioning Physical functioning Role functioning Social functioning
Overall quality of life:
Overall quality of life
Adults (18-65) Children (0-18) Seniors (65+)
Diseases of and symptoms related to the blood and blood-forming organs and certain disorders involving the immune mechanism Diseases of and symptoms related to the circulatory system Diseases of and symptoms related to the digestive system Diseases of and symptoms related to the eye and adnexa Diseases of and symptoms related to the genitourinary system Diseases of and symptoms related to the respiratory system External causes of morbidity and mortality Injury, poisoning and certain other consequences of external causes Neoplasms and related symptoms Symptoms, signs and abnormal clinical and laboratory findings, not elsewhere classified