COSMIN database

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.
1170-7690 (Print)
Publication year:
Symptom status:
Emotional state
Physical state
Functional status:
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
PRO / non-PRO:
Patient Reported Outcome
Type of measurement instrument:
1 - Questionnaires
2 - Interviews
Assessment of Problems with the Heart Transplant Regimen Instrument
BAASIS - Basel Assessment of Adherence with the Immunosuppressive Regimen Scale
CES-D - Centre for Epidemiologic Studies-Depression Scale   
CLDQ - Chronic Liver Disease Questionnaire
ESRD-SCL (-TM) - End-Stage Renal Disease Symptom Checklist (-Transplantation Module)
Heart Transplant Intervention Scale
Heart Transplant Symptom Checklist
ITAS - Immunosuppressive Therapy Adherence Instrument
ITBS - Immunosuppressant Therapy Barrier Scale
Jalowiec Stressor Scale (or Heart Transplant Stressor Scale)
KDQOL-SF - Kidney Disease Quality of Life-short form
KTQ - Kidney Transplant Questionnaire
LDSI-2.0 - Liver Disease Symptom Index 2.0
LDSI - Liver Disease Severity Index
LSI - Life Satisfaction Index
LTD-HRQL - Liver Transplant Database Health-Related Quality of Life questionnaire
LTMBSES - Long-term Medication Behavior Self-Efficacy Scale
Memphis Survey
MTSOSD-59R - Modified Transplant Symptom Occurrence and Distress Scale 59-Revised
NIDDK-QOL - National Institute of Diabetes and Digestive and Kidney Diseases-Quality of Life
PORTEL - Patient Outcomes Registry for Transplant Effects on Life
PQLS - Pulmonary-Specific Quality of Life Scale
PRQ85 - Personal Resource Questionnaire
QLTP - Questionnaire for Lung Transplant Patients
Rating Question Form
SF-36 - 36-item Short Form Health Survey [alias: RAND-36][alias: Medical Outcomes Study (MOS) SF-36]]    |  | also see:
SGRQ - St. George's Respiratory Questionnaire   
Siegal Scale
Symptom Scale
TCI - Transplant Care Index
TSFQ - Transplant Symptom Frequency Questionnaire
TxEQ - Transplant Effects Questionnaire
Vanderbilt Transplant Centre Patient Satisfaction Inventory