Patient-reported outcomes and health status associated with chronic graft- versus -host disease

• Published in: Haematologica (Roma) 2018-09, Vol.103 (9), p.1535-1541
• Main Authors: Lee, Stephanie J, Onstad, Lynn, Chow, Eric J, Shaw, Bronwen E, Jim, Heather S L, Syrjala, Karen L, Baker, K Scott, Buckley, Sarah, Flowers, Mary E
• Format: Article
• Language: English
• Subjects: Adult; Chronic Disease; Female; Graft vs Host Disease - diagnosis; Graft vs Host Disease - epidemiology; Graft vs Host Disease - etiology; Health Care Surveys; Health Status; Hematopoietic Stem Cell Transplantation - adverse effects; Hematopoietic Stem Cell Transplantation - methods; Humans; Male; Middle Aged; Patient Reported Outcome Measures; Quality of Life; Risk Factors; Severity of Illness Index; Transplantation, Homologous
• ISSN: 0390-6078; 1592-8721
• DOI: 10.3324/haematol.2018.192930

Chronic graft- -host disease occurs in 20-50% of allogeneic hematopoietic cell transplant survivors. We surveyed patients about their quality of life, symptoms, health status, comorbid conditions and medications. Instruments included the Short-Form-36 (SF-36), the Patient-Reported Outcomes Measurement Information System (PROMIS) Global and PROMIS-29 scales and the Lee Chronic Graft- -Host Disease Symptom Scale. Functional status was measured by self-reported Karnofsky performance status and work status. Of 3027 surveys sent to recipients surviving one or more years after transplantation, 1377 (45%) were returned. Among these, patients reported that their chronic graft- -host disease was mild (n=257, 18.7%), moderate (n=110, 8.0%) or severe (n=25, 1.8%). Another 377 (27.4%) had never had chronic graft- -host disease and 280 (20.3%) had had chronic graft- -host disease but it had resolved. We excluded 328 (23.8%) patients who did not answer the questions about chronic graft- -host disease. Patients who reported moderate or severe chronic graft- -host disease reported worse quality of life, lower performance status, a higher symptom burden and were more likely to be taking prescription medications for pain, anxiety and depression compared to those with resolved chronic graft- -host disease. Self-reported measures were similar between patients with resolved chronic graft- -host disease and those who had never had it. Our data suggest that the PROMIS measures may be able to replace the SF-36 in the assessment of chronic graft- -host disease. Between 26.7-39.4% of people with active chronic graft- -host disease were unable to work due to health reasons, compared with 12.1% whose chronic graft- -host disease had resolved and 15.4% who had never had chronic graft- -host disease. Mouth, eye and nutritional symptoms persisted after resolution of chronic graft- -host disease. These results show that better prevention of and treatment for chronic graft- -host disease are needed to improve survivorship after allogeneic transplantation.