Kadmon cGVHD Disease Education

Impact on Patients

cGVHD HAS A SIGNIFICANT IMPACT ON THE OVERALL WELL-BEING OF PATIENTS

cGVHD impacts patients’ QOL

The inflammation and fibrosis associated with chronic graft-versus-host disease lead to multiple physical ailments, some of which include

cGVHD skin lesions

Skin thickening or tightening, as well as painful rashes and lesions on the skin1-3

cGVHD loss of range of motion in joints

Joint stiffness and loss of mobility and dexterity2

cGVHD vision deficiency

Ocular dysfunction3

cGVHD decreased lung function

Lung function impairment, which leads to significant morbidity3-6

Results from multiple studies show that patients with cGVHD reported significantly worse QOL, as measured by various tools, such as the Lee Symptom Scale, the SF-36 and the FACT-BMT.7,8

A multicenter, prospective, observational cohort study evaluated 298 patients with cGVHD. When compared with age- and sex-matched US population normative data, patients with cGVHD had significantly lower scores, as measured by the SF-36 and the FACT-BMT, for8

cGVHD decreased physical ability
Physical Functioning
cGVHD role physical
Role Physical
cGVHD pain throughout body
Bodily Pain
cGVHD overall well-being
General Health
cGVHD diminished strength
Vitality
cGVHD lower social capacity
Social Functioning
cGVHD PCS
PCS

When comparing mean SF-36 scores of patients with moderate to severe cGVHD with those of other chronic health conditions, patients with cGVHD had PCS comparable with8

  Systemic sclerosis

  Systemic lupus erythematosus

  Multiple sclerosis

Patients with moderate to severe cGVHD also showed greater impairment when compared with other conditions, including8

  Chronic lung disease

  Hypertension

  Diabetes

  Arthritis

Fibrosis, in particular, has a negative effect on QOL, especially when affecting the joints or extensive areas of the skin.2,9 This can lead to chronic disability and, in cases where fibrosis spreads to organs such as the lungs, significant mortality.4-6

cGVHD impacts patients’ psychological health

Approximately one-third of patients with moderate to severe cGVHD have clinically significant psychological distress, including depression or anxiety.10

In a prospective observational study evaluating 53 patients with moderate to severe cGVHD, the rates of clinically significant depression and anxiety symptoms were

Infographic of a study showing rates of depression and anxiety in patients with moderate to severe cGVHD were 32.1% and 30.2%, respectively
Infographic of a study showing rates of depression and anxiety in patients with moderate to severe cGVHD were 32.1% and 30.2%, respectively


Greater cGVHD symptom burden was associated with an increased rate of depression.10

In a multicenter, prospective, observational cohort study of 298 patients, when comparing mean SF-36 scores with those of other chronic health conditions, patients with severe cGVHD had MCS comparable with depression.8

cGVHD poses multiple economic challenges for patients

Patients who undergo an allogeneic HCT face financial hardship, which may be further amplified by a diagnosis of cGVHD.

A study that supplemented data from the multicenter, prospective, observational Chronic GVHD Consortium Response Measures Validation Study found that11

Infographic shows that 24% of patients reported difficulty paying medical bills, 28% did not have enough money at the end of the month, 49% reduced spending on utilities and other expenses, 31% used retirement savings and 16% borrowed money or sold assets
24% reported having difficulty paying medical bills
Infographic shows that 24% of patients reported difficulty paying medical bills, 28% did not have enough money at the end of the month, 49% reduced spending on utilities and other expenses, 31% used retirement savings and 16% borrowed money or sold assets
28% did not have enough money at the end of the month
Infographic shows that 24% of patients reported difficulty paying medical bills, 28% did not have enough money at the end of the month, 49% reduced spending on utilities and other expenses, 31% used retirement savings and 16% borrowed money or sold assets
49% reduced spending on utilities and other expenses
Infographic shows that 24% of patients reported difficulty paying medical bills, 28% did not have enough money at the end of the month, 49% reduced spending on utilities and other expenses, 31% used retirement savings and 16% borrowed money or sold assets
31% used retirement savings
Infographic shows that 24% of patients reported difficulty paying medical bills, 28% did not have enough money at the end of the month, 49% reduced spending on utilities and other expenses, 31% used retirement savings and 16% borrowed money or sold assets
16% borrowed money or sold assets

Factors that contributed to this financial burden included multiple treatments, inability to return to work, frequent physician visits and losing/changing insurance.11

Sixty-six percent of patients with cGVHD face a financial challenge after transplant, regardless of insured status.11 Twenty-five percent of patients will lose 20 years of earnings because of permanent disability.12 Overall, patients with cGVHD are significantly less likely to return to the workforce, even 2 to 3 years after transplant, compared with those without cGVHD.13

Even in patients receiving treatment, cGVHD has a considerable impact on QOL, as well as psychological and financial well-being.

cGVHD, chronic graft-versus-host disease; FACT-BMT, Functional Assessment of Cancer Therapy-Bone Marrow Transplant; HCT, hematopoietic cell transplant; MCS, mental component score(s); PCS, physical component score(s); QOL, quality of life; SF-36, 36-Item Short Form Survey.

References: 1. Fiuza-Luces C, Simpson RJ, Ramírez M, Luca A, Berger NA. Physical function and quality of life in patients with chronic GvHD: a summary of preclinical and clinical studies and a call for exercise intervention trials in patients. Bone Marrow Transplant. 2016;51(1):13-26. doi:10.1038/bmt.2015.195 2. Martires KJ, Baird K, Steinberg SM, et al. Sclerotic-type chronic GVHD of the skin: clinical risk factors, laboratory markers, and burden of disease. Blood. 2011;118(15):4250-4257. doi:10.1182/blood-2011-04-350249 3. Henden AS, Hill GR. Cytokines in graft-versus-host disease. J Immunol. 2015;194(10):4606-4612. doi:10.4049/jimmunol.1500117 4. Arora M, Cutler CS, Jagasia MH, et al. Late acute and chronic graft-versus-host disease after allogeneic hematopoietic cell transplantation. Biol Blood Marrow Transplant. 2016;22(3):449-455. doi:10.1016/j.bbmt.2015.10.018 5. Inagaki J, Moritake H, Nishikawa T, et al. Long-term morbidity and mortality in children with chronic graft-versus-host disease classified by National Institutes of Health consensus criteria after allogeneic hematopoietic stem cell transplantation. Biol Blood Marrow Transplant. 2015;21(11):1973-1980. doi:10.1016/j.bbmt.2015.07.025 6. Au BKC, Au MA, Chien JW. Bronchiolitis obliterans syndrome epidemiology after allogeneic hematopoietic cell transplantation. Biol Blood Marrow Transplant. 2011;17(7):1072-1078. doi:10.1016/j.bbmt.2010.11.018 7. Lee SJ, Onstad L, Chow EJ, et al. Patient-reported outcomes and health status associated with chronic graft-versus-host disease. Haematologica. 2018;103(9):1535-1541. doi:10.3324/haematol.2018.192930 8. Pidala J, Kurland B, Chai X, et al. Patient-reported quality of life is associated with severity of chronic graft-versus-host disease as measured by NIH criteria: report on baseline data from the Chronic GVHD Consortium. Blood. 2011;117(17):4651-4657. doi:10.1182/blood-2010-11-319509 9. Baird K, Steinberg SM, Grkovic L, et al. National Institutes of Health chronic graft-versus-host disease staging in severely affected patients: organ and global scoring correlate with established indicators of disease severity and prognosis. Biol Blood Marrow Transplant. 2013;19(4):632-639. doi:10.1016/j.bbmt.2013.01.013 10. Waldman L, Traeger L, Fishman S, et al. Psychological distress in patients with moderate to severe chronic graft-versus-host disease (cGVHD). J Clin Oncol. 2010;36(suppl 15). doi:10.1200/JCO.2018.36.15_suppl.e22137 11. Khera N, Hamilton BK, Pidala JA, et al. Employment, insurance, and financial experiences of patients with chronic graft-versus-host disease in North America. Biol Blood Marrow Transplant. 2019;25(3):599-605. doi:10.1016/j.bbmt.2018.09.040 12. Jones CA, Fernandez LP, Weimersheimer P, et al. Estimating the burden of cost in chronic graft-versus-host disease: a human capital approach. JHEOR. 2016;4(2):113-118. doi:10.36469/9814 13. Wong FL, Francisco L, Togawa K, et al. Long-term recovery after hematopoietic cell transplantation: predictors of quality-of-life concerns. Blood. 2010;115(12):2508-2519. doi:10.1182/blood-2009-06-225631