Review of Patient Reported Symptoms in Patient Recieving Photopheresis (ECP) for Chronic Graft Vs Host Disease (CGvHD) Using the Lee Score

I

Introduction

CGvHD causes functional impairment and the prolonged duration of immunosuppression has a negative impact on quality of life and survival of patients. Response to ECP is an important predictor of improved survival. It has also been shown that the duration of ECP is a predictor of response with improvement in response rates with increasing duration of ECP.

One way of monitoring patient's response is by asking patients there opinion of their symptoms using the Lee score. The primary aim of this study was to assess the impact of ECP on the symptoms of cGVHD for patuients followed up over 18 months.

Method

January 2011 to January 2015 a total of 119 patients started ECP treatment for GVHD under the care of the Rotherham ECP unit. 20 were excluded from this study because they were paediatric and 8 were excluded with acute GVHD. The minimum length of treatment required for participation in this study was 6 months which excluded a further 23 patients. 68 patients were therefore eligible for this study, three were considered to have overlap GVHD and 65 chronic GVHD. Patients all had steroid-dependent or steroid-refractory disease or could not tolerate steroids. All patients gave consent to data collection and participation in clinical studies.

Patients were given the Lee chronic GvHD symptom scale (cGvHD SS) questionnaire (Ref) to assess their health-related QoL on the first day of treatment and at subsequent 3 monthly intervals.

The response was measured at 0, 6, 12, and 18 months. Patients who showed improvement in NIH organ score (> 25% for modified Rodnan's skin score) and /or >% reduction in steroid dose were classified as responders. All the other were in the non-responder group.

Results

Of the whole cohort the mean improvement in the symptom score in the first six months was 7.1 points and between treatment start and 18 months was 8.2. 48% of patients had a clinically significant improvement in the symptoms score in the first 6 months, rising to 53% in 18 months. There was no further improvement in the symptom scale between 6 and 18 months but the improvement in the symptom scale was maintained. After receiving ECP treatment for 6 months, 24 (36%) patients had had a decrease in steroid dose of greater than 75% including 5 patients who discontinued steroids. 16 (24%) patients had a decrease in steroid dose of between 75 and 50% and 15 patients had a decrease in dose but less than 50%. Improvement in skin scores showed a similar pattern with 33 patients having a greater than 50% improvement in the modified Rodnan's score. At treatment start 12 patients had a Rodnan's score of 0 and by 18 months this had doubled to 24 patients. Five patients had no baseline measurement and so were excluded from this part of the analysisBbilirubin levels also decreased within the first 6 months and then remained stable within the normal range. Of the 9 patients who began treatment with a bilirubin level >2mg/dl all were within the normal range by 18 months, with 6 having normal levels within 6 months. Patients with high risk factors, raised bilirubin and/or low platelets at start of treatment have no improvement in patient reported symptoms.

Conclusion

This study shows that patients undergoing ECP have a clinically significant improvement in their symptoms in the first six months after initiation of ECP treatment. This improvement as well as clinical assessments of organs involved is then maintained over at least the next 12 months allowing the steroid dose to be reduced. The Lee score only looks at patient reported symptoms the future will be to look at quality of life data which would include a review the use of FACT BMT and HAP or SF 36.