Socio-medical situation for long-term survivors of Hodgkin's disease: a survey of 459 patients treated at one institution

We present the socio-medical situation for 459 adult disease-free long-term survivors of Hodgkin's disease (HD) 3-23 years after first line curative t reatment. In 1994, 557 patients were sent a self-report questionnaire relat ing to their social status and 459 patients (82%) replied. Educational or p rofessional plans were changed due to HD in 142 patients (32%). After 6, 12 and 18 months from start of treatment, 52, 82 and 95% of the patients, res pectively, had returned to their job or education. The sum of full-time and part-time employment was in men 78% at diagnosis and 85% at follow-up, and in women 57% at diagnosis and 64% at follow-up. Only 2% of men and 3% of w omen did not have a job at follow-up in 1994. At diagnosis 2% of the patien ts were permanently disabled versus 19% at follow-up in 1994. Age > 40 year s at diagnosis, increased the total score of psychological distress and fat igue and longterm disablement after first line treatment were predictors fo r permanent disablement. Transient or permanent sexual problems were report ed in 16% and 13%, respectively. MVPP (mustine, vinblastine, procarbazine a nd prednisone) or LVPP (chlorambucil, vinblastine, procarbazine and prednis one) chemotherapy was responsible for most cases of early menopause in wome n older than 30 years, and of infertility in both men and women. In summary , most long-term HD survivors had adapted well to their socio-medical situa tion except a high number of permanently disabled patients. By focusing mor e on factors predisposing for permanent disablement and early treatment for these, more patients may be helped to return to their job. (C) 1998 Elsevi er Science Ltd. All rights reserved.