The quality of life of long-term survivors of Hodgkin's disease

Abstract

Background: The large majority of studies of the quality of life of cancer survivors has been carried out in the United States, and has employed a follow-up period of less than 10 years. As one cannot assume that the results of these studies can be generalized to the European setting, a study was undertaken of the quality of life of long-term survivors of Hodgkin's disease in The Netherlands.

Patients and methods: The patient sample was composed of 81 former Hodgkin's disease patients who had been treated in The Netherlands Cancer Institute in the period between 1972 and 1979, and who had remained disease-free since the time of initial treatment. One hundred sixteen hospital visitors, matched for age and statistically adjusted for gender, formed a control group. A Dutch translation of the MOS 36-Item Short-Form Health Survey (SF-36) was used to assess a range of health status and quality-of-life domains. Also included were two multi-item scales assessing intimacy and sexuality, and a range of single items assessing finances, insurance and work status.

Results: In comparison with the healthy controls, cases reported significantly: (1) more restrictions in physical functioning (primarily in strenuous levels of activity) and in role functioning (work and daily activities); (2) lower perceived overall health; (3) less satisfaction with their sexual lives; (4) greater difficulty in obtaining financial loans and life insurance; and (5) more health-related employment limitations. No significant differences were noted between cases and controls in social functioning, bodily pain, mental health, vitality, satisfaction with the (non-sexual side of the) partner relationship, or in obtaining health insurance.

Conclusions: The self-reported health status and quality of life of recurrence-free survivors of Hodgkin's disease is still affected 10 to 18 years after treatment. In particular, physical and role functioning, sexuality, and overall health perceptions appear to be compromised. While some evidence of discrimination against former cancer patients was found, the magnitude of such problems appears to be lower in the Netherlands than in the United States.