Design of the INSIGHT study, evaluation of long-term follow-up care for lymphoma survivors in the Netherlands: does survivorship care at the BETER clinics reduce morbidity and mortality from late effects of lymphoma treatment and associated costs?
Hodgkin lymphoma (HL) survivors are at substantial risks of serious late adverse treatment effects. The BETER consortium developed a nationwide infrastructure of outpatient clinics where 5-year HL survivors are screened and treated for adverse effects of lymphoma treatment according to nationally approved screening guidelines. BETER survivorship care includes risk-based screening for and treatment of (risk factors for) cardiovascular disease (CVD), breast cancer, hypothyroidism and (functional) asplenia.
So far, evidence for the actual cost-effectiveness of structured cancer survivorship care in clinical practice is lacking. Current knowledge is based on simulation and modelling approaches and evidence from other populations (e.g. BRCA mutation carriers). In the INSIGHT study we will assess the (cost-)effectiveness of BETER survivorship care using data from clinical practice.
The first BETER clinics started in 2013-2016 and the number of centres participating in BETER is quickly expanding: several centres started/will start a BETER clinic in 2021-2024. This allows for a retrospective cohort study with a quasi-experimental design to evaluate the effectiveness of BETER survivorship care by comparing survivors who did and did not receive BETER survivorship care. Once full nationwide implementation is in place, this comparison is no longer possible.
In the INSIGHT study we will compare 450 HL survivors invited for BETER survivorship care in 2013-2016 with 450 matched survivors invited by a BETER clinic starting in 2021-2024, allowing for a median follow-up of ~8 years. The primary outcomes are burden of disease (in disability-adjusted life-years, DALYs) from CVD, breast cancer, hypothyroidism and (functional) asplenia, associated health care costs, quality of life and health-related productivity losses. Secondary outcomes are BETER clinic attendance, guideline adherence and knowledge and risk perception of late effects. In a cost-effectiveness analysis we will calculate costs/DALY and costs/QALY of BETER survivorship care.
BETER is an internationally unique initiative of an elaborate infrastructure for adult oncology survivorship care. To our knowledge, INSIGHT is the first evaluation of (cost-)effectiveness of cancer survivorship care in clinical practice. The results will contribute to more effective, evidence-based long-term cancer survivorship care. At ISHL12 we will present design details as well as participation rates.