Accepted for/Published in: JMIR Research Protocols
Date Submitted: Dec 26, 2023
Date Accepted: Feb 26, 2024
(Cost-)effectiveness of Survivorship Care for Hodgkin Lymphoma Survivors (the INSIGHT study): Protocol for a Multicenter Retrospective Cohort Study with a Quasi-experimental Design
ABSTRACT
Background:
Hodgkin lymphoma (HL) occurs at young ages with the highest incidence at ages 20-40 years. Although cure rates have improved to 80-90% over the past decades, HL survivors are at substantial risk of late treatment-related complications, amongst which cardiovascular diseases (CVDs), breast cancer, severe infections and hypothyroidism. The Dutch ’Better care after lymphoma, Evaluation of long-term Treatment Effects and screening Recommendations’ (BETER) consortium developed a survivorship care program for 5-year HL survivors that includes screening for (risk factors for) late treatment-related complications and, in case of positive screening, timely intervention. Although other survivorship care program have been established in several countries, there is insufficient evidence on potential health gains from structured survivorship care in clinical practice.
Objective:
The INSIGHT study evaluates the effect of implementation of Dutch BETER survivorship care program for HL survivors on survivors’ burden of disease from late adverse events, associated healthcare costs and quality of life.
Methods:
The INSIGHT study is a multicenter retrospective cohort study with a quasi-experimental design and prospective follow-up, embedded in the national BETER survivorship care infrastructure. The first BETER clinics started in 2013–2016 and the number of centers participating in BETER is increasing: several centers started/ will start a BETER clinic in 2019–2024. This provides the unique opportunity to evaluate the effectiveness of BETER survivorship care by comparing survivors who did and did not receive such care over the past 6-10 years (n = 450 in both groups). The primary outcome of the INSIGHT study is burden of disease (in disability-adjusted life-years (DALYs)) from CVD, breast cancer, severe infections and hypothyroidism. In a cost-effectiveness analysis, we will assess costs of BETER survivorship care per averted/gained DALY and quality-adjusted life-year. Secondary outcomes are BETER clinic attendance, adherence to screening guidelines, and knowledge and distress about late effects among HL survivors.
Results:
In November 2023, 445 survivors were included in the study intervention group and 34 survivors were included in the control group.
Conclusions:
INSIGHT is the first evaluation of (cost-)effectiveness of a HL survivorship program using real-world data. Results will contribute to more effective, evidence-based cancer survivorship care. Clinical Trial: NA
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