Systematic review of health-related quality of life and patient-reported outcome measures in Gestational Trophoblastic Disease: A parallel synthesis approach

Gestational Trophoblastic Disease (GTD) is a rare complication of pregnancy that can develop into cancer. Medical outcomes are well researched but evidence is required on the impact of GTD on health-related quality of life (HRQoL) to improve care. The review was conducted to determine the impact of GTD and its treatment on HRQoL and identify how HRQoL is measured and appropriateness of these measures. Quantitative studies found HRQoL in long-term survivors to be at or above population norms. GTD appeared to have a negative impact on HRQoL where patients experience physical, psychological and social sequelae related to the condition. Clinically significant levels of anxiety, depression, sexual dysfunction and fertility-related distress were found. The results should be treated with caution because the evidence base was limited to small heterogeneous samples, retrospective data and the wide range of measures used. Within the qualitative data, new themes emerged including nerve damage, fatigue, amenorrhea, and grief. Currently, these areas are not captured in patient reported outcome measures (PROMs) and the content may not be valid for this population. Further qualitative research could lead to development of a GTD specific PROM providing reliable, meaningful and valid assessments and allowing longitudinal data to be obtained.