Specification of self-reported late-term impairments 3-7 years after primary breast cancer treatment: a nationwide cross-sectional study among Danish breast cancer survivors.

Abstract

Purpose: To describe the characteristics of Danish women treated for primary breast cancer, the prevalence and severity of self-reported late-term impairments, and the registration of these impairments in the Danish National Patient Registry.

Methods: This is a nationwide cross-sectional survey study. A nationwide sample of 9927 women were invited to complete a questionnaire on late-term impairments, including shoulder impairment, lymphedema, fatigue, and chemotherapy-induced neuropathy. Severity was scored on validated patient-reported scales. Clinical characteristics of women and diagnostic codes for "late-term effects" were extracted from the Danish National Patient Registry.

Results: The response rate was 60.9%. The 6046 responders were on average 57 years old at surgery, and 53.5% had a lower education level, 62.7% were married, 56.7% had a body mass index ≥ 25, and 54.4% had one or more co-morbidities. Overall, 60.7% reported having late-term impairments from their breast cancer treatment. The most common impairments were shoulder impairment (75.3%), fatigue (56.9%), chemotherapy-induced neuropathy (49.6%), and lymphedema (26.3%). On average, 58.0% women reporting impairments scored moderate to severe disturbances on validated patient-reported scales. Despite the high self-reported rates, impairments were rarely recorded in the Danish National Patient Registry (lymphedema, 1.3%; fatigue, 0.2%; shoulder impairment, 0.1%; and chemotherapy-induced neuropathy, 0.1%).

Conclusion: More than 60% of Danish breast cancer survivors reported moderate to severe late-term impairments 3-7 years post-treatment, yet these impairments were rarely recorded in the Danish National Patient Registry.

Implications for cancer survivors: Future research should focus on organizational structures in the Danish secondary healthcare, in relation to facilitating screening and timely detection of late-term impairments.