# High societal costs and reduced health-related quality of life in inflammatory and systemic immune disease-associated dilated cardiomyopathies

## TL;DR

Inflammatory and systemic immune disease-related dilated cardiomyopathy leads to worse quality of life and higher costs compared to other types.

## Contribution

This study identifies specific subgroups of dilated cardiomyopathy with distinct impacts on quality of life and societal costs.

## Key findings

- Inflammatory and systemic immune disease-associated DCM have lower quality of life and higher societal costs.
- Healthcare costs are highest for inflammatory DCM patients.
- These findings can guide tailored patient management and resource allocation.

## Abstract

Dilated cardiomyopathy (DCM) comes with an estimated societal cost of above €10,000 per patient per year and a lower quality of life (QoL). However, DCM represents a heterogeneous disease with different aetiologies that can be combined in subgroups. Insight in QoL and societal costs per DCM subgroup may guide resource allocation, research focus areas, and tailored patient management. We investigated subgroup-specific costs and QoL in patients with DCM.

Patients with DCM (n = 550) were included, all phenotyped by endomyocardial biopsy and genetic testing besides routine cardiac evaluation. Patients were classified as chemotherapy-induced DCM (n = 27), genetic DCM (n = 91), inflammatory DCM (n = 53), systemic immune-mediated disease (SID)-associated DCM (n = 83), alcohol-induced DCM (n = 40), and idiopathic DCM (n = 280). QoL and societal costs were cross-sectionally evaluated using the EQ-5D-5 L and the iMTA medical and productivity cost questionnaires, sent at 8 [IQR 5; 12] years after cardiomyopathy diagnosis.

Compared to other subgroups, QoL was lower for inflammatory DCM (-0.053 [-0.106; -0.003], p = 0.04), SID-associated DCM (-0.078 [-0.126; -0.031], p < 0.01), and alcohol-induced DCM (-0.079 [-0.141; -0.017], p = 0.01). Societal costs were higher for patients with inflammatory DCM (19,197€ [13,703 − 27,211]; log-transformed change + 0.862 [0.103; 1.621], p = 0.03), and SID-associated DCM (19,197€ [8,494 − 25,623]; log-transformed change + 0.804 {0.104; 1.505], p = 0.03). Healthcare costs were highest for patients with inflammatory DCM (6,198€ [4,083 − 8,626], log-transformed change + 0.614 [0.039; 1.189] p = 0.049).

Patients with DCM due to chronic myocarditis or a SID have lower QoL and higher societal costs due to higher healthcare costs, compared to patients with DCM and other etiologies. These findings may guide resource allocation, research focus areas, and tailored management such as patient education, financial counseling, and psychological support.

The online version contains supplementary material available at 10.1007/s11136-025-04027-5.

What is already known

What this study adds

Dilated cardiomyopathy comes with a staggering societal cost of > 10.000€ per patient per year while impacting quality of life.

Dilated cardiomyopathy is a heterogeneous disease with diverse aetiologies.

Understanding underlying the impact of each aetiology on costs and quality of life may further guide resource allocation and patient management.

Aetologies of dilated cardiomyopathy come with their own societal cost characteristics and quality of life impact.

Inflammatory, systemic immune disease-associated, and alcohol-induced dilated cardiomyopathy have a worse quality of life, while the former two come with higher societal costs.

These findings help us in tailoring patient management such as in patient education, financial counseling, and psychological support.

The online version contains supplementary material available at 10.1007/s11136-025-04027-5.