This study aims to evaluate the costs of informal care for children with neuromuscular disease and evaluate how physical and psychological health is associated with socio-demographic variables. A cross sectional design was used with a convenience sample of 110 carers that participated in this study. Participants were recruited from Spanish hospitals and rare diseases organizations. Economic costs and sociodemographic aspects were assessed using the economic costs questionnaire and the sociodemographic questionnaire. Physical and psychological health was evaluated using the CarerQol-7D, PHQ-15, Barthel Index, Zarit Overload Scale and Satisfaction with Life Scale. Carers of children with neuromuscular disease spent a large percentage of their annual income in physical therapy, psychological care and speech therapy. Informal costs differed according to the degree of dependency of the child. These were higher in those caregivers whose child under their care presented low functional independence. The loss of work productivity was related to marital status, use of professional services and the child’s dependency. Finally, carers who were female, single or separated and without a job showed worse physical and psychological health. The results highlighted that carers have to face a number of high costs because of the non-existence of social protection and due to the child’s diagnosis.

Caregivers’ emotions and finances are affected by the deterioration of functional capacity of patients with Duchenne muscular dystrophy (DMD), both in Mexico and Spain. Patient associations may reduce this impact on caregivers. This study aims to study the role of two models of associations, inspired by two different cultural models, in how the services they provide can help decrease the emotional and financial impact on the caregivers of children with DMD. The sample consisted of 34 caregivers from Mexico and 40 from Spain recruited from Spanish hospitals and rare disease organizations in Spain and Mexico. The instruments used consisted of a sociodemographic and socioeconomic questionnaire, the CarerQol-7D, the PHQ-15, the Zarit Caregiver’s Burden Scale and the SWLS. The results showed that caregivers in Mexico are in better physical and psychological health than caregivers in Spain. They also receive more subsidies than those in Spain. Caregivers in Mexico have a greater well-being and are less affected by the economic impact of the disease due to the associations’ day-to-day work and the fact that they generate a network of health services that they make available to the patient free of charge. These differences may also be attributable to cultural issues and to the fact that Mexico has a deeply established culture of support.

Aim: The study developed and validated AppER, an mHealth tool for informal caregivers of children with Duchenne Muscular Dystrophy, and examined differences between app users and non-users. Methods: Four phases were followed: (1) focus groups with experts and caregivers to identify care-related domains; (2) prototype development and validity testing (CVR, I-CVI, I-FVI) using the MARS scale; (3) implementation of the final app; and (4) psychosocial profiling of 88 caregivers (42 users and 46 non-users) measuring quality of life, dependency, somatic symptoms, and coping strategies. Results: AppER showed high content and face validity, surpassing reference thresholds. In the psychosocial analysis, users reported lower perceived quality of life than non-users, despite no significant differences in dependency, somatic symptoms, or coping strategies. Conclusions: Employment patterns differed: more users were dedicated to household tasks, while more non-users were self-employed, suggesting economic factors may affect app uptake and quality of life perceptions. Findings indicate AppER is a valid, well-rated support tool, and that caregivers with lower perceived quality of life may be more inclined to adopt digital health solutions, potentially to address complex care demands. Designing targeted digital interventions may be particularly valuable for those in less favorable socioeconomic contexts. Because of the small sample and between-group imbalances, results are exploratory and warrant confirmation in larger, balanced samples.