Amyotrophic lateral sclerosis in Argentina: unveiling the burden of treatment through patient and caregiver perspectives

Abstract

Purpose

To examine the burden of treatment (BoT) experienced by people with Amyotrophic Lateral Sclerosis (ALS) in Argentina.

Methods

Qualitative methodological design based on semi-structured interviews. Nineteen semi-structured interviews were conducted (PwALS = 7, informal caregivers= 12). The interview guides were designed based on the literature and BoT theory. Data were analysed following a framework analysis approach.

Results

The research highlighted the arduous journey toward obtaining a diagnosis, marked by delays influenced by healthcare system inefficiencies, lack of disease awareness and pandemic-related anxiety. Receiving the diagnosis was a destabilising experience, triggering the need to reframe self-identity, a new reality. As the disease progressed, patients encountered significant challenges in their daily activities and basic tasks, affecting their ability to work, communicate, and manage personal care. The burden extended beyond the patients to their primary caregivers. Access to specialised care, bureaucratic complexities in securing treatment, and the financial impact of managing the disease posed substantial challenges.

Conclusion

The findings offer valuable insights into the experiences of PwALS and their caregivers in Argentina. They underscore the need for increased disease awareness, improved access to specialised care, and enhanced support networks to alleviate the burdens PwALS and their families face.

IMPLICATIONS FOR REHABILITATION

• Streamlined pathways for patients with amyotrophic lateral sclerosis in Argentina are necessary to ensure timely access to comprehensive support and interventions, laying the foundation for holistic rehabilitation.

• There is a need to encourage clear communication between healthcare providers and patients to establish ongoing dialogue incorporating emotional, social, and psychological aspects into rehabilitation, aligning with patient-centric approaches.

• There is a need to develop and implement adaptive rehabilitation strategies to sustain independence and enhance quality of life for amyotrophic lateral sclerosis patients, addressing the physical, emotional, and social implications of the disease’s progression.

• Rehabilitation professionals should advocate for systemic improvements to ensure equitable access to therapies and support alleviate financial burdens, enabling a comprehensive, patient-focused approach to rehabilitation.

Keywords:

• Burden of treatment
• ALS
• Argentina
• qualitative research
• caregivers
• health services

Acknowledgement

We thank all participants for sharing their experiences.

Disclosure statement

The authors report no conflict of interest.

Additional information

Funding

This work was supported by the Ministry of Science, Technology and Innovation (MINCyT) and the Esteban Bullrich Foundation grant: Social Research Competition on Amyotrophic Lateral Sclerosis.