Rare diseases: a biopsychosocial perspective
DOI:
https://doi.org/10.52611/confluencia.num1.2023.883Keywords:
Rare Diseases, Models, Biopsychosocial, Quality of LifeAbstract
Rare diseases generally progress rapidly and aggressively, and are characterised by very low prevalence. There is a great deal of ignorance surrounding the patient's experiences and their therapeutic journey from a biopsychosocial perspective, which leads to delays in the start of the therapeutic journey and non-specific treatments. Objective: To understand and analyse the concept of the therapeutic journey of patients with rare diseases from a biopsychosocial model. Methodology: Narrative review of scientific literature with keywords in the PubMed database. The PRISMA methodology was used as a guide for the selection of articles. The initial search yielded a total of 119 articles, and after reviewing the titles and abstracts, 34 of them were selected for full-text reading. Finally, 28 were used for this review. Development: No article defined the concept of therapeutic odyssey or trajectory; however, both terms are frequently used to refer to the experiences of patients with rare diseases. These experiences have a strong biopsychosocial component and impact on the quality of life of patients and their families. Conclusion: Understanding the therapeutic trajectories of patients with rare diseases is essential for improving the healthcare system and increasing community awareness of rare diseases. Including a therapeutic trajectory perspective with interdisciplinary teams during the care process for people with rare diseases can reduce the impact on biological, psychological, and social dimensions to improve patients' quality of life.
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