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The paramount role of palliative care in low-prevalence diseases
Article indépendant
BACKGROUND: Low-prevalence diseases (LPDs), previously referred to as orphan diseases or rare diseases, entail a substantial potential for mortality and impose a remarkable burden of symptoms for patients. The process of diagnosing these diseases is often lengthy, and viable treatment options for such conditions are scarce, or in some cases, non-existent.
METHODS: A narrative review was carried out following the Scale for the Assessment of Narrative Review Articles (SANRA) methodology to establish the role of palliative care in the treatment and follow-up of patients with LPDs. A search was carried out by a multidisciplinary team in EMBASE, PUBMED, Web of Science, CINHAL and OVID. Peer-reviewed articles reporting on the role of palliative care in the multidisciplinary treatment of LPDs were included.
RESULTS: The review identified significant areas where palliative care specialists play a crucial role in caring for LPDs. These areas include addressing complex physical and emotional symptoms, assisting patients in adjusting their expectations through genetic counselling, facilitating decision-making across short, medium and long-term perspectives based on disease prognosis, and offering support with care transitions, advanced planning and the grieving process for families.
CONCLUSION: Patients with LPDs and their caregivers experience complex care needs that should be assessed by a palliative care specialist and supported by a multidisciplinary medical group.
http://dx.doi.org/10.12968/ijpn.2023.0039
Voir la revue «International Journal of Palliative Nursing, 31»
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