Advanced nursing competencies in rare diseases. A rapid realistic review.

Objective: To identify the advanced competencies developed by nurses in the care of patients with Rare Diseases, exploring how contextual factors interact to generate mechanisms that enable the development of these competencies.

Method: Realist Rapid Review. A reference panel, composed of professionals and stakeholders involved in Rare Diseases, contributed to the development of the research question and the design of the search strategy, which was conducted in Medline, CINAHL, CUIDEN, and grey literature. Data were extracted and analyzed by the researchers, then refined and validated by an expert panel. After data analysis, Context-Mechanism-Outcome configurations (CMOs) were developed, considering the outcomes as nurses´competencies in the care of patients with Rare Diseases.

Results: A total of 1294 documents were identified, of which 25 were selected. Eight Context-Mechanism-Outcome (CMO) configurations were constructed and grouped into three levels: macro (healthcare management policies), meso (associative movement), and micro (related to patients, family, and professionals). The advanced competencies identified and validated were related to case management/continuity of care/coordination between services; training and education; specialization competencies; development of a humanistic profile and patient advocacy; substitution roles/competencies and development of technological competencies.

Conclusions: The developed CMO configurations provide plausible explanations that can contribute to the potential development of an advanced competency profile for nurses caring for patients with Rare Diseases and their families in the Spanish context, thereby enhancing their healthcare delivery.