Development and implementation of a national nursing registry for heart failure
M J Vicente-Galan, M Pumares Alvarez, E M Garcia Marina, J C Trullas, A Vadillo M, B Herreros Ruiz V, B Sanchez Sauce, E Chover Sierra, E Martinez Birlanga, A Gonzalez Franco, L Manzano Espinosa, P Llacer Iborra, J Perez Silvestre, J Casado Cerrada, B Seoane GonzalezAbstract
Introduction
Heart failure (HF) represents a major challenge for healthcare systems due to its high prevalence and its impact on healthcare burden and mortality, particularly among older patients with multimorbidity. At national level, HF registries collect clinical and sociodemographic variables aimed at identifying factors associated with decompensation leading to hospital admissions and emergency department visits. Evidence derived from these registries demonstrates that comprehensive and multidisciplinary HF management, with active nursing involvement, improves survival and reduces hospital readmissions. Advanced Practice Nurses (APNs) in HF play a key role in the management of chronicity from a patient–caregiver dyad perspective. However, there are currently no nationally agreed and standardized registries based on nursing methodology that incorporate essential elements such as health education, caregiver profile, adherence to and monitoring of self-care, or shared care planning. This gap limits the evaluation of the real impact of nursing interventions and the generation of evidence in nursing care.
Main objective
To expand the existing national HF registry within Integrated Heart Failure Management Units by designing and implementing a dedicated nursing registry.
Specific objectives
To record nursing interventions using the nursing process in order to assess their impact on healthcare burden and mortality; to describe the sociodemographic profile and role of caregivers; and to document shared care planning.
Methodology
An initial expert consensus phase was conducted to define variables related to nursing methodology (NANDA, NIC and NOC diagnoses, interventions and outcomes), shared care planning and advance care planning, as well as caregiver profiling.
During the implementation phase, a multicenter, prospective, observational study will be conducted including 3,000 patients with HF and their caregivers, with data collection at baseline and at 6- and 12-month follow-up visits. Validated instruments will be used to assess caregiver burden and quality of life, and descriptive, multivariate and survival analyses will be performed. The project has received ethics committee approval.
Results
As a result of the consensus phase, seven variables related to clinical decompensation, four related to health education and self-care, ten about caregivers, and nine related to shared care planning, including the documentation of advance directives—were defined.
Conclusions
For the first time, a multidisciplinary registry incorporates APNs led HF interventions based on nursing methodology and shared care planning from the patient–caregiver dyad perspective. This innovation is considered essential for a comprehensive evaluation of the impact on healthcare burden and mortality in this chronic condition.Nursing Methodology VariablesFor image description, please refer to the figure legend and surrounding text.Shared Decision-Making VariablesFor image description, please refer to the figure legend and surrounding text.