Background There is little research on the specific nursing care needs of advanced HD patients residing in long term care facilities (LTCF), and therefore also little evidence of the efficacy of these interventions. Topaz Huntington Centre Overduin is a 70 beds LTCF for HD patients with over 20 years of experience, and is dedicated to help create evidence based practice for advanced HD patients in long term care.

Aims An innovative project was started (‘Topcare on Tour’) to combine the existing experience with the best available evidence, and to explore what could and should be done to improve daily practice.

Methods A five step method: (1) Focus groups meeting with nursing staff to explore which type of care needs is specific for HD; (2) Evaluate how these nursing care needs are met, based on experience, and describe this in experienced based protocols (EBP); (3) Search of both literature (including similar morbidities) and practice (from focus groups) on potential better alternatives; (4) Choose (small and larger) scale topics to evaluate both current and alternative practices; (5) Update the EBP to Experienced And Evidence Based protocols (E&EBP+).

Results On three wards specific needs of HD patients and nursing care delivery were acknowledged (step1). Interestingly, nurses focused on the domains of patient autonomy and quality of life much more than on specific ADL needs. Specific care protocols and evidence in literature are mostly absent, and experience is transferred informally.

Conclusion Combining experience with evidence is a new and promising method to improve care for HD in LTCF.