A Guideline for Parkinson’s Disease Nurse Specialists, with Recommendations for Clinical Practice

Article type: Research Article

Authors: Lennaerts, Herma^{a; *} | Groot, Marieke^b | Rood, Berna^a | Gilissen, Koen^c | Tulp, Hella^d | van Wensen, Erik^e | Munneke, Marten^a | van Laar, Teus^f | Bloem, Bastiaan R.^a

Affiliations: [a] Radboud University Medical Center, Donders Institute for Brain, Cognition and Behaviour, Department of Neurology, Nijmegen, The Netherlands | [b] Department of Anaesthesiology, Pain and Palliative Care, Radboud University Medical Center, Nijmegen, The Netherlands | [c] Department of Neurology, Medical centre Alkmaar, Alkmaar, The Netherlands | [d] Department of Neurology, Elkerliek Hospital, Helmond, The Netherlands | [e] Department of Neurology, Gelre Hospital, Apeldoorn, The Netherlands | [f] Department of Neurology, University Medical Center Groningen, University of Groningen, Groningen, The Netherlands

Correspondence: [*] Correspondence to: Herma Lennaerts, Radboudumc, Reinier Postlaan 4, 6500 AB Nijmegen, The Netherlands. Tel.: +3124 3614701; E-mail: herma.lennaerts@radboudumc.nl.

Abstract: Background:Parkinson’s Disease Nurse Specialists (PDNS) play an important role in the care for patients with Parkinson’s disease (PD) and their caregivers. Until now, there were no nursing guidelines in PD, and interventions were based solely on daily clinical practice because there is no evidence to support the merits of nursing interventions. Consequently, there is little uniformity in current care delivery. Objective:Developing a guideline for PDNS. Methods:We developed a guideline based on a questionnaire among PDNS and a literature review, supplemented with expert opinion plus the input of patients and caregivers. The questionnaire was filled in by 97 PDNS and 51 generic nurses with knowledge of PD to identify barriers in PD nursing care. Subsequently, we did a systematic literature search and transformed these sources of information into practice recommendations, which were developed according to international standards for guideline development. Results:Based on the results of the questionnaire we identified seven specific core areas: defining the role of PDNS in terms of caseload, education, competences and care coordination; medication adherence; provision of information and education; coping; caregiver support; urogenital function and orthostatic hypotension. The systematic literature search identified 186 studies, of which 33 studies were finally analyzed. Furthermore, we developed practice recommendations based on good clinical practice for the following areas: self-care, mental functioning, mobility, nutrition, sexuality, work, sleep, palliative care and complementary (integrative) care. Conclusion:This guideline provide ground to harmonize care delivery by PDNS in clinical practice, and offer a foundation for future research.

Keywords: Evidence-based medicine, Parkinson’s disease, Parkinson’s Disease Nurse Specialist, guideline

DOI: 10.3233/JPD-171195

Journal: Journal of Parkinson's Disease, vol. 7, no. 4, pp. 749-754, 2017