Pediatric Rheumatology Online Journal → August 2003 → Health-Care Delivery → Abstract #181

IS THERE A ROLE FOR A PAEDIATRIC RHEUMATOLOGY CLINICAL RESEARCH NURSE?

P. A. Livermore,¹ N. M. R. Wilkinson,¹ H. Wythe,¹ P. Woo.¹

¹Rheumatology, Great Ormond Street Children's Hospital, London, United Kingdom

We describe the role of a Clinical Research Nurse (CRN) in Paediatric Rheumatology, identifying how this role differs from that of other professionals, the hurdles experienced and solutions required to overcome these problems.
To promote evidence based medicine within the Rheumatology team at Great Ormond Street Children's Hospital a clinical trials team of research co-ordinator, doctor and CRN was created in October 2001. Common roles to these members include protocol development, recruitment, family support, clinical management, data collection, and other administrative duties such as liaison with the pharmaceutical industry. Through nursing contact the CRN is pre-eminent in providing family support, and using the knowledge and experience from managing rheumatological diseases can encourage appropriate child and family expectations. Specific knowledge of research developments and management of trials is used to engender trust and dissipate fears of research. Equally this understanding was used to inform and support colleagues, and to assist in the clinical management of patients, especially monitoring and drug administration.
Particular challenges faced included ethical dilemmas, acquisition of new skills, time management, professional isolation and encouragement of research mindedness amongst nursing colleagues. Managing ethical dilemmas arising from recruitment, trial design, alteration of concomitant medication, treatment failures and adverse events eased with experience, but importantly responsibility for decision-making was spread through the team. Teamwork provided much additional support elsewhere including where support was missing from a formal career structure for research within paediatric nursing. Training in advanced nursing practices, computer skills and management are recommended and good networks of communication are essential.
The CRN has a key role in support of patient, family and colleagues in pursuit of evidence based practice and optimum care. Aided by training and teamwork, the job is enjoyable and rewarding.