Abstract
Introduction: Children with medical complexity have high care needs, functional limitations, and require frequent hospital presentations. This can be challenging for both children and their families. Despite often being well known to specialty and allied health teams involved in their care, carers reported frustrations with the need to continually provide their child’s medical history to multiple clinicians. Carers also report difficulty recalling information due to their child’s very complex detailed medical histories and lack of continuity with high turnover of healthcare staff. Clinicians also reported relevant information being scattered and difficult to find in the child’s electronic medical record (eMR).
Aim: To develop a care management plan easily accessible for the cohort of General Medicine Chronic and Complex patients in collaboration with carers.
Method: A survey was sent to 52 carers in February 2019 whose child was enrolled in Chronic and Complex Care at the time. This identified that all carers felt that a care plan would be of benefit to improve communication and care coordination. A team of clinicians from General Medicine came together to pilot the Chronic and Complex Individualized Care Plan – CCICP, working with the eMR team to develop a template. The template was first trialled using paper and then embedded in the eMR as a management care plan. Throughout template development, two Chronic and Complex Care Clinical Nurse Consultants (CNC) worked with carers seeking feedback on the content and the usability of the CCICP. The CCICP included a comprehensive summary of the patient’s demographics, diagnoses, medications, clinicians involved in care and specific management plans. All CCICPs were reviewed by carers and their primary lead clinicians prior to completion. The CCICP would be reviewed regularly at clinic appointments, admissions and updated with relevant new information. Evaluation of the CCICP was conducted via survey and informal feedback during care encounters.
Key Findings: To date, 25 CCICPs have been completed. Progress was impacted by redeployment of staff during the COVID-19 Pandemic response. Interviews were conducted with five families and whilst an evaluation survey was sent to clinicians, there was a low response rate. However, verbal and informal feedback regarding the CCICP has been positive. Carers and clinicians reported ease of accessibility with the care plan uploaded to the eMR and printed copies given to carers. Benefits included improved communication between teams and families, more accurate clinical documentation. The care plans empowered carers to advocate for their child’s care, and reduced stress and burden of information repetition. Despite overwhelming benefits for the CCICP, resource limitations exist with the time taken to develop, complete and update the care plans in collaboration with carers. Future digital integration would enable a more dynamic document in the patient record accessible across community and private sector healthcare.