The Central and Northern Adelaide Local Health Networks in South Australia (SA) oversee four major hospitals and a range of sub-acute and primary health care services. The Respecting Patient Choices (RPC) Program has been rolled out progressively across the two Networks, in parallel with the country Network, by a Project Team. The Project has worked towards embedding Advance Care Planning (ACP) and appropriate use of advance care plans across the health continuum. It has focused on supporting organisations through: training; developing system support and accessible resources; strengthening partnerships; and facilitating strong leadership in ACP. The lessons from this project have been integrated into a state-wide model for ACP which includes: the establishment of an RPC Trainer/Liaison position to support trainers Statewide; and aims to have a network of RPC Portfolio Leads in organisations responsible for maintaining ACP development. In SA over 2,500 RPC Facilitators are trained across ∼250 organisations including acute, GP Divisions, aged care, and community services. The Program has brought about improvement in ACP. For example: within 67 organisations, over 1400 patients are registered with ACP hospital Alerts, with an estimated 1600 created in the community above base line in 12 months. RPC in SA is assisted by effective legislation, Consent to Medical Treatment and Palliative Care Act 1995, producing policy that enables health workers to honour ACP. RPC is bringing to effect SA's Health Care Plan commitment to provide ACP as part of appropriate care to the older person and transmission to a sustainable model is underway.
BACKGROUND Hypertrophic olivary degeneration (HOD) is a rare condition that can occur after disruption of the Guillain-Mollaret triangle. Clinically, HOD can present with palatal myoclonus with or without oculopalatal tremor, which sometimes results in symptomatic dysphagia and/or speech abnormalities. This condition is commonly associated with vascular lesions, with only three prior reported cases of HOD resulting from intracranial abscess. OBSERVATIONS An otherwise healthy patient developed multiple intracranial abscesses. Biopsy showed gram-positive cocci; however, culture findings were negative. Polymerase chain reaction (PCR) identified Streptococcus intermedius. The patient demonstrated palatal myoclonus and vertical nystagmus, which resulted in persistent mild dysphagia and altered speech intonation. After appropriate antimicrobial therapy with resolution of the enhancing lesions, symptoms persisted. Follow-up imaging demonstrated progressive hypertrophy of the right olive with persistent disruption of the right-sided rubro-olivo fiber pathways. LESSONS Although HOD classically occurs after vascular insult, it can also be seen as a postinfectious sequela. Despite eradication of the infection, palatal myoclonus and oculopalatal tremor may have a persistent impact on quality of life due to impaired speech and swallowing. This case emphasizes the utility of universal PCR in detecting fastidious organisms as well as diffusion tensor imaging for characterization of disrupted fiber pathways.
Multidisciplinary oncology care requires a team of experts which should include patient stakeholders. The Henry Ford Health System (HFHS) Hermelin Brain Tumor Center (BTC) patient and family advisory council (PFAC) recommended a focus group of patient stakeholders newly diagnosed with glioblastoma(GBM) to better understand this experience. Our PFAC, comprised primarily of long-term survivors and patient advocates, felt the perspective of newly diagnosed patients may not be adequately represented. We reviewed the BTC tumor board records, identified patients within six months from GBM diagnosis, and invited these patients and their advocates to participate in an in-person session held November 2019. The BTC Patient Resource Coordinator who is also a brain tumor survivor led the session. Predefined questions prompted discussion of their neuro-oncologic care experience. Patient perspectives and recommendations were disseminated to the BTC PFAC and health system leaders. Nine patients and ten caregivers participated. Key feedback included the need for improved communication in the peri-operative period (symptom presentation until pathology results consultation). Participants requested more information prior to surgery on what to expect after surgery and with a brain tumor diagnosis. The PFAC-developed BTC experience handbook was declared useful, but patients did not receive this book until 2-weeks after surgery. As a result, we ensured that patients received a copy of the handbook at the time of diagnosis. Additionally, the development of a brain tumor surgery “prehab” course is underway. Use of a focus group to obtain input from patients recently diagnosed with GBM provided valuable insight into their experience that can be used to align care pathways with patient needs. Feedback was used to improve the delivery of neuro-oncologic care and enhance patient communication. In the constantly evolving landscape of GBM diagnosis and treatment, it is important to remain attuned to our patients’ perspectives on the care we deliver.
INTRODUCTION Developing and advancing patient-centered care within neuro-oncology is an essential element of any tertiary brain tumor center. Patient-centered care of neuro-oncology patients requires a holistic approach that integrates oncologic treatment with social and psychological support. OBJECTIVE The aim of this study is to evaluate how a Patient Family Advisory Council can be created within an existing brain tumor center and utilized to improve patient-centered care. METHODS Current patients and caregivers were recruited by brain tumor staff to participate in monthly meetings. All participants underwent screening and training by our Patient Education Research Center team. Discussions focused on current and future brain tumor center initiatives, and participants were encouraged to give feedback from the patient perspective. New ideas to improve the patient experience were solicited. RESULTS A total of 15 participants (female = 57%) were recruited, including 10 with grade 3 or higher brain tumors. Monthly meetings, in-person or virtual, were held for two years. Utilizing participant feedback, the group updated our 80-page patient handbook that contained a variety of patient-caregiver focused resources. Participants also provided feedback on other brain tumor center initiatives such as development of a magnet featuring key phone numbers, an easily accessible website URL for emergencies, and numerous updates to the external website. Additional discussions involved development of neuro-oncology care pathways as we move to a stand-alone cancer center facility and initiation of OncoSTAT and palliative services in this population. CONCLUSION Brain tumor patients require a comprehensive oncologic treatment team as well as a wide variety of support services. A Patient Family Advisory Council is an effective method of advancing patient-centered care and a step toward improving the neuro-oncology patient experience.
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