Tracking pathways of patients with stage 3-5 CKD through health care services.

Project Overview: The over-arching goals of this prospective, longitudinal study were to quantify the health and support needs of patients with Stage 3-5 Chronic Kidney Disease (CKD) over the 12 month period prior to their (anticipated) death and to map their movements within and between health services during this time. The data sources for this study included: (1) participant self-reports using validated and reliable instruments which were specifically designed for this population; and (2) clinical and administrative health records. Participants were found to have substantial symptom burden and few avoided using acute health services. The study findings will inform the design and development of enhanced palliative care services specifically for patients with advanced progressive CKD.

Project status: Complete.

Patient outcomes in palliative care – a national perspective of malignant and non-malignant diseases.

Project Overview: Data collected to evaluate palliative care service outcomes were extracted from the existing national repositories of point of care outcome data on palliative services (Palliative Care Outcomes Collaboration – PCOC). This project focused on the pain experience of patients in palliative care. Data were limited to patients whose final episode ended in death (within a 12-month period commenced palliative care – first episode). Change in pain was calculated at the end of each phase. Analyses included description of pain at the start of each phase, for all phase types and change in pain by phase type progression. A regression model was implemented to compare pain at the beginning of the different phase types, controlling for potential confounding variables such as service location, patient characteristics (demographic and underlying disease) and functional ability. Pain changes over time. Patients who started a phase with moderate/severe pain were most likely to improve at the end of the phase, whereas patients with no/mild pain were likely to experience no change in pain. The proportion of patients with moderate/severe pain decreased when close to death.

Project status: Complete.

1.3a: Understanding GP clinical practice in end-of-life care.

Project Overview: The aim of this project was to identify the scope and content of end-of-life care provided by GPs, and identify gaps in current GP practice compared to contemporary frameworks for best practice. This cross-sectional qualitative study used semi-structured interviews with 15 GPs recruited from urban and regional locations, across gender and age ranges. Mostly, GPs were aware of approaching end of life and, when articulated by the patient or GP, integrated end-of-life care was introduced, which often included care planning. The focus of care changed to achieve comfort of the patient, although this was not always explicitly discussed. How end-of-life care was provided depended primarily on patient traits and GPs’ characteristics.

Project status: Complete.

1.3b: End-of-life care in Primary Care practice: a design thinking workshop.

Project Overview: This project aimed to promote the development of innovative ideas to address growing challenges to good quality end-of-life care in primary care settings. A workshop using systemic ideation methods was held with a diverse, interdisciplinary group comprising 23 experts. Processes in end-of-life care vary depending on the GP and the patient; primary care could improve with the use of existing technologies such as automatic reminders, mobile apps to connect people, and data sharing via online platforms. Strategies, such as the My Health Record and the Health Care Homes, have the potential to improve the delivery of end-of-life care in primary care.

Project status: Complete.

1.3c: National exploratory study of end-of-life care quality indicators as per the NSQHS (2nd Edition).

Project Overview: Using an online mixed methods survey of public and private acute care facilities, this project aims to explore how Australian hospitals are assessing the six end-of-life care quality indicators in Standard 5 of the NSQHS (2nd Edition). Safety and Quality Officers (or a relevant role) at each acute care facility will be invited to complete a short confidential questionnaire regarding how their service is assessing these indicators. Study findings will provide valuable information on how acute care settings are measuring their practice against these indicators. Then a Delphi approach will explore optimal methods for assessment, leading to nationally relevant recommendations.

Project Status: In progress.

1.3d: Nurse-led services in palliative and end-of-life care: A systematic review.

Project Overview: The aim of the review is to explore the elements of nurse-led palliative and end-of-life care services that contribute to improved patient and carer outcomes. Nurse-led services are those where the nurse assumes the primary responsibility for patient management and care. Embase, CINAHL and Medline databases, from 2000 onwards, will be searched along with the grey literature. Findings from the review will inform the future development and implementation of nurse-led palliative and end-of-life care services appropriate for acute care, residential and community settings.

Project status: In progress.

The BASIC-NP Project: Development and evaluation of an integrated palliative nurse practitioner service.

Project Overview: The aim of this study was to evaluate Nurse Practitioner-led case conferences with GPs for people with advanced, life-limiting illnesses in regional areas. With 23 case conferences undertaken, multidisciplinary care plans were developed that clarified the responsibilities of all parties. Follow up from the NP included face-to-face visits and telephone support. With support from the GP, this approach resulted in prompt initiation of treatment and good follow up. Six patient-carer dyads were interviewed and reported positive impacts of the approach on their experience. Economic viability requires further examination.

Project status: Complete.

1.5a An evaluation of digital health and technological capability in Australian palliative care services.

Project Overview: End-of-life care is an important area of healthcare practice in which significant benefits may be realised through the uptake of digital health initiatives such as telehealth. However, there is little formal evidence to guide practice and inform decision making in the Australian context. This project will address that gap by evaluating the use of digital health and technological capability in palliative care services across Australia. A national survey will be conducted to provide insights into the current level and nature of digital health activities, including the identification of technological trends and apparent areas of need.

Project status: In progress.

1.5b Palliative care providers’ perspectives on digital health and technological innovation in palliative care.

Project Overview: To complement the findings from project 1.5a about the digital health capability of Australian palliative care services, this project will investigate palliative care providers’ perspectives on digital health and the potential value of ongoing technological innovation in palliative care. A national survey will be conducted to broaden the knowledge gained at the service level.

Project status: In progress.