Implementing a Nurse-Enabled, Shared-Care Model to Address Unmet Needs of People with Neuroendocrine Tumours

INTERVENTION: This intervention (entitled: AUS‐NET‐Survivorship) has been developed through a co‐design process with end‐users (people with neuroendocrine neoplasms (NEN), general practitioners, practice nurses, cancer specialists, and cancer nurses). AUS‐NET‐Survivorship strategically uses specialist neuroendocrine nurses (SNN) ‐ an existing workforce embedded in the health system ‐ to implement a shared, follow‐up care model between acute cancer care centres and general practices for people diagnosed with NEN. SNN's are trained and supported to (1) engage all stakeholders (patients, families, general practitioners, specialists, and allied health) to take an active role in cancer survivorship care in a shared, follow‐up care model; (2) ensure timely information exchange and negotiation of shared‐responsibilities through multidisciplinary case conferencing (Medical Benefits Schedule MBS ‐ Item 750); and (3) ensure general practitioners and practice nurses have access to a survivorship care plan and a range of evidenced‐based tools and resources. The intervention explicitly provides shared‐care (interchanging specialist and general practice appointments during follow‐up cancer care for people with NEN) and enhanced care (overlaying general practice appointments with specialist appointments during follow‐up care), depending on the clinical needs of the people with NEN who are randomised to the intervention. The intervention will comprise of the following key elements: 1. The local AUS‐NET nurse led clinic is a 1 X30‐60 minute face‐to‐face or telehealth SNN consult with the participant scheduled within 10 weeks of diagnosis/enrolment (however given the pragmatic study design, adjustments to this timeline may be made and documented on a site‐by‐site basis) to: 1) provide CONDITION: Cancer ‐ Neuroendocrine tumour (NET) Neuroendocrine Neoplasms; ; Neuroendocrine Neoplasms Public Health ‐ Health service research PRIMARY OUTCOME: Health‐related Quality of Life ‐ measured via the EORTC QLQ‐C30[Baseline, 6 months post‐baseline, 12 months post‐baseline.] SECONDARY OUTCOME: % Eligible patients offered AUS‐NET Survivorship ‐ measured via cancer centre records audit and record in study database [End of study] % GPs agreeing to participate ‐ measured via research nurse records in database[End of study] % Model of care uptake among eligible patients ‐ measured via cancer centre record audit and record in study database[End of study] A wide‐ranging costing study will be conducted to find the actual cost of provision of care in AUS‐NET Survivorship and usual care (Page et al 2013). Costing data will be prospectively collected from multiple sources to enable a robust evaluation from an economic perspective. Individual level costs associated with specialist led usual care and shared care will be estimated from chart reviews and hospital costing data bases. Patient costs associated with travel, loss of productivity and out of pocket expenses will be prospectively measured using a previously applied patient costing survey (modified AusHSI costing tool). The additional cost of AUS‐NET Survivorship as a new intervention will also be estimated. ; ; Reference: Page, K., et al., Humans, 'things' and space: costing hospital infection control interventions. J Hosp Infect, 2013. 84(3): p. 200‐5.[End of Study] Active Australia Survey (AAS) [Baseline, 6 months post‐baseline and 12 months post‐baseline,] Adherence to NEN monitoring and cancer treatment ‐ measured via hospital records[Annually until 5‐years post‐baseline] Budget Impact Analysis ‐ obtained from collected cost data, service usage, and disease burden information to populate the life‐time Markov model. These data will be sourced from a combination of trial results e.g., usage, Medicare Benefit Schedule (MBS) and Pharmaceutical Benefit Schedule (PBS) data, willingness‐to‐pay from the Discrete Choice Experiments, routine data, and systematic literature reviewing.[End of study] Cancer‐related Fatigue ‐ measured via the Brief Fatigue Inventory[Baseline, 12 months post‐baseline.] Care coordination ‐ measured via the Cancer Care Coordination Questionnaire (CCCQ)[Baseline, 6 months post‐baseline, 12 months post‐baseline.] Completed Chronic Disease Management plan (Y/N) ‐ measured via Medicare Benefits Schedule (MBS) records[Assessed for the 5 years during enrolment in the study,] Completed Mental Heath Treatment Plan (Y/N) ‐ measured via Medicare Benefits Schedule (MBS) records[Assessed for the 5 years during enrolment in the study,] Completed survivorship care plan/components (Y/N) ‐ obtained via specialist neuroendocrine nurse (SNN) records, audio‐/video‐recording of the SNN‐led clinic, completion of the SNN‐led clinic checklist and RN records in database (verified with AUS‐NET Survivorship Care Plans)[End of study] Completion (Y/N) and duration (min) of Case Conferencing with GP ‐ obtained via specialist neuroendocrine nurse records, audio‐/video‐recording of the GP case conference, completion of the GP Case‐conference checklist and research nurse records in database (verified with hospital records).[End of study] Completion (Y/N) and duration (min) of SNN‐led clinic ‐ obtained via specialist neuroendocrine nurse (SNN) records, audio‐/video‐recording of the SNN‐led clinic, completion of SNN‐led clinic checklist and RN records in database (verified with hospital records)[End of study] Cost‐Benefit Analysis ‐ measured via cost data and Willingness‐to‐Pay (WTP) values developed in the DCE survey[End of study] Costing analysis and outcome measurement ‐ measured via the EORTC QLQ‐C30 (primary outcome) and the QUL‐C10D[Baseline, 6 months post‐baseline, 12 months post‐baseline] CSIRO Healthy Eating score[Baseline, 6 months post‐baseline and 12 months post‐baseline] Financial Toxicity ‐ measured via the Comprehensive Score for financial Toxicity (COST)‐Functional Assessment of Chronic Illness Therapy (FACIT) tool[Baseline, 12 months post‐baseline, ; ] Health providers (all) satisfaction ‐ measured via semi‐structured interviews[Baseline, 6 months post‐baseline, 12 months post‐baseline] Health‐related quality of life ‐ measured via the GINET‐21[Baseline, 6 months post‐baseline, 12 months post‐baseline.] Insomnia ‐ measured via the Insomnia Severity Index[Baseline, 12 months post‐baseline. ; ] International Physical Activity Questionnaire (IPAQ) ‐ single item[Baseline, 6 months post‐baseline and 12 months post‐baseline] Length of clinical encounters at the cancer centre ‐ obtained via research nurse records in database and hospital record[End of study] Malnutrition Screening Tool (MST) [Baseline, 6 months post‐baseline and 12 months post‐baseline] Medicare Benefit Schedule (MBS) ‐ measured via health care consultations, services and procedures in community care and private health services.[End of study] Number and timing of GP visits and specialist visits ‐ measured via Medicare Benefits Schedule (MBS) records and patient self‐report (verified with hospital records)[Assessed for the 5 years during enrolment in the study,] Number of access of rapid referral back to acute care ‐ obtained via research nurse records in database and hospital record[End of study] Overall survival ‐ measured via hospital records[Annually until 5‐years post‐baseline] Patient Preference for AUS‐NET model of care ‐ measured via a Discrete Choice Experiment (DCE).[End of study] Pharmaceutical Benefit Schedule (PBS) Service Utilisation ‐ measured via prescription medications.[End of study] Resources to deliver AUS‐NET ‐ this is a composite outcome obtained via resources required to conduct the intervention. A best estimate of the costing data of the following will be collected prospectively from multiple sources to enable a robust evaluation from an economic perspective, and assessed by a health economist ‐ Individual level costs associated with specialist led usual care and shared care will be estimated from chart reviews and hospital costing data bases. Patient costs associated with travel, loss of productivity and out of pocket expenses will be prospectively measured using a previously applied patient costing survey (modified Australia Centre for Health service Innovation (AUS‐HSI) costing tool). The additional cost of AUS‐NET Survivorship as a new intervention will also be estimated ‐ this includes staff, staff training, materials, communications, space, utilities, healthcare costs, and other societal costs.[End of study] Satisfaction of care ‐ measured via a single‐item question with a 0‐10 numerical analogue scale (with 10 being the most satisfied) supplemented with short, structured qualitative questions.[12 months post‐baseline] Simplified Nutrition Appetite Questionnaire (SNAQ)[Baseline, 6 months post‐baseline and 12 months post‐baseline] Unplanned hospital admissions ‐ measured via self‐report and verified with hospital records[Annually until 5‐years post‐baseline] INCLUSION CRITERIA: ‐ Patients aged 18 years of age or older ‐ histologically confirmed neuroendocrine neoplasm (NENs) as per the 2017 World Health Organisation Classification: o Well differentiated neuroendocrine neoplasms: Neuroendocrine tumours (NET) (Grades 1‐3) o Poorly differentiated neuroendocrine neoplasms: Neuroendocrine carcinoma (NEC) ‐ can identify, or be willing to identify a usual General Practitioner or General Practice ‐ ambulatory with ECOG performance status of 0‐2 ‐ have access to a telephone or telehealth via smartphone, electronic tablet, personal computer, or equivalent, and ‐ be able to speak and read English.