1. World Universities Network Presentation Dr Heather McKenzie Professor Kate White Dr Lillian Hayes Mr Keith Cox Associate Professor Maureen Boughton Ms Judith Fethney Ms Jo Dunn 1

2. Introduction Overview of program of research Introduction to this presentation Background: Study One

3. Exploratory research To explore the nature of nurse- patient encounters and relationships in the context of community care of cancer patients Research focus was on particular nurse-patient encounters & involved interviews with nurses and patients and observation of each encounter

4. Research findings Sense of security for patients and their families about the ‘immediate situation’ A pivotal role for community nurses Education of patients and their families about managing self care Potential for reduction in unplanned presentations to hospital for cancer patients

5. Publications McKenzie H, Hayes S, Forsyth S &, Boughton M (2008) Explaining the Complexities and Value of Nursing Practice and Knowledge. In Crouch M & Morley I (Eds) Illumination Through Critical Prisms, Rodopi, Amsterdam McKenzie H, Boughton M, Hayes L, Forsyth S, McVey P, Davies M, Underwood E (2007) A sense of security for cancer patients at home: the role of community nurses, Journal of Health and Social Care in the Community, 15(4): 352- 359

6. Study Two

7. Chemotherapy outpatients’ unplanned presentations to hospital: A retrospective study Funding: Merck Sharp & Dohme

8. Aims To identify and analyse the nature and magnitude of chemotherapy outpatients unplanned presentations (and admissions) to the emergency department or cancer centre at a large metropolitan hospital To explore the antecedents to these visits

9. Background NSW (2006): 600 outpatient chemotherapy chairs 125,000 outpatient chemotherapy visits annually Research demonstrates side effects of chemotherapy can be distressing and debilitating

10. What is Known? Chemotherapy-related serious adverse effects may be more common than reported in clinical trials Cancer patients receiving chemotherapy are more likely than those who are not to visit the emergency room or be hospitalised Chemotherapy patients incur significant costs (Hassett et al 2006)

11. Methodology Retrospective study –October 1, 2006 - September 30, 2007 –Data bases, medical records from ED & Sydney Cancer Centre –All patients on chemotherapy within 6 months of their unplanned presentation to RPAH –Variables: cancer diagnosis, reason for presentation, chemotherapy regimen, position in the treatment trajectory, whether or not they were admitted & if so for how long, and a range of demographics. Interviews (2008) –To explore antecedents to the unplanned presentations to hospital

12. Between October 2006 - September 2007: 316 people 469 unplanned presentations Between October 2006 - September 2007: 316 people 469 unplanned presentations Chemotherapy six months prior to unplanned presentation(s) Visits = 363 (77.4%) People = 233 (73.7%) Chemotherapy six months prior to unplanned presentation(s) Visits = 363 (77.4%) People = 233 (73.7%) No Chemotherapy six months prior to unplanned presentation(s) Visits = 106 (22.6%) People = 83 (26.3%) No Chemotherapy six months prior to unplanned presentation(s) Visits = 106 (22.6%) People = 83 (26.3%)

15. Admissions317 of 363 visits (87.3%) resulted in a hospital admission Length of stayMedian = 5 days Range 1 – 70 days Total bed days over the study period 2,622 Cost (estimated bed day $886) $2,323,092

16. 363 Presentations 233 People chemotherapy within 6 months Chemotherapy in last 4 weeks prior to visit 253 visits (53.9%) 188 people (59.5%) Chemotherapy in last 4 weeks prior to visit 253 visits (53.9%) 188 people (59.5%) No Chemotherapy in last 4 weeks prior to visit 110 visits (23.4%) 45 people (14.2%) No Chemotherapy in last 4 weeks prior to visit 110 visits (23.4%) 45 people (14.2%)

17. Chemotherapy within last 4 weeks prior to visit 253 Visits 188 people Chemotherapy within last 4 weeks prior to visit 253 Visits 188 people Side effects of chemotherapy 133 visits (52.5%) Side effects of chemotherapy 133 visits (52.5%) Effects of the disease 79 visits (31.2%) Effects of the disease 79 visits (31.2%) Other Non cancer related Radiotherapy side effects Lack of information 41 visits (16.3%) Other Non cancer related Radiotherapy side effects Lack of information 41 visits (16.3%)

20. “My GP has seen me and she says, 'you're pretty awful again today, if you need support then go back to your chemo people’… I’d rather do without it … and not overload the resources. But I just feel that I need it sometimes cause I’m really very shaky and there is nothing that we can do at home, that we can think of…I have absolutely no coping skills...I felt awful coming up but at the same time I felt I needed support in my struggle. And how do I get that at home?” “My GP has seen me and she says, 'you're pretty awful again today, if you need support then go back to your chemo people’… I’d rather do without it … and not overload the resources. But I just feel that I need it sometimes cause I’m really very shaky and there is nothing that we can do at home, that we can think of…I have absolutely no coping skills...I felt awful coming up but at the same time I felt I needed support in my struggle. And how do I get that at home?” Woman (60 yrs) describes why she chose to come to the Cancer Centre (September 2008)

21. 21 Wife, and main carer, of man (59 years) with Gastric Carcinoma. Unplanned visit to cancer centre 3 days after treatment (October 2008)

22. Conclusion Chemotherapy outpatients have significant unmet needs Increasing trend towards outpatient care Improved integration of tertiary and community care is needed to address the burden of chemotherapy side effects 22

23. Study Three Closing the circle of care: Evaluating a shared care clinical pathway intervention for chemotherapy outpatients

24. RCT of community/hospital shared care clinical pathway intervention for patients receiving outpatient chemotherapy. H 1 There is a statistically significant reduction in the number of unplanned presentations to hospital between the control and intervention groups

25. Aim Determine if the intervention reduces the number of unplanned presentations to hospital for chemotherapy outpatients; and Improve physical and psychosocial health outcomes. To explore the cost-effectiveness of the intervention, focusing on the potential reduction in hospital costs and improved quality of life.

26. Study Design Multi-centre RCT of chemotherapy outpatients undergoing chemotherapy cycles 1, 2 & 3 Standard Treatment versus Clinical Pathway Target Recruitment : 300 patients

27. Intervention Structured Community Nurse Assessment and follow up post chemotherapy Clinical Pathway Guided Care Feedback to Cancer Centre

28. Community Nurse Education Two Day Education Program: –Trends in cancer –Chemotherapy –Symptom assessment –Supportive Care –Clinical Assessment –Study protocol –Patient education

29. Standard Care 1. Pre-treatment baseline assessment 2. Cycle 1: Day 2 Phone Call 3. Cycle 2: Day 2 Phone Call 4. Cycle 3: Day 2 phone call Clinical Pathway 1. Pre-treatment baseline assessment 2. Cycle 1: Day 2 and Day 5 home visits CN 3. Cycle 2: Day 2 and Day 5 home visits CN 4. Cycle 3: Day 2 and Day 5 home visits CN

30. Intervention: The CN Visit The standardised visits will focus on: –Assessment of the patient (physical and psychosocial and knowledge) –Referral, provide care and advice as needed –Electronic documentation Chemotherapy Symptom Assessment Scale (C-SAS) Brown et al 2001 C-SAS transferred (via palm pilot technology) to the patient’s specialist cancer centre and GP

31. Data Collection 4 time points Baseline: demographic & treatment information SF36 and time point 4 All time points: Unplanned presentations to hospital Patient participant quality of life measures; Hospital Anxiety and Depression Scale (HADS), Functional Assessment of Cancer Therapy – General (FACT-G) Cancer Behaviour Inventory – Long version (CBI-L). Individual and focus group interviews with HCT

32. Standard Care 1. Pre-treatment baseline assessment 2. End of Cycle 1 3. End of cycle 2 4. End of cycle 4 Clinical Pathway 1. Pre-treatment baseline assessment 2. End of Cycle 1 3. End of cycle 2 4. End of cycle 4

33. Outcomes Primary: A reduction in the proportion of chemotherapy outpatients on cycles 1, 2 & 3 making an unplanned presentation to hospital. Secondary: Chemotherapy outpatients in the intervention group will have statistically significantly improved scores QoL measures compared with the control group.

34. Data Analysis Quantitative Data: Poisson regression analysis Repeated Measures Analysis of Variance Economic Analysis: Data linkage Cost weights for DRG Clinical outcomes: test for differences into index of overall health-related quality of life using algorithms to convert response of the SF-36.

35. Facilitating patient and carer education Coordinating the interface between community and cancer centre settings