A targeted orientation and information program for newly diagnosed cancer patients at St. Vincent s Hospital

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1 A targeted orientation and information program for newly diagnosed cancer patients at St. Vincent s Hospital Dr Carrie Lethborg Ms Rosie Brown Funded by: Western and Central Melbourne Integrated Cancer Service

2 Acknowledgements Project team: Ann Cook (Nurse Manager, Medical Oncology), Sonia Posenelli (Chief Social Worker, Acute and Palliative Care), Pamela Crouch (Cancer Services Project Manager) Associate Professor Ray Snyder (Director, Cancer Services) Rosie Brown (Research Nurse) Western and Central Melbourne Integrated Cancer Service

3 Acknowledgements Cancer specialist nurses: Nicola Perry (Head and Neck Tumour Stream) Sarah McDonald (Head and Neck Tumour Stream) Jan Chapple (Haematoloy Stream), Sarah Stewart (Breast Tumour Stream) Maria Loder (Lung Tumour Stream). Cancer Social Work Team: Abigail Maturana (Haematology) Laurelle Stalker (Head and Neck) Maureen McInerney (Lung) Pauley Kessel (Breast) Jenny McNeill (Breast) Consumers

4 Background Psychosocial care clearly improves quality of life in the cancer population However many still do not have access to such interventions Why? inadequate funding inadequate methods to identify high risk patients Result Much of the psychosocial support that is available is crisis oriented and ad hoc Earlier identification of those patients with most need would enable a more proactive and preventative approach to psycho-social care.

5 While the call to identify cancer patients with unmet psychosocial needs is well documented, the reality of implementing such processes remains complex and challenging (Bonevski et al, 2000). Distress screening should not replace a psychosocial assessment by a trained professions (Lethborg, 2009).

6 Background Conceptualising a link between information needs and higher distress we believed that an intervention that focused on both would provide a comprehensive, effective response to these unmet needs. This project presents a strategy undertaken by one cancer service in an inner city general hospital to: improve the identification of patients at most risk of distress address the unmet need for information provision at the start of the cancer journey

7 The Orientation and Distress Screening (ODS) Model Component: 1 Information and Orientation: - A standard information package and individualised modules in response to identified unmet needs provided face to face with the patient. Orientation to the hospital and to their illness for new cancer patients Component: 2 Psychosocial screening for distress and identified problems Component: 3 A psychosocial profile of each patient (including a score of distress and it s meaning, problems identified and information provided) is collated and disseminated to identified members of the MDT

8 The Orientation and Distress Screening (ODS) Model - Component: 1 Information and Orientation Our literature review found that patients most commonly request information about; disease and prognosis treatment options duration of treatment risks, benefits and side effects risk to family impact upon lifestyle ability to work strategies to cope with these effects Information needs to be tailored for the person concerned

9 The Orientation and Distress Screening (ODS) Model - Component: 1 Information Standardised Package Diagnosis Specific - Cancer Council publication How to relax Cancer Council publication Cancer Connect - Cancer Council publication St. Vincent s Oncology Department booklet St. Vincent s Map, Parking and Public Transport information Flowchart Individualised Modules Coping with treatments - Cancer Council publication Coping with fatigue - Cancer Council publication Eating Well Cancer - Council publication When cancer won t go away - Cancer Council publication My Mum s got cancer RWH Talking to children - cancer - Cancer Council publication Cancer Trials - Cancer Council publication

10 The Orientation and Distress Screening (ODS) Model - Component: 1 Orientation Aim to orient participants to their cancer and to the hospital systems they would be encountering. Without the orientation component of this model it would simply be an evidence based information package. Thus, the individualisation and one on one delivery of this information remain crucial to the integrity of this intervention.

11 The Orientation and Distress Screening (ODS) Model -Component: 2 Distress Screening The measure of distress (Distress Thermometer, Roth et al, 1998) for this project was chosen after testing other validated measures for feasibility in our setting. The DT includes a visual analogue scale for distress in cancer patients and incorporates a problem checklist whereby patients can identify their specific areas of personal distress. Uniquely, we linked this problem checklist to our individualised information packages. e.g.if a patient noted concerns about their children as a source of distress, they were given a module of information about parenting when you have cancer in addition to their standardised information about cancer.

12 The Orientation and Distress Screening (ODS) Model -Component: 2 Distress Screening

13 The Orientation and Distress Screening (ODS) Model -Component: 3 Psychosocial Profile A one page psychosocial profile based on the information gained from patients after completing the problem checklist and the distress thermometer. This profile can be filled out electronically (with highlights marking the distress score and problems noted by the patient as causing their stress) and ed to members of the MDT and printed out for inclusion in the medical history. Rather than using this as a triage tool, we ask that MDT members use the information in their own practice and in developing their own care plans for the patient.

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15 Project Outcomes 1: Incorporation of ODS into standard care 2: Transferability of ODS to a range of tumour streams 3: Enhancement of specialist nurse roles 4: Improved patient well-being 5: Enhanced psychosocial information to MDT members 6: Development of psychosocial database

16 Research questions 1. What is the benefit of the ODS to patients and staff? 2. Is the ODS sustainable?

17 Design 1. All newly diagnosed lung, breast, head & neck cancer and lymphoma patients during the 5 month study period, who were able to speak, read and understand English were eligible to participate. 2. A specialist cancer nurse from each service received training in conducting the ODS intervention and quarantined time to participate in the study 3. Eligible patients were recruited by the specialist cancer nurse and received the ODS intervention. 4. Distress scores were collected and sent to the research assistant who completed a psychosocial profile and placed one copy in the patient s history and ed other copies to identified team members within the specific MDT 5. A subgroup of participants were contacted 6 weeks after the intervention and interviewed about their experience of the ODS plus completed the DT a second time.

18 Methods multiple levels of evaluation Participant information Distress scores (Time1 and Time2) Problem checklist/information needs Participant follow-up interviews Focus group with specialist nurses Focus group with cancer social work team Feedback from MDT staff Social work follow-up post screening Data about sustainability (time spent, staff feedback)

19 Methods multiple levels of evaluation Participant information Distress scores (Time1 and Time2) Problem checklist/information needs Participant follow-up interviews Focus group with specialist nurses Focus group with cancer social work team Feedback from MDT staff Social work follow-up post screening Data about sustainability (time spent, staff feedback)

20 Outcomes: Participants Only 30% of patients presented to the MDTs during this project were actually both newly diagnosed cancer patients and being treated at St V s. Of the 70% (n=180) who were not eligible reasons included: not newly diagnosed (43%) seen and discharged without any plans for further treatment prior to being screened (40%), reviewed and plans to return for care to another service (15%) medically unstable (12%) language, mental or psychological state (3%) the specialist nurse on annual leave (3%) either the patient or family declined (1% )

21 Outcomes: Participants Eligibility: new diagnosis of cancer, ability to read, speak and understand English. n=97 - head and neck cancer, 30% breast cancer, 28% lung cancer, 21% lymphoma, 21% 58% were female - head and neck cancer, 25% breast cancer, 100% lung cancer, 52% lymphoma, 55% Over half of this group (58%) was over the age of 60 average age 61 (range of 26-96).

22 Outcomes: Identification of risk of distress Almost half (48%) of participants scored 5 or over 5 on the distress thermometer which is considered at risk for clinical levels of psychological distress (Roth et al, 1998). Of this group, 17% (n=6) scored at the higher end of this spectrum (a score of 8 or above). The average score overall was 4.4 (range of 0 10).

23 Outcomes: Identification of risk of distress Percentage of patients with distress scores - 5 and above Haematology 25%(n=5) Breast cancer 85%(n=24) Head and Neck cancer 34%(n=9) Lung cancer 50%(n=10)

24 Outcomes: Identification of risk of distress Those in the distressed group were: mostly female (67%) (45% without breast cancer) married (70%) had breast cancer patients (45%).

25 Outcomes: Time 2 data A sub group of participants (38% of total group n=31) were interviewed again at a second time point (approx 6 weeks post intervention). Data was collected during this interview about levels of distress and changes in distress score; supportive care involvement and feedback about the ODS intervention.

26 Outcomes: Time 2 participants % Participants (n=97) % Participants (n=31) for Time 2 Breast Lung Haematology Head and Neck 30 22

27 Outcomes: Distress at T1 and T2 Average DT score at Time 1 Breast Lung Haematology Head and Neck Average DT score at Time 2

28 Outcomes: Identification of problems Average number of problems identified (out of 15) Breast Lung Haematology Head and Neck Average number of problems identified by those with a high (8+) distress score *The most common problems were either physical (44%) or emotional (29%).

29 Outcomes: Multi-disciplinary involvement MDT s were asked to nominate anyone they thought would benefit from having the psychosocial profiles of their patients sent to electronically. All nominated: registrar social worker pharmacist medical oncology nurses dietician* speech therapist* *as required

30 What is the benefit of the ODS to patients and staff? 95% of all new patients during the study period: were assessed for distress using a validated measure received orientation and evidence based information tailored to their specific needs received social work support and contact from at least one other allied health professional if they scored 5 or above on the DT had their information sent to pertinent members of the MDT to enhance the planning of their care (400 psychosocial profiles were sent to specific members of the MDTs) had a psychosocial profile put into their medical history

31 What is the benefit of the ODS to patients and staff? All the SN s stated that implementing the ODS increased their job satisfaction: it has provided a structured method of assessment and information provision that patients like, that is standardised for all patients (thus ensuring all pertinent topics were covered for all patients) and has legitimised their role awareness of the psychosocial issues for patients has increased in the MDTs that is satisfying and improves care it validates patient s distress and their concerns and makes them feel important and cared for enables them to better respond to patient needs

32 What is the benefit of the ODS to patients and staff? Patient feedback Over half (55%) noted specifically having a member of the healthcare team follow them up after their ODS. Of those who did not have any follow-up, 22% did not need any services or were being treated at another facility. All of the participants who scored 5 or above noted being seen by a social worker.

33 What is the benefit of the ODS to patients and staff? Patient feedback 90% - recalled ODS 62% - ODS useful/extremely useful 72% - recalled distress screen 44% - said that the ODS made them feel less distressed 5% - said that the ODS made them feel more distressed

34 What is the benefit of the ODS to patients and staff? Patient feedback The specific aspects of ODS credited to impacting positively on their distress level, in order of importance were: The one to one nature of the intervention The individualised nature of the information The content of the information The linking of problem checklist with distress

35 What is the benefit of the ODS to patients and staff? Patient feedback The first four days following chemotherapy I was on top of the world and then the next four days I was very low with fatigue. I knew staff were considering all aspects It relieved my mind I felt like a real person that mattered and treated as an individual

36 2. Is the ODS sustainable? SNs involved formalised processes to identify new patients Efficiencies were gained from: improved identification processes for new patients (e.g. pink laminated signs that read, Have new patients been the breast care nurse? and nurse case finding on PAS (Haematology)) simplified information provision improved identification of psychosocial distress Incorporating this model into their practice took the SN s approximately 20% more time than previously spent with new patients and yet provided a more thorough assessment and a more comprehensive provision of information than previously provided.

37 2. Is the ODS sustainable? Multi-disciplinary involvement As a result of this project all new patients are now presented by the SN in the breast cancer MDT meetings and the lung cancer MDT. The SN s from the head and neck and the haematology MDT s felt that the consciousness raising of the MDT was a positive outcome of the project.

38 2. Is the ODS sustainable? Multi-disciplinary involvement In the head and neck cancer service, the SN stated that the allied health staff are now much more of a team it has opened up the lines of communication within this team. For the breast cancer SN, The Dr. s now pre-empt and ask questions about psychosocial issues noted they never did this before the project. And the haematology SN stated, I know the team members have got the psychosocial profiles at least and this is more than prior to the project. I would like to recommend that there be a psychosocial column in the patient presentation framework.

39 Conclusion The ODS model improved patient well-being by: successfully identifying those at risk of psychosocial distress providing evidence based information to all participants The project provided training and supervision to cancer SNs to incorporate the model into their practice as standard. A communication strategy to share the psychosocial issues of patients with members of the MDT was implemented and the conceptualisation of the items required in the oncology and lung cancer database completed. The implementation of the ODS was achievable in spite of the idiosyncrasies of the different MDTs involve.

40 Conclusion Identification of new patients is difficult and time consuming Data management is time consuming and yet a linch pin of the program.

41 Post Script NBCC Indicators for Multi-disciplinary and Psychosocial Care: Screening for psychosocial distress and special problems (all patients at risk of psychosocial distress are identified) Information (all patients to have an informed understanding of their cancer and potential psychosocial issues) Continuity of care Consumer satisfaction Communication skills

42 Post Script At the IPOS 2009 Board Meeting in Vienna, members unanimously endorsed the concept that Distress be named the 6th Vital Sign in Oncology We will aim to document supportive care screening for 50 percent of newly diagnosed cancer patients by 2012 (Victorian Cancer Action Plan)

43 Post Script Answering the unanswered questions about psychosocial screening in the cancer setting Principal Investigator Dr Carrie Lethborg Research Assistant Rosie Brown Funded by - Western and Central Melbourne Integrated Cancer Service Supported by- Cancer Services, Social Work and Psychosocial cancer care, St V s