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Supportive Care in Victoria Supportive Care in Victoria
Cathie PigottProject ManagerSupportive Cancer Care Victoria ProjectUniversity of Melbourne
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Objectives
• Define Supportive Care
• Understand the implications of the VCAP targets for supportive care
• Describe screening vs assessment
• Discuss the Distress Thermometer (DT)
• Develop confidence to implement DT
• Consider project plan for implementation of DT
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Supportive Care• Supportive care is an umbrella term
• Includes services for those with cancer, their family and carers
• Refers to the domains
– physical
– social
– information
– spiritual
– psychological needs“Providing optimal cancer care Supportive care policy for Victoria” Metropolitan Health and Aged
Care Services Division, Victorian Government Department of Human Services, Melbourne
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Create Better Experiences for Cancer Patients and Carers
4 Strategic Directions in the Supportive Care Policy
1. Identifying supportive care needs of people affected by cancer
2. Building capacity for optimal supportive care
3. Implementing supportive care screening into routine practice
4. Addressing supportive care needs – referral and linkages
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VCAP Targets for Supportive Care• Action area 4: Supporting and empowering
patients and their carers throughout their cancer journey– Increasing the number of patients assessed and treated by
specialist multidisciplinary teams – Increasing consumer participation in the development of
cancer care policies as well as in cancer service delivery and research
– Establishing a new state-wide service for adolescents and young adults, and a program to manage the long-term effects of treatment for survivors of childhood cancer
– Expanding palliative care services to give patients and carers real choice about end-of-life care.
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A Model of Supportive Care
Adapted from M Fitch 2000
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People affected by cancer
Not all patients have the same level of needPeople will vary with respect to their:• Responses to the demands of having
cancer• Capacity to articulate their supportive care needs• Ability to self manage the demands of
having cancer• Desire to access services to meet
supportive care needs
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VCAP Screening Target
• We will document supportive care screening for 50 % of newly diagnosed cancer patients by 2012
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Evidence based strategies to respond to identified needs
Do we know how to respond to all unmet needs in ways that influence outcomes?
Is best evidence being used in practice? Does unmet need data drive our service
development? Does population data on unmet needs
help us to:Define the workforce training needsRefine a research agenda in supportive care
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OpportunitiesTo develop an evidence based state-wide
approach to professional development for provision of supportive care services
VCAP target: by 2012 we will provide evidence of training of the cancer workforce in supportive care screening processes and survivorship awareness
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Workforce approaches that make best use of human resources
In the context of workforce shortages and a growing cancer burden: What skill mix is needed? Who needs what competencies in supportive
care? What models of interdisciplinary teamwork
best fit cancer?
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All – involved in supportive care screening, provide an immediate response and make referrals
Many – provide cancer specific supportive care assessment and support as part of the MDT
Some – provide cancer supportive care interventions
Few – provide specialist cancer supportive care interventions.
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Feedback
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What is it like to have cancer?
Divide into three groups:All groups:Having cancer is like………..
Group 1: What are the major issues faced by patients with cancer?
Group 2: What factors are associated with an increased risk of supportive care issues? i.e. who is most at risk?
Group 3: What are the factors/barriers that influence the provision of supportive care?
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What are the major issues faced by the patient with cancer?
• Emotional and social issues:– Emotional
responses– Psychological
vulnerability/ emotional and social support
• Psychological issues:– Self concept, body image,
sexuality– Interpersonal problems– New relationships post
diagnosis– Stress and adjustment reactions– Severe emotional distress– Anxiety– Depression– Suicide– Post traumatic stress disorder
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What are the major issues faced by the patient with cancer?
• Physical issues:– Treatment side effects– Pain – Fatigue– Fertility issues– Disfigurement– Odour
– Incontinence– Bowel problems– Cognitive problems– Nutritional issues– Weight changes– Respiratory symptoms– General health
condition
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What are the major issues faced by the patient with cancer?
• Practical and financial issues– Costs – Travel and accommodation– Loss of income– Difficulties with business dealings
• Spiritual issues– Making meaning– Experience of hopelessness / helplessness– Guilt– Fear
• Impact on family/caregivers
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What are the major issues faced by the patient with cancer?
• Survival issues
• Issues requiring special consideration– Culture– Age– Geography– Sexual orientation
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Factors associated with increased risk
Characteristics of the individual
• Younger patients (<30) who may be particularly vulnerable to emotional distress
• Older patients who may face difficulties associated with co-morbid conditions such as heart disease, arthritis or waning mental capacity
• Patients who are already the carer of someone else • From a culturally and linguistically diverse
background• Single, separated, divorced, widowed, living alone
(NHMRC, 2003)
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Factors associated with increased riskCharacteristics of the individual
• Facing economic adversity• Perceived poor social support• Poor marital or family functioning• History of psychiatric problems• Cumulative stressful life events• Past history of alcohol or other substance
misuse• If the person has children <21 years• Living in a rural area
(NHMRC, 2003)
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Factors associated with increased riskCharacteristics/stages of the disease or treatment
At the time of diagnosis and recurrence
• During advanced stage of the disease
• At the end of treatment
• More treatment side effects, functional impairment
• Experiencing chronic pain or fatigue
• More complex treatment regimes(NHMRC, 2003)
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Factors/barriers that influence the provision of supportive care
• Knowledge• Beliefs and attitudes• Values• Self efficacy• Time• Assessment skills and
systems• Interview skills• Reminders
• Resources
• Role definition
• Support systems for health professionals
• Feedback
• Rewards
• Negative consequences
Non identification of supportive care needs may be due to the reluctance by patients to initiate discussion about their supportive
care needs and health clinicians failing to ask
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Screening is not the same as assessment
Screening should be:Low cost and complexityEasy to administerAvailable to allSensitive to identification of needs
Screening versus Assessment
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Screening Tools Many tools are available but many
have been designed for research purposes
There is ‘no one best tool’ A tool specifically created for the
screening of cancer patients within a clinical context is the Distress Thermometer (DT)
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Screening
Regardless of the tool used, screening must ALWAYS be accompanied by a discussion with the patient about their needs to: Clarify patient answers on the tool and
eliminate any misunderstandings Prioritization of issues for those with many Check that patients with no identified needs
do not have additional/unreported issues Discussion of appropriate referrals and
patient readiness to accept referrals
Screening
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ScreeningShould take into account both disease and
demographic risk factors Disease related issues
Tumours with poor prognosis Stage of illness
Demographic issues Younger patients Lower income Level of social support Psychiatric history
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The Distress Thermometer• Developed by the NCCN• Identifies patient distress (score ≥4 significant)
and a range of supportive care needs• Use regulated – requires permission for use
and for any adaption• Validated• Widely used• http://
www.nccn.org/professionals/physician_gls/f_guidelines.asp
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Domains CoveredDomain/Topic DTDistress/Emotional Practical Family Spiritual Physical Information Communication & Understanding Drug/alcohol use ADL Family history cancer Current service use
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Identification of risk factorsDemographic factors• Younger age (X)• Gender (X)• Single, separated, divorced,
widowed or living alone (X)• Caring for children or dependent
adults (DT)• Economic adversity (DT)• Poor social support (X)• Poor marital/family functioning (DT)• Past psychiatric treatment (X)• History alcohol/substance abuse (X)• Cumulative stressful life events (X)• Living in a rural area (X)
Disease factors
• Advanced disease (X)• Poorer prognosis (X)• More treatment side-
effects (DT)• Greater functional
impairment (DT)• Greater disease burden
(X)• Lymphoedema (DT)• Chronic pain (DT)• Fatigue (DT)
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Identify your local referral pathwaysCompile a list of available supportive care
servicesMay be cancer specific or generalistInternal resourcesExternal resources (eg community health
centres)
External resources compiled byVictorian Cancer Council HelplineService Directory
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How do I know when I should offer a referral?
Be guided by current evidence-based referral protocols
Adapt protocols to suit local needs (ie consult with local clinicians)
Be guided by not only the patients need – but by what they are ready to accept
Prioritize
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Identified Service
Referral ReasonsReferral
Form Required*
Contact Details
Clinical Psychology/Psychiatry
Lowered mood/tearfulness/social withdrawalIrritability/angerWorry/panic/distressCognitive concerns (e.g. memory difficulties or competence)
No
Dietitian MST Score of 2 or more Yes
Familial Cancer Centre (FCC)
CRC less than 50 years of age or CRC any age plus FH CRC/Gynae CancerBrCa less than 40 years of age or any age plus FH OvCa/multiple BrCaBrCa or OvCa plus ‘at-risk’ ancestryClustering of other cancers
No
Occupational Therapy
ADL assessmentHome management assessmentFatigue managementRelaxation/stress managementComfort/pressure care management
Yes
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Identified Service Referral Reasons Referral Form
Contact Details
On Track@PeterMac
Patient aged between 15-25 Yes
Pain and Palliative Care
Complex symptom managementPalliative goal of treatment Advanced cancer where death within 12 months is not unexpectedPsychosocial needs of patients and carers in the context of above point Identified bereavement risks
Yes
Pastoral care MeditationSupport in relation to spiritual health and wellbeing
No
Physiotherapy Mobility assessment/falls riskChest physiotherapyFatigueExercise program/musculoskeletalLymphoedema
Yes
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Future directionsRe-screening
Abbreviated screening toolTimes/criteria for rescreeningMay differ between tumour
streams
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Case StudiesMeet Jane, a 36 year old female;
Newly diagnosed Stage III Ovarian Cancer;
Jane is married with two young boys.
And think about some of the issues that may come up in a discussion following her completion of the supportive care needs screening tool.
http://www.cancerlearning.gov.au/edcan_resources/#/xml/module_3/casestudies/ovarian_cancer/find_the_condition_early/meet_jane.xml
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Patient discussion points• Low - Moderate distress score however number
of issues identified
• Feeling fatigued – What is the impact on the person and family life - Is it
limiting activities of daily living– How long has it been going on – Has it become more severe lately– What supports / strategies are being used or may be
available– Have these strategies worked
• Sleep– Does she have difficulty in falling asleep? – Does she wake up early and have problems getting
back to sleep?
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Patient discussion points• Eating needs
– What is happening– Is it a new problem– Is it related to the
treatment– Has she noticed any
weight loss– How long has it been
going for– What strategies has she
tried
• Constipation needs– What is happening– Is it a new problem– How has she managed up
till now
Concentration– Can she give you an example of
how it is a problem – Are her thoughts muddled?– Does she feel mentally hazy? – Did she notice whether the problem may be related to a recent change or event such as starting on a new treatment– May need a mini-mental or referral on to the doctor for review
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Patient discussion points• Fear, nervousness, sadness and worry, and the
ability to have children– how has the diagnosis affected her life and future plans– Are her fears about the disease, treatments, caring for
family, self-image, appearance, intimate relationships, prognosis or other things?
– What worries her the most? – How has this impacted – What supports / methods has she used in the past and
found helpful to cope with stress– If unsure ask her to tell you about a problem she had in
the past and how she managed it.– What supports does she have already– Is there someone that she can talk to about her feelings
or concerns?
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Patient discussion points• Work issues
– Identify what the financial concerns are at this time? – Has there been a change in her income since she
became ill? – Is she the sole/primary bread winner in her family or a
two income family– Is she on a fixed income?– Is there anyone available to help with banking and
bills?– Is this help consistent and reliable
• Risk factors– Young, female, stage III (advanced disease),
dependent children, fatigue and death of mother (cumulative stress)
• Other concerns– Genetic concerns
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Patient referrals• Information
– Cancer Council information
– Cancer Council Helpline 131120
• Social Worker:– Further psychosocial
assessment– Infertility– Care of children– Possible financial impact– Work issues
Dietitian– Lack of appetite– Constipation– Fatigue
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Patient referrals
Possible referrals:
• Physiotherapy / Occupational Therapy– Fatigue
• Genetic counsellor– Discussion of concerns re. genetic inheritance
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Case Study 2
• Meet Harold, a 75 year old male with lung cancer and has just commenced treatment, chemo and radiotherapy
• Harold lives with his son and their dog on a farm
• http://www.cancerlearning.gov.au/edcan_resources/#/xml/module_3/casestudies/lung_cancer/during_active_treatment/meet_harold.xml
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Patient discussion points
• Low distress score – what does this mean?• Feeling fatigued
– What is the impact on Harold and his ability to go home - Is it limiting activities of daily living
– How long has it been going on– Has it become more severe lately– What support / strategies are being used or are available– Have these strategies worked
• Sleep– Does he have difficulty in falling asleep? – Does he wake up early and have problems getting back to sleep?
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Patient discussion points• Eating needs
– What is happening– Is it a new problem– Is it related to the treatment– Has he noticed any weight loss– How long has it been going for– What strategies has he tried
• Breathlessness– When is he short of breath– Is it a new symptom– What if anything helps relieve the shortness of
breath
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Patient discussion points• Pain
– Describe the pain• Where is the pain • Is it a new pain• How severe is the pain• Does the pain move anywhere else• What if anything helps the pain• Is the pain uncontrolled
• Transportation / Housing– How might this impact on Harold’s willingness to
complete treatment– What is the financial impact of treatment away from
home
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Patient discussion points• Fears and Worry
– how has the diagnosis affected his life and future plans.– Are his fears about the disease, treatments, caring for
family, self-image, appearance, intimate relationships, prognosis or other things?
– What worries him the most? – Does he feel angry or guilty about having lung cancer? – How does he express those feelings?– How has this impacted – What supports / methods has he used in the past and
found helpful to cope with stress– If unsure ask him to tell you about a problem he had in the
past and how he managed it.– What supports does he have already– Is there someone that he can talk to about his feelings or
concerns?
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Possible Referrals• Information
– Cancer Council information– Cancer Council Helpline 131120
• Social Worker/ Psychology:– Further psychosocial assessment
• Social Work– Possible financial impact– Transport / housing issues
• Dietitian– Lack of appetite– Fatigue
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Possible Referrals
• Physiotherapy / Occupational Therapy– Breathlessness– Fatigue– Pain
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Implementing supportive care screening in your workplace
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Implementing supportive care screening
• Divided into 5 stages1. Assessing current practice/identifying need for
change
2. Identifying and involving key stakeholders
3. Planning for implementation
4. Implementing and evaluating change
5. Sustaining change
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1. Assessing current practice
• Can be determined by staff interviews
a) Is screening being undertaken
b) Who is responsible for screening
c) What tool is being used – what are benefits and drawbacks
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1. Assessing current practice
d) How is screening documented
e) Are there evidence-based referral protocols?
f) What proportion patients are screened? Who is missed?
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2. Identify and involve key stakeholders
a) Identify the main stakeholders
b) Form a steering committee or tap into an existing committee
c) Gain organizational support
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3. Plan for the implementation
a) Identify current staff champions
b) Document available supportive care services
d) Decide on the tool/gain permission to use
e) Identify committee/persons to approve use of tool and inclusion in medical record
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f) Determine which practitioners will screen and when
g) How will tool be incorporated in to MR?
h) Identify process for making/documenting referrals
i) How will clinicians access data
j) How will tools be available /ordered
3. Plan for the implementation
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k) Support needs of screening staff
l) Consider type of training and develop package
m) Who will need training;
n) When are they available and;
o) How long do you have?
3. Plan for the implementation
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• Other training issues– Who will undertake training
– Who will coordinate
– Who will assess success and how
– Future process in place for training/assessment
3. Plan for the implementation
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4. Implementing and evaluating change
a) Publicize implementation
b) Staff consultation to trouble shoot
c) Assessing proportion patients screened
d) Assess who is not being screened/barriers
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5. Sustain the changea) include screening in KPIs
b) Implement train-the-trainer program
c) Establish QA criteria
d) Establish committee to oversee QA
e) Rewards for those groups exceeding criteria