Supportive Care in Victoria Supportive Care in Victoria

Cathie PigottProject ManagerSupportive Cancer Care Victoria ProjectUniversity of Melbourne

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

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

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

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.

A Model of Supportive Care

Adapted from M Fitch 2000

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

VCAP Screening Target

• We will document supportive care screening for 50 % of newly diagnosed cancer patients by 2012

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

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

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?

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.

Feedback

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?

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

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

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

What are the major issues faced by the patient with cancer?

• Survival issues

• Issues requiring special consideration– Culture– Age– Geography– Sexual orientation

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)

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)

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)

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

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

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)

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

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

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

Domains CoveredDomain/Topic DTDistress/Emotional Practical Family Spiritual Physical Information Communication & Understanding Drug/alcohol use ADL Family history cancer Current service use

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)

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

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

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

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

Future directionsRe-screening

Abbreviated screening toolTimes/criteria for rescreeningMay differ between tumour

streams

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

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?

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

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?

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

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

Patient referrals

Possible referrals:

• Physiotherapy / Occupational Therapy– Fatigue

• Genetic counsellor– Discussion of concerns re. genetic inheritance

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

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?

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

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

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?

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

Possible Referrals

• Physiotherapy / Occupational Therapy– Breathlessness– Fatigue– Pain

Implementing supportive care screening in your workplace

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

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

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?

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

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

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

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

• 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

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

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