Positive Change for Life

Dr Sharon Avery, Project lead

on behalf of the Alfred Late Effects Clinic, on behalf of the Alfred Late Effects Clinic,

Leukaemia Foundation and Southern Melbourne

Integrated Cancer Service

Background

Blood cancers

• Acute leukaemia

• Myelodysplasia

Stem Cell Transplantation

• Additional treatment option for some people with otherwise • Myelodysplasia

• Chronic leukaemia

• Lymphomas

• Multiple myeloma

some people with otherwise

incurable blood cancer

• In 2012, 1567 transplants were performed in Australia

• Major progress has been made in improving survival

• There are approximately 11,000 transplant survivors 11,000 transplant survivors requiring follow-up care in

Australia

Background

• Stem cell transplantation is highly aggressive and demanding medical intervention

• Survivors are therefore at particularly high risk for a range • Survivors are therefore at particularly high risk for a range of late effects

• Through the Alfred Late Effects Clinic, rates of obesity,

hypertension, dyslipidemia and diabetes higher than

expected in the general Australian population observed

• Lifestyle modification has potential to impact these risk

factorsfactors

Positive Change for Life

• 12 month community based lifestyle modification

intervention

• Within the setting and work flow of the Alfred Late Effects • Within the setting and work flow of the Alfred Late Effects

Clinic

• Target population – survivors of blood cancer treated with

stem cell transplantation

• Aim – enable survivors to take an active role in developing

healthy eating and physical activity patterns to benefit

health, wellbeing and quality of lifehealth, wellbeing and quality of life

Objectives

1. Implementation of an innovative program to address an

area of identified need in stem cell transplant survivors

2. Delivery of quality survivorship care in a community 2. Delivery of quality survivorship care in a community

based program integrated with peer support

3. Empowerment of survivors to be active participants in

their own care through educational support

4. Promotion of awareness of cancer survivorship needs

5. Engagement of the wider community in survivorship care5. Engagement of the wider community in survivorship care

6. Development of a program model transferable across

tumour streams

Intervention: Nutrition program

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•Adopted ‘Coach for Heart Health’ model

•Telephone-delivered program to engage people

•Detailed initial face-to-face dietetic consultation

•Follow-up phone calls at 1, 4, 6 and 9 months

•Final face-to-face consultation at 12 months•Final face-to-face consultation at 12 months

•Transition to community dietitian at end of project

Individual physical activity

acti

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•Individualised physical activity plan tailored

•Community-based and cost neutral

•Referral to physiotherapy and exercise physiology

•Physical activities varied – gym, yoga, personal

training, water exercise, walking schedules, Pilates

Ind

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training, water exercise, walking schedules, Pilates

•Track progress with physical activity training diary

Group physical activities

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•Range of group physical activities

•Held in various locations

•Designed to promote social interaction

•Family members encouraged to attend

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•Family members encouraged to attend

•Barefoot bowls, table tennis, cycling, croquet

GP

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General practice engagement

•Survivorship care plans

•Late Effects Clinic website

•Promotional flyers

•e-newsletters/GP magazine

GP

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•e-newsletters/GP magazine

•Presentations at GP conferences

Incentive strategies

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•Monthly newsletters

•Educational materials & participant handbook

•Physical activity training diary

•Food diary

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•Promotional items – pedometers, drink bottles, T-

shirts

Participant handbook

Participant handbook

Participant handbook

Monthly newsletters

Evaluation

Questionnaires Measurements

Baseline, 6 months, 12 months & 18 months

– Quality of Life

– Fatigue

– Dietary habits

– Physical activity levels

Entry & 12 months

– Height

– Weight

– Body mass index (BMI)

– Waist and hip circumference

– Blood pressure

– Blood tests: fasting glucose

and lipid profileand lipid profile

Baseline findings

• 53 participants recruited between July 2012 & June 2013

• 47% male; median age 48 years

• Average time since transplant – 6 years• Average time since transplant – 6 years

• 32% - autologous transplant; 68% allogeneic

• To date, 3 participants have withdrawn from the project

citing personal reasons.

Baseline findings

High prevalence of risk factors for future health problems Identified:

Central Obesity

85%

Diabetes

Hypertensive

58%

Dyslipidemia

17% 49%

Baseline findings

Severe fatigue

15%

Nutrition

Quality of LifePhysical and emotional wellbeing

below population mean

Physical activity

Low scores 59% inactive

Outcomes

6 months

41 evaluations

End of project12 months

38 participants

18 months15 participants

Outcomes: Self-reported

Self-reported outcomes 6 months 12 months 18 months

Fatigue

Improved fatigue 32% 37% 27%Improved fatigue 32% 37% 27%

Nutrition

Improved nutrition scoresReduced unhealthy eating habits

61%56%

82%68%

87%87%

Physical activity

Improved physical activity levels 78% 76% 87%

Quality of Life

Improved physical wellbeing 27% 18% 20%Improved physical wellbeingImproved emotional wellbeingImproved functional wellbeing

Improved overall quality of life

27%27%32%

25%

18%26%42%

32%

20%33%40%

47%

Outcomes: Physical activity

55%

62%59%

Inactive

Moderately active

14%17%

21%24% 24%24%

Active

Baseline 6 months 12 months

Outcomes: Weight

Non-project cancer survivors

1.0 kg weight GAIN

3.5 kg weight LOSS

Project participants p<0.001

3.5 kg weight LOSS

Outcomes: Waist circumference

Non-project cancer survivors

Waist circumference increased 2 cm

Waist circumference decreased 3.9 cm

Project participants p<0.001

Waist circumference decreased 3.9 cm

Outcomes: Blood pressure

Non-project cancer survivors

Project participants

Systolic BP by 3 mmHg

Systolic BP by 3 mmHg

p=0.04

Diastolic BP by 1 mmHg

Diastolic BP by 3 mmHgDiastolic BP by 3 mmHg

Laboratory measurements

Laboratory testing 12 monthsLaboratory testing 12 months

Lipid profile

Improved fasting total cholesterol*Improved fasting HDL-cholesterol*Improved fasting LDL-cholesterol*

Improved fasting triglycerides*

69%64%56%

57%

Blood glucose

Improved fasting blood glucose* 50%

*participants with abnormal values at baseline

Qualitative outcomes

• Program was acceptable to and highly valued by

participants

• 100% state they would recommend the program

• 96% intend to continue with nutrition changes and 89%

intend to continue physical activity

• 94% of carers report positive changes in their partners as

a result of the project

• 85% of carers say they have personally benefited from • 85% of carers say they have personally benefited from

their partner’s involvement in the project

Sustainability

• Individualised and structured 12 week program

• Facilitated goal setting• Facilitated goal setting

• Expert health education specific to blood cancer survivorship

• Exercise physiology

assessment and plan

• Nutritional assessment and intervention

• Electronic capture of activity• Electronic capture of activity

• Weekly telephone counselling

to monitor progress

Acknowledgments

Late Effects Clinic TeamDr Trish WalkerDaniela Klarica

Malignant Haematology & SCTProf Andrew SpencerDr Andrew Wei

Victorian Government Department of Health

Daniela Klarica

Multidisciplinary care team

Dr Andrew Wei

Dr Tony SchwarerDr Sush PatilNursing staff

Participants, family members

and carers

PCFL Project TeamHelen MclauchlanBeth Viner-Smith

Anne Hodgson and carersAnne HodgsonSteering Group

www.alfredlateeffects.org.au