Positive Change for Life

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1 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

2 Background Blood cancers Acute leukaemia Myelodysplasia Chronic leukaemia Lymphomas Multiple myeloma Stem Cell Transplantation Additional treatment option for 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 requiring follow-up care in Australia

3 Background Stem cell transplantation is highly aggressive and demanding medical intervention 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 factors

4 Positive Change for Life 12 month community based lifestyle modification intervention 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 life

5 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 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 care 6. Development of a program model transferable across tumour streams

6 Intervention: Nutrition program rogram Nutrition pr 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 Transition to community dietitian at end of project

7 Individual physical activity Individual physical activity 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 Track progress with physical activity training diary

8 Group physical activities Group physical ac ctivities Range of group physical activities Held in various locations Designed to promote social interaction Family members encouraged to attend Barefoot bowls, table tennis, cycling, croquet

9 General practice engagement GP Engagem ment Survivorship care plans Late Effects Clinic website Promotional flyers e-newsletters/gp magazine Presentations at GP conferences

10 Incentive strategies Motivational stra ategies Monthly newsletters Educational materials & participant handbook Physical activity training diary Food diary Promotional items pedometers, drink bottles, T- shirts

11 Participant handbook

12 Participant handbook

13 Participant handbook

14 Monthly newsletters

15 Evaluation Questionnaires Baseline, 6 months, 12 months & 18 months Quality of Life Fatigue Dietary habits Physical activity levels Measurements Entry & 12 months Height Weight Body mass index (BMI) Waist and hip circumference Blood pressure Blood tests: fasting glucose and lipid profile

16 Baseline findings 53 participants recruited between July 2012 & June % male; median age 48 years Average time since transplant 6 years 32% - autologous transplant; 68% allogeneic To date, 3 participants have withdrawn from the project citing personal reasons.

17 Baseline findings High prevalence of risk factors for future health problems Identified: Central Obesity 85% Hypertensive 58% Diabetes Dyslipidemia 17% 49%

18 Baseline findings Severe fatigue 15% Quality of Life Physical and emotional wellbeing below population mean Nutrition Low scores Physical activity 59% inactive

19 Outcomes 6 months 41 evaluations End of project 12 months 38 participants 18 months 15 participants

20 Outcomes: Self-reported Self-reported outcomes 6 months 12 months 18 months Fatigue Improved fatigue 32% 37% 27% Nutrition Improved nutrition scores Reduced 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 emotional wellbeing Improved functional wellbeing Improved overall quality of life 27% 32% 25% 26% 42% 32% 33% 40% 47%

21 Outcomes: Physical activity 55% Inactive Moderately active 62% 59% Active 21% 24% 14% 24% 24% 17% Baseline 6 months 12 months

22 Outcomes: Weight Non-project cancer survivors 1.0 kg weight GAIN Project participants p< kg weight LOSS

23 Outcomes: Waist circumference Non-project cancer survivors Waist circumference increased 2 cm Project participants p<0.001 Waist circumference decreased 3.9 cm

24 Outcomes: Blood pressure Non-project cancer survivors Systolic BP by 3 mmhg Diastolic BP by 1 mmhg Project participants p=0.04 Systolic BP by 3 mmhg Diastolic BP by 3 mmhg

25 Laboratory measurements Laboratory testing Lipid profile Improved fasting total cholesterol* Improved fasting HDL-cholesterol* Improved fasting LDL-cholesterol* Improved fasting triglycerides* Blood glucose 12 months 69% 64% 56% 57% Improved fasting blood glucose* 50% *participants with abnormal values at baseline

26 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 their partner s involvement in the project

27 Sustainability Individualised and structured 12 week program Facilitated goal setting Expert health education specific to blood cancer survivorship Exercise physiology assessment and plan Nutritional assessment and intervention Electronic capture of activity Weekly telephone counselling to monitor progress

28 Acknowledgments Victorian Government Department of Health Late Effects Clinic Team Dr Trish Walker Daniela Klarica Multidisciplinary care team PCFL Project Team Helen Mclauchlan Beth Viner-Smith Anne Hodgson Steering Group Malignant Haematology & SCT Prof Andrew Spencer Dr Andrew Wei Dr Tony Schwarer Dr Sush Patil Nursing staff Participants, family members and carers

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