Self-Management: An Essential component of Chronic Disease Management Experiences from Eyre Peninsula, South Australia

1. Self-Management: An Essential component of Chronic Disease ManagementExperiences from Eyre Peninsula, South Australia

2. What�s the Problem? Ageing population More CD & long term health problems Less quality of life More dependence on the health system ?Cost of healthcare Health system becoming more complex Health system struggling now � will it cope in the future? We are all getting older The older we get the more likely are we to have one or more long term health problems Chronic conditions affect quality of life for hundreds of thousands of Australians Studies overseas suggest some simple interventions could improve this situation Will they work just as well here? What works best? How can we improve the health system to cope with a growing problem? How do get the answers to some of these questions? Do some research! We are all getting older The older we get the more likely are we to have one or more long term health problems Chronic conditions affect quality of life for hundreds of thousands of Australians Studies overseas suggest some simple interventions could improve this situation Will they work just as well here? What works best? How can we improve the health system to cope with a growing problem? How do get the answers to some of these questions? Do some research!

3. Chronic Disease� Complex and multiple causes Usually gradual onset Occur across the life cycle though more prevalent with older age Reduce quality of life through physical limitations and disability Long term & persistent leading to gradual deterioration of health While not usually life threatening � are the most common cause of premature death

4. What is a Chronic Condition? Any problem we have for more than 6 months Creeps up on us slowly Sometimes takes a few tests to diagnose Not curable We need to learn to live with day by day We need to learn new things to stay well Examples�

5. Chronic Disease is largely� Preventable

6. Chronic Disease in Australia� 70% of the burden of disease due to death, disability and diminished quality of life Expected to increase to 80% by 2020 CVD leading cause of death Cancer Lung cancer caused most deaths (2002) Highest cause for men, close second for women after breast cancer Diabetes more than doubled in the last 20 years Diabetes type 2 predicted to be leading by 2020 Asthma 14% of children, 10% of adults Arthritis & musculoskeletal conditions cause more disability than any other condition

7. Prevalence of chronic diseases (aged> 20 years) in South Australia

8. The Impact in SA

9. SA Chronic disease priorities Cardiovascular disease (heart, stroke, and vascular disease) Diabetes (with a focus on type 2 diabetes) Musculoskeletal conditions (including arthritis and osteoporosis) Respiratory (Asthma and COPD)

10. What are the differences between acute and chronic care?

11. Acute Chronic Episodic Cure expected QOL highly dependent on professional care QOL highly dependent on short term services HP generally the expert Short term goals Compliance expected

12. Acute Care People who need our help roam into our �radar� They are immediately assessed, treated and discharged � cured! They move away from our �radar� system They are not expected to return in the immediate future

13. Chronic Care Model Michael Von Korff, Judith Schafer, Evette Ludman Green, Melissa Pinkerton, Connie Davis and Ed Wagner. Group Health Cooperative Centre for Health Studies Seattle

16. National Chronic Disease Strategy Urgent need to identify practical and achievable approaches Develop Australia�s health system to meet current and future demands for chronic disease prevention and care Responsibility share across all Govt (state and federal), public and private sectors and non government organisations

17. National Chronic Disease Strategy Aims Provide a framework of national direction for improving chronic disease prevention and care across Australia Strengthen capacity to meet the challenges of increasing prevalence of CD Improve health outcomes and reduce the impact of CD on individuals, families, communities Recognises Health sector must change, take a leadership role and increase involvement with other sectors to improve coordination of care and influence the social and environmental determinants of health

18. National Service Improvement Frameworks Concentrate on service improvement for specific diseases Cancer Asthma Diabetes Heart, stroke and vascular disease Osteoarthritis, rheumatoid arthritis and osteoporosis Mental Health separately considered in the National Mental Health Plan 2003 � 2008 * SM role in MH (case study)

19. Continuum of Chronic Disease Prevention and Care

20. National Chronic Disease StrategyFour Key Action Areas Prevention across the continuum Early detection and early treatment Integration and continuity of care Self-management

21. Definition of Self Management� Involves the individual in engaging in activities that protect and promote health by: Being able to make or participate in informed decisions; Building partnerships with others; Managing the impacts on functioning, emotions and interpersonal relationships; and Monitoring and managing symptoms and signs of illness and chronic conditions. (Self-managing Toward Wellness Strategic Framework Committee, DHS, SA 2003)

22. The Centre for Advancement in Health (1996) proposed the following definition: �Involves [the person with the chronic disease] engaging in activities that protect and promote health, monitoring and managing of symptoms and signs of illness, managing the impacts of illness on functioning, emotions and interpersonal relationships and adhering to treatment regimes.� (p.1)

23. Kate Lorig (1993) states that self-management is also about enabling: �Participants to make informed choices, to adapt new perspectives and generic skills that can be applied to new problems as they arise, to practice new health behaviours, and to maintain or regain emotional stability�.

24. What is Self-management? Self-management is the active participation by people in their own health care. Self-management incorporates health promotion and risk reduction, informed decision making, following care plans, medication management, and working with health care providers to attain the best possible care and to effectively negotiate the often complex health system.

26. 4. Monitor symptoms associated with the condition(s) and Respond to manage and cope with the symptoms 5. Manage the physical, emotional and social Impact of the condition(s) on your life 6. Live a healthy Lifestyle

27. Principles Knowledge Involvement Care plan Monitor & Respond Impact Lifestyle

31. Effective self-management� results in better quality of life, fewer hospital stays, fewer health crisis, better coordination of care and ultimately better health outcomes for people with long term health problems.

32. Self-management makes sense� Empowering More self reliance Building self-efficacy Self-belief, confidence, skills, knowledge, coping mechanisms & external support to maintain physical, emotional, psychological, & spiritual well being & quality of life Partnerships Between clients, their families & carers and health care workers

33. National Strategy� Making self-management a key action area in the National Chronic Disease Strategy recognises that many of the health behaviours required to effectively manage chronic disease are the daily responsibility of people themselves. It is essential that supports are put in place at all levels of the health system to optimise people�s ability to self-manage.

34. Embedding SM into the health system� Understand the nature of their illness including risk factors and co-morbidities Have knowledge of their treatment options and be able to make informed choices regarding treatments Actively participate in decision making with health professionals, family and carers and other supports in terms of continuing care Follow a treatment or care plan that has been negotiated and agreed with their health care providers, family and carers and other supports

35. Monitor signs and symptoms of change in their health condition and have an action plan to respond to identified changes Manage the impact of the disease on their physical, emotional and social life and have better mental health and wellbeing as a result Adopt a lifestyle that reduces risks and promotes health through prevention and early intervention Have confidence in their ability to use support services and make decisions regarding their health and quality of life

36. Future directions for self-management Reorienting the health system to support self-management Prioritising patient participation in care planning Improving the capacity of the peer, disability and carer support sectors Tailoring self-management approaches to individual and community needs

38. Overarching Strategy Adopt a clustered approach to chronic disease prevention and management Action Strategies 1. Increase system coordination and integration 2. Increase the availability of a system for self- management 3. Increase primary health care capacity for prevention, early detection, early intervention, and chronic disease management Key Directions for SA

39. Self-management Approaches Diverse self-help internet-based resources counselling approaches Brief interventions Motivational interviewing mentoring and peer-based support 2 comprehensive programs developed & evaluated Stanford Chronic Disease Self Management Program Flinders Chronic Condition Self-management

40. Stanford Chronic Disease Self Management Peer Leadership � Peer Educators = Community involvement Reinforces the principles of self management 6 wk course - 2 � hours once per wk Focus on group interaction & dynamics People with different chronic health problems attend together Course is led by 2 trained leaders, at least one should be peer educator Skills learnt and practiced every week are goal setting (action planning) and problem solving

41. Other topics include Techniques to deal with difficult emotions such as anger, fear & frustration Appropriate exercise to improve and maintain strength, flexibility and endurance Safe use of medicines Communicating effectively with family, friends and health professionals Nutrition Cognitive symptom management Many more�

42. Why Peer Education? Friendly and natural sharing Peer educator has credibility Increased potential to inform Can break down �stereotypical� views Information easily understood Cost effective, accessible and reciprocal Peers provide health information and not �health advice�!

43. Training involves 4 day intensive Experience the course as a participant Practise teaching sessions Bring a volunteer (1:1 ratio encouraged) Leave your HP hat at home! PROCESS VS CONTENT Can be split over 2 weeks Text book �Living a Health Life with Chronic Conditions� Leaders manual New quality framework being developed for SA by DOH

44. Lemon Demo& Distraction

45. How do we assess self-management? Structured process based on the 6 principles of SM � 12 questions Assessment of self management behaviours Collaborative identification of problems Collaborative goal setting Negotiated care plan Client centred � client owned

46. Flinders Model of Chronic Condition Self-Management Flinders Human Behaviour & Health Research Unit (FHBHRU) Clinician based Generic set of tools: Partners in Health (self assessment) Cue & Response (interview by HCP) Problems & Goals Self-management Care Plan Flows on to a medical based care plan ?EPC Combined = Holistic Care Coordination Flinders Human Behaviour & Health Research Unit (FHBHRU) has developed a generic set of tools and processes that enables clinicians and clients to undertake a structured process that allows for assessment of self-management behaviours, collaborative identification of problems and goal setting leading to the development of individualised care plans. These care plans are important cornerstones in enhancing self-management in people with chronic conditions. The tools include the Partners in Health Scale �, Cue and Response Interview � and Problem and Goals assessment. Flinders Human Behaviour & Health Research Unit (FHBHRU) has developed a generic set of tools and processes that enables clinicians and clients to undertake a structured process that allows for assessment of self-management behaviours, collaborative identification of problems and goal setting leading to the development of individualised care plans. These care plans are important cornerstones in enhancing self-management in people with chronic conditions. The tools include the Partners in Health Scale �, Cue and Response Interview � and Problem and Goals assessment.

47. Training involves 2 day workshop Flinders Resource Manual Open mind and willingness to participate Volunteers on 2nd day Certificate of competence issued when 3 completed plans evaluated by trainer within 3 months of completion of training Tertiary qualification also available via Flinders online course

48. Enhanced Primary Care (EPC) Care planning GP care plan: anyone with chronic condition Team Care Arrangement: As above with multidisciplinary needs (feedback needs to be obtained from the HCP�s) Aged Health Assessment Over 75 or over 55 if ATSI Home Medicines Review Anyone with multiple medications � initiated by GP but we can all refer or recommend Case Conferencing Used in conjunction with care planning for multidisciplinary meetings to plan or review care. Adult Health Check for ATSI � 2 yrly

49. Aboriginal Health Statistics Difficult to obtain accurate data ATSI status not recorded Not asked Not reported Data only obtained from Hospitalisations Age at death Cause of death Lots of gaps Not all states & territories collect ATSI specific information

51. Death from preventable conditions Diabetes 8 times higher Respiratory conditions 4 times higher Circulatory conditions 3 times higher

52. Life Expectancy Gap between Indigenous & non-Indigenous Australians is 20 years About 45% of Indigenous men and 34% of Indigenous women will die before the age of 45 Children are born with lower birth weights Infant mortality is double that of non-indigenous people

54. ATSI Context Aboriginal population is not ageing but� Chronic disease is much more prevalent in ATSI people ATSI people get chronic diseases younger Higher death rates from preventable chronic conditions Reasons for this are complicated and varied so it makes sense that the solutions will not be easy or straight forward.

55. But remember� Statistics are just numbers and averages� We are all in this together� We can change the way things are� Self-management is one way of helping us to help ourselves� Increasing our Self-management knowledge and skills makes sense because� 99.9% of the time who is looking after you? YOU are!

56. When was the last time you felt really healthy?

57. What does being healthy mean to us? Not just about not being sick Being with family and friends Feeling happy/content/relaxed Being active Feeling well enough to be active Eating good food Doing all the things we enjoy

58. What do we have to do to stay well? Know about our health & conditions Know about the different treatments and options Know what to do when something goes wrong Do it! Keep track of how well we are doing and write it down Take medicines the right way Following what the Doc and others say Not let our condition take control of our lives Not eating junk food or doing things that will make us worse Being as active as we can be in our daily lives

59. Self-management applies to� Clients Health workers Managers CEO�s Mothers Fathers Kids All of us!

60. Self-management Story Commonwealth funded projects Rural Chronic Disease Initiative Sharing Health Care SA Steep learning curves for health service, workers and clients Changes in way we look at health and wellbeing Think outside the square for solutions instead of waiting for them OUR HEALTH IN OUR HANDS!

61. Living Improvements For Everyone Name includes the main aim of the program � to help people live longer Inclusive � all people of all ages, all backgrounds and something everyone can relate to Put all activities under one banner to result in� AN INTEGRATED MODEL OF CHRONIC DISEASE MANAGEMENT There were so many new things happening so to make sense of it all and to show the relationship between them we put it all together into a model. This helped to explain how things worked together especially for staff.There were so many new things happening so to make sense of it all and to show the relationship between them we put it all together into a model. This helped to explain how things worked together especially for staff.

62. The major elements: LIFE course (Stanford model), Health Promotion and holistic care coordination (Flinders model & EPC) work well together and complement each other! One without the others is not as effective Our overall aim is the centre of the model : A HEALTHIER ABORIGINAL COMMUNITY LIVING LONGER This will occur through teamwork - all stakeholders working together towards promoting better health & wellbeing and we have found that self-management can be as effective in prevention as it is in chronic disease management.The major elements: LIFE course (Stanford model), Health Promotion and holistic care coordination (Flinders model & EPC) work well together and complement each other! One without the others is not as effective Our overall aim is the centre of the model : A HEALTHIER ABORIGINAL COMMUNITY LIVING LONGER This will occur through teamwork - all stakeholders working together towards promoting better health & wellbeing and we have found that self-management can be as effective in prevention as it is in chronic disease management.

64. Health Promotion Prevention, early detection & intervention: Empower people through Building Trust & Respect = Rapport Building Self Efficacy � self confidence & self reliance Knowledge Community Activities � consumer participation Crocfest Forums Umewarra media Enhanced Primary Care (EPC) Prevention activities eg Adult health check, Aged Health Assessments, Child Health Checks, immunisations, pap smears, breast screening etc

65. A local participant in the program said this one day, so we asked her if she would feature in some promotion posters for us � she happily agreed!A local participant in the program said this one day, so we asked her if she would feature in some promotion posters for us � she happily agreed!

67. Organisational Change Management Teamwork crucial Staff acceptance Information systems Staff training & Education (ongoing) Marketing & promoting to staff & community High level commitment and support

68. Holistic Care Coordination Chronic disease Triage All clients screened at presentation Thorough assessment of health needs including EPC items, immunisations, blood & other tests Flinders Model of Chronic Condition Self-management Enhanced Primary Care (EPC) items Best practice chronic disease care plan templates Supportive IT system (Medical Director & CME) Internal and external referral system Automated recall and review system

69. Care Planning Process Flinders Tools � social determinants of health identified � completed by AHW Medical Director � Disease specific templates reflect best practice � majority of workup completed by AHW then checked by GP Recall system: 3,6 or 12 months � depending on self management ability and health status Internal & External referral system to ensure best management matches available resources including intersectorial collaboration (Govt & NGO�s: Housing, employment agencies, FAYS, Disability Action etc) An Aboriginal Health Worker completes the Flinders assessment and the self-management plan, then commences the medical management plan using the appropriate care plan template, a long consult is booked for the client and the health worker to go over the plan with the GP. This gives the GP an opportunity to check what has been negotiated so far and to add specific tasks such as a medication review, order blood and other tests and complete any relevant referrals. The recall is entered as an automatic reminder.An Aboriginal Health Worker completes the Flinders assessment and the self-management plan, then commences the medical management plan using the appropriate care plan template, a long consult is booked for the client and the health worker to go over the plan with the GP. This gives the GP an opportunity to check what has been negotiated so far and to add specific tasks such as a medication review, order blood and other tests and complete any relevant referrals. The recall is entered as an automatic reminder.

70. Ms A, 55 year old lady with multiple chronic conditions Care plan completed: Multiple medications� BSL 18.3 (random) � recurrent thrush & bleeding gums Attended most sessions and 2 camps. Formed friendship with other ladies in the group. Tried ten pin bowling for the first time in her life Outcomes: Medication review Blood tests & screening Referrals & appointments Follow up

71. Care Plan Review� Care plan review - all clinical measures improved: BP?, weight?, cholesterol?, HbA1c? (from 8 to 6.5) She is also more confident in dealing with day to day problems.

73. Adaptation for ATSI Extra day of training Modified manual More prescriptive Culturally appropriate Extra activity on Grief & Loss Aboriginal Health Workers Aboriginal Community members

74. LIFE Course Adaptation Process Course re-presented with a few minor changes� Findings: Difficulties with language predominant Some activities needed to presented in different order Examples to reinforce concepts were made �real� Grief & Loss recognised as having a major impact on Aboriginal people�s health � new activity designed Less emphasis on people attending only one 6 week course Work was commenced to make course more relevant to Aboriginal people a core group of 12 people attended every session a core group of 12 people attended every session

75. New Grief & Loss activity Previous sessions on grief and loss difficult � some people loathe to discuss - �taboo subject� This session, based on the process designed by Stanford, was a gentler way to get people to open up and no one objected The process allowed people to talk generally without feeling like they were in the spotlight

83. LIFE Leader Training 4 day generic Stanford training 1 extra day Using new manual Flexible delivery Language Culture Practice teaching Building networks

86. To summarise� Chronic disease is high on the national and state health agenda�s Self-management is a vitally important element for prevention, early detection and management of chronic disease Change needs to occur Individual Systems Local State National Lots of options to consider

87. Self-management is Primary Health Care

88. OK � where do we start? How do we assess our Health Service? Assessment of Chronic Illness Care Understand the Chronic Care Model Use the assessment tool (ACIC) to assess the health services current level of best practice in Chronic Care Identify gaps in Chronic Care Use quality approach: plan, do, study, act to build capacity for Chronic Care in a continuous improvement framework Do we need a Steering Group for planning and decision making? ?We can safely assume that Training & Education will be a key area for improvement! So lets start planning to build the capacity of the workforce to meet the challenge!

89. Key References Chronic Disease: Prevention & Management opportunities for SA, DOH, 2004 www.health.sa.gov.au/chroniccondition/Portals/57ad7180-c5e7-49f5-b282-c6475cdb7ee7/ChronicDiseaseindexed.pdf Innovative Care for Chronic Conditions: Building Blocks for Action, WHO Global Report 2002 www.who.int/chronic_conditions/icccreport/en/index.html National Chronic Disease Strategy, DoHA, 2006 www.health.sa.gov.au/Default.aspx?tabid=84 Chronic Disease Management Through Quality Improvement � The Basics: A Discussion Paper, Dr Chris Rauscher (email Kate for a PDF version) Chronic Care Model: Wagner et al www.improvingchroniccare.org