Does chronic disease self-management have a role in preventing chronic disease in rural Australia? Kate Warren, Spencer Gulf Rural Health School, Tahna lee Pettman, Spencer Gulf Rural Health School and Australian Technology Network Centre for Metabolic Fitness, Debra Misan, Spencer Gulf Rural Health School, Gary Misan, Spencer Gulf Rural Health School and Australian Technology Network Centre for Metabolic Fitness

Abstract Chronic disease accounts for nearly 43% of the total disease burden in Australia and is growing. The situation is much worse for Indigenous Australians. To make any impact on decreasing this burden, efforts need to be focused on the risk factors which cause these diseases: 30% of Australians aged 25 years and over have high blood pressure, 50% have high blood cholesterol levels, and 60% are overweight or obese.This paper outlines a multi-faceted approach to reducing the disease burden through using traditional styles of education together with self-management methods which have, until now, been the domain of chronic disease management. The Stanford model of chronic disease self-management (CDSM) has a proven record nationally (via the Sharing Health Care Initiative) and internationally (via Stanford University, USA) in improving quality of life, reducing hospital admissions and emergency medical visits as well as improving selfefficacy in people who have chronic illnesses such as diabetes, heart and lung diseases. The major skills taught in the program are action planning (short term goal setting), and problem solving as well as management of pain, fatigue, depression and medications. Other topics include exercise, healthy eating, and positive thinking. Many of these skills are also important for well and at risk populations to promote effective ‘lifestyle self management’ and prevent or delay the onset of chronic diseases such as diabetes and heart disease. A new intervention needed to be developed to cater for these ‘well’ populations that adopt proven selfmanagement tools and emphasise diet and exercise and other strategies to reduce risk factors for metabolic syndrome. This intervention will be developed into a Peer Education program (based on the Stanford model) in the community once the initial trials are complete. A new lifestyle study being conducted in Whyalla, South Australia has seen an approach that combines the Stanford self-management methodology with specific lifestyle education and physical activity to encourage behaviour change in ‘at risk’ populations. The study, named Shape up for Life, is a randomised controlled trial targeting rural people who have metabolic syndrome characterised by central obesity combined with elevated blood pressure, fasting blood glucose, triglycerides and low HDL cholesterol. Clinical measures and quality of life have been measured at baseline and four months and will be repeated at 12 months post commencement. Self-efficacy will also be measured using an adapted version of the Stanford scale which measures self-efficacy in people who have chronic disease.

Background

Page 1

Chronic disease accounts for nearly 43% of the total disease burden in Australia and is growing. (1) Common risk factors include sub-optimal diet, sedentary lifestyle, smoking, overweight and obesity, dyslipidaemia and high blood pressure. Rates of overweight and obesity have almost doubled in Australia in the last two decades, (2) with 62% of men and 45% of women now classified as being overweight or obese. (3) Rates of overweight and obesity are even higher in rural and remote Australia, making this study ideally placed to measure the potential impact that this program could have to the ongoing health of rural populations. Along with many personal impacts, obesity is strongly associated with concomitant health issues, notably when coupled with a clustering of risk factors characterising Metabolic Syndrome (MS). People with MS have a three-fold risk for coronary heart disease and stroke, and increased cardiovascular morbidity and mortality (4). People who are overweight might be considered in the “at risk” stage of the disease continuum; they are without ‘disease’ per se, but they

are not ‘well’ considering their high risk of chronic disease if lifestyle changes are not adopted to prevent this early progression. There is still no universal agreement on the optimal method for weight/fat loss and prevention of weight regain, nor a consensus on optimal management of metabolic syndrome (5). Diet and exercise information aimed at consumers by print and electronic media is confusing and not easily translated into practical strategies that can be incorporated into life to counter overweight and obesity and lose weight or change body shape. There is an overload of information in the lay literature, quasi-scientific and medical literature regarding diets, exercise regimens and other remedies to counter the epidemic of overweight which for the most part are unrealistic and unsustainable. (6) (7) Some well designed clinical trials of diet or exercise alone have demonstrated impact on weight loss and preventing diabetes, but few have demonstrated effects sustainable beyond 6 months. (8) However, there is recent evidence that suggests that interventions that combine lifestyle changes (diet and exercise) sharply reduces risk of developing diabetes and enables sustainable weight loss.(9). The question that remains in this context is how these interventions should be implemented so that they can be sustained at the community level. The term self-management first appeared in a book on the rehabilitation of children with Asthma written by Thomas Creer. He and his colleagues were using the term in conjunction with their paediatric Asthma program since the mid 1960s and based their work on the early writings of Albert Bandura.(10) Self-management has many different definitions and conceptualisations. The National Chronic Disease Strategy has captured many of previously explored elements in the following definition: 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. (11)

Self-management is now a common term in health education and is attached to many health promotion and patient education programs.(10) In this context, self-management can be applicable to all populations across the health continuum. Whether we are well and practicing healthy lifestyle behaviours to avoid risk factors and increased chances of developing chronic health problems, or we are at risk because of genetics or risky behaviour, we still need to self-manage just as much as those people who have a chronic disease. In this study we aim to provide evidence to support the premise that self-management education can contribute to the behaviour change required to prevent the development of some chronic disease in people who are currently ‘well’ or free of disease. Selfmanagement theory is based on improving people’s self-efficacy, that is, their confidence and belief that they can overcome barriers to achieve their goal.(12)

Context The purpose of our study is to improve physical and metabolic fitness in a group of overweight/obese individuals who meet the International Diabetes Federation (IDF) criteria for metabolic syndrome. (13) We are using a locally developed 16 week diet and exercise education program which recommends a combination of non-energy restricted dietary modification and sensible exercise. The education program applies some of the empowering, self-efficacy building methods of chronic disease self management in order to facilitate sustainable lifestyle change.

Page 2

Additionally, we wish to administer at the final assessment visit a measure of self-efficacy. There are multiple tools available, but none of them match our intent. One possibility is to modify part of the Stanford 2000 self-efficacy measure. (14) The tool in its current form measures the self efficacy of people who have chronic disease, measuring their ability to confidently manage the day to day hurdles of dealing with a chronic disease such as diabetes, heart disease, asthma etc. These hurdles could include dealing with many different symptoms, safely taking their medication, following treatment regimes, communicating effectively with health care providers and many others. For people who do not have a chronic disease, the issues would be how confident they are that they can modify their health

behaviour in order to reverse the risk factors of metabolic syndrome. Adapting the Stanford 2000 to suit the prevention of chronic disease will allow us to collect some much needed evidence to support the theory that self-management does in fact contribute in prevention and not just the management of some chronic disease. An extensive search of literature will need to take place before a final tool is selected.

Program framework Of the 132 participants currently enrolled, 94 were allocated (randomly) to the intervention group implemented over two different time periods, therefore were/are involved in the 4-month lifestyle program. The education component of the course is(12) based upon the Australian Guide to Healthy Eating (15) and National Physical Activity Guidelines for Adults (16). Every week participants attend an hour of education and an hour of physical activity. The main components covered in the education and activity program week by week are: •

healthy eating (quality and variety of food)



cardiovascular (aerobic or endurance) exercise



energy balance (intake and expenditure)



resistance exercise



energy density vs. nutrient density



stretching exercise



glycaemic index, carbohydrate and fibre



resistance progression



fats and omega 3



sodium (salt)



food label reading and virtual supermarket tour



practical cooking



managing food and activity triggers and environment



managing family, social and cultural food pressure.



Progressive muscle relaxation (cognitive). We included this activity mostly because many participants were trying resistance training for the first time and sore tense muscles were common despite the warnings to moderate and gradually increase. We also recognised the role stress and anxiety relating to behaviour change. The participants needed tools to combat these if they were to achieve their goals.



Better breathing. Again, relating to stress and anxiety but also recognising that people who are carrying excess abdominal fat are prone to shortness of breath. Aerobic exercise and even simple activities can leave them feeling drained and discouraged.



Self talk (positive thinking). Being overweight and/or obese is no picnic psychologically. People face subtle (and not so subtle) prejudices every day, embarrassment, shame and ridicule. Being able to turn negative, self-loathing statements into positive self affirmations may mean the difference between eating the Tim Tam or the bran muffin.



Depression management. This activity was selected because depression or feeling ‘down in the dumps’ is a common symptom in people who are unhappy with their body image. It was also

Page 3

Components of the Stanford self management course (17) that were incorporated into the program included:

included because people need to be able to recognise the signs of reactive or clinical depression and take appropriate steps to treatment. •

Guided imagery (cognitive). Another tool to combat tension, stress and anxiety and offer another choice of relaxation technique



Making informed treatment decisions. This activity was altered to focus on the myriad of weight loss ‘magic bullets’ available, to enable a sensible method of assessing whether a ‘treatment’ is suitable. Much discussion in this activity is centred on past experiences and reinforces the lifestyle change ‘for life’ concept.



Fatigue management. Carrying extra weight is also tiring, and feeling fatigued is no motivation to get out and be active. This activity was included to offer some possible solutions.



Mind management and distraction (cognitive). This activity is another cognitive technique which may be used to manage symptoms of overweight or even of exercise. It is also presented as a tool that may distract from perceived hunger, habitual snacking or socio-cultural pressures associated with food.



Lifestyle self-management tool box. This was altered somewhat from the Stanford version to reflect the lifestyle challenges. It was included because of the simple analogy to explain that there are many different ways to reach a goal and we shouldn’t feel limited in our potential to solve our own issues.

The core tools we utilise as pivotal to the self-management methodology include weekly action planning, feedback and problem solving. Action planning is undertaken every week as a means to teach people about goal setting, breaking down the goals into smaller much more manageable portions that can be easily achieved. The following week participant’s feedback their progress in the action plan for the past week and identify any barriers to them completing their plan. If there were issues the group then brainstorm possible solutions for the individual who then chooses one solution to try and solve the problem. Brainstorming, discussion and modelling processes are facilitated by two trained leaders who do not lecture didactically but promote group interaction and facilitate adult learning. The process used in the Stanford model allows the participants to work as a group to help solve each others problems, empowers people to take control of their own situation, and builds self-efficacy and coping skills. Anyone who has ever been on a diet or tried to lose weight will testify that it is not easy and straight forward; most fail even though their efforts seem to more than match the task at hand. Blaming this failure on lack of ‘will power’ is akin to labelling people who don’t manage their chronic disease well as ‘non-compliant’. By gradually building on peoples skills, knowledge and self-efficacy, we hope to better understand the motivation to change, and allow participants to develop their skills to a point of self-reliance, i.e. they are not dependant on any health care provider, health program, weight loss program, fad diets or expensive treatments or medications. They can get off the weight loss merrygo-round and concentrate on the knowledge and skills they have learnt to change their shape, become leaner, stronger, fitter (physically and metabolically) and more aware of the forces working for and against them. Self-management utilises the largely untapped potential of peer education and the project aims to translate the program into a 6–8 week intervention course that can be easily taught to peer leaders to run in a community setting. Establishing a peer relationship at the beginning of the 16 week intervention was recognised to be crucial in developing the preventative self-management. Peers are people who have something in common and relate well to each other. They can understand better what each others experiences are or have been because it may very similar to their own. This relationship enables rapport building and an interactive communication that may be absent in a professional/client relationship.(18)

Page 4

The study protocol was approved by the Human Research Ethics Committee of the University of South Australia, Adelaide, South Australia and all the study participants gave written informed consent prior to participation.

Discussion In rural SA rates of overweight and obesity are higher than in metropolitan Adelaide. In Whyalla, rates are higher than the State average for reasons which are not clear but are probably associated with the lower socio-economic status of the community. These rates of overweight and obesity are also associated with higher than State average rates of cardiovascular disease and diabetes. Rural / regional communities such as Whyalla are useful ‘laboratories’ for this type of community style intervention program because they are geographically circumscribed, have relatively stable populations, are less likely to be contaminated by migration of the population, have large numbers of people with the conditions of interest and people are usually interested in the well being of the general community. Whyalla has a cultural diversity representative of SA (except for people of Indo-Chinese/Asian extraction), has good supportive local health infrastructure, the only Regional University campus outside of Adelaide with a Health focus which also hosts a Rural Clinical School and University Department of Rural Health. Research facilities are easily accessible as are staff and because of small travelling distances access to research facilities is relatively convenient for participants, including after hours (e.g. for information and exercise sessions). While early results are encouraging, it will be the 12 month testing that will show whether the behaviour changes are sustainable in the longer term. We have focused on the program as a life long commitment to healthy living, not just another short term solution to a long term problem. Many people have attempted resistance training for the first time in their lives and are amazed at the changes in their bodies. Participants are trying different foods for the first time, using different cooking methods and filling their pantries with legumes, pulses, and wholegrain foods. The ripple effect is becoming evident as family’s diets are dramatically altered, salt shakers disappear from dining room tables and take-away food is no longer on the menu. ‘Weigh-ins’ are discouraged because changing body composition by building lean tissue and losing fat is a long term process and scales do not tell the true story. This habitual behaviour, however, has been one of the hardest to break. Our culture instils weight anxiety into our psyche from an early age and it appears that this is one battle we will have to continue. People become discouraged by their perceived lack of progress measured by body mass alone.

Page 5

The second stage of the program being trialled aims to extend the initial model described in this paper. We wish to demonstrate that it is possible to translate our program into a community-focused lifestyle program through the application of peer education and support, similar to that applied successfully in chronic disease self-management in regional Australia. (19) Upon completion of the study we plan to apply the program across regional Australia, delivered as a peer-led, self management course to enable communities to confront obesity and prevent chronic disease in an at-risk population.

Figure 1

Adherence to Intervention sessions Cohort 1

Intervention Attendance

Info Exercise

we ek we 1 ek we 2 ek we 3 ek we 4 ek we 5 ek we 6 ek we 7 ek we 8 e we k 9 ek we 10 ek we 11 ek we 12 ek we 13 ek we 14 ek we 15 ek 16

n attended

45 40 35 30 25 20 15 10 5 0

Week

Figure 2

Adherence to Intervention sessions Cohort 2

Attendance to weekly intervention sessions - Cohort 2

number attended of total 57

60 50 40 INFO

30

EXERCISE

20 10 0 1

2

3

4

5

6

7

8

9

Page 6

Week number

10

11

12

13

14

15

Shape Up for Life Program Overview ACTIVITY Overview, introduction 24-hour food recall Introduction to exercise and physical activity diary Making an action plan Feedback and problem solving Making a long term goal Healthy eating, energy balance Aerobic exercise Resistance exercise Glycemic index Food labels Flexibility exercise Muscle relaxation Fat Better breathing Carbohydrate Fibre Salt Positive self talk Shopping tips Healthy recipes Depression management Guided imagery Cooking session Supermarket tour Recap: GI, Carbs, Fat, Salt Food variety Takeaway food Alcohol and Caffeine ‘Supermarket secrets’ documentary Program refresher and review of aims Making informed treatment decisions Family habits, social/cultural pressure Fatigue management Mind management and distraction Our environment Obesity prevention Looking back, looking forward

1 9 9 9 9

2

3

4

5

6

WEEK NUMBER 7 8 9 10

11

12

13

14

15

16 9

9 9

9 9

9 9

9 9

9 9

9 9

9 9

9 9

9 9

9 9

9 9

9 9

9 9

9 9

9 9

9 9

9 9 9 9 9 9 9 9 9 9 9 9 9 9 9 9 9 9

9 9 9 9 9 9 9 9 9 9 9 9 9 9

1.

Mathers C, Vos T, Stevenson C. The Burden of Disease and Injury in Australia. In: (AIHW) AIoHaW, editor.: Australian Government; 1999.

2.

Dixon T, Waters AM. A growing problem: Trends and patterns in overweight and obesity among adults in Australia, 1980 to 2001. 2003(Bulletin No. 8 (AIHW Cat. No. AUS 36)).

3.

Australian Bureau of Statistics. National Health Survey: Summary of Results 2004–05. Commonwealth of Australia; 2006.

4.

Isomaa B, Almgren P, Tuomi T, Forsen B, Lahti K, Nissen M, et al. Cardiovascular morbidity and mortality associated with the metabolic syndrome. Diabetes Care. 2001;4(24):683–9.

5.

Abate N, Chandalia M. Should all patients with metabolic syndrome be treated with statins? Curr Diab Rep. 2006;1(Feb;6):72–6.

6.

Foster GD et al. A randomized trial of a low-carbohydrate diet for obesity. N Engl J Med. 2003 May 22;21(348):2082–90.

7.

Stern L et al. The effects of low-carbohydrate versus conventional weight loss diets in severely obese adults: one-year follow-up of a randomized trial. Ann Intern Med. 2004 May 18;10(140):778–85.

8.

Tuomilehto J, Lindström J, Eriksson JG, Valle TT, Hämäläinen H, Ilanne-Parikka P, et al. Prevention Of Type 2 Diabetes Mellitus By Changes In Lifestyle Among Subjects With Impaired Glucose Tolerance. N Engl J Med. 2001;344(18):1343–50.

9.

Diabetes Prevention Program Research Group. Reduction in the incidence of type 2 diabetes with lifestyle intervention or metformin. N Engl J Med. 2002;346:393–403.

Page 7

References

10. Lorig K, Holman H. Self-Management Education: History, Definition, Outcomes, and Mechanisms. Annals of Behavioural Medicine. 2003 2003;26(1):7. 11. National Health Priority Action Council (NHPAC). National Chronic Disease Strategy. In: Ageing DoHa, editor.: Australian Government; 2006. 12. Bandura A. Self-efficacy. V S Ramachaudran (Ed), Encyclopedia of human behavior New York: Academic Press. 1994;4:71–81. 13. Pettman TL, Misan GMH, Warren K, Buckley JD, Coates AM, Haas M, et al. A community-based trial to improve body shape and metabolic fitness. 12th Annual National Health Outcomes Conference; 2006; Canberra, Australia; 2006. 14. Lorig K et al. Outcome Measures for Health Education and other Health Care Interventions. First ed: Sage Publications, Inc.; 1996. 15. The Children’s Health Development Foundation. The Australian guide to Healthy Eating. In: Ageing DoHa, editor.: Commonwealth of Australia; 1998. 16. Australian Government Department of Health and Ageing. An active way to better health. National Physical Activity Guidelines for Australian adults. In: Ageing DoHa, editor.: Commonwealth of Australia; 1999. 17. Lorig K et al. Chronic Disease Self-Management Program. CA USA: Stanford Patient Education Research Centre, Leland Stanford Junior University; 1999. 18. Turner G, Shepherd J. A method in search of a theory: peer education and health promotion Health Education Research, Oxford University Press. 1999 April 1999;14(2):235–47. 19. Fuller J, Harvey P, Misan G.Is client-centered care planning for chronic disease sustainable? Experience from rural South Australia. Health and Social Care in the Community;12(4):318–326.

Presenter

Page 8

Kate Warren is a registered nurse who has been working in the field of chronic disease selfmanagement (CDSM) for over four years. Previously the Sharing Health Care SA project officer, Kate is currently the Regional Chronic Condition Self-Management (CCSM) training co-ordinator (half time) and travels extensively across rural South Australia training health care workers and health consumers in the Stanford and Flinders models of chronic condition self-management. The other half of Kate’s position is as project officer for the Whyalla lifestyle study, Shape Up for Life.