Self-Management of Chronic Diseases
The term, chronic diseases, applies to a group of dissimilar diseases like heart diseases, cancer, arthritis, asthma, and many more. They are long standing and persistent as regards development and symptomatology. Although some are communicable in nature, yet the term usually refers to non communicable diseases (Australian Institute of Health and Welfare 2002, p. 436). This is one reason for the confusion surrounding this group of diseases; yet they share common characteristics. They usually start at a younger age and have long duration; they need a long term, systematic approach in treatment that mandates integrating health services’ response (WHO2005). O’Halloran and others (2004) reviewed the literature on the characteristics of chronic diseases and recognised aetiology, onset, pattern, prognosis and sequelae, diagnosis, prevalence, and severity are all included in pointing to a disease as chronic. Chronic diseases are commonly complex and have more than one causative factor, although may be triggered by only one factor. Most authors agree they are of long duration; however there are differences about how long the duration is. Generally, there are three time intervals to recognise a chronic condition, three, six, and 12 months. They inferred confusion about the onset as a characteristic of chronic diseases stems from using terms like insidious and gradual. Recurrence or the presence of remissions and relapses characterise chronic diseases. Diagnosis of chronic diseases may be on clinical backgrounds (like hypertension) or biochemical basis, and they are, generally, incurable (O’Halloran et al 2004).
Burden of chronic diseases
The World Health Organization (WHO 2005) estimated by 2020, chronic diseases, if they keep their current pace, will be the cause of 75% of deaths on a global level. According to Catford (2007), nearly 60% of the global burden of chronic diseases is credited to heart diseases, stroke, type II diabetes, respiratory diseases and arthritis. The impact of chronic diseases is not only health-related in the form of disability, impaired quality of life, and death, but also economic. Economic costs of chronic diseases can be direct like the long standing cost of healthcare services, and cost of illness’s studies, or indirect costs like lost or reduced individuals’ productivity as a result of such diseases (WHO 2005).
In Australia, cancer, cardiovascular disease and neurological disorders constitute more than half the disease and injury burden in adults between 45 and 64 years. Among adults over 75 years, cardiovascular disease and cancer were the commonest chronic disease burden (34% and 19% respectively). In the younger age group (15-44 years), mental disorders had the highest prevalence (36%), while in children (0-14 years), 23% experienced the chronic disease burden of mental disorders, and 18% experienced the burden of chronic respiratory disorders (Beggs et al 2007). Thus, confirming the earlier data suggesting chronic diseases in Australia start at an earlier age (20 years on the average) (National Public Health Partnership, 2001).
The Australian Institute of Health and Welfare (AIHWA) (2006) reported 106,000 newly diagnosed cancer cases, and in 2008 AIHWA reported type II diabetes as a leading cause of death because of its complications affecting 700.000 Australians. According to AIHWA (2001), the single commonest cause of death among Australians is cardiovascular disease (CVD) affecting nearly one every six Australians.
Caughey and colleagues (2008) conducted a systematic review on the prevalence of chronic disease comorbidities among elderly Australians based on NCDS priorities. Results showed 80& of the elderly population suffering from three or more chronic conditions with more than 50% of them having arthritis accompanied by CVD (20%), diabetes (14%), and asthma or mental health problems in further10%.
In response to these challenges, the Australian Health Ministers’ Advisory Council published the National Chronic Disease Strategy in 2005. Thus, the aim of this essay is to analyse the literature and current local and national services to discuss and evaluate the successful or unsuccessful implementation of chronic disease self-management in the lights of the National Chronic Disease Strategy in 2005.
The National Chronic Disease Strategy (NCDS 2005): A briefing
NCDS 2005 is a nationally agreed plan to promote synchronized and integrated actions responding to the increasing impact of chronic diseases on Australians’ health and the increasing burden on Australian health care system. The strategy focused on five health priority areas, which are asthma, cancer, diabetes, cardiovascular diseases (including stroke), and osteoarthritis, osteoporosis, and rheumatoid arthritis. The strategy is designed to address the different phases of illness, which are reducing the risk, early detection of the disease, managing acute conditions, long term care and care of advanced conditions. As regards implementation, the strategy highlighted it is the responsibility of individual local authorities (Dowrick 2007).
The strategy outlined seven key principles to apply in designing an action within the strategy framework. These principles are; to take on a population health attitude and minimize health disparities, to give priority to health promotion and prevention of disease, and to for person centered (tailored) type of care and enhance self management effectiveness. In addition, the strategy outlined provision of optimum care, encourage coordinated and integrated multidisciplinary health care approach. The ultimate objective of a specific plan should be to implement a noteworthy and maintained change, and finally is to observe and monitor progress. To achieve its objectives holding to these principles, NCDS 2005 outlined four action areas; first, is prevention across the disease continuum, second, is early detection and early treatment, third, is prevention and care should be integrated and persistent, finally, is endorsing self management (National Health Priority Action Council, NAHPAC, 2006).
Definition of self management of chronic diseases in the lights of NCDS 2005
Before presenting the self management definition it would seem appropriate to identify what is meant by the word (self). Koch and colleagues (2004) inferred the word (self) in self management should point to the fact that patients living with chronic conditions are self- determinant in many situations and that their expertise should be recognized in this context. They also inferred that terms like adherence to treatment and agreement with health care provider decisions (concordance) should overshadow personalising or tailoring a prevention program and objectify an individual as a (patient). Further, proper recognition of self characteristics of management should provide the potential of developing a personalized self management model. In this context, self management according to NCDS 2005 is the dynamic contribution of individuals suffering a chronic disease in their own (self) health care decisions. Thus, ensuring each individual is the center of its own health care. Extending the definition further, it should include working in partnership with the individual, and recognizing the important role the family and or carers can provide if the targeted individual so wishes (Australian Capital Territory Department of Health 2008).
Importance of self management in chronic disease prevention and control
Bodenheimer and colleagues (2002) suggested that teaching self management skills in primary care is more effective than information teaching programs, in the same setting, in improving the disease prognosis. In addition they suggested, in certain diseases like arthritis and asthma, self management programs improve the disease outcome and reduce health care costs; further, in individuals with complex conditions, these programs, again, improve the disease outcome and reduce health care costs. Bandura (2005) inferred properly designed self management programs fitting community settings can lead to a relatively active life despite the disability and proved to be cost effective compared to biomedical interventions. The Centers of Disease Control and Prevention, CDC, (2008) in a review on the findings the chronic disease self management programs outcomes, suggested a strong beneficial evidence on health, emotional and quality of life outcomes. Further, the report confirmed reduction of health care costs representing a more useful expenditure of health care resources.
Approaches to self management programs
Since the main core of chronic disease self management is optimise individuals’ ability to manage throughout the disease continuum; therefore, patients are the axis of any approach to self management (National Health Priority Action Council, NAHPAC, 2006). Addressing specific patient needs is a basic approach for any self management program. Diabetes induced depression (DM/D) is a perfect example. Piette and colleagues (2004) identified depressed diabetic patients are prone to limited adherence to self care regimens, reduced physical activity, and impaired ability to communicate; thus, have a reduced quality of life. They inferred a DM/D management strategy should include a systematic identification of these patients, intensive effort to coordinate health care services, a better access to cognitive behavioral therapy, and possibly to promote physical activity to improve the depressive symptoms and address the physiologic needs. Another study measured patients’ participation in an evidence-based arthritis self management programs in San Francisco bay area and the participants’ characteristics (Bruce et al 2007). Results showed small group self management programs offered multiple times in different setting yielded a higher participation rate. They also inferred that demographic factors as participants’ characteristics like age, gender, and race influence participation rates. Demographic factors were recognised by Taylor and Burry (2007) to force reshaping of the policy formation process, the evidence-base supporting evidence for a program effectiveness, and the importance of psychological concepts’ approaches (like self efficacy) in improving a community public health. Thus, in their opinion, a constructive self management program should weigh both cognitive (psychological) factors and social environmental factors.
Tools for building up self management are many and include telephone counseling, monitoring and peer support. Whatever tools used, the aim should be to build six basic self management skills, which are, on the patient part, problem solving, and decision making. The provider should demonstrate proper utilisation of resources, build a partnership with the patient, perform action planning, and patient self tailoring (Lorig and Holman 2003).
Specific to Australia, there is little integration and coordination of different chronic disease self management initiatives and there is still a need for training and understanding the systems and infrastructure needed to engage patients, carers, health care providers and organization in an integrated work (Jordan et al 2008).
Common models of chronic disease self management: An introduction
Before discussing the common chronic disease self management models, it is necessary to clarify the difference between a health care intervention and a health care model, the first points to an activity embarked on aiming at prevention, improving or stabilising a medical condition. Examples of interventions are face to face interviewing, telephone coaching, internet individual courses, and written information distribution (Jordan and Osborn 2007). A health care model, on the other hand, is a team-oriented approach of health care practice, each of the many available models has its position along the continuum from non integrative to completely integrative approaches for services transmitted to individuals (Boon et al 2004).
Based on the above discussion, it is clear that chronic disease self management is more like a philosophy than just an intervention, and that one form (model) may not suite all patients or satisfy the needs of every individual.
The Flinders model of chronic disease self management
This model developed by the Flinders Human Behaviour and Health Research Unit of Flinders University during the 1990s and is looked upon by many as a complementary model to the Stanford chronic disease self management course (Lorig et al 1999). The foundation of this model is the person to person assessment and care planning; thus, it is an individual clinician led assessment and planning. Being so, it presents an individual focused process that draws individual’s knowledge attitudes, behaviours, strengths, and barriers to self management. Clinicians to work on this model need a 2-day training program and approval on three case studies submitted (Battersby 2005). In this model, six self management principles are identified, which are to provide knowledge of the condition, put a treatment plan for the individual to follow, the individual should actively take part in decision making supervised by the health care professional. Further, the individual should learn to monitor the condition’s symptoms and signs, and manage the impact on physical, emotional, and social life; finally, the individual should learn to adopt lifestyles that support a healthy life (Battersby et al 2003).
Evaluation of effectiveness of the Flinders chronic disease self management model showed the following advantages and limitations; it is tailored individually to meet the specific individual’s needs; further, it highlight the individuals goals rather than the clinical goals. Since it needs pre training it provides an insight to the difference between chronic illnesses and care models for acute ones, and encourages systems’ change within organizations. Because of the 12 months time format, it allows the use of many tools (interventions) to achieve the desired goals (Francis et al 2007). On the limitations side, the program is time consuming, may be looked upon as a confronting approach that needs matching to where the individual is related to readiness for change. Although training provides clinicians with abilities to assess the individual’s needs; yet, it does not provide skills needed for ongoing self management support (Lawn et al 2007).
Stanford chronic disease self management program (Lorig Course)
This is the original program that uses peers to educate patients; hence inducing a health change. It was developed in Stanford University, USA in the 1990s as a development of the earlier prototype arthritis self management program. It is a 6 weeks group-based educational course for a small group of participants (10 to 15), operated by two leaders, one is a peer leader, and the second is a healthcare leader. During its development, the program passed through a strict evaluation process resulting in a very well organised and a structured content. It takes three day-training course for leaders to be able to deliver the course (Lorig et al 2001, a).
Evaluation of Lorig Course showed the following advantages; the main focus of the program is goal setting and developing problem solving skills. In addition, the group environment reduces individuals’ perceived sense of isolation and promotes self efficacy, and promotes individuals’ conferring through peer sharing and learning (Francis et al, 2007). This explains why the Australian Department of Health and Ageing has recommended Lorig model as a central model to develop chronic disease self management programs (National Council on Aging, n.d). However, the disadvantages of group-based self management programs include unsuitability to every individual included and further, participant’s response may differ. In addition, the group-based education does not allow enough capacity to address individual barriers and difficulties. The program being well-structured, and 6 weeks time limited reduces flexibility needed to address learning needs, styles, and speeds (Stone and Packer 2010).
Common models of chronic disease self management: A discussion
The volume of literature published in Australia and other developed countries about chronic disease self management support points to a real change in health care philosophy from being reactive responding to acute care problems to one that is practical supporting management of chronic diseases (Zwar et al 2006). The Australian Department of Health launched the Sharing Health Care Initiative in 1999, and funded 12 chronic disease self management demonstration projects addressing a variety of chronic conditions, these projects included Stanford model (Lorig et al 2001, b), and Flinders model (Battersby 2005). Both models were successful; however, in a systematic review of the literature, Zwar et al (2006) identified using motivational approaches and directing attention to specific behaviours to modify produced better outcomes than the self management model used. They inferred this represents a challenge and an opportunity; the challenging point is developing self efficacy is specific to a certain behavior and is not general to all behaviours, which mandates proper training of the team performing the program. On the other hand, self efficacy and behavioural skills can be developed in group sessions with peers and coaches provided they get adequate training.
Warsi et al (2004) conducted a systematic review of the literature (71 studies) across multiple chronic diseases (diabetes, asthma, and arthritis) to evaluate the efficacy of chronic disease self management programs. Diabetic patients showed decreased levels of haemoglobin A1c, and improvement of systolic blood pressure in response to self management programs, asthma patients suffered fewer attacks. For arthritis patients, self management education programs were not related to statistically significant changes. Critique of methods in the literature showed publication bias possibly because of small sample size. They inferred chronic disease self management programs resulted in small to moderate effects on patient outcomes; however they suggested, enlightened by publication bias, adherence to standard methods should clarify better whether these programs are worthy.
Chodosh et al (2005) identified conflicting effectiveness results of different self management programs besides the lack of agreement on basic components of an ideal program. Therefore, they conducted a meta-analysis on 53 studies targeting diabetic patients (26 studies), osteoarthritis (14), and hypertension (13) aiming to assess the effectiveness and basic components of self management programs for these chronic diseases. Chodosh et al (2005) inferred self management programs may produce clinically significant outcomes for diabetes and hypertension; however for osteoarthritis, these programs did not result in beneficial clinical effects especially as regards pain and function. The authors identified variability of studies’ qualities, and, again, publication bias.
Zwar et al (2006) reviewed 11 systematic review studies (6 for diabetes, 2 in asthma, and 1 for each of chronic obstructive pulmonary disease, hypertension, and arthritis). Only two studies (for diabetes) showed improved clinical outcomes. They attributed these poor results to lack of control at base line and loss of patients at follow up among other factors.
Causes of variability of results and publication bias
They can be summarized as follows:
- Lack of awareness of co-morbidities (Jowsey et al, 2009).
- Ecological variability of patients’ environment (Fisher et al, 2005, and Stone and Packer, 2010).
- Demographical factors including age gender and race (Sawyer and Aroni, 2005, and Notle et al, 2007).
Different chronic disease self management programs’ results were reported in different countries not only because of the previously mentioned factors. Zwar et al (2006) explained that self management programs represent one of six elements of the chronic care model, which works in a triangular framework of community, health care system, and the provider organization. Thus, implantation, results and hence, evaluation is influenced by external factors of system and organization that differ in various countries.
In Australia, self management support is a key element of chronic care model with health literacy being an important corner stone. A major limitation is the unequal or uncoordinated engagement of carers, clinicians, organisations and patients; therefore, prioritization of activities and collaborative efforts are the way out (Glasgow et al, 2008).
Nursing approach for chronic disease self management
Lindner et al (2003) focused on the role of nurses as case managers and the major health professional member in the integrated chronic disease coaching programs. They reported significant changes in cardiovascular diseases’ (CVD) risk factors (smoking, nutrition and overweight) following nurse-led case management programs. Smeulders et al (2007) inferred a team of a nurse specialist, and a patient (as a peer) is realistic to individuals with CVD subjected to self management program. Further, they reported initial evidence that such a team may improve self efficacy, quality of life, and symptom of anxiety. Harris et al (2008) suggested expanding the role of practice nurses and development of new models of integrated primary health care should produce favourable impact on self management education programs.
Going back to the National Chronic Disease Strategy (NCDS 2005), the best model is the one that satisfies the individuals’ needs for self management, which is clearly different among different individuals and for the same individual during different times. Therefore an ideal program should allow a range of options to promote benefit from at least one means of self management program at a given point of time. It is also important that a program endorses integration of all stake holders, patients, health care providers, systems, and organisations, with the understanding that no single identity can provide all options. Finally, in the same way, a program should aim at improving individuals’ skills; health care providers’ skills in self management support strategies should also be improved.
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