Small-scale rural pilot programs in chronic illness management - what next?

In recent years, rural SA has been the recipient of significant funding to support a range of new primary health care initiatives. Much of this funding, additional to normal recurrent budgets in our health system, has facilitated effective change and development through demonstration and research projects across the state. The resultant work involves programs such as: ? coordinated care trials (COAG) ? more allied health services (MAHS) ? Commonwealth regional health service initiatives (CRHS) ? quality use of medicines (QUM) ? community packages for aged care services ? Indigenous chronic disease self-management pilot programs (CDSM) ? chronic disease self-management (CDSM) programs - Sharing Health Care SA ? chronic disease self-management (CDSM) programs in Indigenous communities. In addition to the resources listed above, funding was also provided by the Commonwealth to establish the South Australian Centre for Rural and Remote Health (SACRRH) and develop the University Department of Rural Health in Whyalla. While this new funding has led to substantial developmental work in chronic illness management in particular, one needs to ask whether the time might not be right now for these hitherto small-scale change initiatives to be transformed into ongoing mainstream programs, informed and guided by research outcomes to date. Is it time to move beyond tentative chronic illness programs and into mainstream reform? We have shown that there is much to be gained, both for patients and for the system, from improved coordination of primary care services and initiatives such as self-management programs for patients with chronic conditions. Better management leads to improved patient health outcomes and can reduce demand for unplanned hospital and emergency services. Many admissions to rural hospitals requiring expensive services, in terms of infrastructure and staffing, could be either prevented, or patients could be managed more effectively in the community as part of a wider primary health care program.

Health systems change in 2010

Whilst health science, epidemiology and public health developments have forged enormous progress in understanding, prevention and cure in the health care area we still appear to lack the motivation to tackle the fundamental antecedents of many of our emerging population-based community health problems; the prevention of chronic illness being a prime example.

In spite of much progress in the area of health science, the social, economic and evolutionary forces that cast our physical being in the world still remain poorly understood or accepted in the health care arena. However, if our health care systems are to be manageable and sustainable in the future, these wider antecedents of our health status and wellbeing must be factored more fundamentally in to our management models with more effort being put into preventing lifestyle related chronic illnesses than is currently the case.

As in the past where public health infrastructure innovations such as running water and efficient waste disposal systems served to add greatly to the wellbeing of individuals and communities, we now need to make similar efforts to control preventable illnesses such as metabolic syndrome, type 2 diabetes and lifestyle related cardio-vascular disease at their source rather than waiting until the manifestation of these conditions require major medical and chemical intervention and management before we act. Our young people are at risk of early onset chronic conditions as a result of their emerging sedentary lifestyles, un-healthy dietary habits and health related behaviours, yet we continue to concentrate our health management effort on managing those with existing chronic conditions while leaving younger generations with lifestyle practices and behaviours that pre-dispose individuals to developing chronic illness earlier and earlier in their lives.

It is time we took notice of these emerging trends and began expending more effort to prevent what are essentially lifestyle related illnesses that can be eliminated before they become endemic. By concentrating more upon the social and environmental factors affecting our illness profiles as well as upon dealing more effectively with those who are already suffering from chronic illness we will reduce the need for major end-stage interventions and alleviate the impact and cost of early onset chronic disease. To achieve this new population health vision in Australia at least, we will not only need to utilize the new government funding structures more effectively; those structures that support coordination and more effective management of care, but also take a much broader, environmental and social view of cause and effect in relation to the health of populations.

Translating chronic condition self-management programmes (CCSM) into lifestyle management programmes for young people

The techniques applied in chronic condition self-management programmes (CCSM) to support patients with chronic conditions are basic counselling and communication strategies that would benefit people at all stages of life and wellness. The question being explored here is why, as a society, we wait until people develop essentially preventable chronic conditions before helping them to develop the life skills they need to manage their lives and their human interactions better rather than working to avoid or prevent many chronic conditions that develop as a result of people lacking such skills? If we were to teach coping and managing skills to everyone in a supportive and structured way, using the peer-led teaching and learning strategies and basic counselling and education processes that have been shown to be successful for other older groups with chronic illness, the overall population impact would be more significant. Therefore why wait until people have chronic conditions before empowering them with basic life management techniques? Do people need to be sick before they can be motivated to live more effective lives? Is sickness the main stimulus for triggering health-related behaviour change or can other factors in people's lives serve to inform and motivate lifestyle change.

Health-inclusive higher education : listening to students with disabilities or chronic illnesses

This paper reports on a small-scale project undertaken with tertiary students who identified as having an impairment either at enrolment or by registering with the university's Disability Support Unit (DSU). The aim of the study was to explore with these students ways in which the university was currently meeting their academic support needs and the ways in which these needs might be better met. Consistent with the definition of disability within the Australian Disability Discrimination Act, it became apparent that a significant number of students who identified with that definition, or sought help from disability services, also presented with needs arising from chronic illness. The majority of participants cited an emotional or psychological illness, rather than a physical, intellectual or sensory one, as a possible precursor to difficulties in engagement with the university. We conclude by considering whether commonly used institutional categories are apposite to an understanding of the ways in which students perceive themselves and, importantly, their engagement with the university and success within it.

Characterising the extent of misreporting of high blood pressure, high cholesterol, and diabetes using the Australian Health Survey

BACKGROUND: Measuring and monitoring the true prevalence of risk factors for chronic conditions is essential for evidence-based policy and health service planning. Understanding the prevalence of risk factors for cardiovascular disease (CVD) in Australia relies heavily on self-report measures from surveys, such as the triennial National Health Survey. However, international evidence suggests that self-reported data may substantially underestimate actual risk factor prevalence. This study sought to characterise the extent of misreporting in a large, nationally-representative health survey that included objective measures of clinical risk factors for CVD.

METHODS: This study employed a cross-sectional analysis of 7269 adults aged 18 years and over who provided fasting blood samples as part of the 2011-12 Australian Health Survey. Self-reported prevalence of high blood pressure, high cholesterol and diabetes was compared to measured prevalence, and univariate and multivariate logistic regression analyses identified socio-demographic characteristics associated with underreporting for each risk factor.

RESULTS: Approximately 16 % of the total sample underreported high blood pressure (measured to be at high risk but didn't report a diagnosis), 33 % underreported high cholesterol, and 1.3 % underreported diabetes. Among those measured to be at high risk, 68 % did not report a diagnosis for high blood pressure, nor did 89 % of people with high cholesterol and 29 % of people with high fasting plasma glucose. Younger age was associated with underreporting high blood pressure and high cholesterol, while lower area-level disadvantage and higher income were associated with underreporting diabetes.

CONCLUSIONS: Underreporting has important implications for CVD risk factor surveillance, policy planning and decisions, and clinical best-practice guidelines. This analysis highlights concerns about the reach of primary prevention efforts in certain groups and implications for patients who may be unaware of their disease risk status.

Construct validity of the Dutch version of the 12-item Partners in Health scale: measuring patient self-management behaviour and knowledge in patients with Chronic Obstructive Pulmonary Disease

Objective The 12-item Partners in Health scale (PIH) was developed in Australia to measure self-management behaviour and knowledge in patients with chronic diseases, and has undergone several changes. Our aim was to assess the construct validity and reliability of the latest PIH version in Dutch COPD patients.

Methods The 12 items of the PIH, scored on a self-rated 9-point Likert scale, are used to calculate total and subscale scores (knowledge; coping; recognition and management of symptoms; and adherence to treatment). We used forward-backward translation of the latest version of the Australian PIH to define a Dutch PIH (PIH(Du)). Mokken Scale Analysis and common Factor Analysis were performed on data from a Dutch COPD sample to investigate the psychometric properties of the Dutch PIH; and to determine whether the four-subscale solution previously found for the original Australian PIH could be replicated for the Dutch PIH.

Results Two subscales were found for the Dutch PIH data (n = 118); 1) knowledge and coping; 2) recognition and management of symptoms, adherence to treatment. The correlation between the two Dutch subscales was 0.43. The lower-bound of the reliability of the total scale equalled 0.84. Factor analysis indicated that the first two factors explained a larger percentage of common variance (39.4% and 19.9%) than could be expected when using random data (17.5% and 15.1%).

Conclusion We recommend using two PIH subscale scores when assessing self-management in Dutch COPD patients. Our results did not support the four-subscale structure as previously reported for the original Australian PIH.

Children with Special Health Care Needs: Comparison of the Effects of Home Care Setting, Prescribed Pediatric Extended Care Setting, and Long-Term Care Setting on Child and Family Health Outcomes and Health Care Service Use

Technological advances during the past 30 years have dramatically improved survival rates for children with life-threatening conditions (preterm births, congenital anomalies, disease, or injury) resulting in children with special health care needs (CSHCN), children who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who require health and related services beyond that required by children generally. There are approximately 10.2 million of these children in the United States or one in five households with a child with special health care needs. Care for these children is limited to home care, medical day care (Prescribed Pediatric Extended Care; P-PEC) or a long term care (LTC) facility. There is very limited research examining health outcomes of CSHCN and their families. The purpose of this research was to compare the effects of home care settings, P-PEC settings, and LTC settings on child health and functioning, family health and function, and health care service use of families with CSHCN. Eighty four CSHCN ages 2 to 21 years having a medically fragile or complex medical condition that required continual monitoring were enrolled with their parents/guardians. Interviews were conducted monthly for five months using the PedsQL TM Generic Core Module for child health and functioning, PedsQL TM Family Impact Module for family health and functioning, and Access to Care from the NS-CSHCN survey for health care services. Descriptive statistics, chi square, and ANCOVA were conducted to determine differences across care settings. Children in the P-PEC settings had a highest health care quality of life (HRQL) overall including physical and psychosocial functioning. Parents/guardians with CSHCN in LTC had the highest HRQL including having time and energy for a social life and employment. Parents/guardians with CSHCN in home care settings had the poorest HRQL including physical and psychosocial functioning with cognitive difficulties, difficulties with worry, communication, and daily activities. They had the fewest hours of employment and the most hours providing direct care for their children. Overall health care service use was the same across the care settings.

Public health implications of dietary fiber intake to reduce the cost of chronic diseases

Objective: To assess the epidemiological evidence on dietary fiber intake and chronic diseases and make public health recommendations for the population in Romania based on their consumption. Populations that consume more dietary fiber from cereals, fruits and vegetables have less chronic disease. Dietary Reference Intakes recommend consumption of 14 g dietary fiber per 1,000 kcal, or 25 g for adult women and 38 g for adult men, based on epidemiologic studies showing protection against cardiovascular disease, stroke, hypertension, diabetes, obesity, metabolic syndrome, gastrointestinal disorders, colorectal -, breast -, gastric -, endometrial -, ovarian - and prostate cancer. Furthermore, increased consumption of dietary fiber improves serum lipid concentrations, lowers blood pressure, blood glucose leads to low glycemic index, aids in weight loss, improve immune function, reduce inflammatory marker levels, reduce indicators of inflammation. Dietary fibers contain an unique blend of bioactive components including resistant starches, vitamins, minerals, phytochemicals and antioxidants. Dietary fiber components have important physiological effects on glucose, lipid, protein metabolism and mineral bioavailability needed to prevent chronic diseases. Materials and methods: Data regarding diet was collected based on questionnaires. We used mathematical formulas to calculate the mean dietary fiber intake of Romanian adult population and compared the results with international public health recommendations. Results: Based on the intakes of vegetables, fruits and whole cereals we calculated the Mean Dietary Fiber Intake/day/person (MDFI). Our research shows that the national average MDFI was 9.8 g fiber/day/person, meaning 38% of Dietary Requirements, and the rest of 62% representing a “fiber gap” that we have to take into account. This deficiency predisposes to chronic diseases. Conclusions and recommendations:The poor control of relationship between dietary fiber intake and chronic diseases is a major issue that can result in adverse clinical and economic outcomes. The population in Romania is at risk to develop such diseases due to the deficient fiber consumption. A model of chronic diseases costs is needed to aid attempts to reduce them while permitting optimal management of the chronic diseases. This paper presents a discussion of the burden of chronical disease and its socio-economic implications and proposes a model to predict the costs reduction by adequate intake of dietary fiber.

Quality of life and chronic disease in patients receiving primary health care

Problem Statement: Chronic disease entails physical, psychological and social issues with a decrease in the quality of life. The assessment of QoL has been applied as indicator in patients with chronic diseases. Research Questions: What is the quality of life in patients with chronic disease? What are the socio-demographic variables that influence the quality of life in patients? Purpose: To assess the quality of life in patients suffering from chronic disease and identify socio-demographic variables which influence the quality of life of patients suffering from chronic disease. Research Methods: We conducted a cross-sectional analytical study using a sample composed of 228 users (134 females) from a Family Health Unit in the municipality of Viseu. Data collection was made by means of a questionnaire, consisting of sociodemographic variables, the SF-12 scale and the existence of chronic disease was assessed through the questions – “Do you currently suffer from any chronic disease?”; “If so, which one(s)?”. Findings: The most common chronic diseases were hypertension (59.9%). Female patients with a chronic disease reported worse physical functioning, role-physical and role-emotional; increased bodily pain and better quality of life regarding general health. Male patients showed worse role-physical, increased bodily pain and vitality. Sociodemographic variables which were associated with quality of life were area of residence, academic qualifications and work situation. Conclusion: Chronic disease affects quality of life negatively. Quality of life in both patients groups was associated with socio-demographic variables. Health-related quality of life is an essential issue and should be considered as a priority in health policies.

Comparing children's self-report instruments for health-related quality of life using the International Classification of Functioning, Disability and Health for Children and Youth (ICF-CY)

Children with chronic conditions often experience a long treatment which can be complex and negatively impacts the child's well-being. In planning treatment and interventions for children with chronic conditions, it is important to measure health-related quality of life (HrQoL). HrQoL instruments are considered to be a patient-reported outcome measure (PROM) and should be used in routine practice. Purpose: The aim of this study was to compare the content dimensions of HrQoL instruments for children's self-reports using the framework of ICF-CY. Method: The sample consist of six instruments for health-related quality of life for children 5 to 18 years of age, which was used in the Swedish national quality registries for children and adolescents with chronic conditions. The following instruments were included: CHQ-CF, DCGM-37, EQ-5D-Y, KIDSCREEN-52, Kid-KINDL and PedsQL 4.0. The framework of the ICF-CY was used as the basis for the comparison. Results: There were 290 meaningful concepts identified and linked to 88 categories in the classification ICF-CY with 29 categories of the component body functions, 48 categories of the component activities and participation and 11 categories of the component environmental factors. No concept were linked to the component body structures. The comparison revealed that the items in the HrQoL instruments corresponded primarily with the domains of activities and less with environmental factors. Conclusions: In conclusion, the results confirm that ICF-CY provide a good framework for content comparisons that evaluate similarities and differences to ICF-CY categories. The results of this study revealed the need for greater consensus of content across different HrQoL instruments. To obtain a detailed description of children's HrQoL, DCGM-37 and KIDSCREEN-52 may be appropriate instruments to use that can increase the understanding of young patients' needs.

The Influence of type D personality on the onset and maintenance of chronic illness

The thesis found that Type D personality is a risk factor for onset and protracted morbidity of a number of high-prevalence, high-impact chronic conditions within the Australian population. The findings have potential implications for Australian health determinate models, healthcare policy, and the allocation of clinical and research healthcare resources.

Optimising health literacy and access of service provision to community dwelling older people with diabetes receiving home nursing support

Background. Health literacy is the ability to access, understand, and use information and services for good health. Among people with chronic conditions, health literacy requirements for effective self-management are high. The Optimising Health Literacy and Access (Ophelia) study engaged diverse organisations in the codesign of interventions involving the Health Literacy Questionnaire (HLQ) needs assessment, followed by development and evaluation of interventions addressing identified needs. This study reports the process and outcomes of one of the nine organisations, the Royal District Nursing Service (RDNS).

Methods. Participants were home nursing clients with diabetes. The intervention included tailored diabetes self-management education according to preferred learning style, a standardised diabetes education tool, resources, and teach-back method.

Results. Needs analysis of 113 quota-sampled clients showed difficulties managing health and finding and appraising health information. The service-wide diabetes education intervention was applied to 24 clients. The intervention was well received by clients and nurses. Positive impacts on clients' diabetes knowledge and behaviour were seen and nurses reported clear benefits to their practice.

Conclusion. A structured method that supports healthcare services to codesign interventions that respond to the health literacy needs of their clients can lead to evidence-informed, sustainable practice changes that support clients to better understand effective diabetes self-management.