Time spent by people managing chronic obstructive pulmonary disease indicates biographical disruption.

Since Bury's 1982 proposal that chronic illness creates biographical disruption for those who are living with it, there has been no effort to quantitatively measure such disruption. "Biographical disruption" refers to the substantial and directive influence that chronic illness can have over the course of a person's life. Qualitative research and time use studies have demonstrated that people with chronic illnesses spend considerable amounts of time managing their health, and that these demands may change over time. This study was designed to measure the time that older people with chronic illnesses spend on selected health practices as one indicator of biographical disruption. We look specifically at the time use of people with chronic obstructive pulmonary disease (COPD). As part of a larger time use survey, a recall questionnaire was mailed to 3,100 members of Lung Foundation Australia in 2011. A total of 681 responses were received (22.0% response rate), 611 of which were from people with COPD. Descriptive analyses were undertaken on the amount of time spent on selected health-related activities including personal care, nonclinical health-related care, and activity relating to health services. Almost all people with COPD report spending some time each day on personal or home-based health-related tasks, with a median time of 15 minutes per day spent on these activities. At the median, people also report spending about 30 minutes per day exercising, 2.2 hours per month (the equivalent of 4.4 minutes per day) on nonclinical health-related activities, and 4.1 hours per month (equivalent to 8.2 minutes per day) on clinical activities. Excluding exercise, the median total time spent on health-related activities was 17.8 hours per month (or 35.6 minutes per day). For people in the top 10% of time use, the total amount of time was more than 64.6 hours per month (or 2.2 hours per day) excluding exercise, and 104 hours per month (or 3.5 hours per day) including exercise. The amount of time spent on health-related activity, such as engaging in personal care tasks, may be regular and predictable. The execution of these tasks generally takes relatively small amounts of time, and might be incorporated into daily life (biography) without causing significant disruption. Other activities may require large blocks of time, and they may be disruptive in a practical way that almost inevitably disrupts biography. The amount of time required does not appear to alter in relation to the time since diagnosis. The scale of time needed to manage one's health could easily be interpreted as disruptive, and for some people, even overwhelming.

Preferences, predictions and patient enablement: a preliminary study.

BACKGROUND: The widely used patient enablement instrument (PEI) is sometimes contrasted against measures of patient satisfaction as being a more objective measure of consultation quality, in that it is less likely to be positively influenced by fulfilling pre-existing expectations for specific consultation outcomes (such as prescriptions or referrals). However the relationship between expectation and enablement is underexplored, as is the relationship between 'expectation' understood as a patient preference for outcome, and patient prediction of outcome. The aims of the study are to 1) assess the feasibility of measuring the relationship between expectation fulfilment and patient enablement, and 2) measure the difference (if any) between expectation understood as preference, and expectation understood as prediction. METHODS: A questionnaire study was carried out on 67 patients attending three General Practices in the Australian Capital Territory. Patient preferences and predictions for a range of possible outcomes were recorded prior to the consultation. PEI and the actual outcomes of the consultation were recorded at the conclusion of the consultation. Data analysis compared expectation fulfilment as concordance between the preferred, predicted, and actual outcomes, with the PEI as a dependant variable. RESULTS: No statistically significant relationship was found between either preference-outcome concordance and PEI, or prediction-outcome concordance. Statistically insignificant trends in both cases ran counter to expectations; i.e. with PEI (weakly) positively correlated with greater discordance. The degree of concordance between preferred outcomes and predicted outcomes was less than the concordance between either preferred outcomes and actual outcomes, or predicted outcomes and actual outcomes. CONCLUSIONS: The relationship between expectation fulfilment and enablement remains uncertain, whether expectation is measured as stated preferences for specific outcomes, or the predictions made regarding receiving such outcomes. However the lack of agreement between these two senses of 'patient expectation' suggests that explicitly demarcating these concepts during study design is strongly advisable.

Time spent on health related activity by older Australians with diabetes.

AIMS: There is little information available about what people do to look after their health, or how long people spend on health activities. This study identifies key health related activities and time taken as part of self management by people with diabetes. Management planning often lacks information that this study provides that would help clinicians and patients to create manageable and do-able plans that patients can follow. METHODS: Data were collected in 2010 using a national survey of people aged 50 years the National Diabetes Services Scheme. Respondents provided recall data on time used for personal health care, non-clinical health activity; and health service interactions. Data were analysed using Stata 12 and SPSS 19. RESULTS: While most people with diabetes spend on average less than 30 minutes a day on health-related activities (excluding exercise), the highest decile of respondents averaged over 100 minutes. Time spent increased with the number of co-existent conditions. Taking medication and sitting in waiting rooms were the most frequently reported activities. The greatest amount of time was spent on daily personal health care activities. CONCLUSION: The time demands of diabetes for older people can be substantial. Better patient engagement in self management might result from a better match in care planning between the illness demands and the patient time availability, with potential to reduce admissions for hospital care.

Coordination of care in Australian mental health policy.

OBJECTIVE: To review Australian mental health initiatives involving coordination of care. METHODS: Commonwealth government websites were systematically searched for mental health policy documents. Database searches were also conducted using the terms 'coordination' or 'integration' and 'mental health' or 'mental illness' and 'Australia'. We assessed the extent to which informational, relational and management continuity have been addressed in three example programs. RESULTS: The lack of definition of coordination at the policy level reduces opportunities for developing actionable and measurable programs. Of the 51 mental health initiatives identified, the three examples studied all demonstrated some use of the dimensions of continuity to facilitate coordination. However, problems with funding, implementation, evaluation and competing agendas between key stakeholders were barriers to improving coordination. CONCLUSIONS: Coordination is possible and can improve both relationships between providers and care provided. However, clear leadership, governance and funding structures are needed to manage the challenges encountered, and evaluation using appropriate outcome measures, structured to assess the elements of continuity, is necessary to detect improvements in coordination.

With good intentions: complexity in unsolicited informal support for Aboriginal and Torres Strait Islander peoples. A qualitative study.

BACKGROUND: Understanding people's social lived experiences of chronic illness is fundamental to improving health service delivery and health outcomes, particularly in relation to self-management activity. In explorations of social lived experiences this paper uncovers the ways in which Aboriginal and Torres Strait Islander people with chronic illness experience informal unsolicited support from peers and family members. METHODS: Nineteen Aboriginal and Torres Islander participants were interviewed in the Serious and Continuing Illness Policy and Practice Study (SCIPPS). Participants were people with Type 2 diabetes (N = 17), chronic obstructive pulmonary disease (N = 3) and/or chronic heart failure (N = 11) and family carers (N = 3). Participants were asked to describe their experience of having or caring for someone with chronic illness. Content and thematic analysis of in-depth semi-structured interviews was undertaken, assisted by QSR Nvivo8 software. RESULTS: Participants reported receiving several forms of unsolicited support, including encouragement, practical suggestions for managing, nagging, growling, and surveillance. Additionally, participants had engaged in 'yarning', creating a 'yarn' space, the function of which was distinguished as another important form of unsolicited support. The implications of recognising these various support forms are discussed in relation to responses to unsolicited support as well as the needs of family carers in providing effective informal support. CONCLUSIONS: Certain locations of responsibility are anxiety producing. Family carers must be supported in appropriate education so that they can provide both solicited and unsolicited support in effective ways. Such educational support would have the added benefit of helping to reduce carer anxieties about caring roles and responsibilities. Mainstream health services would benefit from fostering environments that encourage informal interactions that facilitate learning and support in a relaxed atmosphere.

Chronic disease management items in general practice: a population-based study of variation in claims by claimant characteristics.

OBJECTIVE: To describe how Medical Benefits Schedule (MBS) chronic disease (CD) item claims vary by sociodemographic and health characteristics in people with heart disease, asthma or diabetes. DESIGN, SETTING AND PARTICIPANTS: A cross-sectional analysis of linked unit-level MBS and survey data from the first 102,934 participants enrolled in the 45 and Up Study, a large-scale cohort study in New South Wales, who completed the baseline survey between January 2006 and July 2008. MAIN OUTCOME MEASURE: Claim for any general practitioner CD item within 18 months before enrolment, ascertained from MBS records. RESULTS: The proportion of individuals making claims for MBS CD items was 18.5% for asthma, 22.3% for heart disease, and 44.9% for diabetes. Associations between participant characteristics and a claim for a CD item showed similar patterns across the three diseases. For heart disease and asthma, people most likely to claim a CD item were women, older, of low income and education levels, with multiple chronic conditions, fair or poor self-rated health, obesity and low physical activity levels. The pattern of claims was slightly different for participants with diabetes in that there was no significant association with number of chronic conditions, smoking or physical activity. CONCLUSIONS: Many individuals with self-reported CD do not claim CD items. People with diabetes and individuals with greatest need based on health, socioeconomic and lifestyle risk factors are the most likely to claim CD items.

A local study of costs for private allied health in Australian primary health care: variability and policy implications.

Multidisciplinary approaches to primary health care improve outcomes for individuals living with chronic conditions. However, emerging evidence suggests access to allied health professionals in Australia is problematic. This paper reports findings of a telephone survey of allied health professionals' billing practices in one urban area. The survey was undertaken as a quality improvement project in response to the affordability queries raised by patients and carers in the clinical setting. The aim was to determine financial cost of access to allied health professionals in one urban primary health care setting. Participant practices included: physiotherapy (n=21), podiatry (n=8) and dietitians (n=3). Fees were variable, with cost of the initial (assessment) appointment higher than subsequent (follow-up) appointments in 92% of practices. The average out of pocket expenses for assessment and three follow-up appointments ranged from $258 to $302. When available, the Medicare rebate reduced this to $58-106. Bulk billing was not offered. Variable costs, minimal concessions and absence of bulk billing in this confined geographical area creates a cost barrier to access for patients from lower socioeconomic groups and has implications for access to multidisciplinary care in Australian primary health care.

Australia's primary health care workforce--research informing policy.

In 2008, the Australian Primary Health Care Research Institute (APHCRI) held a Primary Health Care Workforce Roundtable with practising clinicians, policymakers and researchers, which drew on Australian evidence in health care policy, systematic reviews, and expertise and experience of participants. Key recommendations for an adequate, sustainable and effective primary health care workforce that arose from the meeting included: simplifying the Medicare Benefits Schedule, which is unnecessarily complex and inflexible; effectively funding undergraduate and prevocational medical and nursing education and training in primary health care; developing career structure and training pathways for general practitioners and primary health care nurses; developing of functional primary health care teams; and using a blended funding model, comprising fee-for-service as well as capitation for patients with chronic or complex needs. A report from the meeting, detailing these policy options, was submitted to the National Health and Hospitals Reform Commission for inclusion in their deliberations.