Health beliefs - what role do they play in outcomes research?

Lay beliefs about health and illness are individual and social, influenced by prevailing social and medical ideologies. Health beliefs clearly influence self-care motivation and have an effect on health-promoting behaviour (e.g. attendance at a screening program, food choices, adherence to prescribed medication). Further, the beliefs and attributions that people hold can directly affect physiological systems (e.g. the immune system). Health beliefs have been shown to influence a variety of patient-reported outcomes, including medication adherence, satisfaction and health-related quality of life. It is widely acknowledged that when the patient's beliefs are acknowledged and incorporated, rather than ignored, optimal biomedical patient-reported outcomes are more likely to be achieved. Several psychological models have been developed to predict health behaviours and may be utilised to identify the beliefs that inform such behaviours. These models consider the social milieu, personality, demographic, political and economic predictors of health beliefs. They demonstrate the impact of beliefs such as the causes of illness, effectiveness of healthcare and acceptability of health services, and how manipulating these can result in actual or intended behaviour change. This workshop will introduce health beliefs and discuss the psychological models that underpin the translation of belief into behaviour. The session is interactive, with participants defining health beliefs and their impact on behaviour. Participants will be invited to critique the models and apply their chosen model to a health indication of their choice.

Older women crafting ethical subjectivities in rural places

Over the last two years my colleagues and I conducted research conversations with older women living in rural Victoria about the meaning of craft in their lives. These conversations are the basis for our speculations on how women constitute ethical subjectivities through specific craft activities and through their engagement with Country Women Association (CWA) craft groups. The CWA is recognised as a ‘community of practice’ with local, regional, state, national and global networks, aiming to improve the lives of rural people. The focus of this paper, however, is on how ethical subjectivities by rural women are fashioned through specific involvements in craft activities and craft groups. I aim to elaborate on how Foucault’s later work on the ‘Care of the Self’ may open possibilities, even if limited, for understanding the complex ways women take up subject positions in interaction with historical, political, economic and social arrangements, and through engagement with specific institutions. For Foucault, ‘care of the self’ is an inherently social practice. Currently, modern power relations incite us to relate to our selves through self confessional and self-disciplining technologies. Could a differently constituted mode of self-care be drawn from the Ancient Greeks to offer us ideas for enacting personal and social transformations today?

Diabetes MILES - Australia (Management and Impact for Long-Term Empowerment and Success) : methods and sample characteristics of a national survey of the psychological aspects of living with type 1 or type 2 diabetes in Australian adults

Background Successful management of diabetes requires attention to the behavioural, psychological and social aspects of this progressive condition. The Diabetes MILES (Management and Impact for Long-term Empowerment and Success) Study is an international collaborative. Diabetes MILES-Australia, the first Diabetes MILES initiative to be undertaken, was a national survey of adults living with type 1 or type 2 diabetes in Australia. The aim of this study was to gather data that will provide insights into how Australians manage their diabetes, the support they receive and the impact of diabetes on their lives, as well as to use the data to validate new diabetes outcome measures.

Methods The survey was designed to include a core set of self-report measures, as well as modules specific to diabetes type or management regimens. Other measures or items were included in only half of the surveys. Cognitive debriefing interviews with 20 participants ensured the survey content was relevant and easily understood. In July 2011, the survey was posted to 15,000 adults (aged 18-70 years) with type 1 or type 2 diabetes selected randomly from the National Diabetes Services Scheme (NDSS) database. An online version of the survey was advertised nationally. A total of 3,338 eligible Australians took part; most (70.4%) completed the postal survey. Respondents of both diabetes types and genders, and of all ages, were adequately represented in both the postal and online survey sub-samples. More people with type 2 diabetes than type 1 diabetes took part in Diabetes MILES-Australia (58.8% versus 41.2%). Most respondents spoke English as their main language, were married/in a de facto relationship, had at least a high school education, were occupied in paid work, had an annual household income > $AUS40,000, and lived in metropolitan areas.

Discussion A potential limitation of the study is the under-representation of respondents from culturally and linguistically diverse backgrounds (including Aboriginal and Torres Strait Islander origin). Diabetes MILES-Australia represents a major achievement in the study of diabetes in Australia, where for the first time, the focus is on psychosocial and behavioural aspects of this condition at a national level.

The role of informal caregivers during cancer patients’ recovery from chemotherapy

Aims:  (i) To investigate the availability, perceived importance and roles of informal caregivers in the recovery of patients treated at day oncology centres and (ii) identify differences between patients with and without informal caregivers in the extent to which they experienced symptoms, and the level of bother symptoms caused.

Method:  Patients from three Australian hospitals (n = 122) were recruited during cycles 1 or 2 of adjuvant chemotherapy. Participants completed a modified version of the Rotterdam Symptom Checklist (RSCL) each day for 5 days after chemotherapy. A telephone interview conducted 10 days post-treatment explored the availability, importance and roles of caregivers. During the interview, participants also completed the modified RSCL in which they were asked about the extent to which they experienced, and were bothered by, each symptom over the prior 5 days combined.

Results:  Overall, 71% of participants had an informal caregiver in the 5 days postchemotherapy, commonly a partner. More women (71%) than men (48%) had a caregiver (p < 0.05). Caregivers were perceived to be highly important; they were more important for women than men (U = 213.50, p < 0.01). The most common assistance caregivers provided was meal preparation and emotional support and companionship. On days 6–10 postchemotherapy, the extent to which overall physical symptoms were experienced was higher for patients with a caregiver than without (U = 987.50, p < 0.05); similarly their symptoms caused more bother (U = 966.00, p < 0.01).

Conclusions:  These findings highlighted the importance of informal caregivers to patients postchemotherapy. It is imperative that patients are informed of the importance of this support so a caregiver can be arranged, if possible. Understanding the needs of patients following chemotherapy would enable health professionals to advise patients, with or without caregivers, how to best prepare for and manage their recovery at home.

The development of the Melbourne low vision ADL index : a measure of vision disability

PURPOSE. To develop a new test of activities of daily living (ADLs) appropriate for the low-vision population: the Melbourne Low-Vision ADL Index (MLVAI).

METHODS. The MLVAI was designed as a desk-based clinical assessment, comprising 18 observed items on complex ADLs in part (a) and 9 questions on broad self-care ADLs in part (b). Each item was rated on a five-level descriptive scale from 0 to 4, based on independence, speed, and accuracy of performance. It was designed to be administered under standardized conditions with regard to the instructions, illumination, and working distances. The validity and reliability of the new MLVAI was determined for 122 subjects who were representative of the general low-vision population, in a cross-sectional study.

RESULTS. Two items were found to be redundant and were eliminated from the test. Thus, the final test comprised 25 items, with 100 being the highest possible score. Cronbach’s α indicated an internal reliability of 0.96, and an intraclass correlation coefficient indicated an overall reliability of 0.95. The SE of measurement was 4.5. According to Spearman’s correlation coefficient, the test–retest reliability was 0.94 (P < 0.001), and the interpractitioner reliability for five different pairs of practitioners was 0.90 or higher (P < 0.001). With regard to validity, there was a moderately high correlation with vision impairment (r = −0.68, P < 0.001). Using Rasch analysis, content validity was also demonstrated by good separation indexes (4.70 and 9.88) and high reliability scores (0.96 and 0.99) for the person and items parameters, respectively. Separate calculation of indexes and reliability scores for parts (a) and (b) indicated high content validity and reliability of each part. However, the separation indexes and reliability scores were higher for part (a) than for part (b). The correlation coefficient for part (a) and part (b) was 0.68.

CONCLUSIONS. The MLVAI is a highly valid and reliable standardized test of ADL performance for the general low-vision population. It may be used to assess patients with low vision and has the potential to be used as a measure of low-vision rehabilitation outcomes.

Relationship between vision impairment and ability to perform activities of daily living

Purpose: To determine the relationship between clinical measures of vision impairment and the ability to perform activities of daily living (ADLs).

Methods: One hundred and twenty subjects with low vision from a variety of causes participated in the study. Vision impairment was assessed under binocular conditions by measuring distance visual acuity, near word acuity, Melbourne Edge Test contrast sensitivity, Pelli–Robson Chart contrast sensitivity and visual fields. The ADL performance was assessed using the Melbourne Low Vision ADL Index (MLVAI), which is in part an observed performance assessment of instrumental ADLs and in part a self-report assessment of basic self-care ADLs.

Results: All vision measures had a high, statistically significant correlation with MLVAI total score. Near word acuity, had the strongest correlation (rs=−0.86, p < 0.001), followed by Melbourne Edge Test contrast sensitivity (rs=0.80, p < 0.001). Visual field had the weakest correlation (rs=0.56, p < 0.001). Together, age, near word acuity, Melbourne Edge Test contrast sensitivity and visual field accounted for 82.2% (adjusted R2, p < 0.001) of the variance in MLVAI total score. All correlations obtained were higher for the observed performance assessment of instrumental ADLs than for the self-report assessment of basic self-care ADLs.

Conclusions: Clinical vision impairment measures are highly correlated with capacity to perform ADLs, as measured by the MLVAI.

Diabetes MILES – The Netherlands: rationale, design and sample characteristics of a national survey examining the psychosocial aspects of living with diabetes in Dutch adults

Background : As the number of people with diabetes is increasing rapidly worldwide, a more thorough understanding of the psychosocial aspects of living with this condition has become an important health care priority. While our knowledge has grown substantially over the past two decades with respect to the physical, emotional and social difficulties that people with diabetes may encounter, many important issues remain to be elucidated. Under the umbrella of the Diabetes MILES (Management and Impact for Long-term Empowerment and Success) Study International Collaborative, Diabetes MILES – The Netherlands aims to examine how Dutch adults with diabetes manage their condition and how it affects their lives. Topics of special interest in Diabetes MILES - The Netherlands include subtypes of depression, Type D personality, mindfulness, sleep and sexual functioning.

Methods/design : Diabetes MILES – The Netherlands was designed as a national online observational study among adults with diabetes. In addition to a main set of self-report measures, the survey consisted of five complementary modules to which participants were allocated randomly. From September to October 2011, a total of 3,960 individuals with diabetes (40% type 1, 53% type 2) completed the battery of questionnaires covering a broad range of topics, including general health, self-management, emotional well-being and contact with health care providers. People with self-reported type 1 diabetes (specifically those on insulin pump therapy) were over-represented, as were those using insulin among respondents with self-reported type 2 diabetes. People from ethnic minorities were under-represented. The sex distribution was fairly equal in the total sample, participants spanned a broad age range (19–90 years), and diabetes duration ranged from recent diagnosis to living with the condition for over fifty years.

Discussion : The Diabetes MILES Study enables detailed investigation of the psychosocial aspects of living with diabetes and an opportunity to put these findings in an international context. With several papers planned resulting from a pooled Australian-Dutch dataset and data collections planned in other countries, the Diabetes MILES Study International Collaborative will contribute substantially to identifying potentially unmet needs of those living with diabetes and to inform clinical research and care across the globe.

Generic and diabetes-specific well-being in the AT.LANTUS follow-on study : further psychometric validation of the W-BQ28 indicates its utility in research and clinical practice in type 2 diabetes in the UK

Aims  To undertake further psychometric validation of the W-BQ28 to determine its suitability for use in adults with Type 2 diabetes in the UK using data from the AT.LANTUS follow-on study.

Methods  A total of 353 people with Type 2 diabetes participated in the AT.LANTUS Follow-on study, completing measures of well-being (W-BQ28), treatment satisfaction (DTSQ) and self-care (SCI-R). Confirmatory factor analyses was used to confirm the W-BQ28 structure and internal consistency reliability was assessed. Additional statistical tests were conducted to explore convergent, divergent and known-groups validity. Minimal important differences were calculated using distribution and anchor-based techniques.

Results  Structure of the W-BQ28 (seven four-item subscales plus 16-item generic and 12-item diabetes-specific scales) was confirmed (comparative fit index = 0.917, root mean square error of approximation (RMSEA) = 0.057). Internal consistency reliability was satisfactory (four-item subscales: alpha = 0.73–0.90; 12/16-item scales: α = 0.84–0.90). Convergent validity was supported by expected moderate to high correlations (rs = 0.35–0.67) between all W-BQ28 subscales (except Energy); divergent validity was supported by expected low to moderate correlations with treatment satisfaction (rs = −0.03–0.52) and self-care (rs = 0.02–0.22). Known-groups validity was supported with statistically significant differences by sex, age and HbA1c for expected subscales. Minimal important differences were established (range 0.14–2.90).

Conclusions  The W-BQ28 is a valid and reliable measure of generic and diabetes-specific well-being in Type 2 diabetes in the UK. Confirmation of the utility of W-BQ28 (including establishment of minimal important differences) means that its use is indicated in research and clinical practice.

Young adults' management of type 1 diabetes during life transitions

Aim. To identify life transitions likely to impact diabetes self-care among young adults with Type 1 diabetes and their coping strategies during transition events.

Background. Relationships among psychosocial stress, adjustment, coping and metabolic control affect clinical outcomes and mental health. Life transitions represent major change and are associated with stress that temporarily affects individuals’ problem-solving, coping abilities and blood glucose levels.

Design. A qualitative interpretive inquiry.

Method. Semi-structured interviews were conducted with 20 young adults with Type 1 diabetes and a constant comparative analysis method. Data and analysis was managed using QSR_ NVIVO 7 software.

Results. Participants identified two significant transition groups: life development associated with adolescence, going through the education system, entering new relationships, motherhood and the workforce and relocating. Diabetes-related transitions included being diagnosed, developing diabetes complications, commencing insulin pump treatment and going on diabetes camps. Participants managed transitions using ‘strategic thinking and planning’ with strategies of ‘self-negotiation to minimise risks’; ‘managing diabetes using previous experiences’; ‘connecting with others with diabetes’; ‘actively seeing information to ‘patch’ knowledge gaps’; and ‘putting diabetes into perspective’.

Conclusions. Several strategies are used to manage diabetes during transitions. Thinking and planning strategically was integral to glycaemic control and managing transitions. The impact of transitions on diabetes needs to be explored in larger and longitudinal studies to identify concrete strategies that assist diabetes care during life transitions.

Relevance to clinical practice. It is important for health professionals to understand the emotional, social and cognitive factors operating during transitions to assist young adults with Type 1 diabetes to achieve good health outcomes by prioritising goals and plan flexible, timely, individualised and collaborative treatment.

Diabetes education : art, science and evidence

Diabetes education is a process, the key to which is establishing a therapeutic relationship with the individual. The overall goal of diabetes education is to enhance the individual's health capability, including their ability to solve problems and apply the learning to self-care. Thus, diabetes education is an interactive process of teaching and learning where information is co-generated. This innovative new book explores the 'how' of diabetes education, rather than the 'what' and the 'why'. This thought stimulating textbook will helping health care practitioners to teach diabetes effectively from diagnosis and ensure people living with diabetes get the individualised support and information. It will enable practitioners and educators to examine and reflect on their practice when managing the diabetic patient. Bringing together all the thinking and experience on the diabetes journey in one text, this book will be essential reading for all practitioners and students in involved in diabetes care

Determinants of health-related quality of life in people with Parkinson’s disease: a path analysis

Purpose:
To identify the demographic factors, impairments and activity limitations that contribute to health-related quality of life (HRQOL) in people with idiopathic Parkinson’s disease (PD).

Method:
Two hundred and ten individuals with idiopathic PD who participated in the baseline assessment of a randomized clinical trial were included. The Parkinson’s Disease Questionnaire-39 summary index was used to quantify HRQOL. In order to provide greater clarity regarding the determinants of HRQOL, path analysis was used to explore the relationships between the various predictors in relation to the functioning and disability framework of the International Classification of Functioning model.

Results:
The two models of HRQOL that were examined in this study had a reasonable fit with the data. Activity limitations were found to be the strongest predictor of HRQOL. Limitations in performing self-care activities contributed the most to HRQOL in Model 1 (β = 0.38; p < 0.05), while limitations in functional mobility had the largest contribution in Model 2 (β = −0.31; p < 0.0005). Self-reported history of falls was also found to have a significant and direct relationship with HRQOL in both models (Model 1 β = −0.11; p < 0.05; Model 2 β = −0.21; p < 0.05).

Conclusions:
Health-related quality of life in PD is associated with self-care limitations, mobility limitations, self-reported history of falls and disease duration. Understanding how these factors are inter-related may assist clinicians focus their assessments and develop strategies that aim to minimize the negative functional and social sequelae of this debilitating disease.

Can social dancing prevent falls in older adults? a protocol of the Dance, Aging, Cognition,Economics (DAnCE) fall prevention randomised controlled trial

Background:  Falls are one of the most common health problems among older people and pose a major economic burden on health care systems. Exercise is an accepted stand-alone fall prevention strategy particularly if it is balance training or regular participation in Tai chi. Dance shares the ‘holistic’ approach of practices such as Tai chi. It is a complex sensorimotor rhythmic activity integrating multiple physical, cognitive and social elements. Small-scale randomised controlled trials have indicated that diverse dance styles can improve measures of balance and mobility in older people, but none of these studies has examined the effect of dance on falls or cognition. This study aims to determine whether participation in social dancing: i) reduces the number of falls; and ii) improves cognitive functions associated with fall risk in older people.

Methods/design: A single-blind, cluster randomised controlled trial of 12 months duration will be conducted. Approximately 450 participants will be recruited from 24 self-care retirement villages that house at least 60 residents each in Sydney, Australia. Village residents without cognitive impairment and obtain medical clearance will be eligible. After comprehensive baseline measurements including physiological and cognitive tests and self-completed questionnaires, villages will be randomised to intervention sites (ballroom or folk dance) or to a wait-listed control using a computer randomisation method that minimises imbalances between villages based on two baseline fall risk measures. Main outcome measures are falls, prospectively measured, and the Trail Making cognitive function test. Cost-effectiveness and cost-utility analyses will be performed.

Discussion: This study offers a novel approach to balance training for older people. As a community-based approach to fall prevention, dance offers older people an opportunity for greater social engagement, thereby making a major contribution to healthy ageing. Providing diversity in exercise programs targeting seniors recognises the heterogeneity of multicultural populations and may further increase the number of taking part in exercise.

Does the shortage of diabetes specialists in regional and rural Australia matter? Results from Diabetes MILES – Australia.

Aim: To investigate differences in access to services and health outcomes between people living with Type 1 (T1DM) and Type 2 (T2DM) diabetes in rural/regional and metropolitan areas.

Methods: Diabetes MILES—Australia was a national postal/online survey of persons registered with the National Diabetes Services Scheme. Selected variables, including utilisation of health care services and self-care indicators, were analysed for 3338 respondents with T1DM (41%) or T2DM (59%).

Results: Respondents from rural/regional (n=1574, 48%) and metropolitan areas were represented equally (n=1700, 52%). After adjusting for diabetes duration, demographic and socioeconomic variables, rural/regional respondents with T1DM (RR 0.90, 95% CI 0.83–0.97) and T2DM (RR 0.69, 95% CI 0.59–0.81) were less likely to report consulting an endocrinologist during the past 12 months. Rural/regional respondents with T1DM were more than twice as likely to have accessed a community/practice nurse for diabetes care (RR 2.22, 95% CI 1.25–3.93) while those with T2DM were more likely to have accessed a diabetes educator (RR 1.21, 95% CI 1.07–1.36) or dietician (RR 1.17, 95% CI 1.07–1.36). For the T1DM and T2DM groups were no differences between rural/regional and metropolitan respondents in self-reported hypoglycaemic events during past week and the majority of self-care indicators.

Conclusions: Despite a lack of access to medical specialists, respondents with T1DM and T2DM living in rural/regional areas did not report worse health or self-care indicators. The results suggest that multidisciplinary primary services in rural areas may be providing additional care for people with diabetes, compensating for poor access to specialists.

Feedback of personal retinal images appears to have a motivational impact in people with non-proliferative diabetic retinopathy and suboptimal HbA1c: findings of a pilot study

AIM:
To conduct a pilot study to explore the potential impact of visual feedback of personal retinal images on diabetes outcomes.

METHODS:
Twenty-five participants with non-proliferative diabetic retinopathy and suboptimal HbA1c (> 53 mmol/mol; > 7%) were randomized to receive visual feedback of their own retinal images or to a control group. At baseline and 3-month follow-up, HbA1c, standard measures of beliefs, diabetes-related distress and self-care activities were assessed.

RESULTS:
In unadjusted models, relative to controls, the intervention group showed significantly greater improvement in HbA1c at 3-month follow-up (–0.6% vs. +0.3%, P < 0.01), as well as enhanced motivation to improve blood glucose management (P < 0.05).

CONCLUSIONS:
This small pilot study provides preliminary evidence that visual feedback of personal retinal images may offer a practical educational strategy for clinicians in eye care services to improve diabetes outcomes in non-target compliant patients. A fully powered randomized controlled trial is required to confirm these findings and determine the optimal use of feedback to produce sustained effects.