Palliative and end-of-life care for patients with diabetes

Diabetes complications are common and can contribute to unpleasant symptoms, depression and reduced quality of life. A palliative approach to diabetes care in patients with complications, including modified metabolic targets, can reduce symptoms and hospital admissions and improve quality of life and care transitions. GPs have a key role in co-ordinating palliative and end-of-life care in these patients.

Costs and advance directives at the end of life: a case of the ‘Coaching Older Adults and Carers to have their preferences Heard (COACH)’ trial

BACKGROUND: Total costs associated with care for older people nearing the end of life and the cost variations related with end of life care decisions are not well documented in the literature. Healthcare utilisation and associated health care costs for a group of older Australians who entered Transition Care following an acute hospital admission were calculated. Costs were differentiated according to a number of health care decisions and outcomes including advance directives (ADs).

METHODS: Study participants were drawn from the Coaching Older Adults and Carers to have their preferences Heard (COACH) trial funded by the Australian National Health and Medical Research Council. Data collected included total health care costs, the type of (and when) ADs were completed and the place of death. Two-step endogenous treatment-regression models were employed to test the relationship between costs and a number of variables including completion of ADs.

RESULTS: The trial recruited 230 older adults with mean age 84 years. At the end of the trial, 53 had died and 80 had completed ADs. Total healthcare costs were higher for younger participants and those who had died. No statistically significant association was found between costs and completion of ADs.

CONCLUSION: For our frail study population, the completion of ADs did not have an effect on health care utilisation and costs. Further research is needed to substantiate these findings in larger and more diverse clinical cohorts of older people.

Multicenter randomized controlled trial of a home walking intervention after outpatient cardiac rehabilitation on health-related quality of life in women

BACKGROUND: Poor health-related quality of life (HRQL) has been shown to be predictive of adverse outcomes in cardiac patients. As women with coronary heart disease have been shown to have lower HRQL than men with coronary heart disease, women are at greater risk of a poor clinical outcome. This study tested the effect of a 12-week home walking intervention after completion of outpatient cardiac rehabilitation (OCR) on HRQL and maintenance of physical activity among women. DESIGN: Multicenter two-group randomized trial. METHODS: After completion of OCR, participants were randomly allocated to the intervention or usual care groups. The outcomes were HRQL (assessed using the MacNew Heart Disease HRQL instrument) and self-reported physical activity (assessed using the Stages of Change model of exercise behavior) at 3, 6, and 12 months after OCR. RESULTS: Seventy-two women were randomized to the intervention and 81 to usual care. Attrition was greater in the treatment group (13 vs. 1%). HRQL scores increased relative to the base level in both arms and were significantly higher in the intervention group at 6 months, but not at 3 or 12 months. Maintenance of physical activity declined over time in both groups, however, this decline was significantly reduced among women in the intervention group. CONCLUSION: HRQL improved in both groups, but seemed to increase earlier among women in the intervention group. As maintenance of physical activity was higher among women in the intervention group, this minimal intervention could be used to facilitate women's progression from supervised to independent exercise.

‘It should be a big responsibility’: Separated low-income mothers’ evaluation of child support arrangements and the conduct of fathers

The Australian Child Support Scheme was established as a means of ensuring adequate financial support for children of separated parents. However, within the financial transfer of child support exist notions of ‘trust’ and ‘fairness’ based on parents navigating their changed relationship post-separation. Previous research has explored the assessment and outcomes of child support for both payee and payer parents, however little attention has been given to how women evaluate the assessment and outcomes of child support. As such, this research aimed to explore payee mothers’ evaluation of their child support experiences based on the value of their child support assessment and the extent to which these payments were received. Following the methods of constructivist grounded theory, in-depth interviews were conducted with 20 low-income single mothers. Analysis revealed that payee mothers evaluated child support based on the moral assumptions and the rationalities they perceived were underlying payer fathers’ child support compliance. While payee mothers desired arrangements that reflected joint parental financial responsibility, in reality many experienced problematic child support payments, which may ultimately undermine payee parents’ confidence in the Child Support Scheme.

Health-related quality of life in people with Parkinson’s disease receiving comprehensive care

Objectives: The aim of the present study was to quantify the baseline variation in health-related quality of life (HRQOL) between individuals with Parkinson’s disease (PD) referred to a comprehensive care program and those attending standard neurological services.

Methods: Participants included individuals with PD receiving conventional care from neurologists in private practice and individuals referred to a comprehensive inter-professional team hospital out-patient service. The Parkinson’s Disease Questionnaire-39 (PDQ-39) and the EuroQoL (EQ-5D-3L) were used to quantify HRQOL.

Results: Participants referred to an inter-professional service were more likely to have poorer indices on PD-specific measures but not for generic HRQOL compared with individuals receiving standard neurological services. After adjusting for age, gender, disease severity and duration, people referred to a comprehensive care program were more likely to have a higher score for the PDQ-39 summary index (PDQ-39 SI; mean ± s.d. 27.2 ± 11.0; 95% confidence interval (CI) 25.5, 28.9) compared with individuals receiving standard neurological services (PDQ-39 SI mean 0.2 ± 12.8; 95% CI 18.0, 22.4).

Conclusions: Compared with those attending standard neurological out-patient clinics, individuals referred to an inter-professional PD program are more likely to have advanced disease and poorer HRQOL. This observation has implications for the way in which people with PD are recruited for future clinical trials, because uneven recruitment from different sources may be a potential source of bias.
What is known about the topic? Given that PD is associated with a complex array of motor and non-motor symptoms, an inter-professional team approach to service provision is argued to be optimal for individuals living with this debilitating condition.
What does this paper add? This paper has shown that individuals referred to an inter-professional service are more likely to have advanced disease and complex care needs. Compared with those referred to neurologist private clinics, those referred to an inter-professional clinic had less functional independence and lower PD-specific HRQOL when first assessed, even after controlling for disease severity.
What are the implications for practitioners? When recruiting for future trials to examine the efficacy of multidisciplinary care programs in people with PD, it is important to take into account whether these individuals have been referred to an inter-professional service. There may be a potential source of bias if participants were recruited predominantly from such services.

The association between self-reported diet quality and health-related quality of life in rural and urban Australian adolescents

OBJECTIVE: This study examines the relationship between diet quality and health-related quality of life (HRQoL) in rural and urban Australian adolescents, and gender differences.

DESIGN: Cross-sectional.

SETTING: Secondary schools.

PARTICIPANTS: 722 rural and 422 urban students from 19 secondary schools.

MAIN OUTCOME MEASURES: Self-report dietary-related behaviours, demographic information, HRQoL (AQoL-6D) were collected. Healthy and unhealthy diet quality scores were calculated; multiple linear regression investigated associations between diet quality and HRQoL.

RESULTS: Compared to urban students, rural students had higher HRQoL, higher healthy diet score, lower unhealthy diet score, consumed less soft drink and less frequently, less takeaway and a higher proportion consumed breakfast (P < 0.05). Overall, males had higher unhealthy diet score, poorer dietary behaviours but a higher HRQoL score compared to females (P < 0.05). In all students, final regression models indicated: a unit increase in healthy diet score was associated with an increase in HRQoL (unstandardised coefficient(B)±standard error(SE); B = 0.02 ± 0.01(SE); P < 0.02); and a unit increase in unhealthy diet scores was associated with a decrease in HRQoL (-0.01 ± 0.00; P < 0.05). In rural students alone, a unit increase in unhealthy diet score was associated with a decrease in HRQoL (B = -0.01 ± 0.00; P = 0.002), and in urban students a unit increase in healthy diet score was associated with an increase in HRQoL (B = 0.02 ± 0.00; P < 0.001).

CONCLUSIONS: Cross-sectional associations between diet quality and HRQoL were observed. Dietary modification may offer a target to improve HRQoL and general well-being; and consequently the prevention and treatment of adolescent health problems. Such interventions should consider gender and locality.

Working an identity, buying a life: the remains of Disney way of life among ICP alumni

O Disney International College Program (ICP) é um programa de estágio patrocinado pela Walt Disney Company, destinado a estudantes universitários estrangeiros. Uma vez aceitos no programa, estes jovens viajam para os Estados Unidos durante as férias de verão para trabalhar por três meses no Walt Disney World Resort na Flórida. O ICP tornou-se um programa popular dentre os estudantes universitários brasileiros. Todos os anos, aproximadamente trinta mil jovens candidatam-se para o programa. Contudo, apenas cerca de oitocentos conseguem ser aprovados. Durante o programa esses jovens desenvolvem uma “identidade Disney” que passará a fazer parte do self deles. O objetivo deste trabalho é explorar o papel ICP na vida dos seus participantes, assim como desvendar seus efeitos na construção do self destes jovens. O presente estudo também procurou avaliar como os participantes conseguem sustentar sua “identidade Disney”, mesmo após deixarem o programa. Para tanto, foi desenvolvido um estudo de caso qualitativo, no qual o caso analisado foi a identidade de participantes do ICP. Após uma breve análise da literatura sobre identidade, consideramos o self como a capacidade do individuo em manter viva uma narrativa particular. Assim, nossos dados foram coletados e analisados por meio do método de análise narrativo. Através deste estudo, descobrimos que a Walt Disney Company realiza um trabalho eficiente em convencer os participantes do ICP que a sua missão e seus valores são muito importantes. Com isso, estes jovens passam a louvar a marca Disney. Também foi observada a existência de uma comunidade de Disney Alumni (pessoas que participaram do ICP) unida por princípios, ideias e consumo.

Fertility and the value of Life

The value of life methodology has been recently applied to a wide range of contexts as a means to evaluate welfare gains attributable to mortality reductions and health improvements. Yet, it suffers from an important methodological drawback: it does not incorporate into the analysis child mortality, individuals’ decisions regarding fertility, and their altruism towards offspring. Two interrelated dimensions of fertility choice are potentially essential in evaluating life expectancy and health related gains. First, child mortality rates can be very important in determining welfare in a context where individuals choose the number of children they have. Second, if altruism motivates fertility, life expectancy gains at any point in life have a twofold effect: they directly increase utility via increased survival probabilities, and they increase utility via increased welfare of the offspring. We develop a manageable way to deal with value of life valuations when fertility choices are endogenous and individuals are altruistic towards their offspring. We use the methodology developed in the paper to value the reductions in mortality rates experienced by the US between 1965 and 1995. The calculations show that, with a very conservative set of parameters, altruism and fertility can easily double the value of mortality reductions for a young adult, when compared to results obtained using the traditional value of life methodology.

Tradução, adaptação e validação da versão brasileira do questionário utian quality of life (uqol) para avaliação da qualidade de vida no climatério

The present study had as objective translates, to do equivalence and validation of the Utian Quality of Life (UQOL) for the Brazilian population through methods internationally accepted, in which the original questionnaire was translated for the Portuguese by three teachers and the consensual version was translated back for English by two American teachers (back translation). A multidisciplinary committee evaluated all versions and the final version in Portuguese was applied to climacteric women for the process of adaptation. Validation of the instrument was performed by measuring the reliability and validity properties. Construct validity was examined through the comparison between UQOL and the general measuring scale of quality of life Short Form-36 (SF-36). The final version of translation process was easily recognized by the target population, that didn't tell understanding problems. The results obtained for the reliability intra and interobserver showed significant agreement in all of the subjects. The construct validity was obtained through correlations statistically significant among the domains occupational, health and emotional of UQOL with the SF-36 domains. For the exploratory factorial analysis, it was verified that three factors explain 60% of the total variance of the data, the present study allowed concluding that UQOL was appropriately translated and adapted for applicability in Brazil, presenting high reliability and validity. In that way, the executed project provided the involvement of different areas as gynecology, psychology and physiotherapy (interdisciplinary). Thus, this instrument can be included and used in Brazilian studies to assessment the quality of life during the climacteric years

Quality of life and its association with cardiovascular risk factors in a community health care program population

OBJECTIVE: To evaluate quality of life in a population that attended a specific community event on health care education, and to investigate the association of their quality of life with the presence of cardiovascular risk factors INTRODUCTION: Interest in health-related quality of life is growing worldwide as a consequence of increasing rates of chronic disease. However, little is known about the association between quality of life and cardiovascular risk factors. METHODS: This study included 332 individuals. Demographics, blood pressure, body mass index, and casual glycemia were evaluated. The brief version of the World Health Organization Quality of Life questionnaire on quality of life was given to them. The medians of the scores obtained for the physical, psychological, emotional, and environmental domains were used as cutoffs to define higher and lower scores. A multinomial logistic regression model was used to define the parameters associated with lower scores. RESULTS: Diabetes mellitus, dyslipidemia, and obesity were associated with lower scores in the physical domain. Dyslipidemia was also associeted with lower scores in the psychological domain. Male gender and regular physical activity had protective effects on quality of life. Aging was inversely associated with decreased quality of life in the environmental domain. CONCLUSION: The presence of cardiovascular risk factors is related to a decreased quality of life. Conversely, male gender and regular physical activity had protective effects on quality of life. These findings suggest that exercising should be further promoted by health-related public programs, with a special focus on women.

Between freedom and reclusion: Social support as a quality-of-life component in the family caregiver-dependent person binomial

This is a qualitative study which uses Grounded Theory as its methodological framework and Symbolic Interactionism as a theoretical base to understand the experience of family caregivers for Cerebrovascular Accident (CVA) patients with regard to social support during their rehabilitation process at home. The components (themes and categories) of the phenomenon assuming home care and specifically the themes assuming care with support and assuming care without support were inter-related for the purpose of comparison and analysis, in order to apprehend how the interaction between them occurred, It was observed that, in addition to the recovery of the patient's autonomy, social support is one of the intervenient components in the quality of life for the family caregiver-disabled person binomial, particularly with respect to the caregiver's freedom to resume his/her life plan.

Assessment of Quality of Life and Psychologic Aspects in Patients with Gestational Trophoblastic Disease

OBJECTIVE: To assess quality of life (QoL) and psychological aspects in patients with gestational trophoblastic disease (GTD).METHODS: This cross-sectional self-report study was conducted among 54 women. Validated questionnaires assessed QoL (WHO-QOL-bref), symptoms of depression (Beck Depression Inventory [BDI]) and anxiety (State-Trait Anxiety Inventory [STAI]).RESULTS: Most patients rated overall QoL as good (44.44%) anti were satisfied with their health status (42.59%). Mean QoL domain score was lowest for psychologic health (53.86 +/- 21.46) and highest for social relationships (65.74 +/- 22.41). BDI mean was 15.81 +/- 11.15, indicating dysphoria. STAI means were 46 +/- 6.46 for trait-anxiety and 43.72 +/- 4.23 for state-anxiety, both evidencing medium-high anxiety. Among employed patients, environment domain mean was the highest (p = 0.024). Presence of children resulted in lowest means for physical health (p = 0.041) and environment (p = 0.045). Patients desiring children showed significantly higher means for physical health (p = 0.004), psychological health (p = 0.021) and environment (p = 0.003). Chemotherapy had no significant influence on QoL (p > 0.05).CONCLUSION: This study evidenced psychological impact on GTD patients, suggesting specialized care centers should provide psychological interventions during treatment and follow-up of GTD patients, highlighting the importance of a multidisciplinary approach. (J Reprod Med 2009;54:239-244)