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BACKGROUND: People with young onset dementia (YOD) have unique needs and experiences, requiring care and support that is timely, appropriate and accessible. This relies on health professionals possessing sufficient knowledge about YOD. This study aims to establish a consensus among YOD experts about the information that is essential for health professionals to know about YOD. METHODS: An international Delphi study was conducted using an online survey platform with a panel of experts (n = 19) on YOD. In round 1 the panel individually responded to open-ended questions about key facts that are essential for health professionals to understand about YOD. In rounds 2 and 3, the panel individually rated the collated responses in terms of their importance in addition to selected items from the Dementia Knowledge Assessment Scale. The consensus level reached for each statement was calculated using the median, interquartile range and percentage of panel members who rated the statement at the highest level of importance. RESULTS: The panel of experts were mostly current or retired clinicians (57%, n = 16). Their roles included neurologist, psychiatrist and neuropsychiatrist, psychologist, neuropsychologist and geropsychologist, physician, social worker and nurse practitioner. The remaining respondents had backgrounds in academia, advocacy, or other areas such as law, administration, homecare or were unemployed. The panel reached a high to very high consensus on 42 (72%) statements that they considered to be important for health professionals to know when providing care and services to people with YOD and their support persons. Importantly the panel agreed that health professionals should be aware that people with YOD require age-appropriate care programs and accommodation options that take a whole-family approach. In terms of identifying YOD, the panel agreed that it was important for health professionals to know that YOD is aetiologically diverse, distinct from a mental illness, and has a combination of genetic and non-genetic contributing factors. The panel highlighted the importance of health professionals understanding the need for specialised, multidisciplinary services both in terms of diagnosing YOD and in providing ongoing support. The panel also agreed that health professionals be aware of the importance of psychosocial support and non-pharmacological interventions to manage neuropsychiatric symptoms. CONCLUSIONS: The expert panel identified information that they deem essential for health professionals to know about YOD. There was agreement across all thematic categories, indicating the importance of broad professional knowledge related to YOD identification, diagnosis, treatment, and ongoing care. The findings of this study are not only applicable to the delivery of support and care services for people with YOD and their support persons, but also to inform the design of educational resources for health professionals who are not experts in YOD.
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Demência , Consenso , Técnica Delphi , Demência/diagnóstico , Demência/terapia , Pessoal de Saúde , Humanos , Inquéritos e QuestionáriosRESUMO
BACKGROUND: Geriatric hospital wards are highly medicalised environments with limited opportunities for choice and control, and can be distressing for older survivors of psychological trauma. While trauma-informed models of care (TIC) are effectively applied across mental health and other settings, the utility of these models in aged care settings has not been assessed. The objective of this study was to examine whether TIC can reduce responsive behaviour, chemical restraint, and improve staff skills and patient experiences in inpatient geriatric settings. METHODS: Four wards participated in this type I hybrid implementation-effectiveness study across southern Adelaide, Australia, including 79 beds. Using a co-design method, the principles of TIC were transformed into an implementation strategy including staff training, establishment of highly trained 'champions' on each ward, screening for trauma-related needs, and amending ward policies and procedures. Primary outcomes will be examined using an interrupted time-series design and are monthly incidence of responsive behaviour incidents and use of chemical restraint. Process evaluation will be used to examine secondary, implementation outcomes including the acceptability, feasibility, and fidelity to the implementation strategy. DISCUSSION: Trauma-informed care has potential to improve the safety and accessibility of hospital wards for older people who have survived psychologically traumatic events and has an extensive evidence base supporting its effectiveness in other settings. Identifying trauma-related needs and amending care to reduce the risk of re-traumatisation and distress may also reduce the incidence of responsive behaviour change, which has a significant impact on the quality of life of hospital patients and staff and is very costly. The inclusion of a process evaluation will allow us to identify and report changes made on each ward and make recommendations for future implementation efforts.
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Pacientes Internados , Qualidade de Vida , Idoso , Austrália , Hospitais , Humanos , Análise de Séries Temporais InterrompidaRESUMO
BACKGROUND: High rates of mental distress, mental illness, and the associated physical effects of psychological injury experienced by ambulance personnel has been widely reported in quantitative research. However, there is limited understanding of how the nature of ambulance work contributes to this problem, the significant large toll that emergency medical response takes on the individual, and particularly about late and cumulative development of work-related distress among this first responder workforce. METHODS: This study examined peer-reviewed qualitative research published from 2000 to 2018 to outline the effect of emergency medical response work on the psychological, psychosocial, and physical health of paramedics, ambulance officers, ambulance volunteers, and call-takers. Databases searched included: Ovid Medline, CINAHL, Ovid EMcare, PsychInfo and Scopus. The systematic review was organised around five key areas: impact of the work on psychological wellbeing; impact of psychological stress on physical wellbeing; how work-related well-being needs were articulated; effects of workflow and the nature of the work on well-being; and, effects of organisational structures on psychological and physical well-being. RESULTS: Thirty-nine articles met the eligibility criteria. Several factors present in the day-to-day work of ambulance personnel, and in how organisational management acknowledge and respond, were identified as being significant and contributing to mental health and well-being, or increasing the risk for developing conditions such as PTSD, depression, and anxiety. Ambulance personnel articulated their well-being needs across four key areas: organisational support; informal support; use of humour; and individual mechanisms to cope such as detachment and external supports. CONCLUSIONS: Interactions between critical incidents and workplace culture and demands have an overwhelming impact on the psychological, physical and social well-being of ambulance personnel. These include day-to-day managerial actions and responses, the impact of shift work, poorly-managed rosters, and long hours of work with little time between for recovery. Mental health issues result from exposure to traumatic events, and the way managers and peers respond to worker distress. Ambulance personnel suffering from work-related stress feel abandoned by peers, management, and the service, during illness, in return-to-work, and post-retirement. Policy, programmes and interventions, and education need to occur at an individual, peer, organisational, and government level.
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Pessoal Técnico de Saúde/psicologia , Ambulâncias , Serviços Médicos de Emergência/organização & administração , Nível de Saúde , Saúde Mental/estatística & dados numéricos , Estresse Ocupacional/psicologia , Voluntários/psicologia , Humanos , Cultura Organizacional , Pesquisa QualitativaRESUMO
In this study, we argue that contemporary nursing care has been overtaken by new public management strategies aimed at curtailing budgets in the public hospital sector in Australia. Drawing on qualitative interviews with 15 nurses from one public acute hospital with supporting documentary evidence, we demonstrate what happens to nursing work when management imposes rounding as a risk reduction strategy. In the case study outlined rounding was introduced across all wards in response to missed care, which in turn arose as a result of work intensification produced by efficiency, productivity, effectiveness and accountability demands. Rounding is a commercially sponsored practice consistent with new public management. Our study illustrates the impact that new public management strategies such as rounding have on how nurses work, both in terms of work intensity and in who controls their labour.
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Comportamento de Redução do Risco , Gestão da Segurança/métodos , Visitas de Preceptoria/organização & administração , Carga de Trabalho/psicologia , Austrália , Humanos , Entrevistas como Assunto , Papel do Profissional de Enfermagem/psicologia , Cuidados de Enfermagem/métodos , Recursos Humanos de Enfermagem Hospitalar/organização & administração , Estudos de Casos Organizacionais , Responsabilidade SocialRESUMO
BACKGROUND: Healthcare services can be re-traumatising for trauma survivors where they trigger memories of past distressing events and exert limits to a survivor's sense of autonomy, choice, and control. The benefits of receiving trauma-informed healthcare are well established; however, factors that promote or impede the implementation of trauma-informed care are not yet well characterised and understood. The aim of this review was to systematically identify and synthesise evidence regarding factors that promote or reduce the implementation of TIC in healthcare settings. METHODS: This systematic review followed the Preferred Reporting Items for Systematic Reviews and Meta-analyses (PRISMA) 2.0 guidelines. Scopus, MEDLINE, Proquest, PsycINFO and grey literature were searched for original research or evaluations published between January 2000 and April 2021 reporting barriers and/or facilitating factors for the implementation of trauma-informed care in a healthcare setting. Two reviewers independently assessed the quality of each included study using the Mixed Methods Appraisal Tool (MMAT) Checklist. RESULTS: Twenty-seven studies were included, 22 of which were published in the USA. Implementation occurred in a range of health settings, predominantly mental health services. The barriers and facilitators of implementing trauma-informed care were categorised as follows: intervention characteristics (perceived relevance of trauma-informed care to the health setting and target population), influences external to the organisation (e.g. interagency collaboration or the actions of other agencies) and influences within the organisation in which implementation occurred (e.g. leadership engagement, financial and staffing resources and policy and procedure changes that promote flexibility in protocols). Other factors related to the implementation processes (e.g. flexible and accessible training, service user feedback and the collection and review of initiative outcomes) and finally the characteristics of individuals within the service or system such as a resistance to change. CONCLUSIONS: This review identifies key factors that should be targeted to promote trauma-informed care implementation. Continued research will be helpful for characterising what trauma-informed care looks like when it is delivered well, and providing validated frameworks to promote organisational uptake for the benefit of trauma survivors. REGISTRATION: The protocol for this review was registered on the PROSPERO database (CRD42021242891).
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BACKGROUND: The aim of this study was to explore, via empirical comparison, the relationship between quality of life, as measured by the ICECAP-O capability index (a new instrument designed to measure and value quality of life in older people), with both self-reported health status and the quality of care transition in adults aged 65 and over participating in two post acute rehabilitation programs (outpatient day rehabilitation and the Australian National Transition Care residential program). METHODS: The ICECAP-O was administered to patients receiving either outpatient day rehabilitation (n = 53) or residential transition care (n = 29) during a face to face interview. The relationships between the ICECAP-O and other instruments, including the EQ-5D (a self-reported measure of health status) and CTM-3 (a self-reported measure of the quality of care transitions), the type of post-acute care being received and socio-demographic characteristics were examined. RESULTS: The mean ICECAP-O score for the total sample was 0.81 (SD: 0.15). Patients receiving outpatient day rehabilitation generally reported higher levels of capability, than patients receiving residential transition care (mean 0.82 [SD: 0.15] and 0.79 [SD: 0.164] respectively), however these differences were not statistically significant. The mean EQ-5D score for the total sample was somewhat lower than the ICECAP-O (mean 0.55; SD: 0.27) indicating significant levels of health impairment with the outpatient day rehabilitation group demonstrating slightly higher levels of health status than the transition care group (mean 0.54 [SD: 0.254] and mean 0.49 [SD: 0.30]). The ICECAP-O was found to be positively correlated with both the CTM-3 (Spearman's r =0.234; p ≤ 0.05) and the EQ-5D (Spearman's r = 0.437; p ≤ 0.001). The relationships between the total EQ-5D and CTM-3 scores and the individual attributes of the ICECAP-O indicate health status and quality of care transition in this patient population to be influential in some, but not all aspects of capability. CONCLUSIONS: The correlations between the ICECAP-O, EQ-5D and CTM-3 instruments illustrate that capability is strongly and positively associated with health-related quality of life and the quality of care transitions. However further research is required to further examine the construct validity of the ICECAP-O and to examine its potential for incorporation into economic evaluation.
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Continuidade da Assistência ao Paciente , Avaliação Geriátrica/métodos , Pacientes Ambulatoriais/psicologia , Transferência de Pacientes , Qualidade de Vida , Idoso , Idoso de 80 Anos ou mais , Continuidade da Assistência ao Paciente/economia , Continuidade da Assistência ao Paciente/normas , Feminino , Serviços de Saúde para Idosos/economia , Serviços de Saúde para Idosos/normas , Humanos , Masculino , Avaliação de Processos e Resultados em Cuidados de Saúde , Pacientes Ambulatoriais/estatística & dados numéricos , Transferência de Pacientes/organização & administração , Psicometria , Centros de Reabilitação , Características de Residência , Fatores Socioeconômicos , Austrália do SulRESUMO
Introduction: Up to 70% of older adults have experienced a psychologically traumatic event in their life. Traumatic events can have lifelong effects on functioning and emotion regulation and can affect behavior and experiences in care settings. Common healthcare practices and environments can be re-traumatizing for trauma survivors. These features may trigger behavior change (e.g., aggression and agitation) particularly after the onset of dementia. However, very little research exists to understand how the effects of traumatic events manifest in aged care settings. Trauma-informed care is a framework in which the potential impact of trauma is acknowledged, and practices and procedures are adapted to maximize feelings of control and safety for the patient. Trauma-informed care is an innovative approach with little published evidence in acute geriatric settings. Methods: We present a series of cases to demonstrate how psychological trauma can affect the experience of inpatient care for older people. The cases detail the patients' relevant background, triggers and behaviors followed by the steps taken by staff to support the patient and respond to their trauma-related needs. These cases describe how the principles of trauma-informed care can be applied to recognize when past psychologically traumatic events are impacting the older adult in hospital. The outcomes of these interventions are reported on in terms of their impact on challenging behavior, patient experiences and satisfaction with care, and/or staff confidence and skill. Findings: A range of past events negatively impacted the patients during their time in hospital, including childhood abuse, military service, and domestic violence. Staff implemented strategies to accommodate trauma-related needs while providing care that improved safety and reduced patient distress. Principles of trauma-informed care were applied where able, including providing choices and enabling autonomy. However, organizational and environmental features of inpatient wards continued to pose risks for re-traumatisation. Conclusions: Trauma-informed care is an under-utilized yet potentially beneficial approach to care for older adults in the hospital setting. The cases detailed here demonstrated that the impact of psychological trauma requires an individualized response from staff which when effectively implemented can promote staff and patient safety, reduce the risk of re-traumatisation, and minimize adverse events.
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Post-diagnosis young onset dementia (YOD) care is often fragmented, with services delivered across aged care, healthcare, and social care sectors. The aim of this project was to test the feasibility and potential effectiveness of a learning collaborative implementation strategy for improving the cross-sector integration of care for people with YOD and to generate data to refine the implementation strategy for scaleup. We conducted a longitudinal mixed methods process evaluation and recruited one representative from three Australian aged care organisations, three disability care organisations and three organisations (n = 9) contracted to deliver care navigation services. One representative from each organisation joined a learning collaborative within their local area and completed a six-module online education package incorporating written resources, webinars, collaboration and expert mentoring. Participants identified gaps in services in their region and barriers to care integration and developed a shared plan to implement change. Normalisation Process Theory was applied to understand the acceptability, penetration and sustainability of the implementation strategy as well as barriers and enabling factors. Dementia knowledge measured by the Dementia Knowledge and Awareness Scale was high among the professionals at the start of the implementation period (mean = 39.67, SD = 9.84) and did not change by the end (mean = 39.67, SD = 8.23). Quantitative data demonstrated that clinicians dedicated on average half of the recommended time commitment to the project. However, qualitative data identified that the learning collaborative strategy enhanced commitment to implementing integrated care and promoted action towards integrating previously disparate care services. Participant commitment to the project was influenced by their sense of obligation to their team, and teams that established clear expectations and communication strategies early were able to collaborate and use the implementation plan more effectively (demonstrating collective action). Teams were less likely to engage in the collective action or reflexive monitoring required to improve care integration if they did not feel engaged with their learning collaborative. Learning collaboratives hold promise as a strategy to improve cross-sector service collaboration for people with YOD and their families but must maximise group cohesion and shared commitment to change.
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Demência , Humanos , Idoso , Austrália , Demência/diagnóstico , Demência/terapiaRESUMO
OBJECTIVES: To report on differences in Indigenous women's expectations of clinical care during treatment for a gynaecological cancer in rural and remote regions. DESIGN: Qualitative interviews were conducted in New South Wales, Victoria, South Australia and the Northern Territory in 2008 with 37 clinicians working in gynaecological cancer and 24 women with a gynaecological cancer. Three of the participants were Indigenous women living in large rural towns (others were non-Indigenous), whereas six of the 37 clinicians interviewed worked closely with Indigenous women in remote settings. Indigenous women were contacted through an Indigenous researcher. Interviews were analysed for emerging themes, then compared with each other and with the research literature for similarities and differences. RESULTS: There is considerable variation between clinician observations of the expectations of Indigenous women in remote regions, and the views of Aboriginal women in rural settings. CONCLUSION: Indigenous women in rural settings have specific views about quality medical care. These include expectations of timely and culturally appropriate care, and strong ties to family and kin, but do not accord with other research findings that suggest Aboriginal women must receive care from same sex clinicians or that care is often delayed. The paper alerts practitioners to the fact that culturally appropriate care will vary from group to group, particularly between remote, rural and urban populations.
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Havaiano Nativo ou Outro Ilhéu do Pacífico , Satisfação do Paciente , População Rural , Neoplasias do Colo do Útero/terapia , Serviços de Saúde da Mulher , Austrália , Feminino , Humanos , Entrevistas como Assunto , Neoplasias do Colo do Útero/diagnóstico , Neoplasias do Colo do Útero/etnologiaRESUMO
This commentary discusses how health economic techniques can usefully be applied to inform clinical and policy decision making in the aged care sector from two perspectives: firstly, in relation to the measurement and valuation of the costs and benefits of new and existing health care technologies and modes of aged care service delivery and secondly, in relation to the facilitation of autonomy and patient choice.
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Atenção à Saúde/economia , Serviços de Saúde para Idosos/economia , Idoso , Idoso de 80 Anos ou mais , Análise Custo-Benefício/economia , Tomada de Decisões , Economia Médica , Feminino , Política de Saúde/economia , Humanos , Qualidade de VidaRESUMO
BACKGROUND: Social and psychological factors such as fear of falling, self-efficacy and coping strategies are thought to be important in the recovery from hip fracture in older people. OBJECTIVES: To evaluate the effects of interventions aimed at improving physical and psychosocial functioning after hip fracture. SEARCH STRATEGY: We searched the Cochrane Bone, Joint and Muscle Trauma Group Specialised Register (September 2009), the Cochrane Central Register of Controlled Trials (The Cochrane Library 2008, Issue 4), MEDLINE and EMBASE (to December 2008), other databases and reference lists of related articles. SELECTION CRITERIA: Randomised and quasi-randomised trials of rehabilitation interventions applied in inpatient or ambulatory settings to improve physical or psychosocial functioning in older adults with hip fracture. Primary outcomes were physical and psychosocial function and 'poor outcome' (composite of mortality, failure to return to independent living and/or readmission). DATA COLLECTION AND ANALYSIS: Two authors independently selected trials based on pre-defined inclusion criteria, extracted data and assessed risk of bias. Disagreements were moderated by a third author. MAIN RESULTS: Nine small heterogeneous trials (involving 1400 participants) were included. The trials had differing interventions, including 'usual care' comparators, providers, settings and outcome assessment. Although most trials appeared well conducted, poor reporting hindered assessment of their risk of bias.Three trials testing interventions (reorientation measures, intensive occupational therapy, cognitive behavioural therapy) delivered in inpatient settings found no significant differences in outcomes. Two trials tested specialist-nurse led care, which was predominantly post-discharge but included discharge planning in one trial: this trial found some benefits at three months but the other trial found no differences at 12 months. Coaching (educational and motivational interventions) was examined in two very different trials: one trial found no effect on function at six months; and the other showed coaching improved self-efficacy expectations at six months, although not when combined with exercise. Two trials testing interventions (home rehabilitation; group learning program) started several weeks after hip fracture found no significant differences in outcomes at 12 months. AUTHORS' CONCLUSIONS: Some outcomes may be amenable to psychosocial treatments; however, there is insufficient evidence to recommend practice changes. Further research on interventions described in this review is required, including attention to timing, duration, setting and administering discipline(s), as well as treatment across care settings. To facilitate future evaluations, a core outcome set, including patient-reported outcomes such as quality of life and compliance, should be established for hip fracture trials.
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Fraturas do Quadril/psicologia , Fraturas do Quadril/reabilitação , Idoso , Humanos , Ensaios Clínicos Controlados Aleatórios como AssuntoRESUMO
Nursing students, regardless of setting, require skills in working with people with mental health issues. One way to provide students with learning opportunities within the context of limited undergraduate mental health content and lack of mental health placements is through employment as assistants in nursing (AIN). The purpose of the study was to investigate the use of AINs employed in an emergency department in South Australia to supervise (continuous observation) mental health consumers on inpatient treatment orders. Twenty-four participants took part in the study, with AINs (n = 8, all studying in an undergraduate nursing programme), nurse managers (n = 5), and nurses (n = 11) participating in semi-structured interviews. Data were analysed using thematic analysis. Themes focused on (i) the AIN role, their practice, boundaries or restrictions of their role, and the image consumers have of AINs; (ii) learning through experience, where the AIN role was a practical opportunity to learn and apply knowledge obtained through university studies; and (iii) support, which focused on how AINs worked with nursing staff as part of the healthcare team. Overall, participants believed that AINs played an important role in the ED in supervising consumers on involuntary mental health treatment orders, where their unique role was seen to facilitate more positive consumer experiences. The AIN role is one way for nursing students to develop skills in working with people with mental health issues.
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Serviço Hospitalar de Emergência , Assistentes de Enfermagem , Enfermagem Psiquiátrica/educação , Estudantes de Enfermagem , Adulto , Serviço Hospitalar de Emergência/organização & administração , Feminino , Humanos , Masculino , Adulto JovemRESUMO
OBJECTIVES: In contrast to the proliferation of studies incorporating health state values from adults of all ages, relatively few studies have reported upon the application of the time trade off (TTO) approach to generate health state values from populations of younger adults. This study sought to employ a conventional TTO approach to obtain values for a selection of Child Health Utility 9D (CHU9D) health states from a sample of young adults aged 18-29 years and to compare with the values generated from application of the original UK adult standard gamble scoring algorithm and the Australian adolescent scoring algorithm. METHODS: A convenience sample of Flinders University undergraduate students aged 18-29 years were invited to participate in an interviewer administered conventional TTO task to value a series of five CHU9D health impairment states using the widely used variant developed by the York EQ-5D team. RESULTS: A total of 152 students within the target age range were approached to participate in the study of whom n = 38 consented to participate, giving an overall participation rate of 25%. With the exception of one health state, the mean TTO values were consistently lower than those generated from application of the original scoring algorithm for the CHU9D elicited with adults of all ages. A significant proportion of participants (n = 17, 45%) considered the most severe CHU9D (PITS) state to be worse than death. CONCLUSIONS: This study adds to a growing body of evidence indicating that the values attached to identical health states are typically lower for younger people in comparison with adults of all ages and dependent upon the elicitation method utilised. The values obtained are applicable for re-scaling raw CHU9D health state values obtained from younger adolescent samples using profile case best-worst scaling.
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Nível de Saúde , Preferência do Paciente/psicologia , Qualidade de Vida/psicologia , Adolescente , Adulto , Fatores Etários , Algoritmos , Feminino , Humanos , Masculino , Inquéritos e Questionários , Adulto JovemRESUMO
The main objective of the study was to apply the recently developed Index of Capability (ICECAP-O) instrument to measure and value the quality of life of a representative sample of the older South Australian population (aged ≥ 65 years) according to carer status. A Health Omnibus survey including the ICECAP-O instrument, carer status (informal carer vs. non-carer) and several socio-demographic questions was administered in 2009 as a face-to-face interview to 789 individuals aged 65 years or older in their own homes. A total of 671 individuals (85%) characterised themselves as a non-carer and 115 individuals (15%) characterised themselves as an informal carer. In general, carers exhibited relatively high quality of life as measured by the ICECAP-O, with carers having comparable mean ICECAP-O scores to non-carers in the general population [carers: mean (SD) 0.848 (0.123), non-carers: mean (SD) 0.838 (0.147)]. The results of the multivariate regression model for the total sample indicated statistically significant variations in overall ICECAP-O scores according to age (with younger participants tending to have slightly higher scores on average), country of birth (with those participants who were born in Australia having higher scores on average than those who were born elsewhere) and household income (with participants with higher income levels having higher scores on average). The results of the multivariate regression model differentiated by carer status also indicated some important differences. Specifically, average ICECAP-O scores were noticeably lower for carers who are separated or divorced and for carers who lived alone and these differences were statistically significant. The study findings provide support for the existence of process utility in informal care-giving. The provision of informal care may be associated with a positive impact upon quality of life for many caregivers, which may mediate the negative aspects arising from the burden associated with informal care-giving.
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Cuidadores , Serviços de Assistência Domiciliar , Vida Independente , Qualidade de Vida , Idoso , Idoso de 80 Anos ou mais , Intervalos de Confiança , Feminino , Pesquisas sobre Atenção à Saúde , Humanos , Masculino , Pesquisa Qualitativa , Análise de Regressão , Austrália do SulRESUMO
BACKGROUND: The measurement and valuation of quality of life forms a major component of economic evaluation in health care and is a major issue in health services research. However, differing approaches exist in the measurement and valuation of quality of life from a health economics perspective. While some instruments such as the EQ-5D-3L focus on health-related quality of life alone, others assess quality of life in broader terms, for example, the newly developed ICECAP-O. OBJECTIVE: The aim of this study was to utilize two generic preference-based instruments, the EQ-5D-3L and the ICECAP-O, to measure and value the quality of life of older adult patients receiving post-acute care. An additional objective was to compare the values obtained by each instrument with those generated from two community-based general population samples. METHOD: Data were collected from a clinical patient population of older adults receiving post-acute outpatient rehabilitation or residential transition care and two Australian general population samples of individuals residing in the general community. The individual responses to the ICECAP-O and EQ-5D-3L instruments were scored using recently developed Australian general population algorithms. Empirical comparisons were made of the resulting patient and general population sample values for the total population and dis-aggregated according to age (65-79 and 80+ years) and gender. RESULTS: A total of 1,260 participants aged 65-99 years (n = 86 clinical patient sample, n = 385 EQ-5D-3L general population sample, n = 789 ICECAP-O general population sample) completed one or both of the EQ-5D-3L and ICECAP-O instruments. As expected, the patient group demonstrated lower quality of life than the general population sample as measured by both quality-of-life instruments. The difference in values between the patient and general population groups was found to be far more pronounced for the EQ-5D-3L than for the ICECAP-O. The ICECAP-O was associated with a mean difference in values of 0.04 (patient group mean 0.753, SD 0.18; general population group mean 0.795, SD 0.17, respectively, p = 0.033). In contrast, the EQ-5D-3L was associated with a mean difference in values of 0.19 (patient group mean 0.595, SD 0.20; general population group mean 0.789, SD 0.02, respectively, p ≤ 0.001). CONCLUSIONS: The study findings illustrate the magnitude of the difference in patient and general population values according to the instrument utilized, and highlight the differences in both the theoretical underpinnings and valuation algorithms for the EQ-5D-3L and ICECAP-O instruments. Further empirical work is required in larger samples and alternative patient groups to investigate the generalizability of the findings presented here.
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Nível de Saúde , Qualidade de Vida , Inquéritos e Questionários , Doença Aguda/reabilitação , Idoso , Idoso de 80 Anos ou mais , Intervalos de Confiança , Feminino , Humanos , MasculinoRESUMO
QALYs are increasingly being utilized as a health outcome measure to calculate the benefits of new treatments and interventions within cost-utility analyses for economic evaluation. Cost-utility analyses of adolescent-specific treatment programmes are scant in comparison with those reported upon for adults and tend to incorporate the views of clinicians or adults as the main source of preferences. However, it is not clear that the views of adults are in accordance with those of adolescents on this issue. Hence, the treatments and interventions most highly valued by adults may not correspond with those most highly valued by adolescents. Ordinal methods for health state valuation may be more easily understood and interpreted by young adolescent samples than conventional approaches. The availability of young adolescent-specific health state values for the estimation of QALYs will provide new insights into the types of treatment programmes and health services that are most highly valued by young adolescents. The first objective of this study was to assess the feasibility of applying best-worst scaling (BWS) discrete-choice experiment (DCE) methods in a young adolescent sample to value health states defined by the Child Health Utility 9D (CHU9D) instrument, a new generic preference-based measure of health-related quality of life developed specifically for application in young people. The second objective was to compare BWS DCE questions (where respondents are asked to indicate the best and worst attribute for each of a number of health states, presented one at a time) with conventional time trade-off (TTO) and standard gamble (SG) questions in terms of ease of understanding and completeness. A feasibility study sample of consenting young adolescent school children (n = 16) aged 11-13 years participated in a face-to-face interview in which they were asked to indicate the best and worst attribute levels from a series of health states defined by the CHU9D, presented one at a time. Participants were also randomly allocated to receive additional conventional TTO or SG questions and prompted to indicate how difficult they found them to complete. The results indicate that participants were able to readily choose 'best' and 'worst' dimension levels in each of the CHU9D health states presented to them and provide justification for their choices. Furthermore, when presented with TTO or SG questions and prompted to make comparisons, participants found the BWS DCE task easier to understand and complete. The results of this feasibility study suggest that BWS DCE methods are potentially more readily understood and interpretable by vulnerable populations (e.g. young adolescents). These findings lend support to the potential application of BWS DCE methods to undertake large-scale health state valuation studies directly with young adolescent population samples.