Patient Perspective on Acute Hepatic Porphyria with Sporadic Attacks: A Chronic Disease with Substantial Health-Related Quality of Life Impacts.

INTRODUCTION: Acute hepatic porphyria (AHP) is a family of rare metabolic diseases characterized by potentially life-threatening acute attacks and, in some patients, chronic debilitating symptoms. While patients with frequent or recurrent attacks (three or more attacks annually) are known to have reduced health-related quality of life (HRQoL) as most aspects of daily living are impacted, limited data exist in patients with sporadic attacks. This research aims to identify porphyria-related symptoms between attacks, characterize the frequency, severity, and bothersomeness of these symptoms, and more generally understand the burden of this disease in patients who experience attacks sporadically. METHODS: Patients with AHP with sporadic attacks (AHP-SA) (at least one porphyria attack in the past 2 years, but no more than two attacks per year in the previous 2 years) were recruited, via outreach performed by patient advocacy groups, for participation in qualitative telephone interviews. Interviews were conducted using a semi-structured guide and were audio-recorded, transcribed, anonymized, coded, and analyzed to determine if saturation was reached. RESULTS: A total of 14 participants with AHP-SA were interviewed (mean age 45 years, 100% female). The most frequently reported chronic symptoms were fatigue, pain, heartburn, and constipation. The most frequently experienced chronic impacts were difficulty performing daily activities, difficulty exercising, negative impact on work, need for a special diet, anxiety, and depression. Beyond these chronic symptoms and impacts, participants also frequently described flares in their porphyria that were severe, did not qualify in their minds as an acute attack, but were nonetheless more severe than their typical chronic experience. CONCLUSION: Patients with acute hepatic porphyria who experience sporadic attacks face significant chronic symptoms and impacts that frequently require significant pharmacological and clinical treatment. The reported severity of these symptoms and impacts suggests that the humanistic burden of AHP-SA is substantial and may lead to a significant decrease in health-related quality of life in these patients between acute attacks. The presence of flares that do not reach the level of what is considered an acute attack by patients is a unique finding of this study not reported elsewhere and requires additional investigation.

Identifying baby boomer service expectations for future aged care community services in Australia.

Baby Boomers are ageing, yet little is known as to what their expectations are likely to be for the community health service sector or what the challenges this cohort might create. Interviews were conducted with 11 experienced Australian baby boomer carers to identify the key characteristics that might influence their future community aged care service expectations. Qualitative analysis of the data revealed five characteristics that could influence participant expectations for future services: Independent; Astute; Resourceful; Forthright and Exacting. As octogenarians this group plan to independently self-determine what support services they receive and from whom without any outside influence, using their well-developed skills and knowledge, by drawing on their own resourcefulness. They will most likely create significant pressure for industry change. To accommodate this group, a new service industry model will most likely be needed. One that empowers older people to completely self-manage and take control of their services as true consumers rather than a model, which designates older people as passive recipients of provider offered and driven services. For this to be achieved, a considerable philosophical shift is required on how ageing is viewed by society, including health professionals and government.

Has consumer-directed care improved the quality of life of older Australians? An exploratory empirical assessment.

OBJECTIVES: To assess the impact of a Consumer Directed Care (CDC) model of service delivery on the quality of life of older people receiving home care packages. METHODS: Quality of life was assessed using validated instruments. The relationship between quality of life and length of time exposed to CDC was examined using descriptive statistical and multivariate regression analyses. RESULTS: Consenting older adults (n = 150) in receipt of home care packages participated. Quality of life and capability scores were higher for older people in receipt of a CDC model of service delivery for <12 months compared to those receiving the model of care for longer, although this difference was not statistically significant. However, older people with more recent exposure to CDC indicated a stronger capability to do things that made them feel valued. CONCLUSION: Extended longitudinal follow-up is needed to facilitate a detailed examination of the relationship between the evolution of CDC and its longer-term influences on quality of life.

Patient and caregiver experiences of living with acute hepatic porphyria in the UK: a mixed-methods study.

BACKGROUND: This study used quantitative and qualitative research methods to analyze how acute hepatic porphyria (AHP) affects patients with varying annualized porphyria attack rates. The overall impact of AHP on patients and caregivers, including their quality of life, was explored. The nature and treatment of acute attacks, experiences of long-term heme arginate treatment and access to other appropriate treatment, and the extent of and treatment for chronic symptoms were also investigated within this study. METHODS: Patient and caregiver data were collected via an online survey of members of the British Porphyria Association, followed by an optional 1-h telephone interview. RESULTS: Thirty-eight patients and 10 caregivers responded to the survey. Of those, 10 patients and three caregivers completed follow-up interviews. Overall, 19 patients (50%) had experienced an acute attack within the previous 2 years, and the severity and types of symptoms experienced during or between acute attacks varied considerably. There were no clear definitions among patients for 'mild' or 'severe' attacks. Treatments and treatment settings used to manage attacks also varied. Following unsatisfactory care experiences at hospitals, some patients reported avoiding further hospital services for later attacks. Therefore, using settings of care as a measure of attack severity should be avoided. Ninety-four percent of patients also experienced chronic symptoms, which were as varied as acute attacks. Pain was the predominant chronic symptom and was managed with opioids in severe cases. Regardless of AAR, porphyria heavily impacted the daily lives of patients and caregivers. Although patients experiencing frequent attacks generally endured a greater impact on their daily life, patients with less frequent attacks also experienced impacts on all domains (social, leisure activities, relationship with family, relationships, psychological wellbeing, finances, employment, and study). Caregivers were most affected in the finance, relationships with family, and employment domains, and just over half of the caregivers reported a moderate impact on their psychological wellbeing. CONCLUSIONS/IMPLICATIONS: The burden of illness with AHP is high across all patients, regardless of frequency of attacks, and AHP negatively affects patients and caregivers alike.

An early investigation of individual budget expenditures in the era of consumer-directed care.

OBJECTIVES: To identify the key categories of consumer expenditures following the introduction of consumer-directed care (CDC) in the Australian community aged care sector. METHODS: Income and expenditure data were extracted from monthly budget statements and categorised. Expenditures by category were examined by home care package level, length of time receiving CDC and socio-demographic characteristics. RESULTS: A total of 150 older people in receipt of CDC in South Australia and New South Wales were approached, of whom 95 (63%) consented to participate. Hours of formal care support received was a key driver of expenditure. On average, approximately 53% of total expenditure was allocated to care services, 20% to administration and 17% to case management. CONCLUSIONS: This study was undertaken during the initial stages of the transition to CDC. Further research should investigate the longer-term budgetary impacts of the transition to CDC for consumers and the sector.

How do clients in Australia experience Consumer Directed Care?

BACKGROUND: Our study explored client experience of Australian Consumer Directed Care. This evolving funding model enables consumer autonomy and choice, allowing older people to remain in their community as they age and need support through the creation of a personalised support service. Consumer Directed Care focuses on providing services that the consumer self-determines to meeting their needs including identifying their types of services, from whom, when and how these services are delivered. METHODS: Semi-structured in-depth interviews were conducted in two Australian states between August 2015 and April 2016 with 14 participants, preferably in receipt of CDC services for at least the previous 12 months. Questions explored how the participant first learned about this service; the types of services they received; whether services met their needs; and any additional support services they personally purchased. Interviews were transcribed, coded and thematically analysed. RESULTS: Four main themes related to consumer experience emerged. Knowledge: Unsure what Consumer Directed Care Means. Acceptance: Happily taking any prescriptive service that is offered. Compliance: Unhappily acceding to the prescriptive service that is offered. External Influences: Previous aged care service experience, financial position, and cultural differences. CONCLUSION: Our results suggest that the anticipated outcomes of Consumer Directed Care providing a better service experience were limited by existing client knowledge of these services, how best to utilise their funding allocation, and their acceptance or compliance with what was offered, even if this was not personalised or sufficient. External influences, such as service experience, finances, cultural difference, impacted the way clients managed their allocation. Our study identified that ongoing engagement and discussion with the client is required to ensure that services are specific, directly relevant and effective to achieving a consumer directed care service.

Consumer Directed Care in Australia: early perceptions and experiences of staff, clients and carers.

The study aimed to identify the shared issues and challenges being experienced by staff, their clients and informal carers, with the introduction of Consumer Directed Care (CDC). Secondary analysis was undertaken of data that had been initially collected, via semi-structured in-depth interviews, to inform the development of a discrete choice experiment. The raw staff and client/carer data were re-examined using an iterative inductive process. The analysis focused on locating the shared themes and differences between the participant groups based on their CDC experience. The data were also assessed for difficulties or barriers that impacted on the service. Four broad shared themes were derived: culture, role change, operational systems and resourcing, but with a range of diverse and sometimes conflicting sub-themes between the different participant groups. Differences can be linked to participant role in the service chain, with discordance emerging between what has been traditionally offered and what might be possible. This investigation occurred during the period in which services were transitioning from a traditional aged care service model to a new model of service provision requiring considerable industry change. We conclude that existing industry regulation, culture and practice supports an established service model in Australia that arguably makes translation of the objectives of CDC difficult.

Impact of consumer-directed care on quality of life in the community aged care sector.

AIM: All consumer-directed care (CDC) models aim to transfer "choice" and "control" over the allocated funds from the aged care provider to service recipients. This study presents an empirical assessment of the relationships between quality of life for older adults aged ≥65 years receiving community aged care services in Australia under CDC compared with those receiving traditional provider-directed care (PDC). METHODS: Self-reported quality of life (health status and capabilities) were measured for older adults receiving community aged care services (n = 139) using the EuroQoL five dimensions five-level version and the older people-specific capability index (ICECAP-O) instruments. The relationship between quality of life, mode of service delivery, and other sociodemographic characteristics were examined using descriptive statistical and multivariate regression analyses. RESULTS: The quality of life of individuals receiving CDC and PDC was similar (ICECAP-O: CDC mean 0.74 [SD 0.17], PDC mean 0.78 [SD 0.17]. EuroQoL five dimensions five-level version: CDC mean 0.46 [SD 0.33], PDC mean 0.49 [SD0.27]). In general, individuals in receipt of CDC reported higher levels of capability in the control and independence dimension for the ICECAP-O relative to those receiving PDC. Multivariate regression analysis showed that living alone was associated with higher quality of life (P = 0.01) and higher levels of capability (P = 0.02). CONCLUSIONS: Although no discernible differences in overall quality of life were found, higher levels of self-reported control and independence for those in receipt of CDC suggest that the main policy objectives of transferring "choice" and "control" away from the aged care provider and to the individual are being met. Geriatr Gerontol Int 2017; 17: 1399-1405.

Innovation and Consumer Directed Care: Identifying the challenges.

Our aim was to report clinician and researcher observations about the practical difficulties with achieving the articulated objectives of Consumer Directed Care (CDC). The methods used were as follows: identification of key client community services issues through analysis of qualitative data related to a PhD project; review of the summary of these issues by the supervising academic; presentation of the issues to five clinicians involved with a community service clinical trial; verification of the findings through discussions with a senior community service provider. There is anecdotal evidence that the current overlay of CDC in the existing community-based home services sector for people who are older will continue to prevent its effective implementation. The existing culture and underlying philosophies related to this sector maybe unable to support the level of innovative change required. Research is needed into how the stated objectives of CDC can be achieved in Australia and how this can best be managed.

An empirical comparison of the OPQoL-Brief, EQ-5D-3 L and ASCOT in a community dwelling population of older people.

BACKGROUND: This study examined the relationships between a newly developed older person-specific non-preference-based quality of life (QoL) instrument (Older People's Quality of Life brief questionnaire (OPQoL-brief)) and two generic preference-based instruments (the EQ-5D-3L Level (EQ-5D-3 L) and the Adult Social Care Outcomes Toolkit (ASCOT) in a community-dwelling population of Australian older people receiving aged care services. METHODS: We formulated hypotheses about the convergent validity between the instruments (examined by Wilcoxon-Mann Whitney, Kruskal Wallis and Spearman's correlation tests) and levels of agreement (assessed using intra class correlation (ICC) and modified Bland-Altman plots based on normalized Z EQ-5D-3 L and ASCOT utilities and OPQoL-Brief summary scores). RESULTS: The utilities/summary scores for 87 participants (aged 65-93 years) were moderately but positively correlated. Moderate convergent validity was evident for a number of instrument dimensions with the strongest relationship (r = 0.57) between 'enjoy life' (OPQoL-Brief) and 'social contact' (ASCOT). The overall ICC was 0.54 and Bland-Altman scatter plots showed 3-6% of normalized Z-scores were outside the 95% limits of agreement suggesting moderate agreement between all three instruments (agreement highest between the OPQoL-Brief and the ASCOT). CONCLUSIONS: Our results suggest that the OPQoL-Brief, the ASCOT and the EQ-5D_3L are suitable for measuring quality of life outcomes in community-dwelling populations of older people. Given the different constructs underpinning these instruments, we recommend that choice of instrument should be guided by the context in which the instruments are being applied. Currently, the OPQoL-Brief is not suitable for use in cost-utility analyses as it is not preference-based. Given their different perspectives, we recommend that both the ASCOT and the EQ-5D are applied simultaneously to capture broader aspects of quality of life and health status within cost-utility analyses within the aged care sector. Future research directed towards the development of a new single preference-based instrument that incorporates both health status and broader aspects of quality of life within quality adjusted life year calculations for older people would be beneficial.

Investigating consumers' and informal carers' views and preferences for consumer directed care: A discrete choice experiment.

Consumer directed care (CDC) is currently being embraced internationally as a means to promote autonomy and choice for consumers (people aged 65 and over) receiving community aged care services (CACSs). CDC involves giving CACS clients (consumers and informal carers of consumers) control over how CACSs are administered. However, CDC models have largely developed in the absence of evidence on clients' views and preferences. We explored CACS clients' preferences for a variety of CDC attributes and identified factors that may influence these preferences and potentially inform improved design of future CDC models. Study participants were clients of CACSs delivered by five Australian providers. Using a discrete choice experiment (DCE) approach undertaken in a group setting between June and December 2013, we investigated the relative importance to CACS consumers and informal (family) carers of gradations relating to six salient features of CDC (choice of service provider(s), budget management, saving unused/unspent funds, choice of support/care worker(s), support-worker flexibility and level of contact with service coordinator). The DCE data were analysed using conditional, mixed and generalised logit regression models, accounting for preference and scale heterogeneity. Mean ages for 117 study participants were 80 years (87 consumers) and 74 years (30 informal carers). All participants preferred a CDC approach that allowed them to: save unused funds from a CACS package for future use; have support workers that were flexible in terms of changing activities within their CACS care plan and; choose the support workers that provide their day-to-day CACSs. The CDC attributes found to be important to both consumers and informal carers receiving CACSs will inform the design of future CDC models of service delivery. The DCE approach used in this study has the potential for wide applicability and facilitates the assessment of preferences for elements of potential future aged care service delivery not yet available in policy.

Important features of home-based support services for older Australians and their informal carers.

In Australia, newly initiated, publicly subsidised 'Home-Care Packages' designed to assist older people (≥ 65 years of age) living in their own home must now be offered on a 'consumer-directed care' (CDC) basis by service providers. However, CDC models have largely developed in the absence of evidence on users' views and preferences. The aim of this study was to determine what features (attributes) of consumer-directed, home-based support services are important to older people and their informal carers to inform the design of a discrete choice experiment (DCE). Semi-structured, face-to-face interviews were conducted in December 2012-November 2013 with 17 older people receiving home-based support services and 10 informal carers from 5 providers located in South Australia and New South Wales. Salient service characteristics important to participants were determined using thematic and constant comparative analysis and formulated into attributes and attribute levels for presentation within a DCE. Initially, eight broad themes were identified: information and knowledge, choice and control, self-managed continuum, effective co-ordination, effective communication, responsiveness and flexibility, continuity and planning. Attributes were formulated for the DCE by combining overlapping themes such as effective communication and co-ordination, and the self-managed continuum and planning into single attributes. Six salient service features that characterise consumer preferences for the provision of home-based support service models were identified: choice of provider, choice of support worker, flexibility in care activities provided, contact with the service co-ordinator, managing the budget and saving unspent funds. Best practice indicates that qualitative research with individuals who represent the population of interest should guide attribute selection for a DCE and this is the first study to employ such methods in aged care service provision. Further development of services could incorporate methods of consumer engagement such as DCEs which facilitate the identification and quantification of users' views and preferences on alternative models of delivery.

Factors that influence intent to adopt a hearing aid among older people in Italy.

Hearing loss is one of the most prevalent health impairments associated with ageing in developed countries, and it can result in social, emotional and communication dysfunction. Hearing loss in Italy is increasing, yet, despite the availability of free hearing aids and access to qualified community-based health professionals specialising in audiology services, their uptake remains low (about 15%-20%). This paper presents an investigation of the possible reasons why older people in Italy resist adopting a hearing aid. We used the literature to identify factors influencing people with hearing loss's decision-making, and drew on the theory of reasoned action to create an explanatory model. To test our hypotheses, we applied a cross-sectional design. We developed a questionnaire including 13 items related to adopting a hearing aid. Health professionals identified 400 persons aged 60-90 who were candidates for a free hearing aid. Those willing to participate were sent a copy of the questionnaire and telephoned between August and September 2009; a total of 243 responded (response rate of 60.8%). Linear regression analysis highlighted that a person's intention to adopt a hearing aid was positively related to their attitude towards its adoption, but negatively linked to their perceived subjective norms. It was found that trust in the health professional does not moderate the relationship between a person's attitude and their intention to adopt a hearing aid, but trust mitigates the relationship between a person's perceived subjective norms and their intentions. These findings underline the importance of the potential role that the healthcare professional could play in reducing the uncertainty created by external social pressures. For this purpose, stronger collaboration between the various health professionals involved in hearing aid provision, from diagnosis to fitting, is recommended.

Treating frailty--a practical guide.

Frailty is a common syndrome that is associated with vulnerability to poor health outcomes. Frail older people have increased risk of morbidity, institutionalization and death, resulting in burden to individuals, their families, health care services and society. Assessment and treatment of the frail individual provide many challenges to clinicians working with older people. Despite frailty being increasingly recognized in the literature, there is a paucity of direct evidence to guide interventions to reduce frailty. In this paper we review methods for identification of frailty in the clinical setting, propose a model for assessment of the frail older person and summarize the current best evidence for treating the frail older person. We provide an evidence-based framework that can be used to guide the diagnosis, assessment and treatment of frail older people.

Qualitative triadic study of the relational factors influencing the formation of quality in a community-based aged health care service network.

A service is produced through the interactions of the various service participants. This study aims to identify the factors that influence the interactions of the service providers, recipients, and enablers of a community-based aged health care service, within a single service network. Interviews were conducted with the manager, three care workers, and five clients using the convergent interview technique. Data were analyzed inductively using thematic content analysis. Client focus, client contribution, client empowerment, and provider empowerment were identified as key themes. Whilst these themes are independently supported by the literature, they have previously been studied largely in isolation to each other.