Measuring outcomes of community aged care programs: challenges, opportunities and the Australian Community Outcomes Measurement ACCOM tool

Measuring outcomes of community aged care programs: challenges, opportunities and the Australian... Measuring health and wellbeing outcomes of community aged care programs is a complex task given the diverse settings in which care takes place and the intersection of numerous factors affecting an individual’s quality of life outcomes. Knowledge of a strong causal relationship between services provided and the final outcome enables confidence in assuming the care provided was largely responsible for the outcome achieved (Courtney et al., Aust J Adv Nurs 26:49–57, 2009). The Department of Health has recently reported on the findings of The National Aged Care Quality Indicator Program – Home Care Pilot (KPMG, National Aged Care Quality Indicator Program – Home Care Pilot, 2017). The Program sought to test various tools to measure quality of life outcomes of their community aged care programs. Some of the key issues raised in the study reiterate the findings from The Australian Community Care Outcome Measurement (ACCOM) pilot study (Cardona et al., Australas J Ageing 36: 69–71, 2017), including the value of the ASCOT SCT4 tool (Adult Social care Outcomes Toolkit, http://www.pssru.ac.uk/ascot/downloads/questionnaires/sct4. pdf) to measure social care related quality of life (SCRQoL) in community aged care programs in the Australian context, the collection of additional data to map the relationship of various variables such as functional ability, demographic characteristics and quality of life scores and the governance and administration of measurement tools for the purpose of quality reporting and consumer choice. Keywords: Outcome measurement, Quality of life,ASCOT, ACCOM,Agedcare The aged care reforms and the role of outcomes transition from the Home and Community Care (HACC) in evaluation and the Community Aged Care Packages into the Com- The profound changes that have taken place in the monwealth Home Support Program (CHSP) and the aged care system in Australia have been rationalised Home Care Packages (HCP). as necessary to deliver better outcomes for older Individualised funding under Consumer Directed Care people and address the shortcoming of previous fund- (CDC) model has replaced block funding for the HCP ing and service delivery models. The direction taken program in order to address a perceived lack of choice by the reforms was broadly set in the 2011 Productiv- and flexibility on the type of programs and services ity Commission Report, Caring for Older Australians available for older people. CDC has been described as [1–5]. The Australian Government responded to this increasing consumer choice and flexibility, and in turn, report with the ‘Living Longer Living Better’ [6]re- improving wellbeing including higher life satisfaction, form package, which saw among other things, the greater life expectancy, independence and better con- introduction of a centralised entry point to aged care tinuity of care [5]. The move to marketisation and indi- services, individualised funding models, and the vidualisation in aged care follows similar reforms in other social policy areas in Australia informed by public choice theories. Public choice theory proposes that Correspondence: beatriz.cardona@mq.edu.au markets should lead to higher efficiency, better quality, Macquarie University, Sydney, Australia © The Author(s). 2018 Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated. Cardona Health and Quality of Life Outcomes (2018) 16:104 Page 2 of 6 greater diversity and less bureaucracy in the delivery of consumer experience and a combined tool based on two public services [7]. World Health Organisation Quality of Life questionnaires Assessing the effectiveness of these reforms ultimately (WHOQOL-BREF (OLD)) which measures quality of life. rests with the impact they have had on the individuals The study identified the ASCOT SCT4 tool as the accessing the services. But how to measure this impact re- most suitable instrument given its validity and useability. mains a challenge for various reasons. Impact indicators are It also recommended further research on its applicability multifaceted. Donabedian refers to three approaches to across multiple programs and the collection of demo- quality measurement and monitoring: structure, process graphic data to address impact of independent variables and outcome [8]. In community aged care the structural on outcomes. The collection of information on proxy re- measures assess inputs such as the number of staff available sponses and functional ability including cognitive cap- and training or the effectiveness of My Aged Care in provid- acity of respondents was also identified as important ing accurate and timely information and pathways to service given their potential impact on response bias and re- entry, etc., while process measures examine actual services sponse shift. The study also raised questions regarding or activities provided to consumers. Outcome measures are the implementation and governance of the tool as well focused on identifying the impacts of these services on the as future applicability in benchmarking given the volun- health, wellbeing and quality of life of consumers. tary character of service’ participation in outcome meas- Recent evaluations of My Aged Care for instance have urement recommended by the Department of Health. identified increased consumer satisfaction with the infor- The findings of the KPMG Care Pilot study in relation to mation, interactions with the Contact Centre and link- the suitability of the ASCOT SCT4 tool and the need for ages to services delivered through the online referral the collection of additional data including demographic in- system [9]. A review of My Aged Care by the Legislated formation support the findings of the Australian Commu- Review of Aged care in 2017 also identified various nity Care Outcome Measurement (ACCOM) pilot study shortcoming with having a single entry point into aged [12]. The study, conducted through a collaborative and part- care services which relies on consumers’ knowledge and nership research approach between the Australian Health skills in navigating the online website to search for Services Research Institute (AHSRI) at the University of services and choose providers. These formative evalua- Wollongong, Macquarie University, home and community tions, although important give us only a partial picture aged care service providers and the University of Kent, of the effectiveness of the reforms with the potential of tested the use of a modified ASCOT SCT4 tool completed prompting changes and improvements in processes to by consumers as well as case managers to measure social address its shortcoming. They however do not throw care related quality of life (SCRQoL) of consumers from light on the key question of the effectiveness of the multiple vantage points. The tool incorporated three key reforms in improving service outcomes for consumers. component measures identified for all consumers: The feasibility and validity of various tools to i. quality of life measures; measure outcomes and the ACCOM tool ii. functional measures of the capabilities and care To be able to demonstrate high standards and impact of needs; and services requires a focus on the outcomes of care – the iii. data on the basic demographics and living conditions. results or consequences of the interventions assistance provided to older people through the aged care pro- The use of the ASCOT was seen to have further bene- grams. This type of evaluation is however a complex fits, including the fact that it has been extensively tested undertaking, further complicated by uncertainty on the and revised, the validity and reliability of its scales is well current draft clinical and wellbeing indicators that would known and the psychometric properties of its instru- guide the Single Aged Care Quality Framework to be ments found to be reliable [13]. The functional aspects implemented in July 2018 [10]. Furthermore, there is no are based on the HACC Functional Screen and include current consensus as to what tools and methods should be mobility, housework, shopping, medication manage- used to measure the outcomes of services on consumers. ment, financial management, personal care, and, if A recent pilot study conducted by KPMG on behalf of The applicable, cognition and behavioural problems. It is a Department of Health sought to answer these questions by standardised instrument already used by most commu- testing 4 outcome tools for community care. The National nity care services and available data can be used to track Aged Care Quality Indicator Program – Home Care Pilot the capability of consumers to perform activities of daily [11] tested Goal Attainment Scaling (GAS) tool, the Adult living (ADLs). It is key indicator of a care recipient’s Social Care Outcomes Tool SCT4 (ASCOT SCT4), which needs for care and capacity to stay at home. Rather than measures consumer experience and quality of life, Your requiring new data to be collected, the Functional Experience of Services (YES) Survey, which measures Screen of the ACCOM is a standardised instrument that Cardona Health and Quality of Life Outcomes (2018) 16:104 Page 3 of 6 tracks the ability of consumers to perform activities of planning stage in response to feedback from case man- daily living (ADLs) over time. Functional ability (or cap- agers and community representatives who identified the ability) is a key indicator of a care recipient’s ability to stay importance of capturing not only consumers’ self- rating at home [14]. For many progressive and chronic diseases, on QoL domains but also case managers’ perspectives it is particularly important to understand functional abil- on consumer outcomes. Research on self-reported out- ities and limitations. Such information can assist service comes has highlighted the value of multiple vantage providers in understanding the needs of consumers points which can provide a more reliable estimate of around activities of daily living, their level of independ- change. Research on response shift in QoL appraisals ence and the potential impact of these factors in their supports the value of comparing self-reported change in overall sense of wellbeing, control and quality of life. QoL to other external measures of QoL change that are The combination of the functional screen with the cap- independent of consumer self-report including clinician abilities based framework of the ASCOT SCT4 four-level judgment, performance tests, or family caregiver ratings. self-report version allowed a more comprehensive collec- Collecting additional information such as demographic tion of health and social related QoL indicators reflecting data, was, as pointed out earlier, identified by the KPMG the wider range of services provided in the community age Home Care study, as important in order to ascertain at- care system in Australia. The Functional Screen tool also tribution and account for factors that could potentially allowed testing the level of functioning relationship to the impact on quality of life scores. The use of the Func- capabilities framework of the ASCOT SCT4 instrument, tional Screen in the ACCOM study allowed the examin- where the domains are phrased in the language of capabil- ation of links between the consumer responses to the ities at the high quality of life end of the spectrum and in SCRQoL domains and his/her functional capacity. For terms of functionings when reflecting lower quality of life. instance, as Fig. 1 indicates, in round 1 a higher propor- Demographic data, including age, income, living cir- tion of those with high levels of functioning reported the cumstances and cultural background was also utilised in most positive response possible in almost all the the ACCOM. This is already collected as part of service domains. While not unexpected, this suggests that QoL records for each consumer and updated where changes, responses also reflect the personal capacity of each con- such as death of spouse, occur. These additional ele- sumer to undertake tasks for her or himself [15]. ments enabled quality of life outcomes to be linked to The collection of demographic data in the ACCOM the capabilities, care needs and demographic characteris- tool allowed consideration of factors that could impact tics of consumers. The use of consumer’s and a case on QoL scores. For instance, the availability of an infor- managers’ (CM) version of SCT4 is an innovative com- mal carer to provide support was shown to have affected ponent of the ACCOM tool. It was introduced at the QoL scores of consumers. In most cases the carer was a Fig. 1 Consumers who selected the most positive response for each QoL Item by functional score in round 1 (n = 227) Cardona Health and Quality of Life Outcomes (2018) 16:104 Page 4 of 6 spouse, partner, daughter of other family member. As capabilities and demography can assist in understanding Fig. 2 indicates, there were slightly fewer consumers the links between the QoL experienced by consumers who selected the highest category of most QoL domains and factors that may influence it, such as the type and amongst those who had a carer than those without – a amount of services provided, the health and overall level finding that at first seems unexpected. The explanation of needs of the consumers concerned, as well as the that seems most likely is that those who depend on availability and importance of informal social support. carers are more likely to require high levels of ongoing Regarding the data collection and data submission, assistance and be less capable of undertaking activities there are a few considerations worth noting. The KPMG independently than those who are without a carer [12]. Home Care Pilot recommended various strategies The introduction of a consumer as well as a case man- including the use of online data collection tools. This ager perspective on consumers’ QoL in the ACCOM method, although effective in reducing administrative tool was an innovative component of the study. It burden, could potentially limit the number of responses generated useful information on the value of multiple given the challenges some consumers face when using vantage points when measuring consumers SCRQoL. online tools. The ACCOM study recommended the use The ASCOT SCT4 tool was designed to collect the per- of paper based surveys with a self-return envelope sent spectives from consumers only, (it should be completed to a centralised outcome evaluation centre which will individually) and differs in this way from other forms of enter, analyse and report on the data. Such process the ASCOT, such as those used in residential care, ensures the integrity and robustness of the system to intended to be completed face to face by staff together enable service providers to demonstrate their ability to with facility residents. It was interesting, for instance, to deliver high quality care that meets the health and qual- note the positive correlation between client and case ity of life needs of their consumers. manager Social Care Related Quality of Life Scores in round 1 (r = 0.408, n = 199). In round 2, the level of cor- Conclusion relation was lower (r = 0.276, n = 118). The study identi- Meeting the objectives of The National Aged Care Qual- fied the need for further analysis and testing of the ity Indicator Program which are to give consumers ACCOM to investigate the extent to which differences transparent, comparable information about quality in in client and case manager responses reflect significant aged care and for providers to have robust, valid data to subjective differences or other considerations. measure and monitor their performance and support As the above discussion indicates, exploring the QoL continuous quality improvement [16] is a complex and data, derived from the ASCOT component of the challenging task. The KPMG Home Care Pilot and the ACCOM, and examining correlations with functional ACCOM study highlighted important methodological Fig. 2 Consumers who selected the most positive response for each QoL Item by availability of carer in round 1 Cardona Health and Quality of Life Outcomes (2018) 16:104 Page 5 of 6 and governance considerations including the choice of Availability of data and materials The data and material used in this paper comes from the findings of the instruments and the value of collecting functional and ACCOM study published in 2017. Data supporting the results of the ACCOM demographic data to explain possible links and factors study can be found in the following publication: Cardona B, Fine M, Stebbing A, accounting for quality of life scores and therefore be able Duncan C, Samsa P, and Eagar K. Measuring consumer outcomes: Development and testing of the Australian Community Care Outcomes Measure. Australasian to ascertain change or impact that can be attributed to Journal on Ageing, 2017; 36(1): 69–71. service provision. The studies also called for caution be- fore implementing nation-wide outcome measurement Author’s contributions The author read and approved the final manuscript. programs. The research is not yet conclusive regarding the appropriateness of the ACCOM and ASCOT tools Ethics approval and consent to participate for different cohorts including older people with cogni- The ACCOM study which this paper refers to received ethics approval from the Human Ethics Committee at Macquarie University. The research protocols tive impairment, from Culturally and Linguistically Di- for the field trial were reviewed by the Macquarie University Human Ethics verse (CALD) backgrounds and Indigenous people. Committee and were performed in accordance with the ethical standards laid There is also a need for further research looking at the down the Declaration of Helsinki (as revised, 2013). All persons participating in the research gave their informed consent prior to their inclusion in the study. appropriateness of the ASCOT tool for the Australian aged care context. Also we need further exploration of Competing interests older Australian’s perceptions of what constitutes quality The author declares that she has no competing interests. of life and the extent to which aged care services can support the achievement of these objectives. Research in Publisher’sNote Springer Nature remains neutral with regard to jurisdictional claims in Australia suggests that older adults value both health published maps and institutional affiliations. and social domains as important to their overall quality of life [17]. Further information is needed to ascertain Received: 2 January 2018 Accepted: 30 April 2018 the relationship between health status and wellbeing, es- pecially when considering the compensatory rather than References restorative character of services provided for older 1. Courtney M, O’Reilly M, Edwards HE, Hassall S. The relationship between clinical outcomes and quality of life for residents of aged care facilities. Aust people at home. J Adv Nurs. 2009;26(4):49–57. Equally important there are still unresolved issues asso- 2. KPMG, National Aged Care Quality Indicator Program–Home Care Pilot ciated with the collection and management of the data. As (2017). https://agedcare.health.gov.au/sites/g/files/net1426/f/documents/06_ 2017/ceqol_home_key_findings_and_outcomes_final_31_may_2017.pdf. mentioned earlier, it is essential to ensure the integrity 3. Cardona B, Fine M, Stebbing A, Duncan C, Samsa P, Eagar K. Measuring and validity of the findings through the establishment of consumer outcomes: development and testing of the Australian robust and independent systems to collect, analyse and Community Care Outcomes Measure. Australas J Ageing. 2017;36(1):69–71. https://doi.org/10.1111/ajag.12377. report on the data. Such system would require investment 4. Adult Social care Outcomes Toolkit, http://www.pssru.ac.uk/ascot/down in human capital and technological structures capable of loads/questionnaires/sct4.pdf exporting functional and demographic data collected 5. Productivity Commission Inquiry Report, Caring for older Australians, (2011). https://www.pc.gov.au/inquiries/completed/aged-care/report/aged-care- during assessment and care planning. overview-booklet.pdf. More importantly, any outcome evaluation tools and 6. Australian Government, (2012). Response to the senate community affairs findings need to be meaningful, and valid appraisals of the legislation committee report on the: aged care (living longer living better) Bill2013 [provisions] and related bills, File:///C:/Users/31000851/Downloads/ impact services have on the health, wellbeing and quality gov_response.pdf. of life of consumers. They also need to provide services 7. Mulkeen M. Going to market! An exploration of markets in social care. with useful and reliable information on the value and Administration. 2016;64(2):33–59. 8. Donabedian A. Explorations in quality assessment and monitoring: the impact of their programs. This is particularly important definition of quality and approaches to its assessment. Ann Arbor: Health when wellness, reablement and consumer choice is being Administration Press; 1980. legislated in program planning and delivery. 9. Healthdirect Australia (2017). My aged care evaluation: stage two wave 2 summary of findings–final date: August https://agedcare.health.gov.au/… 2017/healthdirectaustralia-amr-myagedcare-stage2-w. Abbreviations 10. Department of Health. National aged care quality indicator program. ACCOM: Australian community care outcomes measurement; ADL: Activities https://agedcare.health.gov.au/ensuring-quality/quality-indicators/about-the- of daily living; ASCOT: Adult Social Care Outcomes Toolkit; CDC: Consumer national-aged-care-quality-indicator-programme. Accessed 1 Dec 2017. directed choice; CHSP: Commonwealth Home Support Program; EQ-5D: EuroQol 11. KPMG, National Aged Care Quality Indicator Program–Home Care Pilot, -5Dimensions;GAS:Goalattainmentscale;HACC: Home andcommunity care; 2017. HCP: Home Care Packages; ICECAP-O: ICEpop CAPability measure for Older 12. Cardona B, Fine M, Stebbing A, Duncan C, Samsa P, Eagar K. Measuring people; SQRQoL: Social care related quality of life; WHOQoL-Old: World Health consumer outcomes: development and testing of the Australian Organisation Quality of Life Instrument-Older Adults Module; YES: Your Community Care Outcomes Measure. Australas J Ageing. 2017;36(1):69–71. Experience of Services 13. Cardona B, Fine M, Stebbing A, Duncan C, Samsa P, Eagar K. Measuring consumer outcomes: development and testing of the Australian Community Care Outcomes Measure. Australas J Ageing. 2017;36(1):36. Acknowledgements 14. Cardona B, Fine M, Stebbing A, Duncan C, Samsa P, Eagar K. Measuring I would like to thank Professor Michael Fine for his helpful comments on a consumer outcomes: development and testing of the Australian previous version of this paper. Community Care Outcomes Measure. Australas J Ageing. 2017;36(1):45. Cardona Health and Quality of Life Outcomes (2018) 16:104 Page 6 of 6 15. Cardona B, Fine M, Stebbing A, Duncan C, Samsa P, Eagar K. Measuring consumer outcomes: development and testing of the Australian Community Care Outcomes Measure. Australas J Ageing. 2017;36(1):46. 16. Department of Health. About the national aged care quality indicator program. https://agedcare.health.gov.au/ensuring-quality/quality-indicators/about-the- national-aged-care-quality-indicator-programme. Accessed 1 Dec 2017. 17. Milte C, Walker R, Luszcz MA, Lancsar E, Kaambwa B, Ratcliffe J. How important is health status in defining quality of life for older people? An exploratory study of the views of older South Australians. Appl Health Econ Health Policy. 2014;12(1):73–84. http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png Health and Quality of Life Outcomes Springer Journals

Measuring outcomes of community aged care programs: challenges, opportunities and the Australian Community Outcomes Measurement ACCOM tool

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Medicine & Public Health; Quality of Life Research; Quality of Life Research
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Abstract

Measuring health and wellbeing outcomes of community aged care programs is a complex task given the diverse settings in which care takes place and the intersection of numerous factors affecting an individual’s quality of life outcomes. Knowledge of a strong causal relationship between services provided and the final outcome enables confidence in assuming the care provided was largely responsible for the outcome achieved (Courtney et al., Aust J Adv Nurs 26:49–57, 2009). The Department of Health has recently reported on the findings of The National Aged Care Quality Indicator Program – Home Care Pilot (KPMG, National Aged Care Quality Indicator Program – Home Care Pilot, 2017). The Program sought to test various tools to measure quality of life outcomes of their community aged care programs. Some of the key issues raised in the study reiterate the findings from The Australian Community Care Outcome Measurement (ACCOM) pilot study (Cardona et al., Australas J Ageing 36: 69–71, 2017), including the value of the ASCOT SCT4 tool (Adult Social care Outcomes Toolkit, http://www.pssru.ac.uk/ascot/downloads/questionnaires/sct4. pdf) to measure social care related quality of life (SCRQoL) in community aged care programs in the Australian context, the collection of additional data to map the relationship of various variables such as functional ability, demographic characteristics and quality of life scores and the governance and administration of measurement tools for the purpose of quality reporting and consumer choice. Keywords: Outcome measurement, Quality of life,ASCOT, ACCOM,Agedcare The aged care reforms and the role of outcomes transition from the Home and Community Care (HACC) in evaluation and the Community Aged Care Packages into the Com- The profound changes that have taken place in the monwealth Home Support Program (CHSP) and the aged care system in Australia have been rationalised Home Care Packages (HCP). as necessary to deliver better outcomes for older Individualised funding under Consumer Directed Care people and address the shortcoming of previous fund- (CDC) model has replaced block funding for the HCP ing and service delivery models. The direction taken program in order to address a perceived lack of choice by the reforms was broadly set in the 2011 Productiv- and flexibility on the type of programs and services ity Commission Report, Caring for Older Australians available for older people. CDC has been described as [1–5]. The Australian Government responded to this increasing consumer choice and flexibility, and in turn, report with the ‘Living Longer Living Better’ [6]re- improving wellbeing including higher life satisfaction, form package, which saw among other things, the greater life expectancy, independence and better con- introduction of a centralised entry point to aged care tinuity of care [5]. The move to marketisation and indi- services, individualised funding models, and the vidualisation in aged care follows similar reforms in other social policy areas in Australia informed by public choice theories. Public choice theory proposes that Correspondence: beatriz.cardona@mq.edu.au markets should lead to higher efficiency, better quality, Macquarie University, Sydney, Australia © The Author(s). 2018 Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated. Cardona Health and Quality of Life Outcomes (2018) 16:104 Page 2 of 6 greater diversity and less bureaucracy in the delivery of consumer experience and a combined tool based on two public services [7]. World Health Organisation Quality of Life questionnaires Assessing the effectiveness of these reforms ultimately (WHOQOL-BREF (OLD)) which measures quality of life. rests with the impact they have had on the individuals The study identified the ASCOT SCT4 tool as the accessing the services. But how to measure this impact re- most suitable instrument given its validity and useability. mains a challenge for various reasons. Impact indicators are It also recommended further research on its applicability multifaceted. Donabedian refers to three approaches to across multiple programs and the collection of demo- quality measurement and monitoring: structure, process graphic data to address impact of independent variables and outcome [8]. In community aged care the structural on outcomes. The collection of information on proxy re- measures assess inputs such as the number of staff available sponses and functional ability including cognitive cap- and training or the effectiveness of My Aged Care in provid- acity of respondents was also identified as important ing accurate and timely information and pathways to service given their potential impact on response bias and re- entry, etc., while process measures examine actual services sponse shift. The study also raised questions regarding or activities provided to consumers. Outcome measures are the implementation and governance of the tool as well focused on identifying the impacts of these services on the as future applicability in benchmarking given the volun- health, wellbeing and quality of life of consumers. tary character of service’ participation in outcome meas- Recent evaluations of My Aged Care for instance have urement recommended by the Department of Health. identified increased consumer satisfaction with the infor- The findings of the KPMG Care Pilot study in relation to mation, interactions with the Contact Centre and link- the suitability of the ASCOT SCT4 tool and the need for ages to services delivered through the online referral the collection of additional data including demographic in- system [9]. A review of My Aged Care by the Legislated formation support the findings of the Australian Commu- Review of Aged care in 2017 also identified various nity Care Outcome Measurement (ACCOM) pilot study shortcoming with having a single entry point into aged [12]. The study, conducted through a collaborative and part- care services which relies on consumers’ knowledge and nership research approach between the Australian Health skills in navigating the online website to search for Services Research Institute (AHSRI) at the University of services and choose providers. These formative evalua- Wollongong, Macquarie University, home and community tions, although important give us only a partial picture aged care service providers and the University of Kent, of the effectiveness of the reforms with the potential of tested the use of a modified ASCOT SCT4 tool completed prompting changes and improvements in processes to by consumers as well as case managers to measure social address its shortcoming. They however do not throw care related quality of life (SCRQoL) of consumers from light on the key question of the effectiveness of the multiple vantage points. The tool incorporated three key reforms in improving service outcomes for consumers. component measures identified for all consumers: The feasibility and validity of various tools to i. quality of life measures; measure outcomes and the ACCOM tool ii. functional measures of the capabilities and care To be able to demonstrate high standards and impact of needs; and services requires a focus on the outcomes of care – the iii. data on the basic demographics and living conditions. results or consequences of the interventions assistance provided to older people through the aged care pro- The use of the ASCOT was seen to have further bene- grams. This type of evaluation is however a complex fits, including the fact that it has been extensively tested undertaking, further complicated by uncertainty on the and revised, the validity and reliability of its scales is well current draft clinical and wellbeing indicators that would known and the psychometric properties of its instru- guide the Single Aged Care Quality Framework to be ments found to be reliable [13]. The functional aspects implemented in July 2018 [10]. Furthermore, there is no are based on the HACC Functional Screen and include current consensus as to what tools and methods should be mobility, housework, shopping, medication manage- used to measure the outcomes of services on consumers. ment, financial management, personal care, and, if A recent pilot study conducted by KPMG on behalf of The applicable, cognition and behavioural problems. It is a Department of Health sought to answer these questions by standardised instrument already used by most commu- testing 4 outcome tools for community care. The National nity care services and available data can be used to track Aged Care Quality Indicator Program – Home Care Pilot the capability of consumers to perform activities of daily [11] tested Goal Attainment Scaling (GAS) tool, the Adult living (ADLs). It is key indicator of a care recipient’s Social Care Outcomes Tool SCT4 (ASCOT SCT4), which needs for care and capacity to stay at home. Rather than measures consumer experience and quality of life, Your requiring new data to be collected, the Functional Experience of Services (YES) Survey, which measures Screen of the ACCOM is a standardised instrument that Cardona Health and Quality of Life Outcomes (2018) 16:104 Page 3 of 6 tracks the ability of consumers to perform activities of planning stage in response to feedback from case man- daily living (ADLs) over time. Functional ability (or cap- agers and community representatives who identified the ability) is a key indicator of a care recipient’s ability to stay importance of capturing not only consumers’ self- rating at home [14]. For many progressive and chronic diseases, on QoL domains but also case managers’ perspectives it is particularly important to understand functional abil- on consumer outcomes. Research on self-reported out- ities and limitations. Such information can assist service comes has highlighted the value of multiple vantage providers in understanding the needs of consumers points which can provide a more reliable estimate of around activities of daily living, their level of independ- change. Research on response shift in QoL appraisals ence and the potential impact of these factors in their supports the value of comparing self-reported change in overall sense of wellbeing, control and quality of life. QoL to other external measures of QoL change that are The combination of the functional screen with the cap- independent of consumer self-report including clinician abilities based framework of the ASCOT SCT4 four-level judgment, performance tests, or family caregiver ratings. self-report version allowed a more comprehensive collec- Collecting additional information such as demographic tion of health and social related QoL indicators reflecting data, was, as pointed out earlier, identified by the KPMG the wider range of services provided in the community age Home Care study, as important in order to ascertain at- care system in Australia. The Functional Screen tool also tribution and account for factors that could potentially allowed testing the level of functioning relationship to the impact on quality of life scores. The use of the Func- capabilities framework of the ASCOT SCT4 instrument, tional Screen in the ACCOM study allowed the examin- where the domains are phrased in the language of capabil- ation of links between the consumer responses to the ities at the high quality of life end of the spectrum and in SCRQoL domains and his/her functional capacity. For terms of functionings when reflecting lower quality of life. instance, as Fig. 1 indicates, in round 1 a higher propor- Demographic data, including age, income, living cir- tion of those with high levels of functioning reported the cumstances and cultural background was also utilised in most positive response possible in almost all the the ACCOM. This is already collected as part of service domains. While not unexpected, this suggests that QoL records for each consumer and updated where changes, responses also reflect the personal capacity of each con- such as death of spouse, occur. These additional ele- sumer to undertake tasks for her or himself [15]. ments enabled quality of life outcomes to be linked to The collection of demographic data in the ACCOM the capabilities, care needs and demographic characteris- tool allowed consideration of factors that could impact tics of consumers. The use of consumer’s and a case on QoL scores. For instance, the availability of an infor- managers’ (CM) version of SCT4 is an innovative com- mal carer to provide support was shown to have affected ponent of the ACCOM tool. It was introduced at the QoL scores of consumers. In most cases the carer was a Fig. 1 Consumers who selected the most positive response for each QoL Item by functional score in round 1 (n = 227) Cardona Health and Quality of Life Outcomes (2018) 16:104 Page 4 of 6 spouse, partner, daughter of other family member. As capabilities and demography can assist in understanding Fig. 2 indicates, there were slightly fewer consumers the links between the QoL experienced by consumers who selected the highest category of most QoL domains and factors that may influence it, such as the type and amongst those who had a carer than those without – a amount of services provided, the health and overall level finding that at first seems unexpected. The explanation of needs of the consumers concerned, as well as the that seems most likely is that those who depend on availability and importance of informal social support. carers are more likely to require high levels of ongoing Regarding the data collection and data submission, assistance and be less capable of undertaking activities there are a few considerations worth noting. The KPMG independently than those who are without a carer [12]. Home Care Pilot recommended various strategies The introduction of a consumer as well as a case man- including the use of online data collection tools. This ager perspective on consumers’ QoL in the ACCOM method, although effective in reducing administrative tool was an innovative component of the study. It burden, could potentially limit the number of responses generated useful information on the value of multiple given the challenges some consumers face when using vantage points when measuring consumers SCRQoL. online tools. The ACCOM study recommended the use The ASCOT SCT4 tool was designed to collect the per- of paper based surveys with a self-return envelope sent spectives from consumers only, (it should be completed to a centralised outcome evaluation centre which will individually) and differs in this way from other forms of enter, analyse and report on the data. Such process the ASCOT, such as those used in residential care, ensures the integrity and robustness of the system to intended to be completed face to face by staff together enable service providers to demonstrate their ability to with facility residents. It was interesting, for instance, to deliver high quality care that meets the health and qual- note the positive correlation between client and case ity of life needs of their consumers. manager Social Care Related Quality of Life Scores in round 1 (r = 0.408, n = 199). In round 2, the level of cor- Conclusion relation was lower (r = 0.276, n = 118). The study identi- Meeting the objectives of The National Aged Care Qual- fied the need for further analysis and testing of the ity Indicator Program which are to give consumers ACCOM to investigate the extent to which differences transparent, comparable information about quality in in client and case manager responses reflect significant aged care and for providers to have robust, valid data to subjective differences or other considerations. measure and monitor their performance and support As the above discussion indicates, exploring the QoL continuous quality improvement [16] is a complex and data, derived from the ASCOT component of the challenging task. The KPMG Home Care Pilot and the ACCOM, and examining correlations with functional ACCOM study highlighted important methodological Fig. 2 Consumers who selected the most positive response for each QoL Item by availability of carer in round 1 Cardona Health and Quality of Life Outcomes (2018) 16:104 Page 5 of 6 and governance considerations including the choice of Availability of data and materials The data and material used in this paper comes from the findings of the instruments and the value of collecting functional and ACCOM study published in 2017. Data supporting the results of the ACCOM demographic data to explain possible links and factors study can be found in the following publication: Cardona B, Fine M, Stebbing A, accounting for quality of life scores and therefore be able Duncan C, Samsa P, and Eagar K. Measuring consumer outcomes: Development and testing of the Australian Community Care Outcomes Measure. Australasian to ascertain change or impact that can be attributed to Journal on Ageing, 2017; 36(1): 69–71. service provision. The studies also called for caution be- fore implementing nation-wide outcome measurement Author’s contributions The author read and approved the final manuscript. programs. The research is not yet conclusive regarding the appropriateness of the ACCOM and ASCOT tools Ethics approval and consent to participate for different cohorts including older people with cogni- The ACCOM study which this paper refers to received ethics approval from the Human Ethics Committee at Macquarie University. The research protocols tive impairment, from Culturally and Linguistically Di- for the field trial were reviewed by the Macquarie University Human Ethics verse (CALD) backgrounds and Indigenous people. Committee and were performed in accordance with the ethical standards laid There is also a need for further research looking at the down the Declaration of Helsinki (as revised, 2013). All persons participating in the research gave their informed consent prior to their inclusion in the study. appropriateness of the ASCOT tool for the Australian aged care context. Also we need further exploration of Competing interests older Australian’s perceptions of what constitutes quality The author declares that she has no competing interests. of life and the extent to which aged care services can support the achievement of these objectives. Research in Publisher’sNote Springer Nature remains neutral with regard to jurisdictional claims in Australia suggests that older adults value both health published maps and institutional affiliations. and social domains as important to their overall quality of life [17]. Further information is needed to ascertain Received: 2 January 2018 Accepted: 30 April 2018 the relationship between health status and wellbeing, es- pecially when considering the compensatory rather than References restorative character of services provided for older 1. Courtney M, O’Reilly M, Edwards HE, Hassall S. The relationship between clinical outcomes and quality of life for residents of aged care facilities. Aust people at home. J Adv Nurs. 2009;26(4):49–57. Equally important there are still unresolved issues asso- 2. KPMG, National Aged Care Quality Indicator Program–Home Care Pilot ciated with the collection and management of the data. As (2017). https://agedcare.health.gov.au/sites/g/files/net1426/f/documents/06_ 2017/ceqol_home_key_findings_and_outcomes_final_31_may_2017.pdf. mentioned earlier, it is essential to ensure the integrity 3. Cardona B, Fine M, Stebbing A, Duncan C, Samsa P, Eagar K. Measuring and validity of the findings through the establishment of consumer outcomes: development and testing of the Australian robust and independent systems to collect, analyse and Community Care Outcomes Measure. Australas J Ageing. 2017;36(1):69–71. https://doi.org/10.1111/ajag.12377. report on the data. Such system would require investment 4. Adult Social care Outcomes Toolkit, http://www.pssru.ac.uk/ascot/down in human capital and technological structures capable of loads/questionnaires/sct4.pdf exporting functional and demographic data collected 5. Productivity Commission Inquiry Report, Caring for older Australians, (2011). https://www.pc.gov.au/inquiries/completed/aged-care/report/aged-care- during assessment and care planning. overview-booklet.pdf. More importantly, any outcome evaluation tools and 6. Australian Government, (2012). Response to the senate community affairs findings need to be meaningful, and valid appraisals of the legislation committee report on the: aged care (living longer living better) Bill2013 [provisions] and related bills, File:///C:/Users/31000851/Downloads/ impact services have on the health, wellbeing and quality gov_response.pdf. of life of consumers. They also need to provide services 7. Mulkeen M. Going to market! An exploration of markets in social care. with useful and reliable information on the value and Administration. 2016;64(2):33–59. 8. Donabedian A. Explorations in quality assessment and monitoring: the impact of their programs. This is particularly important definition of quality and approaches to its assessment. Ann Arbor: Health when wellness, reablement and consumer choice is being Administration Press; 1980. legislated in program planning and delivery. 9. Healthdirect Australia (2017). My aged care evaluation: stage two wave 2 summary of findings–final date: August https://agedcare.health.gov.au/… 2017/healthdirectaustralia-amr-myagedcare-stage2-w. Abbreviations 10. Department of Health. National aged care quality indicator program. ACCOM: Australian community care outcomes measurement; ADL: Activities https://agedcare.health.gov.au/ensuring-quality/quality-indicators/about-the- of daily living; ASCOT: Adult Social Care Outcomes Toolkit; CDC: Consumer national-aged-care-quality-indicator-programme. Accessed 1 Dec 2017. directed choice; CHSP: Commonwealth Home Support Program; EQ-5D: EuroQol 11. KPMG, National Aged Care Quality Indicator Program–Home Care Pilot, -5Dimensions;GAS:Goalattainmentscale;HACC: Home andcommunity care; 2017. HCP: Home Care Packages; ICECAP-O: ICEpop CAPability measure for Older 12. Cardona B, Fine M, Stebbing A, Duncan C, Samsa P, Eagar K. Measuring people; SQRQoL: Social care related quality of life; WHOQoL-Old: World Health consumer outcomes: development and testing of the Australian Organisation Quality of Life Instrument-Older Adults Module; YES: Your Community Care Outcomes Measure. Australas J Ageing. 2017;36(1):69–71. Experience of Services 13. Cardona B, Fine M, Stebbing A, Duncan C, Samsa P, Eagar K. Measuring consumer outcomes: development and testing of the Australian Community Care Outcomes Measure. Australas J Ageing. 2017;36(1):36. Acknowledgements 14. Cardona B, Fine M, Stebbing A, Duncan C, Samsa P, Eagar K. Measuring I would like to thank Professor Michael Fine for his helpful comments on a consumer outcomes: development and testing of the Australian previous version of this paper. Community Care Outcomes Measure. Australas J Ageing. 2017;36(1):45. Cardona Health and Quality of Life Outcomes (2018) 16:104 Page 6 of 6 15. Cardona B, Fine M, Stebbing A, Duncan C, Samsa P, Eagar K. Measuring consumer outcomes: development and testing of the Australian Community Care Outcomes Measure. Australas J Ageing. 2017;36(1):46. 16. Department of Health. About the national aged care quality indicator program. https://agedcare.health.gov.au/ensuring-quality/quality-indicators/about-the- national-aged-care-quality-indicator-programme. Accessed 1 Dec 2017. 17. Milte C, Walker R, Luszcz MA, Lancsar E, Kaambwa B, Ratcliffe J. How important is health status in defining quality of life for older people? An exploratory study of the views of older South Australians. Appl Health Econ Health Policy. 2014;12(1):73–84.

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Health and Quality of Life OutcomesSpringer Journals

Published: May 29, 2018

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