Has Consumer Directed Care improved the quality of life of older Australians? Professor Julie Ratcliffe School of Medicine Flinders University

Has Consumer Directed Care improved the quality of life of older Australians? Professor Julie Ratcliffe School of Medicine Flinders University

Acknowledgments: ARC Linkage Project A Health Economics Model for Evaluating CDC in CACS To help protect your privacy, PowerPoint has blocked automatic download of this picture.

What is CDC Consumer Directed Care: underlying philosophy is to promote consumer choice and autonomy in decisionmaking in relation to their care needs In reality CDC models of care internationally have ranged along a continuum from self directed care to cash for care schemes In Australia CACS currently characterized by self directed care whereby financial control and accountability is retained by the service provider

Quality of life: the ultimate outcome for consumers Process: Consumer Directed Care Outcome: Quality of life (health status, HrQoL, wellness, wellbeing)

Objectives To assess the impact of CDC on the quality of life (QoL) of older Australians Internationally limited evidence and mixed findings. Largest study to date of CDC approach personalised budgets in UK found no improvement in quality of life and increased anxiety levels for older people [Glendenning 2008]. Evidence from the US to assess the effectiveness of cash and counselling indicated positive wellbeing benefits for older people [Carlsson et al 2007]

Methods Study samples: Eligibility: 60+ years, capable of providing informed consent and responding to survey, living in the community, in receipt of a HCP from our aged care partners Timing: Sept 2015 Jan 2016. Snap shot assessment, variation in length of exposure to CDC (less than and more than 12 months) Quality of life instruments: For economic evaluation generic & preference based is preferred: EQ 5D is currently the most widely used instrument internationally

EuroQol-5D Tick one answer in each group below to indicate your health state today. Mobility: I have no problems in walking around I have some problems in walking around I am confined to bed Self-Care: I have no problems with self-care I have some problems washing or dressing myself I am unable to wash or dress myself Usual Activities: I have no problems with performing my usual activities I have some problems with performing my usual activities I am unable to perform my usual activities Pain/Discomfort: I have no pain or discomfort I have moderate pain or discomfort I have extreme pain or discomfort Anxiety/Depression: I am not anxious or depressed I am moderately anxious or depressed I am extremely anxious or depressed Please go to http://www.euroqol.org/ for registration and permission to use details 7

Comparison of Aus./UK EQ 5D Values Health state Aus. Value UKvalue 11111 1 1 11112 0.798 0.848 11113 0.498 0.414 21133 0.166 0.041 21211 0.774 0.814 21212 0.677 0.743 21213 0.377 0.309 31223 0.017 0.059 31231 0.111 0.086 33313 0.137 0.208 33333 0.217 0.594 8

EQ 5D 5L descriptive system Under each heading, please tick the ONE box that best describes your health TODAY MOBILITY I have no problems in walking about I have slight problems in walking about I have moderate problems in walking about I have severe problems in walking about I am unable to walk about SELF-CARE I have no problems washing or dressing myself I have slight problems washing or dressing myself I have moderate problems washing or dressing myself I have severe problems washing or dressing myself I am unable to wash or dress myself USUAL ACTIVITIES (e.g. work, study, housework, family or leisure activities) I have no problems doing my usual activities I have slight problems doing my usual activities I have moderate problems doing my usual activities I have severe problems doing my usual activities I am unable to do my usual activities PAIN / DISCOMFORT I have no pain or discomfort I have slight pain or discomfort I have moderate pain or discomfort I have severe pain or discomfort I have extreme pain or discomfort ANXIETY / DEPRESSION I am not anxious or depressed I am slightly anxious or depressed I am moderately anxious or depressed I am severely anxious or depressed I am extremely anxious or depressed Please go to http://www.euroqol.org/ for registration and permission to use details

Defining quality of life for older people [1] [Ref: Milte C, Walker R, Luszcz M, Lancsar E, Kaambwa B, Ratcliffe J (2014). How important is health status in defining quality of life for older people? An exploratory study of the views of older South Australians. Applied Health Economics and Health Policy.12(1):73 84] Quality of life domains Health I am healthy enough to get out and about Social relationships My family, friends or neighbours would help me if needed Independence, control over life, freedom I am healthy enough to have my independence I can please myself what I do Home and neighbourhood I feel safe where I live I can please myself what I do Psychological and emotional well being I take life as it comes and make the best of things I feel lucky compared to most people Financial circumstances I have enough money to pay household bills Leisure and activities I have social or leisure activities/hobbies that I enjoy doing I try to stay involved with things

Defining quality of life for older people [2] [Ref: Ratcliffe J, Lancsar E, Flint T et al (2016). Does one size fit all? Assessing the preferences of older and younger people for attributes of quality of life. Quality of Life Research Forthcoming] SLEEP Being able to sleep without difficulty most of the time PAIN Having no pain or discomfort INDEPENDENCE Being able to spend your time as you want, doing thing you value and enjoy PHYSICAL MOBILITY Being able to get around your home and community by yourself without any difficulty MENTAL HEALTH Not feeling anxious, worried or depressed CONTROL Having as much control over your daily life as you would want SELF CARE Feeling clean and being able to present yourself in the way you like VISION Being able to see normally HEARING Being able to hear normally SAFETY Feeling as safe as you want SOCIAL RELATIONSHIPS Having as much social contact as you want with people you like DIGNITY Having help which makes you think and feel better about yourself

Defining quality of life for older people [2] [Ref: Ratcliffe J, Lancsar E, Flint T, Kaambwa B, Walker R, Lewin G, Luszcz M, Cameron I (2016). Does one size fit all? Assessing the preferences of older and younger people for attributes of quality of life. Quality of Life Research Forthcoming] Figure 1: Relative importance of quality of life dimensions by ranking task (WB= well being, HS = health status) 14.00 12.00 10.00 8.00 6.00 4.00 2.00 0.00 Domain Younger Domain Older

Alternatives to the EQ 5D Several older person specific quality of life indicators exist however relatively few are preference based and therefore amenable for economic evaluation ASCOT: social care related quality of life [Netten et al 2012] ASCOT and healthy ageing: ASCOT is focused on care related attributes insensitive to physical health for HrQoL (reablement, restorative care, wellness interventions) Increasingly many interventions in aged care are designed to impact upon HrQoL New instrument: the OVQOL Older People s Values in Quality of Life developed from its inception with older Australians and incorporating their values into QALY s for economic evaluation

The Capability paradigm Offers an alternative paradigm to the QALY for assessing quality of life ICECAP O instrument (Coast et al 2008) Based on Sen s theory of capability ICECAP has five dimensions (attachment, security, role, enjoyment, control) with four levels in each dimension Scored using 0=no capability to 1=full capability scale

ICECAP O descriptive system Attachment I can have all of the love and friendship that I want I can have some of the love and friendship that I want I can have a little of the love and friendship that I want I cannot have any of the love and friendship that I want Security I can think about the future without any concern I can think about the future with only a little concern I can only think about the future with some concern I can only think about the future with a lot of concern Role I am able to do all of the things that make me feel valued I am able to do many of the things that make me feel valued I am able to do a few of the things that make me feel valued I am unable to do any of the things that make me feel valued Enjoyment I can have all of the enjoyment and pleasure that I want I can have a lot of the enjoyment and pleasure that I want I can have a little of the enjoyment and pleasure that I want I cannot have any of the enjoyment and pleasure that I want Control I am able to be completely independent I am able to be independent in many things I am able to be independent in a few things I am unable to be at all independent Please go to http://www.birmingham.ac.uk/research/activity/mds/projects/haps/he/icecap/index.aspx for registration and permission to use details

Results: Socio demographics Characteristic CDC < 12 months (n=101) Age [Mean(sd ); Median(range)] 83.57 (7.28); (80,88) Age category CDC > 12 months (n=49) 80.82 (7.12); (78,87) Total (N=150) 82.67 (7.32); 83.50 (78,87) p-value 65-79 years 25(25%) 22(45%) 47(31%) 0.01 80+ years 76(75%) 27(55%) 108(69%) Gender 0.85 Male 29(35%) 17(36%) 50(34%) Female 55(65%) 30(64%) 95(66%) Birthplace 0.71 Australia 60(71%) 35(74%) 107(74%) Other 24(29%) 12(26%) 38(26%) Living arrangement 0.10 On your own 58(70%) 26(55%) 95(66%) With spouse or other family 25(30%) 21(45%) 49(34%) Have informal carer 0.75 Yes 68(83%) 40(85%) 121(85%) No 14(17%) 7(15%) 22(15%) Hours of support [Mean(sd ); Median(range)] 6.45 (4.47); (4,7.5) 6.70 (2.96); (4.5,8.5) 6.53(4.03); (4,8) Education level 0.11 Up to secondary school 57(70%) 39(83%) 106(75%) Beyond secondary school 24(30%) 8(17%) 35(25%) 0.01 0.21

Quality of Life Scores Instrument n Mean (SD) 95% CI EQ 5D 5L 140 0.56 (0.26) 0.52, 0.60 ICECAP O 141 0.76 (0.17) 0.73, 0.79 QoL and Length of time on CDC Time on CDC n EQ 5D 5L ICECAP O Mean (SD) 95% CI p value Mean (SD) 95% CI p value <12 months 101 0.57 (0.25) > 12 months 49 0.54 (0.25) 0.52, 0.62 0.427 0.78 (0.15) 0.47, 0.62 0.72 (0.18) 0.75, 0.81 0.052 0.67, 0.77

Study 2: Tests of association between ICECAP O attributes and time spent on CDC Capability attribute Attachment (love and friendship) 0 12 Months >12 months Test of difference Mean (SD) 95% CI Mean (SD) 95% CI z statistic p value 3.20 (0.78) 3.04, 3.36 2.92 (0.87) 2.66, 3.17 1.925 0.054 Security 2.84 (0.97) 2.65, 3.04 2.72 (0.97) 2.44, 3.01 0.646 0.518 Role (doing things that make you feel valued) Enjoyment (enjoyment and pleasure) 2.72 (0.79) 2.56, 2.88 2.33 (0.88) 2.08, 2.58 2.744 0.006 2.79 (0.74) 2.64, 2.94 2.52 (0.80) 2.29, 2.75 1.836 0.066 Control 2.62 (0.70) 2.48, 2.76 2.47 (0.68) 2.27, 2.66 1.158 0.246

Discussion [1] Findings indicate no statistically significant differences in quality of life overall although ICECAP O scores trend towards statistical significance for the newly transitioned CDC group Some support for quality of life improvements in specific dimensions of the ICECAP O commensurate with development of CDC in the sector and the main policy objectives: promotion of choice and control. Limitations: relatively small sample sizes, timing QoL assessment undertaken during unprecedented period of transition for the sector, limited number of provider organisations

Discussion [2] Future directions: How to definitively answer the question as to whether CDC has improved the quality of life of older Australians? We need the best instrument so please join me! OVQoL developed from its inception with older Australians and suitable for application in an economic evaluation framework Extended longitudinal follow up in larger samples is needed to facilitate a more detailed examination of the relationship between the evolution of CDC and its longer term influences on quality of life. Routine assessment similar to PROMs movement in the UK NHS? Consumer Reported Outcome Measures to assess QoL longitudinally change over time critical for the sector in demonstrating cost effectiveness of new interventions/service innovations

julie.ratcliffe@flinders.edu.au Thank you