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Tracey McDonald - Australian Catholic University - KEYNOTE ADDRESS "It's life Jim, but not as we know it": Measuring Success of Services through Quality of Life Assessment

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Tracey McDonald delivered the presentation at 2014 Transition Care Conference: Improving Outcomes for Older People. …

Tracey McDonald delivered the presentation at 2014 Transition Care Conference: Improving Outcomes for Older People.

The 2014 Transition Care Conference: Improving Outcomes for Older People formed a National account of the consumers' transition care journey within the current aged care environment, highlighted new initiatives to improve TCP access and quality of care, and showcased innovative service delivery models across jurisdictions.

For more information about the event, please visit: http://www.informa.com.au/transitioncareconference14

Published in Health & Medicine , Technology
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  • 1. Transition Care conference: Improving Outcomes for Older People Melbourne, 29-30 May 2014
  • 2. The song written in the late 1980s accumulates crises with each new verse but somehow they always seem to make it through … just like aged care. For the purists, YES … Mr Spock actually said “It’s no life as we know it” in the Devil in the dark episode, but O’Connor, Lister & Kehoe thought it didn’t fit well with the music … so they changed it… just like aged care.
  • 3. Star Trek character: Tag line: Uhura (ITC systems ) There’s Klingons on the starboard bow Spock (Academic) It’s life Jim, but not as we know it McCoy (Doctor) It’s worse than that – he’s dead Jim! Kirk (Captain/manager) We come in peace – shoot to kill! Scotty (Engineer) Ye canna change the laws of physics!
  • 4. Transmission from Uhura to Capt. Kirk: Translation of alien dialogue… Life form #1
  • 5. Experiences of older adults’ transitioning to residential care and from hospitals in Australia: For their sake (2007) PTSD study Known dangers of clinical transition Trust v. powerlessness Transition Care goals - National priority for 2004-2008 •  To optimise patients’ functional capacity •  To ease transitions between hospitals and the aged care •  Minimise extended hospital stays and premature admission to RACF (Gray,  et  al    2008  )
  • 6. !  General expectations of quality of life for older adults in residential, long term care (LTC) contexts !  Focus of clinical and management attention is mostly on changes in physical abilities, disease processes, behaviours affected by mental confusion !  Cognitive decline can distract from significance of quality of life !  Admission to residential care is based on the presence of general frailty, disability or ill-health and is therefore assumed to be present in this group of adults. Nursing and allied-nursing assessments are performed for this aspect of care.
  • 7. 9   Intersectionality is a term coined in 1989 (Crenshaw) to denote how disempowered people are simultaneously positioned according to their gender, age and disability. Multiple positioning occurs in everyday life and is affected by power relations. Its main purpose is to limit complexity and assumes that the person being dominated and marginalized is powerless and insignificant to those in power. Identity politics and reductionist positioning of social or disability groups produces research, policy and services that entrench inequality in a process of normalization. Post-identity politics will question who defines others and why. (Brah  and  Phoenix,  2004)  
  • 8. 10  
  • 9. 11  
  • 10. Family caregiver involvement •  support for ongoing involvement •  continuity of care and life experience •  maintaining family attachment •  change planning and social variety •  sustaining a positive outlook •  feelings of security and belonging
  • 11. •  Quality of care v. quality of life •  If some services and programs are good – would more be better? •  Workload issues and resident quality of life •  Clinical governance and accountability BUT DOES IT ACTUALLY IMPROVE CLIENT LIFE QUALITY?
  • 12. Contextual issues Being resilient: being able to overcome challenges and setbacks Cultural connection   Environmental security   Positive social engagement Self-efficacy and personal resilience  
  • 13. Resilient people are able to: •  develop emotionally, intellectually and creatively •  maintain positive and respectful relationships with others •  identify and manage one’s own emotions and understand the feelings of others •  communicate skilfully and include assertiveness, empathy and negotiation •  solve problems, make informed decisions and accept responsibility for own actions •  set realistic but rewarding goals and to actively work toward achieving these.
  • 14. Transmission from Uhura to Capt. Kirk: Translation of alien dialogue… Life form #2
  • 15.  Quality of life is defined as an individual’s perception of their position in life in the context of the culture and value systems in which they live, and in relation to their goals, expectations, standards and concerns. It is a broad-ranging concept, incorporating in a complex way the person’s physical health, psychological state, level of independence, social relationships, personal beliefs and relationship to salient features of the environment. (World  Health  Organisation  Quality  of  Life  (WHOQoL)  Group  1,  page  153)  
  • 16. Can instruments used for younger people be suitable for assessing elders? Many of instruments currently used to assess older adults lack adequate testing for applicability with old and very old populations. Four factors for consideration in selecting assessment instruments for use with older adults include (a) fatigue, (b) anxiety, (c) ethnic background, and (d) education. Research Instrumentation and Elderly Subjects Journal of Nursing Scholarship, 1998; 30(2), 185-190.01998, sigma theta tau International. Irene Burnside, Sally Preski, Judith E. Hertz
  • 17. Constructs generally assumed as necessary for well-being to be present and for QoL to be perceived: These major life domains and indicators are important factors in determining the perceptions of quality of life of older adults – but do they DRIVE life quality up or down? Understanding what constitutes quality of life and how to measure it comprehensively has significant implications for social policy and professional practice in the field of ageing. An Integrated Conceptual Model of Quality of Life for Older Adults Based on a Synthesis of the Literature Nancy Kelley-Gillespie Applied Research Quality Life (2009) 4:259–282DOI 10.1007/s11482-009-9075-9 social   physical   psychological   cognitive   spiritual   environmental  
  • 18. The development of effective and successful long-term care programs, services, and interventions for older adults requires understanding of what constitutes a positive or negative quality of life and what indicators are important determining factors of quality of life perceptions. A holistic perspective of health is more than a focus on one facet of health or well-being, It encompasses physical, psychological, social, cognitive, spiritual, and environmental functioning and provides a means for improving people’s lives through health and personal care, health-promotion, and community capacity development. QOL is a legitimate basis for making decisions in the best interest of or on behalf of incapacitated older adults, particularly by surrogate or proxy decision makers.
  • 19. !  Normal functioning is not necessary for good quality of life to exist in the person’s mind !  Assumptions that ill-health, disability and frailty drive quality of life are not supported by research !  Concurrent measurements of physical function and quality of life can imply connections that may not be true !  Quality of life can be observed in others as well as being personally experienced !  Experiences of life quality are influenced by overall subjective feelings of well-being closely related to morale, happiness and satisfaction with life
  • 20. For LTC-Qol purposes, quality of life is defined as: an overall subjective feeling of well-being closely related to morale, happiness and satisfaction with life. Why? Repeated exposure to life quality assessment has convinced residents, family members, clinicians and care managers that normal physical and intellectual functioning is not necessary for residents to experience a high quality of life. Factors that are essential to life quality are able to be positively influenced as a result of insights gained through using the LTC-QOL scale. )  
  • 21. (a) consensual QOL definitions or constructs being measured (b) rationale for using a particular measurement scale (c) use of summary measures (d) in-depth investigations into client perceptions of relevant importance of various QOL components (e) accurate comparisons between populations (disabled adults, older adults, children) (f) established efficacy of methods (interview, observation, self administered survey) (g) certainty in the concept being measured (successful aging, health related quality of life, quality of extended life, life satisfaction, and generativity) and are often used interchangeably (h) consistency in concept, construction, design, and content.
  • 22. !  to address the lack of available quality of life assessment tools that could be used in self-reporting as well as proxy reporting, thereby being suitable for use by individuals with and without cognitive impairment !  a need for a tool that specifically addresses quality of life for diverse residents in care rather than at home; or focusing on a particular disease process !  A guide for clinicians and managers to determine individual factors affecting QoL; and to assess program outcomes !  an easy-to-use format designed for use by professionals or by care assistants who report assessment data to professional nurses for validation and interpretation.
  • 23. The purpose of a Quality of Life assessment is to measure general well-being of older adults in long term care despite the presence of debilitating disease or frailty. Basic elements of the assessment cover social capacity, self- efficacy, supportive relationships, mood state and the absence of fear and distress. Simplicity of the LTC-QoL design and scoring allows the assessment to be completed by the person; or applied by other adults in a care and trust relationship with the person, who know them well and can detect changes in their demeanour.
  • 24. SEX - Female Male Missing 39 (62.9%) 21 (33.9%) 2 (3.2%) AGE IN YEARS (n=62) Minimum 5th percentile Median 95th percentile Maximum Mean +/- SD 64.6 74.7 86.5 96.6 100.8 86.8 +/- 6.8 DEMENTIA DIAGNOSIS N (%) No Yes Missing 21 (33.9%) 32 (51.6%) 9 (14.5%) PAS CATEGORY Psychiatric Assessment Scale N (%) No or minimal cognitive impairment Mild impairment Moderate impairment Severe impairment Missing 15 (24.9%) 20 (32.3%) 8 (12.9%) 14 (22.6%) 5 (8.1%)
  • 25. !  Social capacity Joins in activities such as social outings, entertainment or mentally stimulating activities !  Self-efficacy Participates in self-care and health enhancement activities Makes decisions and personal choices without duress from others !  Security – Absence of fear and distress States or acts as if they feel secure in their environment
  • 26. !  Supportive relationships Has access to emotional support and someone who cares about their happiness and wellbeing Maintains adequate positive contact with family and friends; and/or can relate pleasantly to others nearby. !  Mood state or outlook Displays a positive outlook on life The context allows the person to feel happy and to be confident They verbalise or show evidence of optimum health; physical ability is maintained and the person states or acts as if they ‘feel well
  • 27. The LTC-Qol is a 9-item questionnaire drawn from these domains and focused on the outcomes of care, treatment, support and protection services provided in the care context rather than on the measurement of health and illness as part of life quality. Assessments are done over a 2-week period to capture event variability; and on a quarterly basis to establish individualised trend data on all items. All responses to the 9-items are rated on a 5-point scale (Never, Occasionally, Sometimes, Often and Always). Each item score is coded, summed, and transformed onto a scale from 9 (worst) to 45 (best) to create the total QoL score.    
  • 28. 1. Participated in social activities 2. Participated in self-care activities 3. Participated in health enhancement programs / activities 4. Exercised personal choices 5. Had supportive contact with family and/or friends 6. Expressed that they ‘feel well’ 7. Related easily with others nearby 8. Expressed that they ‘feel secure’ 9. Acted as if happy and/ or confident Theme Variables (questions) Social activity capacity 1 Self-efficacy 2, 3, 4 Supportive relationships 5, 7 Outlook or mood state 6, 9 Security - absence of fear and distress 8
  • 29. !  Assessment occurs on admission and then every 3 months in order to determine any fluctuations in the person’s experience of life quality within the assessment period and over time. !  The person is asked to consider the previous week when answering the questions each time. !  Where cognitive impairment is present, ratings can be made indirectly by a person familiar with the person. !  The proxy assessor needs to have observed the person over the past week in order to make an informed and sensitive assessment.
  • 30. Qualitative development •  Review of research •  Consultation with clinical and social experts •  Exclusion of irrelevant items •  Field trials and ongoing refinement for over 5 years Item reduction and factor structure •  Factor analysis to see if number of items could be reduced •  Principal component analysis •  Retention of factors with eigenvalue greater than 0.6 •  Reliability coefficients not produced (one dimensional scale) Analysis of distribution of responses A binary response option rather than the 5-point scale would produce a more normal distribution of responses however it would reduce the field-tested diagnostic utility of the questions for clinicians and managers and so questions with some skewness were retained.
  • 31. In terms of validity, no difference was found between males and females (p=0.77,  t= -0.2989, df=55) or between those with or without cognitive impairment (p=0.75, t= -0.3149, df=48) Female Male No  Demen,a Demen,a
  • 32. Cronbach’s alpha results for questions ranged from 86-89 which satisfies the recommended minimum of 0.85 for internal consistency to be acceptable. Test-retest scores were highly correlated. For all questions, 96-100% of cases lay within the 95% confidence interval on a normal distribution. The QOL tool has the advantage of being brief and easy to use.
  • 33. The LTC-QoL tool is valid for assessment of men and women, with and without cognitive impairment, living in long term care contexts. Statistical analysis of data over two quarters establishes the reliability and validity of this instrument. It has acceptable internal consistency, good test-retest reliability and is valid across age, gender and cognitive capacity. Content validity and management utility have been verified over repeated usage and refinement during the five years of use in a large facility catering to all levels of long term care recipients.
  • 34. •  Staff monitoring to see if QoL has changed •  Individual trend data and diagnostic utility form basis of Qo0L intervention •  Program implementation monitoring to gauge if program is actually changing QoL trend line •  Overall analysis of perceptions of pillars of Qol to inform managers of strategies needed •  Comparisons between similar units (not so reliable) The quality of life audit tool is seen as pivotal in balancing risk and safety measures, providing greater choice to residents and encouraging reasonable risk-taking. LTC-Qol has increased awareness of pain in terms of quality of care and quality of life .. more attention given to pain assessments since realising that pain is more significant than previously realised and also the risk of under-reporting on pain.
  • 35. Transmission from Uhura to Capt. Kirk: Translation of alien dialogue… Life form #3
  • 36. Assessment scale of quality in life assessment in LTC contexts, generates summary information on the quality of life experienced by all older adults in care, and identifies aspects requiring attention Knowing what QoL is being experienced provides guidance to those caring for older adults in long-term care contexts; and gives management information on individual, program and care unit outcomes in supporting care recipients’ quality of life While the potential for men and women to experience quality of life is similar, dementia was found to be less impactful on quality of life than is commonly thought.
  • 37. REFERENCES McDonald, T. Measurement characteristics of a long term care quality of life scale. International Journal of Care Services Management (in press) Bland, J.M. & D.G. Altman, Statistical methods for assessing agreement between two methods of clinical measurement. Lancet, 1986. 1(8476): p. 307-10. Brazier, J.E., et al., Validating the SF-36 health survey questionnaire: new outcome measure for primary care. BMJ, 1992. 305(6846): p. 160-4 Cronbach, L.J., Coefficient alpha and the internal structure of tests. Psychometrika, 1951. 16(3): p. 297-334. Gray, l., Travers, C., Bartlet, P.,Crotty , M &Cameron , Transition care, will it deliver? I. Med J Aust 2008; 188 (4): 251-253.) Bursnide, I., Preski, S. & Hertz, J. Research Instrumentation and Elderly Subjects Journal of Nursing Scholarship, 1998; 30(2), 185-190.01998, sigma theta tau International. Kelley-Gillespie, K. An Integrated Conceptual Model of Quality of Life for Older Adults Based on a Synthesis of the Literature. 2009; Applied Research Quality Life 4:259–282 DOI 10.1007/s11482-009-9075-9 McDonald, T. Practice-Driven Research: a practical guide to aged care knowledge development, 2011. Sydney: Woodslane Press Pty Ltd. pp. 73-98 McDowell, I. & C. Newell, Measuring health : a guide to rating scales and questionnaires. 1987, New York: Oxford University Press. xiv, p.342 World Health Organisation Quality of Life (WHOQoL) Group 1, page 153