Understanding mortality in care facilities—the role of good data

Understanding mortality in care facilities—the role of good data Mortality rates have long been held as indicators of quality in care facilities (a term to include residential care homes, care homes with nursing and skilled nursing facilities). Understanding mortality within the wide variation of case-mix seen in such facilities is, however, more complex than it would first seem. Although the majority of residents admitted to care facilities continue to be long-stay residents, care facilities perform an increasingly complex mix of activities which include short-term respite and a role in reablement and rehabilitation. Thus knowing who is in a home, what they are there for and what trajectories are ‘normal’ for such patients is key. Making comparison between countries introduces further complexity, with even greater variation in terms of case-mix, and how primary and specialist health care input are delivered [1]. Researchers, in reporting work from individual jurisdictions, must carefully describe the characteristics of institutions and the populations they serve in their country. Useful international comparison papers provide additional data that can help the reader to better understand how care settings compare between nations [2, 3]. Once the differences between countries have been understood, it enables us to effectively contextualise and caveat findings, so that we can draw international lessons. An important opportunity to draw such lessons from a single country study is presented in this issue through the work of Willoughby et al. [4]. They report a retrospective analysis of Australian coronial data comparing mortality in permanent and respite residents of accredited nursing homes over a 13-year period. Respite residents were twice as likely to die from falls or other injury-related causes than permanent residents. The reasons for this are not immediately apparent. It is possible that respite residents are more ambulant and encouraged to be more active to maintain independence, with a greater risk of injury. For older adults with functional dependency, there are recognised excess risks associated with a change of venue for care [5] and these may apply particularly to respite residents, who by their very definition undergo rapid transition into and back out of care facilities. What wider lessons can be drawn from this work? Firstly, there is a need to develop greater understanding of the trajectories and outcomes for the different categories of people being admitted to care facilities through tracking with standardised datasets. Secondly, greater understanding is needed of the risks and potential for risk reduction through changes in how care is delivered during periods of transition. The paucity of information on outcomes in care facilities is not unique to Australia. The UK, for example, lacks a structured mechanism to capture information from care assessments in a way that could support a better understanding of care outcomes. The patient safety thermometer [6] has not been well received in long-term care, benchmarking prevalence of care problems is taking place only in pockets [7] and there is no minimum dataset, akin to those operated in USA and other countries where the international Resident Assessment Instrument (interRAI) has been mandated [8]. Implementing minimum datasets is challenging. There are recognised issues around burden of data collection [9]. In a sector defined, in many countries, by care which is fragmented and shared between multiple providers, there is also a need to identify whom the data will serve. Datasets have been used, variably, to drive clinical care, organisational aspects of service delivery, quality improvement, remuneration and regulation [10]. It would be naive to suggest these interests are fully aligned. Where, datasets have been successfully implemented, it has tended to be where policy- or law-makers mandate it. This is a sure-fire way to generate numbers on spreadsheets but it is not clear that such approaches connect all in the care sector with data in ways that enable them to exploit its full potential to transform care. There is work to be done here. Simply, countries where outcome data from care are not available need to develop policies to support such work. This is particularly important now, as many care operators seek to implement electronic care records to simplify and improve record storage. There is a window of opportunity to reconcile the data requirements of residents, relatives, care providers, regulators and those who pay for care. We need one dataset to serve all stakeholders. There is a need to focus on data which can demonstrate delivery of person-centred care outcomes alongside more basic quality data about, for example, incidence of falls and injury. Every opportunity should be taken to learn from work done by motivated teams working to make sense of whatever data they can acquire from routine care records. Sharing learning between countries is helpful in the quest for social justice for vulnerable people in need of care. Many countries, though, have work to do before they can bring data of sufficient quality to the table to enable such discussions. Key points International research is needed to understand the patterns of morbidity and mortality for respite residents in care facilities. Currently not all nations collect sufficient data to enable understanding or comparison of outcomes for care facility residents. Minimum datasets must, if implemented, serve the needs of residents, relatives, care providers, regulators and care funders. Conflict of interest None. References 1 Kraus M, Rieder M, Mot E et al.  . Typology of Systems of Long-Term Care in Europe—Results of Work Package 1 of the ANCIEN Project, ENEPRI Research Report No 91. Brussels, 2010. 2 Sanford AM, Orrell M, Tolson D et al.  . An international definition for ‘nursing home’. JAMDA  2015; 16: 181– 4. Google Scholar PubMed  3 Damiani G, Farelli V, Anselmi A et al.  . Patterns of long term care in 29 European countries: evidence from an exploratory study. BMC Health Serv Res  2011; 11: 316. doi:10.1186/1472-6963-11-316. Google Scholar CrossRef Search ADS PubMed  4 Willoughby M, Kipsaina C, Ferrah N et al.  . A greater risk of premature death in residential respite care: a national cohort study. Age and Ageing 2017. https://academic.oup.com/ageing/advance-article/doi/10.1093/ageing/afx177/4683014 (27 December 2017, date last accessed) 5 Coleman EA. Falling through the cracks: challenges and opportunities for improving transitional care for persons with continuous complex care needs. J Am Geriatr Soc  2003; 51: 549– 55. Google Scholar CrossRef Search ADS PubMed  6 Power M, Fogarty M, Madsen J et al.  . Learning from the design and development of the NHS Safety Thermometer. Int J Qual Heal Care  2014; 26: 287– 97. Google Scholar CrossRef Search ADS   7 Darby J, Horne J, Lewin J et al.  . Benchmarking the prevalence of care problems in UK care homes using the LPZ-i—a feasibility study. East Midlands Research into Ageing Discussion Paper Series. 2017; 13. http://www.nottingham.ac.uk/emran (5 December 2017, date last accessed). 8 Hirdes JP, Ljunggren G, Morris JN et al.  . Reliability of the interRAI suite of assessment instruments: a 12-country study of an integrated health information system. BMC Health Serv Res  2008; 8: 277. Google Scholar CrossRef Search ADS PubMed  9 Rahman AN, Applebaum RA. The nursing home minimum data set assessment instrument: manifest functions and unintended consequences—past, present and future. Gerontologist  2009; 49: 727– 35. Google Scholar CrossRef Search ADS PubMed  10 Carpenter I, Hirdes JP. Using interRAI assessment systems to measure and maintain quality of long-term care. In: A Good Life in Old Age?: Monitoring and Improving Quality in Long-term Care . Paris: OECD Publishing, 2013; 93– 142. http://www.keepeek.com/Digital-Asset-Management/oecd/social-issues-migration-health/a-good-life-in-old-age_9789264194564-en#.WkOyo-S7KUk#page3. © The Author(s) 2018. Published by Oxford University Press on behalf of the British Geriatrics Society. All rights reserved. For permissions, please email: journals.permissions@oup.com http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png Age and Ageing Oxford University Press

Understanding mortality in care facilities—the role of good data

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Oxford University Press
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© The Author(s) 2018. Published by Oxford University Press on behalf of the British Geriatrics Society. All rights reserved. For permissions, please email: journals.permissions@oup.com
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0002-0729
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10.1093/ageing/afx199
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Abstract

Mortality rates have long been held as indicators of quality in care facilities (a term to include residential care homes, care homes with nursing and skilled nursing facilities). Understanding mortality within the wide variation of case-mix seen in such facilities is, however, more complex than it would first seem. Although the majority of residents admitted to care facilities continue to be long-stay residents, care facilities perform an increasingly complex mix of activities which include short-term respite and a role in reablement and rehabilitation. Thus knowing who is in a home, what they are there for and what trajectories are ‘normal’ for such patients is key. Making comparison between countries introduces further complexity, with even greater variation in terms of case-mix, and how primary and specialist health care input are delivered [1]. Researchers, in reporting work from individual jurisdictions, must carefully describe the characteristics of institutions and the populations they serve in their country. Useful international comparison papers provide additional data that can help the reader to better understand how care settings compare between nations [2, 3]. Once the differences between countries have been understood, it enables us to effectively contextualise and caveat findings, so that we can draw international lessons. An important opportunity to draw such lessons from a single country study is presented in this issue through the work of Willoughby et al. [4]. They report a retrospective analysis of Australian coronial data comparing mortality in permanent and respite residents of accredited nursing homes over a 13-year period. Respite residents were twice as likely to die from falls or other injury-related causes than permanent residents. The reasons for this are not immediately apparent. It is possible that respite residents are more ambulant and encouraged to be more active to maintain independence, with a greater risk of injury. For older adults with functional dependency, there are recognised excess risks associated with a change of venue for care [5] and these may apply particularly to respite residents, who by their very definition undergo rapid transition into and back out of care facilities. What wider lessons can be drawn from this work? Firstly, there is a need to develop greater understanding of the trajectories and outcomes for the different categories of people being admitted to care facilities through tracking with standardised datasets. Secondly, greater understanding is needed of the risks and potential for risk reduction through changes in how care is delivered during periods of transition. The paucity of information on outcomes in care facilities is not unique to Australia. The UK, for example, lacks a structured mechanism to capture information from care assessments in a way that could support a better understanding of care outcomes. The patient safety thermometer [6] has not been well received in long-term care, benchmarking prevalence of care problems is taking place only in pockets [7] and there is no minimum dataset, akin to those operated in USA and other countries where the international Resident Assessment Instrument (interRAI) has been mandated [8]. Implementing minimum datasets is challenging. There are recognised issues around burden of data collection [9]. In a sector defined, in many countries, by care which is fragmented and shared between multiple providers, there is also a need to identify whom the data will serve. Datasets have been used, variably, to drive clinical care, organisational aspects of service delivery, quality improvement, remuneration and regulation [10]. It would be naive to suggest these interests are fully aligned. Where, datasets have been successfully implemented, it has tended to be where policy- or law-makers mandate it. This is a sure-fire way to generate numbers on spreadsheets but it is not clear that such approaches connect all in the care sector with data in ways that enable them to exploit its full potential to transform care. There is work to be done here. Simply, countries where outcome data from care are not available need to develop policies to support such work. This is particularly important now, as many care operators seek to implement electronic care records to simplify and improve record storage. There is a window of opportunity to reconcile the data requirements of residents, relatives, care providers, regulators and those who pay for care. We need one dataset to serve all stakeholders. There is a need to focus on data which can demonstrate delivery of person-centred care outcomes alongside more basic quality data about, for example, incidence of falls and injury. Every opportunity should be taken to learn from work done by motivated teams working to make sense of whatever data they can acquire from routine care records. Sharing learning between countries is helpful in the quest for social justice for vulnerable people in need of care. Many countries, though, have work to do before they can bring data of sufficient quality to the table to enable such discussions. Key points International research is needed to understand the patterns of morbidity and mortality for respite residents in care facilities. Currently not all nations collect sufficient data to enable understanding or comparison of outcomes for care facility residents. Minimum datasets must, if implemented, serve the needs of residents, relatives, care providers, regulators and care funders. Conflict of interest None. References 1 Kraus M, Rieder M, Mot E et al.  . Typology of Systems of Long-Term Care in Europe—Results of Work Package 1 of the ANCIEN Project, ENEPRI Research Report No 91. Brussels, 2010. 2 Sanford AM, Orrell M, Tolson D et al.  . An international definition for ‘nursing home’. JAMDA  2015; 16: 181– 4. Google Scholar PubMed  3 Damiani G, Farelli V, Anselmi A et al.  . Patterns of long term care in 29 European countries: evidence from an exploratory study. BMC Health Serv Res  2011; 11: 316. doi:10.1186/1472-6963-11-316. Google Scholar CrossRef Search ADS PubMed  4 Willoughby M, Kipsaina C, Ferrah N et al.  . A greater risk of premature death in residential respite care: a national cohort study. Age and Ageing 2017. https://academic.oup.com/ageing/advance-article/doi/10.1093/ageing/afx177/4683014 (27 December 2017, date last accessed) 5 Coleman EA. Falling through the cracks: challenges and opportunities for improving transitional care for persons with continuous complex care needs. J Am Geriatr Soc  2003; 51: 549– 55. Google Scholar CrossRef Search ADS PubMed  6 Power M, Fogarty M, Madsen J et al.  . Learning from the design and development of the NHS Safety Thermometer. Int J Qual Heal Care  2014; 26: 287– 97. Google Scholar CrossRef Search ADS   7 Darby J, Horne J, Lewin J et al.  . Benchmarking the prevalence of care problems in UK care homes using the LPZ-i—a feasibility study. East Midlands Research into Ageing Discussion Paper Series. 2017; 13. http://www.nottingham.ac.uk/emran (5 December 2017, date last accessed). 8 Hirdes JP, Ljunggren G, Morris JN et al.  . Reliability of the interRAI suite of assessment instruments: a 12-country study of an integrated health information system. BMC Health Serv Res  2008; 8: 277. Google Scholar CrossRef Search ADS PubMed  9 Rahman AN, Applebaum RA. The nursing home minimum data set assessment instrument: manifest functions and unintended consequences—past, present and future. Gerontologist  2009; 49: 727– 35. Google Scholar CrossRef Search ADS PubMed  10 Carpenter I, Hirdes JP. Using interRAI assessment systems to measure and maintain quality of long-term care. In: A Good Life in Old Age?: Monitoring and Improving Quality in Long-term Care . Paris: OECD Publishing, 2013; 93– 142. http://www.keepeek.com/Digital-Asset-Management/oecd/social-issues-migration-health/a-good-life-in-old-age_9789264194564-en#.WkOyo-S7KUk#page3. © The Author(s) 2018. Published by Oxford University Press on behalf of the British Geriatrics Society. All rights reserved. For permissions, please email: journals.permissions@oup.com

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Age and AgeingOxford University Press

Published: Mar 1, 2018

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