Quality Of Long-term Care Research Articles

Germany-wide, Web-based ParaReg Registry for Lifelong Monitoring of People with Spinal Cord Injury: Data Model, Ethico-legal Prerequisites and Technical Implementation

In Germany, treatment paths for patients with acute spinal cord injury (SCI) differ considerably depending on intrinsic, disease-specific and extrinsic factors. Which of these factors are associated with improved outcome with fewer subsequent complications and inpatient re-admissions is not clear. The German-wide, patient-centered, web-based ParaReg registry will be implemented to improve the long-term quality of patient care and the planning of treatment paths with increased cost-effectiveness. In the 2017-18 conceptualization phase, the data model of the registry was developed in an iterative process of the ParaReg steering committee together with the extended DMGP board and patient representatives. In ParaReg, routine social and medical data as well as internationally established neurological, functional and participation scores will be documented. The assignment of a unique patient ID allows a lifelong, cross-center documentation of inpatient stays in one of the 27 SCI centers organized in the German-speaking Medical Society for SCI (DMGP). The ParaReg data protection concept and patient information/consent are based on the Open Source Registry for Rare Diseases (OSSE) which were extended by GDPR-relevant aspects. In the realization phase, which started in 2019, the information technology infrastructure was implemented according to the clinical ID management module of the Technology and Methods Platform for Networked Medical Research (TMF). In parallel, the legal and ethical prerequisites for registry operation under the patronage of the DMGP were created. Recommendations of the working group data protection of the TMF were integrated into ParaReg's data protection concept. Based on the feedback from the alpha test phase with documentation of the hospitalization data of 40 patients, the ergonomics of the electronic case report forms were improved in particular for data entry on mobile devices. After completion of the monocentric alpha test phase, the multicenter data acquisition was started in 5 DMGP-SCI centers. The sustainability of ParaReg is ensured by the structural and financial support of the DMGP after expiry of the funding by the German Federal Ministry of Education and Research (BMBF).

Cost and Effectiveness of Long-Term Care Following Integrated Discharge Planning: A Prospective Cohort Study.

Little is known about the effects of seamless hospital discharge planning on long-term care (LTC) costs and effectiveness. This study evaluates the cost and effectiveness of the recently implemented policy from hospital to LTC between patients discharged under seamless transition and standard transition. A total of 49 elderly patients in the standard transition cohort and 119 in the seamless transition cohort were recruited from November 2016 to February 2018. Data collected from medical records included the Multimorbidity Frailty Index, Activities of Daily Living Scale, and Malnutrition Universal Screening Tool during hospitalization. Multiple linear regression and Cox regression models were used to explore risk factors for medical resource utilization and medical outcomes. After adjustment for effective predictors, the seamless cohort had lower direct medical costs, a shorter length of stay, a higher survival rate, and a lower unplanned readmission rate compared to the standard cohort. However, only mean total direct medical costs during hospitalization and 6 months after discharge were significantly (p < 0.001) lower in the seamless cohort (USD 6192) compared to the standard cohort (USD 8361). Additionally, the annual per-patient economic burden in the seamless cohort approximated USD 2.9–3.3 billion. Analysis of the economic burden of disability in the elderly population in Taiwan indicates that seamless transition planning can save approximately USD 3 billion in annual healthcare costs. Implementing this policy would achieve continuous improvement in LTC quality and reduce the financial burden of healthcare on the Taiwanese government.

Leadership for quality in long-term care.

Leadership in long-term care is a burgeoning field of research, particularly that which is focused on enabling point of care staff to provide high-quality and responsive healthcare. In this article, we focus on the relatively important role that leadership plays in enabling the conditions for high-quality long-term care. Our methodological approach involved a rapid in-depth ethnography undertaken by an interdisciplinary team across eight public and non-profit long-term care homes in Canada, where we conducted over 1,000hours of observations and 275 formal and informal interviews with managers, staff, residents, family members and volunteers. Guiding our analysis post hoc is the LEADS in a Caring Environment framework. We mapped key promising leadership practices identified by our analysis and discuss how these can inform the development of leadership standards across staff and management in long-term care.

Staffing for Quality in Canadian Long-Term Care Homes.

A coherent workforce strategy and consensus on essential staffing requirements are needed to ensure quality in long-term care (LTC) homes. We have neither in Canada. No Canadian studies, investigator driven or commissioned, exist to guide us. We generally rely on 20-year-old US recommendations, although we have never actually implemented them. During, and in the wake of the COVID-19 pandemic, it is clear that an insufficient workforce was at the root of much of the failure in LTC to manage the pandemic. This commentary frames research on staffing and LTC homes and the impact of COVID-19. It then outlines key ingredients, such as knowledge of residents, the workforce and the care environment, that are needed in order to estimate staffing needs. Recommendations for decision makers are provided.

Nutritional Quality in Long Term Care Using Nursing Home Compare Data Set for the State of Indiana

Nutritional Quality in Long Term Care Using Nursing Home Compare Data Set for the State of Indiana

The Return of Typhoid Mary? Immigrant Workers in Nursing Homes

AbstractNursing homes are dependent on immigrant, female labor as nursing aides, yet these workers are provided with minimal employment benefits, which has led to devastating consequences for vulnerable, older residents during COVID‐19. Emerging research suggests that aides are contributors to the increase in coronavirus outbreaks due to working in multiple long‐term care facilities and refer to these individuals as “superspreaders.” Specifically, aides have been tied to unwittingly passing on the virus as they may be asymptomatic or pressured to work by employers while symptomatic with limited access to paid sick leave. The plight of these women harkens back to “Typhoid Mary”—also a poor, immigrant woman who was accused of spreading typhoid fever a century ago. This article applies lessons learned from Mary's shocking and tragic trajectory, then employs critical race theory and feminist jurisprudence to highlight examples of structural and institutional disparities that exist in current paid sick leave laws. Recommendations call for improved oversight in delivery of quality and safety in long‐term care by addressing racial, gender, and economic inequalities through paid sick leave laws coupled with strong enforcement.

How long-term care quality assurance measures address dementia in Australia, England, Japan, and the United States

The prevalence of people with dementia living in long-term care (LTC) is high and rising internationally, and the need to improve LTC for people with dementia is widely recognized. In some countries, LTC quality assurance programs use quantitative measures of LTC quality. To better understand how LTC quality assurance programs address dementia, programs were reviewed in four countries—Australia, England, Japan, and the United States. Quality measures from each program were identified (n = 38) and examined to determine how they address dementia. Most measures did not address dementia, but four risk-adjusted for dementia (antipsychotic use, fractures, falls, mobility), one was dementia-specific (dementia/delirium hospitalizations), and one excluded people with dementia (losing bowel/bladder control). Results show LTC quality measurement differs internationally, but few measures address dementia. Needed are new quality measures of direct import for people with dementia, for example through adoption of measures that are meaningful to people with dementia.

Long-Term Care Options in Florida: Their Availability by County Demographics.

Older people express a preference for home and community-based care over skilled nursing, realizing that preference, however, is dependent upon having those options available. The present exploratory study uses publicly available data to understand if the geographic availability of long-term care options-skilled nursing, assisted living, home health, and homemaker/companion services-are equally distributed by demographics in Florida. Regression analyses showed that the percent 65 and older and the percent in poverty in a county were not related to long-term care availability or quality. Findings indicate that Hispanic older people have less access to nursing home beds, greater access to home health and homemaker/companion agencies, and tend to live in counties with a greater number of assisted living facility (ALF) deficiencies while Black older people have greater access to homemaker services. Rural counties had lower rates of home health and homemaker/companion agencies and fewer ALF deficiencies. The 65 and older population would benefit from the increased availability of long-term care options near the communities in which they live.

Improving Care for Older Adults in China: Development of Long-Term Care Policy and System.

This special issue covers several important topics related to long-term care (LTC) systems and policy development in China. It provides a good contextual background on the development of the LTC system in China as well as the needs and preferences of LTC from family and older adults' perspectives. In addition, this issue covers the topic of evaluation of a recently developed long-term care nursing insurance and provides an example of family caregiving for persons with dementia within the Chinese context. The authors in this special issue also provided insights into the impact of the COVID-19 pandemic on older adults' life and LTC quality, and explored potential strategies to handle the challenges during and post-pandemic.

Employee Perceptions on Ethics, Racial-Ethnic and Work Disparities in Long-Term Care: Implications for Ethics Committees.

This study explored the perceptions of ethics among long-term care employees (N275) in order to test two hypotheses. A cohort cross-sectional survey examined employees’ perceptions of an ethics environment, racial-ethnic, and position disparities (HO1; ANOVA), and, secondarily, ethics in relationship to select, research-grounded work features measured as manage disagreements, effectiveness, work satisfaction, and opinions of care, the latter including intention to remain (HO2; Pearson Correlations). Established questionnaires with robust psychometrics were employed. Response rate was 51%. Non-significant differences between sample and population on key variables supported extrapolation of results. Statistically significant differences between racial–ethnic (p < 0.03; F 2.42) and work positions (p <0.0001; F 6.24) were revealed on ethics (3.16; HO1). Statistically significant relationships (p <0.0001; r = 0.26–0.68; HO2) between ethics and employees’ work features also were found, confirming both hypotheses. Perceptions of ethics based on racial-ethnic and position disparities, as well as the robust links with employee work features, offered potential avenues for decreasing disparities at work and improving the quality of long-term care. Noted further on ethics item scoring were relatively low scores indicating less involvement in, and access to, ethics discussions and decisions. In contrast, the literature review substantiated the importance of empowerment and retention, which were enhanced by employee involvement in work, notably, discussions and decisions. Thus, implications of ethics committees in long-term care sites as ways to potentially enhance employees’ work and quality of care, especially work satisfaction and retention, were explored; relevant concerns raised by the Covid pandemic were, briefly, discussed.

Where Are My Patients? Lost and Found in Bariatric Surgery.

Follow-up is a cornerstone of the success of bariatric surgery. However, adherence to monitoring decreases over time. The reasons for non-compliance with follow-up still remain unclear. This is a retrospective, single-center, cohort study, including all patients undergoing bariatric surgery between 2014 and 2017. Patients lost to follow-up were called back and questioned about the reasons of non-adherence. Patients followed and lost to follow-up were compared in terms of weight loss. Overall, 29.7% of patients were lost to follow-up. After a callback, we obtained information on 89.9% of patients. The first reason of non-attendance was considering follow-up as unnecessary (29.5%). Almost a quarter of patients (24%) discontinued follow-up due to geographic distance, while 23.3%, 18.6%, and 14.0% of patients explained the lack of follow-up due to family, professional, or health problems. Only 7.0% declared to renounce to follow-up because of poor weight loss. Percentage of excess weight loss at 3 and 5years after surgery was respectively 73.6% and 81.2% in attendant patients, and 70.7% and 68.4% in non-adherent patients (p = ns). Despite a greater weight loss in the group of patients regularly followed, the difference with patients lost to follow-up remained not significant in multivariate analysis. Follow-up is of crucial importance in the management of bariatric patients. Follow-up disruption is associated to individual patient choice and external constraints. In order to improve the quality of long-term care, care providers will probably need to adapt to these constraints, diversifying the offer of care.

Quality and Safety in Long-Term Care in Ontario: The Impact of Language Discordance

ObjectivesThis study compared quality indicators across linguistic groups and sought to determine whether disparities are influenced by resident-facility language discordance in long-term care. DesignPopulation-based retrospective cohort study using linked databases. Setting and ParticipantsRetrospective cohort of newly admitted residents of long-term care facilities in Ontario, Canada, between 2010 and 2016 (N=47,727). Individual residents' information was obtained from the Resident Assessment Instrument Minimum Data Set (RAI-MDS) to determine resident's primary language, clinical characteristics, and health care indicators. MeasuresMain covariates of interest were primary language of the resident and predominant language of the long-term care facility, which was determined using the French designation status as defined in the French Language Services Act. Primary outcomes were a set of quality and safety indicators related to long-term care: worsening of depression, falls, moderate-severe pain, use of antipsychotic medication, and physical restraints. Multivariable logistic regression models were used to assess the impact of resident's primary language, facility language, and resident-facility language discordance on each quality indicator. ResultsOverall, there were few differences between francophones and anglophones for quality and safety indicators. Francophones were more likely to report pain (10.9% vs 9.9%; P = .001) and be physically restrained (7.3% vs 5.2%; P < .001), whereas a greater proportion of anglophones experienced worsening of depressive symptoms (24.0% vs 22.9%; P = .001). However, quality indicators were generally worse for francophones in Non-Designated facilities, except for pain, which was more commonly reported by francophones in French-Designated facilities. Anglophones were more likely to be physically restrained in French-Designated facilities (6.7% vs 5.1%; P < .001). Conclusions and ImplicationsFor francophones, quality indicators tended to be worse in the presence of resident-facility language discordance. However, these findings did not persist after adjusting for individual- and facility-level characteristics, suggesting that the disparities observed at the population level cannot be attributed to linguistic factors alone.

Long-Term Care

Long-term care includes activities undertaken by others to ensure that those with a significant ongoing loss of physical or mental capacity can maintain a level of ability to be and to do what they have reason to value and involves a variety of services provided in a number of places and by different groups of caregivers ranging from care in the home from unpaid family members and friends (mostly female), which is the most common form of long-term care; home-based services provided by paid caregivers, including caregivers found informally or through home health care agencies and healthcare professionals (i.e., nurses, home health care aides and therapists); and services provided by health and care professionals in institutional settings such as nursing homes or community-based adult day centers. Caregiving for older persons is an important issue, regardless of how and where the care is provided, since the data shows that the global population over age 65 will more than double over the next three decades, and steps need to be taken to determine the best means to fund and otherwise support the services that will be needed to maintain the physical and mental wellbeing of the most vulnerable members of this group. While there is no international human rights instrument specifically addressing long-term care for older persons, the human rights of older persons with respect to long-term care can be derived from a combination of several different rights explicitly recognized in international human rights. This chapter discusses the human rights law foundation for providing older persons with high quality long-term care alternatives and considers the current state of institutional care in nursing homes and assisted living centers, which is especially relevant in the aftermath of the Covid-19 pandemic. The chapter also describes the sweeping impact that caregiving provided outside of institutions by family members and friends has on all aspects of society and the steps that are being proposed to reduce economic and psychological stress on millions of older persons and their caregivers through development of an “infrastructure of care”.

Work of Art, Art of Work: Artistic Literacy and Quality in Long-Term Dementia Care

This paper shares results from a thematic analysis (Braun & Clarke, 2006) of semi-structured interviews with a purposive snowball sample of 15 leaders in dementia arts education and praxis from Canada, the United States and United Kingdom. Interviews were conducted as part of a multi-phased collaborative, interdisciplinary arts-informed research project that aimed to operationalize quality mental health and dementia care in long-term care (LTC) from a relational perspective, with a focus on LTC staff literacy. Artistic literacy that is cultivated through creative arts-making and public exhibiting was described by participants as crucial to supporting and promoting quality within long-term care. Quality was imagined as a work of art and operationalized in terms of artist competencies, capacities and conditions. Artists included LTC staff, residents and their family and friends. Our analysis identified five themes related to artistic literacy: space-making, validation, fostering community, means of engagement, vulnerability and resilience. Drawing on cultural sociology (Bourdieu, 1993, 1984) and aging studies theory (Basting, 2018), we consider and discuss the role of the arts in disrupting unexamined assumptions about quality in LTC and advancing innovation in LTC staff mental health and dementia care.

Intersectionality: Mapping Critical Relations for Quality in Long-Term Care Research

Intersectionality is a useful method (Lutz, 2015) for interdisciplinary long-term care (LTC) research to advance a more critical understanding of how experiences of quality are shaped by mutually reproducing social divisions, identities and relations of power that shape LTC. This paper discusses insights from the “Mapping Care Relationships” stream of the Seniors – Adding Life to Years (SALTY) project, a pan-Canadian program of research examining clinical, social and policy perspectives on quality in LTC. “Mapping Care Relationships” mapped how promising approaches to care relationships are organized and experienced in LTC. From January 2018-August 2019 our team of nine researchers conducted rapid ethnographies in eight nursing homes, two in each of four provinces across Canada. We purposively observed and interviewed workers from a wide variety of positions and backgrounds, informed by an intersectionality approach. We traced how promising approaches in person-centred dementia care (PCDC) in particular may reify the subordinated status of care workers (some more than others) and reinforce inequities within LTC systems. In multiple LTC homes, front-line care workers described experiencing physical and emotional harm in care relationships with residents which caused them distress. However, consistent with a PCDC approach, the harm was attributed to ‘behaviours’ clinically symptomatic of dementia. In framing power differentials from a medical perspective, PCDC makes it possible to interpret harmful experiences as 'part of the job’ and something workers should know to expect, prevent, avoid, redirect, or ignore. Lutz, H. (2015). Intersectionality as method. DiGeSt. Journal of diversity and gender studies, 2(1-2), 39-44.

Evidence for Publicly Reported Quality Indicators in Residential Long-Term Care: A Systematic Review

Quality indicators (QIs) are used internationally to measure, compare and improve quality in residential long-term care. Public reporting of such indicators allows transparency and motivates local quality improvement initiatives. However, little is known about the quality of QIs. In a systematic literature review, we assessed which countries publicly report health-related QIs, whether stakeholders were involved in their development and the evidence concerning their validity and reliability. Most information was found in grey literature, with nine countries (USA, Canada, Australia, New Zealand and five countries in Europe) publicly reporting a total of 66 QIs in areas like mobility, falls, pressure ulcers, continence, pain, weight loss, and physical restraint. While USA, Canada and New Zealand work with QIs from the Resident Assessment Instrument – Minimal Data Set (RAI-MDS), the other countries developed their own QIs. All countries involved stakeholders in some phase of the QI development. However, we only found reports from Canada and Australia on both, the criteria judged (e.g. relevance, influenceability), and the results of structured stakeholder surveys. Interrater reliability was measured for some RAI QIs and for those used in Germany, showing overall good Kappa values (>0.6) except for QIs concerning mobility, falls and urinary tract infection. Validity measures were only found for RAI QIs and were mostly moderate. Although a number of QIs are publicly reported and used for comparison and policy decisions, available evidence is still limited. We need broader and accessible evidence for a responsible use of QIs in public reporting.

Impact of Health Systems on Life Expectancy in Taiwan, Singapore, and the USA: Similarities and Differences

Like Singapore, Taiwan has universal health care and universal long-term care (LTC). The USA has neither. Those who need LTC in the US pay out of pocket, buy private LTC insurance or spend down to qualify for Medicaid; there are inherent issues related to cost and quality. For example, nursing home care costs over US$100,000/year and only about 8% of the population has private LTC insurance. Many people become impoverished or struggle financially to qualify for Medicaid. Conversely, Taiwan has universal LTC insurance that offers comprehensive services for all, but it is relatively new and its impact remains to be seen. Similarities and differences related to LTC quality indicators such as functional independence, and the NCQA quality measures (e.g., effectiveness of care, access/availability) in Taiwan, Singapore and the US will be presented. The results of this comparison can inform policy makers and stakeholders leading to best practices. Part of a symposium sponsored by International Comparisons of Healthy Aging Interest Group.

A Rising Tide Lifts “Related” Boats—Post-Acute Care Quality Improvement is Associated With Improvement in Long-Term Care Quality in Nursing Homes

ObjectivesTo examine the relationship between post-acute care (PAC) quality improvement and long-term care (LTC) quality changes. DesignObservational study using national nursing home data from Nursing Home Compare linked to Brown University's LTCFocus data. Setting and ParticipantsFree-standing nursing homes serving PAC and LTC residents in the United States. MethodsThis study used pooled cross-sectional analysis with nursing home–level data from 2005 to 2010 (12,150 unique nursing homes). We used fixed effects models to examine the association between a 1-year change in PAC quality and a 1-year change in LTC quality, with a specific focus on related care domains. ResultsStrong and positive associations were found between related PAC and LTC care domains, particularly between the PAC and LTC influenza vaccination care domains (β = 0.30, P < .001) and the PAC and LTC pneumococcal vaccination care domains (β = 0.55, P < .001). Meanwhile, model results showed PAC quality changes essentially had no associations with unrelated LTC care domains. Conclusions and ImplicationsThis is the first study that examines the association of changes in quality between 2 overlapping but different care domains (ie, PAC and LTC) using multiple quality measures. Our findings indicate that nursing homes can manage concurrent quality improvement in PAC and LTC, particularly on care domains that are related. More research is needed to examine the mechanism that enables such concurrent quality improvement.

Prevalence of Worsening Problems Using Post-Stroke Checklist and Associations with Quality of Life in Patients with Stroke

Background and aimA post-stroke checklist was developed to improve the standard of long-term post-stroke care and health-related quality of life. We aimed to investigate the prevalence of worsening problems using a post-stroke checklist at 3, 6, and 12 months post-stroke and their associations with health-related quality of life in patients with stroke. MethodsIn stroke patients admitted between June 2014 and December 2015, post-stroke checklist and EuroQol-5D three level were assessed at post-stroke 3 (n=181), 6 (n=175), and 12 months (n=89). The prevalence of worsening problems and its association with EQ-5D index at post-stroke 3 and 6 months were analyzed. ResultsThe most frequently and continuously identified worsening problems were mood disturbances (reported by 8.8%, 16.0% and 13.5% of patients at 3, 6, and 12 months post-stroke, respectively). Worsening mobility was significantly associated with worse EQ-5D index at post-stroke 3 months (β= −0.583; 95% confidence interval [CI], −1.045 to −0.120; P=0.014). The worsening of mobility and communication was significantly associated with worse EQ-5D index at post-stroke 6 months (mobility: β= −0.170; 95% confidence interval [CI], −0.305 to −0.034; P=0.014, communication: β=−0.164; 95% confidence interval [CI], −0.309 to −0.020; P=0.026). ConclusionsA post-stroke checklist may be useful for detection of various subjective worsening problems during serial clinical follow-up after stroke. Appropriate rehabilitation and management strategy to solve the identified problems could improve the quality of life in stroke survivors.

409 - Trends in Involvement, Perceived Role, Role Overload and Self-efficacy of Family Carers of People with Dementia in Care Homes

IntroductionThe quality of long-term care provided to people with dementia (PwD) in care homes can be improved by implementing person-centered care. Family carers of PwD living in care homes are an important part of person-centered care. However, they often experience high levels of burden, even when a family member with dementia lives in a care home. This study examines trends in the involvement of family carers and their perceived role, role overload and self-efficacy.MethodsData from the Living Arrangements for People with Dementia study, a cross-sectional monitoring study that evaluates developments in care for PwD in care homes in the Netherlands, with four measurement cycles between 2008-2017 was used. Data from the three most current measurement cycles were used, with respectively 144, 47 and 49 participating care homes and 888, 392 and 401 participating family carers. Family involvement was measured by the number of hours per week that family carers visited the PwD and the type of activities they undertook. Perceived caregiving role was measured with the Family Perceptions of Caregiving Role instrument. We used the Self-Perceived Pressure by Informal Care to measure role overload and a 37-item questionnaire was used to measure self-efficacy. We investigated the changes over time (e.g., measurement cycles) of these measures.ResultsThe number of hours that family carers visited the PwD did not change over time. However, there was a trend towards an increase in the variety of activities they undertook. Their perceived caregiving role did not change over time. Self-efficacy of family carers increased over time and they reported more feelings of role overload.ConclusionsDuring the past decade, there has been an increasing trend towards family carers doing more diverse activities with PwD in carer homes. Family carers did feel more competent in their caring role, although their feelings of role overload also increased. Continuing attention is therefore needed for the psychological well-being of family carers after a person with dementia moves to a care home.