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Patient-centeredness in older adults with multimorbidity: results of an online expert delphi study
- Authors:
- KIVELITZ Laura, et al
- Journal article citation:
- Gerontologist, 61(7), 2021, pp.1008-1018.
- Publisher:
- Oxford University Press
Background and Objectives: Older adults suffering from multimorbidity represent a priority target group for patient-centeredness (PC). We aimed to investigate the transferability of an existing integrated model of PC comprising 15 dimensions on the care of older adults with multimorbidity from an expert perspective. Research Design and Methods: A total of 242 experts were invited to participate in a 2-round online Delphi study. In round 1, they were asked to (a) individually rate relevance and clarity of the dimensions, (b) add missing dimensions, and (c) prioritize the dimensions. In round 2, experts received results of round 1 and were asked to rerate their ratings. Results: Forty-eight experts participated in round 1 and 39 in round 2. Ten dimensions were rated as sufficiently relevant and clear, including one new dimension (“prognosis and life expectancy, burden of treatment”). Four dimensions were rated as relevant but insufficiently clear. One dimension failed to reach our validation threshold on both criteria. The 5 dimensions rated as most important were: “patient as a unique person,” “clinician–patient communication,” “patient involvement in care,” “physical, cognitive, and emotional support,” and “involvement of family and friends.” Discussion and Implications: The experts’ ratings were higher regarding relevance than regarding clarity, which emphasizes the still existing conceptual uncertainty of PC. Our results give further directions regarding the operationalization of PC in older adults with multimorbidity, which is essential for its implementation in routine care. Further refined using focus groups with geriatric patients, our adapted model serves as a basis for a systematic review of assessment instruments. (Edited publisher abstract)
Measuring older peoples’ experiences of person-centred coordinated care: experience and methodological reflections from applying a patient reported experience measure in SUSTAIN
- Authors:
- REYNOLDS Jillian, et al
- Journal article citation:
- International Journal of Integrated Care, 21(3), 2021, Online only
- Publisher:
- International Foundation for Integrated Care
Introduction: While several evaluation studies on (cost-)effectiveness of integrated care have been conducted in recent years, more insight is deemed necessary into integrated care from the perspective of service users. In the context of a European project on integrated care for older people living at home (SUSTAIN), this paper shares the experience and methodological reflections from applying a Patient Reported Experience Measure (PREM) on person-centred coordinated care -the P3CEQ- among this population. Methods: A combination of quantitative and qualitative data and analysis methods was used to assess the usability and the quality of applying a PREM among older people presenting complex care needs, using the P3CEQ delivery in SUSTAIN as a case study. 228 service users completed the P3CEQ and nine SUSTAIN researchers participated in a consultation about their experience administering the questionnaire. P3CEQ scores were analysed quantitatively using principal component analysis and multilevel linear regression. P3CEQ open responses and researcher notes collected when administering the questionnaire were thematically analysed. Results: Service user inclusion was high and most P3CEQ items had low non-response rates. Quantitative analysis and researcher experience indicate the relevance of face-to-face administration for obtaining such an amount of data in this population group. The presence of a carer increased inclusion of more vulnerable respondents, such as the cognitively impaired, but posed a challenge in data interpretation. Although several P3CEQ items were generally understood as intended by questionnaire developers, the analysis of open responses highlights how questions can lead to diverging and sometimes narrow interpretations by respondents. Cognitive impairment and a higher educational attainment were associated with lower levels of perceived person-centredness of care. Conclusion: This study shows essential preconditions to meaningfully collect and analyse PREM data on older peoples’ experiences with integrated care: face-to-face administration away from care providers, collection of reasons for non-response and open comments providing nuances to answers, and multilevel modelling taking into account diversity in the target population. Several areas of improvement for future PREM use in this population have been identified: use of administration and coding guides, inclusion of clear and easy to understand definitions and examples illustrating what questions do and do not mean, measures of the expectations of person-centred coordinated care, and procedures ensuring sound ethical research. These methodological learnings can enhance future evaluation of integrated care from a service user perspective. (Edited publisher abstract)
Development and initial testing of a measure of person-directed care
- Authors:
- WHITE Diana L., NEWTON-CURTIS Linda, LYONS Karen S.
- Journal article citation:
- Gerontologist, 48(S1), July 2008, pp.114-123.
- Publisher:
- Oxford University Press
In this study a new measure designed to assess person-directed care (PDC) practices in long-term care was empirically tested. After reviewing the literature, five areas related to PDC were identified: personhood, comfort care, autonomy, knowing the person, and support for relationships. An additional component of environmental support was also identified. Items were then developed to reflect the constructs, and a series of lay and professional experts in the field reviewed the items for face validity. The resulting 64-item PDC and Environmental Support for PDC measure was distributed to direct care workers and nursing, administrative, and other staff from a range of long-term settings across Oregon, culminating in a sample size of 430 participants from eight sites. Exploratory factor analyses was employed to reveal the underlying structure of the measure. After 14 items were dropped from the measure, it attained good simple structure, revealing five PDC constructs as previously theorized and three Environmental Support constructs: Support for Work With Residents; Person-Directed Environment for Residents, and Management/Structural Support. All constructs were conceptually distinct and internally consistent, and, as expected, all were positively correlated.
Assessing older people with complex care needs using EASY-Care, a pre-defined assessment tool
- Authors:
- LAMBERT Susan, et al
- Journal article citation:
- Research Policy and Planning, 25(1), 2007, pp.43-56.
- Publisher:
- Social Services Research Group
Nurse assessors undertook assessments of 119 older people living in a care home setting or awaiting discharge from hospital. Older people who had been assessed also completed questionnaires to evaluate use of the tool. Assessors took part in semi-structured focus groups or interviews. The results suggest that EASY-Care was considered in general to be useful in exploring needs and acceptable to both assessors and older people. Assessors thought it was person-centred in that open-ended questions allowed people to describe their circumstances in their own words. Some assessors were less comfortable with the open-ended questioning approach and felt it made collection information difficult and was likely to cause confusion. One the whole, use of the tool was considered to facilitate rapport. However, some questions provoked anxiety and assessors needed to use their professional judgement to identify non-verbal cues of anxiety in order to achieve a person-centred assessment. Professional training and skills were essential to identify non-verbal cues of distress and to moderate potentially difficult situations where older people became upset during assessment.
Comprehensive geriatric assessments in integrated care programs for older people living at home: a scoping review
- Authors:
- STOOP Annerieke, et al
- Journal article citation:
- Health and Social Care in the Community, 27(5), 2019, pp.e549-e566.
- Publisher:
- Wiley
In many integrated care programs, a comprehensive geriatric assessment (CGA) is conducted to identify older people's problems and care needs. Different ways for conducting a CGA are in place. However, it is still unclear which CGA instruments and procedures for conducting them are used in integrated care programs, and what distinguishes them from each other. Furthermore, it is yet unknown how and to what extent CGAs, as a component of integrated care programs, actually reflect the main principles of integrated care, being comprehensiveness, multidisciplinarity and person‐centredness. Therefore, the objectives of this study were to: (a) describe and compare different CGA instruments and procedures conducted within integrated care programs for older people living at home, and (b) describe how the principles of integrated care were applied in these CGAs. A scoping review of the scientific literature on CGAs in the context of integrated care was conducted for the period 2006–2018. Data were extracted on main characteristics of the identified CGA instruments and procedures, and on how principles of integrated care were applied in these CGAs. Twenty‐seven integrated care programs were included in this study, of which most were implemented in the Netherlands and the United States. Twenty‐one different CGAs were identified, of which the EASYcare instrument, RAI‐HC/RAI‐CHA and GRACE tool were used in multiple programs. The majority of CGAs seemed to reflect comprehensiveness, multidisciplinarity and person‐centredness, although the way and extent to which principles of integrated care were incorporated differed between the CGAs. This study highlights the high variability of CGA instruments and procedures used in integrated care programs. This overview of available CGAs and their characteristics may promote (inter‐)national exchange of CGAs, which could enable researchers and professionals in choosing from the wide range of existing CGAs, thereby preventing them from unnecessarily reinventing the wheel. (Publisher abstract)
The Cognitive Daisy – a novel method for recognising the cognitive status of older adults in residential care: innovative practice
- Authors:
- HUDSON John M., POLLUX Petra
- Journal article citation:
- Dementia: the International Journal of Social Research and Practice, 18(5), 2019, pp.1948-1958.
- Publisher:
- Sage
The Cognitive Daisy is an innovative assessment system created to provide healthcare staff with an instant snapshot of the cognitive status of older adults in residential care. The Cognitive Daisy comprises a flower head consisting of 15 colour coded petals depicting information about: visual-spatial perception, comprehension, communication, memory and attention. This study confirmed the practicality of the Cognitive Daisy protocol for assessing cognition in a sample of 33 older adults living in residential care and endorsed the use of the Cognitive Daisy as a tool for recognising the cognitive status of care home residents. (Edited publisher abstract)
Effects of Dementia Care Mapping on well‐being and quality of life of older people with intellectual disability: a quasi‐experimental study
- Authors:
- SCHAAP Feija D., et al
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 32(4), 2019, pp.849-860.
- Publisher:
- Wiley
Background: The ageing of people with intellectual disability, accompanied with consequences like dementia, challenges intellectual disability‐care staff and creates a need for supporting methods, with Dementia Care Mapping (DCM) as a promising possibility. This study examined the effect of DCM on the quality of life of older people with intellectual disability. Methods: This study performed a quasi‐experimental study in 23 group homes for older people with intellectual disability in the Netherlands, comparing DCM (n = 113) with care‐as‐usual (CAU; n = 111). Using three measures, this study assessed the staff‐reported quality of life of older people with intellectual disability. Results: DCM achieved no significantly better or worse quality of life than CAU. Effect sizes varied from 0.01 to −0.22. Adjustments for covariates and restriction of analyses to people with dementia yielded similar results. Conclusion: The finding that DCM does not increase quality of life of older people with intellectual disability contradicts previous findings and deserves further study. (Edited publisher abstract)
Measuring the patient experience in community mental health services for older people: a study of the Net Promoter Score using the Friends and Family Test in England
- Authors:
- WILBERFORCE Mark, et al
- Journal article citation:
- International Journal of Geriatric Psychiatry, 34(1), 2019, pp.31-37.
- Publisher:
- Wiley
Objectives: The research aimed to explore the value of the Net Promoter Score as a service improvement tool and an outcome measure. The study objectives were to (1) explore associations between the Net Promoter Score with patient and service‐receipt characteristics; (2) evaluate the strength of association between the Net Promoter Score and a satisfaction score; and (3) evaluate its test‐retest reliability. Methods: A postal survey was sent to service users on caseloads of community mental health teams for older people in four localities of England. The survey collected the Net Promoter Score, a single satisfaction question, and data on socio‐demographics, clinical profile, and service receipt. Analysis used non‐parametric tests of association and exploratory least squares regression. A second survey was administered for test‐retest reliability analysis. Fieldwork concluded in April 2016. Results: For 352 respondents, the Net Promoter Score was negatively related to age and was lowest for those still within 6 months of their initial referral. Receiving support from a psychiatrist and/or support worker was linked to higher scores. A strong but imperfect correlation coefficient with the satisfaction score indicates they evaluate related but distinct constructs. It had a reasonable test‐retest reliability, with a weighted kappa of 0.706. Conclusions: Despite doubts over its validity in community mental health services, the Net Promoter Score may produce results of value to researchers, clinicians, service commissioners, and managers, if part of wider data collection. However, multi‐item measures would provide greater breadth and improved reliability. (Edited publisher abstract)
Financial decision-making abilities and financial exploitation in older African Americans: Preliminary validity evidence for the Lichtenberg Financial Decision Rating Scale (LFDRS)
- Authors:
- LICHTENBERG Peter A., FICKER Lisa J., RAHMAN-FILIPIAK Annalise
- Journal article citation:
- Journal of Elder Abuse and Neglect, 28(1), 2016, pp.14-33.
- Publisher:
- Taylor and Francis
- Place of publication:
- Philadelphia, USA
This study examines preliminary evidence for the Lichtenberg Financial Decision Rating Scale (LFDRS), a new person-centred approach to assessing capacity to make financial decisions, and its relationship to self-reported cases of financial exploitation in 69 older African Americans. More than one third of individuals reporting financial exploitation also had questionable decisional abilities. Overall, decisional ability score and current decision total were significantly associated with cognitive screening test and financial ability scores, demonstrating good criterion validity. Study findings suggest that impaired decisional abilities may render older adults more vulnerable to financial exploitation, and that the LFDRS is a valid tool. (Edited publisher abstract)
A Patient Reported Experience Measure (PREM) for use by older people in community services
- Authors:
- TEALE E.A., YOUNG J.B.
- Journal article citation:
- Age and Ageing, 44(4), 2015, pp.667-672.
- Publisher:
- Oxford University Press
Background: Intermediate care (IC) services operate between health and social care and are an essential component of integrated care for older people. Patient Reported Experience Measures (PREMs) offer an objective measure of user experience and a practical way to measure person-centred, integrated care in IC settings. Objective: To describe the development of PREMs suitable for use in IC services and to examine their feasibility, acceptability and scaling properties. Setting: 131 bed-based and 143 home-based or re-ablement IC services in England. Methods: PREMs for each of home- and bed-based IC services were developed through consensus. These were incorporated into the 2013 NAIC and distributed to 50 consecutive users of each bed-based and 250 users of each home-based service. Return rates and patterns of missing data were examined. Scaling properties of the PREMs were examined with Mokken analysis. Results: 1,832 responses were received from users of bed-based and 4,627 from home-based services (return rates 28 and 13%, respectively). Missing data were infrequent. Mokken analysis of completed bed-based PREMs (1,398) revealed 8 items measuring the same construct and forming a medium strength (Loevinger H 0.44) scale with acceptable reliability (ρ = 0.76). Analysis of completed home-based PREMs (3,392 records) revealed a medium-strength scale of 12 items (Loevinger H 0.41) with acceptable reliability (ρ = 0.81). Conclusions: The two PREMs offer a method to evaluate user experience of both bed- and home-based IC services. Each scale measures a single construct with moderate scaling properties, allowing summation of scores to give an overall measure of experience. (Publisher abstract)