Development of the GeriatrICS, an ICF-based and person-centred assessment tool for evaluation of health-related problems in community-living older adults

Introduction: Ideally, older adults should receive person-centred care and support that meets their individual needs and wishes, taking all relevant health-related problems into account. The International Classification of Functioning, Disability and Health ICF might offer a basis for identification of these problems as it provides a unified language for evaluation of functioning and disability associated with someone’s health status. ICF Core Sets have been developed to describe the spectrum of disabilities of specific patient populations. Therefore, aim of this study was to develop a valid Geriatric ICF Core Set GeriatrICS reflecting all relevant health-related problems of community-living older adults without dementia. Methods: This study consisted of two sub-studies: 1 a written Delphi study to select ICF categories, and 2 assessing content validity in a cross-sectional study. For the Delphi study, a representative panel of experts older adults and non-medical experts on health-related problems due to ageing was constituted. Panel members had to select second-level categories from the ICF-classification relevant to community-living, non-demented older adults 75+, and had to reach consensus on this selection. For the validation study, older adults frail or with complex care needs were visited by a case manager district nurse or social worker who used the initial GeriatrICS as an assessment tool. Older adults had to rate all categories on a scale ranging from 0 no problem to 10 complete problem. Content validity of a category was guaranteed if ≥10% indicated a problem with that category. Results: 41 Delphi panel members obtained consensus in two rounds on 30 ICF-categories. Next, 267 older adults participated in the validation study. All categories met the criterion for content validity except for d530 Toileting. The final GeriatrICS consists of 29 categories: fourteen Body Functions categories, nine Activities and Participation categories and six Environmental Factors categories. Discussions and conclusions: This study resulted in a valid ICF Core Set GeriatrICS including 29 ICF categories representing the most relevant health-related problems among community-living older adults without the diagnosis of dementia. The GeriatrICS included categories from all ICF components, showing that older people’s health is a multidimensional construct. Compared to commonly used, profession-based tools, the GeriatrICS is unique as it is a population-based, cross-domain tool. Therefore, the GeriatrICS is a good starting point for the delivery of person-centred and integrated care. Lessons learned: The GeriatrICS may be used in person-centred and integrated care practice as an assessment tool, in order to tailor care and support to the needs of older adults. Analysis and interpretation of an older adult’s outcomes, and translation into an appropriate care plan, requires highly competent and experienced professionals. Limitations: Older adults with dementia or cognitive impairments may have been included in the validation study since dementia was not an exclusion criterion. Impact on the results is expected to be trivial as case managers were experienced interviewers and a partner or family member participated in the assessment in case of cognitive problems. Suggestions for future research: Future research should investigate the health-related problems of older adults with dementia and robust older adults

Integrated Care for Older Adults Improves Perceived Quality of Care:Results of a Randomized Controlled Trial of Embrace

BACKGROUND: All community-living older adults might benefit from integrated care, but evidence is lacking on the effectiveness of such services for perceived quality of care. To examine the impact of Embrace, a community-based integrated primary care service, on perceived quality of care. Stratified randomized controlled trial. Integrated care and support according to the "Embrace" model was provided by 15 general practitioners in the Netherlands. Based on self-reported levels of case complexity and frailty, a total of 1456 community-living older adults were stratified into non-disease-specific risk profiles ("Robust," "Frail," and "Complex care needs"), and randomized to Embrace or control groups. Embrace provides integrated, person-centered primary care and support to all older adults living in the community, with intensity of care dependent on risk profile. Primary outcome was quality of care as reported by older adults on the Patient Assessment of Integrated Elderly Care (PAIEC). Effects were assessed using mixed model techniques for the total sample and per risk profile. Professionals' perceived level of implementation of integrated care was evaluated within the Embrace condition using the Assessment of Integrated Elderly Care. Older adults in the Embrace group reported a higher level of perceived quality of care than those in the control group (B = 0.33, 95 % CI = 0.15-0.51, ES d = 0.19). The advantages of Embrace were most evident in the "Frail" and "Complex care needs" risk profiles. We found no significant advantages for the "Robust" risk profile. Participating professionals reported a significant increase in the perceived level of implementation of integrated care (ES r = 0.71). This study shows that providing a population-based integrated care service to community-living older adults improved the quality of care as perceived by older adults and participating professionals

Emotion Recognition and Traffic-Related Risk-Taking Behavior in Patients with Neurodegenerative Diseases

Objectives : Neurodegenerative diseases (NDDs), such as Alzheimer's disease, frontotemporal dementia, dementia with Lewy bodies, and Huntington's disease, inevitably lead to impairments in higher-order cognitive functions, including the perception of emotional cues and decision-making behavior. Such impairments are likely to cause risky daily life behavior, for instance, in traffic. Impaired recognition of emotional expressions, such as fear, is considered a marker of impaired experience of emotions. Lower fear experience can, in turn, be related to risk-taking behavior. The aim of our study was to investigate whether impaired emotion recognition in patients with NDD is indeed related to unsafe decision-making in risky everyday life situations, which has not been investigated yet.  Methods: Fifty-one patients with an NDD were included. Emotion recognition was measured with the Facial Expressions of Emotions: Stimuli and Test (FEEST). Risk-taking behavior was measured with driving simulator scenarios and the Action Selection Test (AST). Data from matched healthy controls were used: FEEST (n = 182), AST (n = 36), and driving simulator (n = 18).   Results: Compared to healthy controls, patients showed significantly worse emotion recognition, particularly of anger, disgust, fear, and sadness. Furthermore, patients took significantly more risks in the driving simulator rides and the AST. Only poor recognition of fear was related to a higher amount of risky decisions in situations involving a direct danger.   Conclusions: To determine whether patients with an NDD are still fit to drive, it is crucial to assess their ability to make safe decisions. Measuring emotion recognition may be a valuable contribution to this judgment

Construct Validity and Reliability of the SARA Gait and Posture Sub-scale in Early Onset Ataxia

Aim: In children, gait and posture assessment provides a crucial marker for the early characterization, surveillance and treatment evaluation of early onset ataxia (EOA). For reliable data entry of studies targeting at gait and posture improvement, uniform quantitative biomarkers are necessary. Until now, the pediatric test construct of gait and posture scores of the Scale for Assessment and Rating of Ataxia sub-scale (SARA) is still unclear. In the present study, we aimed to validate the construct validity and reliability of the pediatric (SARA(GAIT/POSTURE)) sub-scale.Methods: We included 28 EOA patients [15.5 (6-34) years; median (range)]. For inter-observer reliability, we determined the ICC on EOA SARA(GAIT/POSTURE) subscores by three independent pediatric neurologists. For convergent validity, we associated SARA(GAIT/POSTURE) sub-scores with: (1) Ataxic gait Severity Measurement by Klockgether (ASMK; dynamic balance), (2) Pediatric Balance Scale (PBS; static balance), (3) Gross Motor Function Classification Scale-extended and revised version (GMFCSE&amp; R), (4) SARA-kinetic scores (SARA(KINETIC); kinetic function of the upper and lower limbs), (5) Archimedes Spiral (AS; kinetic function of the upper limbs), and (6) total SARA scores (SARA(TOTAL); i.e., summed SARA(GAIT/POSTURE), SARA(KINETIC), and SARA(SPEECH) sub-scores). For discriminant validity, we investigated whether EOA co-morbidity factors (myopathy and myoclonus) could influence SARA(GAIT/POSTURE) sub-scores.Results: The inter-observer agreement (ICC) on EOA SARA(GAIT/POSTURE) sub-scores was high (0.97). SARA(GAIT/POSTURE) was strongly correlated with the other ataxia and functional scales [ASMK (r(s) = -0.819; p &lt;0.001); PBS (r(s) = -0.943; p &lt;0.001); GMFCS-E&amp; R (rs = -0.862; p &lt;0.001); SARA(KINETIC) (r(s) = 0.726; p &lt;0.001); AS (r(s) = 0.609; p = 0.002); and SARATOTAL (rs = 0.935; p &lt;0.001)]. Comorbid myopathy influenced SARA(GAIT/POSTURE) scores by concurrent muscle weakness, whereas comorbid myoclonus predominantly influenced SARA(KINETIC) scores.Conclusion: In young EOA patients, separate SARA(GAIT/POSTURE) parameters reveal a good inter-observer agreement and convergent validity, implicating the reliability of the scale. In perspective of incomplete discriminant validity, it is advisable to interpret SARA(GAIT/POSTURE) scores for comorbid muscle weakness.</p

Stability and relative validity of the Neuromuscular Disease Impact Profile (NMDIP)

Abstract Background The aim of this study was to examine the stability and relative validity (RV) of the Neuromuscular Disease Impact Profile (NMDIP) using criterion-related groups. In a previous study the NMDIP-scales showed good internal consistency, convergent and discriminant validity. Known-groups analysis showed that the NMDIP discriminates between categories of extent of limitations. Methods A cross-sectional postal survey study was performed on patients diagnosed with a NMD and registered at the Department of Neurology, University Medical Center Groningen, the Netherlands. Participants were asked to complete the preliminary NMDIP, the Medical Outcome study Short Form Questionnaire (SF-36), the World Health Organization Quality Of Life-abbreviation version (WHOQOL-bref), and two generic domain specific measures: the Groningen Activity Restriction Scale (GARS) and the Impact on Participation and Autonomy Questionnaire (IPAQ). The variables ‘Extent of Limitations’ and ‘Quality of Life’ were used to create criterion-related groups. Stability over time was tested using the Wilcoxon Signed Rank Test for paired samples and the intraclass correlation coefficients for repeated measures. RV was examined by comparing the ability of NMDIP with generic multidimensional health impact measures, and domain specific measures in discriminating between criterion-related subgroups using the Kruskal-Wallis H-test. Results Response rate was 70% (n = 702). The NMDIP-scales showed sufficient stability over time, and satisfactory or strong RV. In general, the NMDIP scales performed as well as or better than the concurrent measurement instruments. Conclusions The NMDIP proved to be a valid and reliable disease-targeted measure with a broad scope on physical, psychological and social functioning

Results of a cross-sectional study on health-related problems of community-living older adults using the GeriatrICS, an ICF-based assessment tool

Introduction: Ideally, older adults should receive person-centred care and support that meets their individual needs and wishes, taking all relevant health-related aspects into account. A first step towards that goal is to gain insight into their health-related problems. For that purpose, a person-centred ICF Core Set for community-living older adults, the GeriatrICS, was developed. The objectives of this study were to assess the prevalence and severity of health-related problems in community-living older adults, and to assess the differences between subgroups of older adults: those with complex care needs, frail and robust older adults. Methods: A cross-sectional study was conducted among older adults receiving person-centred and integrated care and support from Embrace, a person-centred and integrated service. Older adults with complex care needs n=163 and frail older adults n=104 were interviewed by case managers, who assessed the older adults using the GeriatrICS. Robust older adults n=274 received a questionnaire version of the GeriatrICS. All older adults had to rate the items on a scale ranging from 0 no problem to 10 complete problem. We examined data per item in terms of prevalence of problems and severity. Differences in prevalence between subgroups was tested using Chi-square tests and differences in severity were tested using Mann-Whitney U tests. Results: Mean age of participants n=541 was 80.7 years SD 4.4, 56% was female, and 51% had a lower educational level.Preliminary analyses showed that, overall, the most prevalent and severe problems were related to the clusters Mobility, Mental Functions and Physical Health. For example, prevalence of Mobility-related problems: Complex care needs 52.0%, Frail 55.6% and Robust 43.6%, and severity: Complex care needs 1.9, Frail 2.4 and Robust 1.0. Although prevalence was comparable among frail older adults and those with complex care needs, results showed a trend in higher severity scores for frail participants. Robust older adults also showed health-related problems e.g. Physical Health: prevalence 33.8%, severity 0.8, but less frequent and less severe compared to participants with complex care needs 45.7%, 1.5 and frail participants 47.1%, 1.8. Discussions and conclusions: We assessed health-related problems due to ageing using the GeriatrICS in a community-sample of older adults. Frail older adults and those with complex care needs showed the highest prevalence of problems, but frail participants experienced them as more severe. Besides, robust older adults already showed health-related problems, indicating the need for prevention. Lessons learned: Prevention of health-related problems in older adults is necessary and should also be targeted at robust older adults.Results suggest that using the GeriatrICS could be a good starting point for the development of person-centred, proactive and preventive care and support programs. Limitations: We may have to deal with common method bias, due to the difference in assessment methods interview by a case manager versus a questionnaire version. However, in both situations, the assessment was self-reported because the older adults had to indicate the severity of their problems. Suggestions for future research: Future studies should examine the concurrent validity of both assessment methods using the GeriatrICS

Effects of a population-based, person-centred and integrated care service on health, wellbeing and self-management of community-living older adults:A randomised controlled trial on Embrace

<div><p>Objective</p><p>To evaluate the effects of the population-based, person-centred and integrated care service ‘Embrace’ at twelve months on three domains comprising health, wellbeing and self-management among community-living older people.</p><p>Methods</p><p>Embrace supports older adults to age in place. A multidisciplinary team provides care and support, with intensity depending on the older adults’ risk profile. A randomised controlled trial was conducted in fifteen general practices in the Netherlands. Older adults (≥75 years) were included and stratified into three risk profiles: Robust, Frail and Complex care needs, and randomised to Embrace or care as usual (CAU). Outcomes were recorded in three domains. The EuroQol-5D-3L and visual analogue scale, INTERMED for the Elderly Self-Assessment, Groningen Frailty Indicator and Katz-15 were used for the domain ‘Health.’ The Groningen Well-being Indicator and two quality of life questions measured ‘Wellbeing.’ The Self-Management Ability Scale and Partners in Health scale for older adults (PIH-OA) were used for ‘Self-management.’ Primary and secondary outcome measurements differed per risk profile. Data were analysed with multilevel mixed-model techniques using intention-to-treat and complete case analyses, for the whole sample and per risk profile.</p><p>Results</p><p>1456 eligible older adults participated (49%) and were randomized to Embrace (n(T0) = 747, n(T1) = 570, mean age 80.6 years (SD 4.5), 54.2% female) and CAU (n(T0) = 709, n(T1) = 561, mean age 80.8 years (SD 4.7), 55.6% female). Embrace participants showed a greater–but clinically irrelevant–improvement in self-management (PIH-OA Knowledge subscale effect size [ES] = 0.14), and a greater–but clinically relevant–deterioration in health (ADL ES = 0.10; physical ADL ES = 0.13) compared to CAU. No differences in change in wellbeing were observed. This picture was also found in the risk profiles. Complete case analyses showed comparable results.</p><p>Conclusions</p><p>This study found no clear benefits to receiving person-centred and integrated care for twelve months for the domains of health, wellbeing and self-management in community-living older adults.</p></div

Long-term advantages of person-centred and integrated care:results of a longitudinal study on Embrace

Introduction: Embrace1 is a population-based, person-centred, and integrated care service for community-living older adults that combines the Chronic Care Model with risk profiles based on a population health management model. A multidisciplinary Elderly Care Team organizes and evaluates care and support, with intensity depending on an older adult’s risk profile. Embrace has been implemented since 2012 and showed positive outcomes after 12 months regarding patient outcomes, quality of care, and costs. Aim of this study was to assess the long-term outcomes, overall and by risk profile. Methods: We performed a longitudinal study on patient outcomes, quality of care, and costs, with evaluation of change after 12, 24, and 36 months compared to baseline. Results: In total, 1308 older adults participated in the study mean age 80.7 years SD 4.6, 55% female, 57% low educational level. The risk profile distribution changed after 12 and 24 months, with an increase in frail participants Robust 66% vs 39% after 24 months, Frail 17% vs 41%, Complex care needs 18% vs 20%. Overall, general health EQ-VAS remained stable across measurement moments. Quality of life ‘compared to the year before’ SF-36 was stable after 12 months, and decreased after 24 months p=0.026, ES=0.12 and 36 months p0.001, ES=0.61. Discussion and conclusion: Overall, long-term outcomes of Embrace for the older adults are beneficial, particularly for older adults with complex care needs. It seems that Embrace has halted the declining trends in general health and well-being associated with ageing, as well as the related costs increase. Lessons learned: Implementation of Embrace among frail older adults can be improved. Limitations: The lack of a control group. Suggestions for future research: Further research should focus on preventive en proactive support programs for older adults

Experiences of Community-Living Older Adults Receiving Integrated Care Based on the Chronic Care Model:A Qualitative Study

Integrated care models aim to solve the problem of fragmented and poorly coordinated care in current healthcare systems. These models aim to be patient-centered by providing continuous and coordinated care and by considering the needs and preferences of patients. The objective of this study was to evaluate the opinions and experiences of community-living older adults with regard to integrated care and support, along with the extent to which it meets their health and social needs.Semi-structured interviews were conducted with 23 older adults receiving integrated care and support through "Embrace," an integrated care model for community-living older adults that is based on the Chronic Care Model and a population health management model. Embrace is currently fully operational in the northern region of the Netherlands. Data analysis was based on the grounded theory approach.Responses of participants concerned two focus areas: 1) Experiences with aging, with the themes "Struggling with health," "Increasing dependency," "Decreasing social interaction," "Loss of control," and "Fears;" and 2) Experiences with Embrace, with the themes "Relationship with the case manager," "Interactions," and "Feeling in control, safe, and secure". The prospect of becoming dependent and losing control was a key concept in the lives of the older adults interviewed. Embrace reinforced the participants' ability to stay in control, even if they were dependent on others. Furthermore, participants felt safe and secure, in contrast to the fears of increasing dependency within the standard care system.The results indicate that integrated care and support provided through Embrace met the health and social needs of older adults, who were coping with the consequences of aging

Paediatric motor phenotypes in early-onset ataxia, developmental coordination disorder, and central hypotonia

Aims To investigate the accuracy of phenotypic early-onset ataxia (EOA) recognition among developmental conditions, including developmental coordination disorder (DCD) and hypotonia of central nervous system origin, and the effect of scientifically validated EOA features on changing phenotypic consensus. Method We included 32 children (4-17y) diagnosed with EOA (n=11), DCD (n=10), and central hypotonia (n=11). Three paediatric neurologists independently assessed videotaped motor behaviour phenotypically and quantitatively (using the Scale for Assessment and Rating of Ataxia [SARA]). We determined: (1) phenotypic interobserver agreement and phenotypic homogeneity (percentage of phenotypes with full consensus by all three observers according to the underlying diagnosis); (2) SARA (sub)score profiles; and (3) the effect of three scientifically validated EOA features on phenotypic consensus. Results Phenotypic homogeneity occurred in 8 out of 11, 2 out of 10, and 1 out of 11 patients with EOA, DCD, and central hypotonia respectively. Homogeneous phenotypic discrimination of EOA from DCD and central hypotonia occurred in 16 out of 21 and 22 out of 22 patients respectively. Inhomogeneously discriminated EOA and DCD phenotypes (5 out of 21) revealed overlapping SARA scores with different SARA subscore profiles. After phenotypic reassessment with scientifically validated EOA features, phenotypic homogeneity changed from 16 to 18 patients. Interpretation In contrast to complete distinction between EOA and central hypotonia, the paediatric motor phenotype did not reliably distinguish between EOA and DCD. Reassessment with scientifically validated EOA features could contribute to a higher phenotypic consensus. Early-onset ataxia (EOA) and central hypotonia motor phenotypes were reliably distinguished. EOA and developmental coordination disorder (DCD) motor phenotypes were not reliably distinguished. The EOA and DCD phenotypes have different profiles of the Scale for Assessment and Rating of Ataxia