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Objective: To assess the prevalence, severity, and change in health-related problems in a sample of older adults who received individual care and support from Embrace, for the whole sample, per subgroup based on complexity of care needs and frailty, and for those who had at baseline a health-related problem., Design: A pretest-posttest study with assessments at baseline and after 12 months., Setting: Community., Participants: Older adults aged 75 years and older (N=136) who are frail (n=56) or who have complex care needs (n=80)., Intervention: Participants received care and support by Embrace, a person-centered and integrated care service for community-living older adults supporting them to age in place. A multidisciplinary team provided care and support, with intensity depending on the older adults' risk profile., Main Outcome Measure: Health-related problems as perceived by older adults and measured with the Geriatric International Classification of Functioning, Disability and Health Core Set., Results: Health-related problems were related to 6 coherent clusters: (1) Mental Functions; (2) Physical Health; (3) Mobility; (4) Personal Care; (5) Nutrition; and (6) Support. The most prevalent and most severe problems at baseline were related to Mental Functions and Mobility. Changes in the prevalence of problems after 12 months varied. Severity scores decreased or remained stable, except for Mobility items which showed a varying changing pattern in participants with complex care needs. Prevalence and severity of problems for those with a problem at baseline decreased after 12 months. Frail participants with a problem had higher baseline severity scores than those with complex care needs experiencing a problem, but differences in changes between individuals who are frail and those with complex care needs were small., Conclusions: The results are encouraging and may indicate that individual, person-centered and integrated care and support from Embrace offers a route to counteracting the decline in physical, cognitive and social functioning associated with aging., (Copyright © 2019 American Congress of Rehabilitation Medicine. Published by Elsevier Inc. All rights reserved.)

Purpose: People with neuromuscular disease experience lower quality of life levels than people from the general population. We examined the prevalence and severity of a broad range of neuromuscular disease-related disabilities and their impact on health-related quality of life., Materials and Methods: A cross-sectional postal survey study was conducted among patients diagnosed with neuromuscular disease. Patients completed the Neuromuscular Disease Impact Profile, a disease-related disability impact questionnaire, and two generic health-related quality of life questionnaires: the medical outcome study Short Form Questionnaire and the World Health Organization Quality of Life-bref. The impact of disabilities on quality of life was estimated using multiple regression analyses., Results: Six hundred sixty two patients (68% response rate) completed the questionnaires. There were no differences in quality of life between diagnosis-based subgroups. 'Impairments in muscle functions' had the highest prevalence and severity scores in the total sample and diagnosis-based subgroups. Neuromuscular disease-related disabilities showed strong and independent associations with all aspects of health-related quality of life. 'Impairments in mental functions and pain' was the most important predictor of health-related quality of life followed by 'restrictions in participation in life situations'., Conclusions: Although 'impairment in muscle functions' is the most prevalent and severe disability, the 'impairments in mental functions and pain' have a strong association with health-related quality of life in patients with a neuromuscular disease. Implications for rehabilitation Disease-related disabilities have a strong and independent associations with all aspects of health-related quality of life. Although health-related domains of quality of life are affected by the neuromuscular disease, the general quality of life is quite good. The most prevalent and severe disability in total group and diagnosis-based subgroups is 'impairments in muscle functions'. The most significant predictor in health-related quality of life is 'impairments in mental functions and pain'.

Introduction: Pro-active assessment programs are increasingly used to improve care for older adults. These programs include comprehensive geriatric tailored to individual patient preferences. Evidence for the effects of these programs on patient outcomes is nevertheless scarce or ambiguous. Explaining these dissatisfying results is difficult due to the multi-component nature of the programs. The objective of the current study was to explore and explain the experience of older adults participating in a pro-active assessment program, to help to clarify the effects., Methods: Semi-structured in-depth interviews were held with 25 participants of a pro-active assessment program for frail community-dwelling adults aged 65+. This study was part of an evaluation study on the effects of the program. Transcripts were analysed with thematic analysis and cross-case analysis., Results: The participants' mean age was 78.5 (SD 6.9) and 56% was female. The majority of the participants were satisfied with the program but based this on communication aspects, since only a few of them expressed real program benefits. Participant experiences could be clustered in six themes: (1) All participants expressed the need for a holistic view which was covered in the program, (2) the scope of the CGA was broader than expected or unclear, (3) the program delivered unexpected but valued help, (4) participants described a very low sense of ownership, (5) timing of the program implementation or the CGA was difficult and(6), participants and care workers had a different view on what to consider as a problem. These experiences could be explained by three program components: the degree of (the lack of) integration of the program within usual care, the pro-active screening method and the broader than expected, but appreciated multi-domain approach., Conclusion: Older adults' need for a holistic view is covered by this outpatient assessment program. However, their engagement and the correct timing of the program are hampered by the pro-active recruitment and the limited integration of the program within existing care. Furthermore, satisfaction seems an insufficient guiding factor when evaluating CGA programs for older adults because it does not reflect the impact of the program.

As the population ages, the risk of becoming malnourished increases. Research has shown that poor oral health can be a risk factor for malnutrition in institutionalized elderly. However, it remains unclear whether oral health problems, edentulousness and health-related quality of life also pose a risk for malnutrition in community-dwelling older adults. In this cross-sectional observational study, 1325 community-living elderly (≥75 years) were asked to complete questionnaires regarding nutritional status, oral status (edentulous, remaining teeth, or implant-supported overdentures), oral health problems, health-related quality of life (HRQoL), frailty, activities of daily living (ADL) and complexity of care needs. Univariate and multivariate logistic regression analyses were performed with nutritional status as dependent variable. Of the respondents, 51% ( n = 521) were edentulous, 38.8% ( n = 397) had remaining teeth and 10.2% ( n = 104) had an implant-supported overdenture. Elderly with complex care needs were malnourished most frequently, followed by frail and robust elderly (10%, 4.5% and 2.9%, respectively). Malnourished elderly reported more frequent problems with chewing and speech when compared with well-nourished elderly (univariate analysis). However, multivariate analysis did not show an association between malnutrition and oral health problems and edentulousness, although HRQoL was associated with malnutrition (odds ratio (OR) 0.972, confidence interval (CI) 0.951⁻0.955). Based on the results of this cross-sectional study, it can be concluded that poor HRQoL is significantly associated with malnutrition; however, edentulousness and oral health problems are not.

Background: Due to the rise in the number of older adults within the population, healthcare demands are changing drastically, all while healthcare expenditure continues to grow. Person-centered and integrated-care models are used to support the redesigning the provision of care and support. Little is known, however, about how redesigning healthcare delivery affects the professionals involved., Objectives: To explore how district nurses and social workers experience their new professional roles as case managers within Embrace, a person-centered and integrated-care service for community-living older adults., Methods: We performed a qualitative study consisting of in-depth interviews with case managers (district nurses, n = 6; social workers, n = 5), using a topic-based interview guide. Audiotaped interviews were transcribed verbatim and analyzed using qualitative content analysis., Results: The experiences of the case managers involved four major themes: 1) the changing relationship with older adults, 2) establishing the case-manager role, 3) the case manager's toolkit, and 4) the benefits of case management. Within these four themes, subthemes addressed the shift to a person-centered approach, building a relationship of trust, the process of case management, knowledge and experience, competencies of and requirements for case managers, and the differences in professional background., Discussion: We found that this major change in role was experienced as a learning process, one that provided opportunities for personal and professional growth. Case managers felt that they were able to make a difference, and found their new roles satisfying and challenging, although stressful at times. Ongoing training and support were found to be a prerequisite in helping to shift the focus towards person-centered and integrated care., Competing Interests: The authors have declared that no competing interests exist.

Objectives: To assess the cost-effectiveness of Embrace, an integrated primary care service for older adults., Data Sources: Care and support claims from health care insurers, long-term care administration, and municipalities for enrolled older adults between 2011 and 2013., Study Design: A total of 1,456 older adults, listed with 15 general practitioners practices in the Netherlands, were stratified into risk profiles ("Robust," "Frail," and "Complex care needs") and randomized to Embrace or care-as-usual groups. Incremental costs were calculated per quality-adjusted life year, per day able to age in place, and per percentage point risk profile improvement., Principal Findings: Total average costs were higher for Embrace compared to care-as-usual. Differences in health-associated outcomes were small and not statistically significant. Probabilities that Embrace is cost-effective were below 80 percent, except for "risk profile improvements" within risk profile "Complex care needs." Complete case analysis resulted in smaller differences in total average costs across conditions and differences in health-associated outcomes remained small., Conclusions: According to current standards, Embrace is not considered cost effective after 12 months. However, it could be considered worthwhile in terms of "risk profile improvements" for older adults with "Complex care needs," if society is willing to invest substantially., (© Health Research and Educational Trust.)

Objective: To adapt and to combine the self-report Upper Extremity Functional Index and Lower Extremity Function Scale, for the assessment of disability severity in patients with a neuromuscular disease and to examine its psychometric properties in order to make it suitable for indicating disease severity in neuromuscular diseases., Design: A cross-sectional postal survey study was performed among patients diagnosed with a neuromuscular disease., Methods: Patients completed both adapted extremity function scales, questionnaires for psychometric evaluation, and disease-specific questions. Confirmatory factor analysis was performed, and reliability and validity were examined., Results: Response rate was 70% (n = 702). The Extremity Function Index model with a two-factor structure - for upper and lower extremities - showed an acceptable fit. The Extremity Function Index scales showed good internal consistency (alphas: 0.97-0.98). The known-groups validity test confirmed that Extremity Function Index scales discriminate between categories of "Extent of limitations" and "Quality of Life." Convergent and divergent validity tests confirmed that Extremity Function Index scales measure the physical impact of neuromuscular diseases. Relative validity tests showed that the Extremity Function Index scales performed well in discriminating between subgroups of patients with increasing "Extent of limitations" compared to concurrent measurement instruments., Conclusion: The Extremity Function Index proved to be a sound and easy to apply self-report disability severity measurement instrument in neuromuscular diseases. Implications for rehabilitation The Extremity Function Index reflects the functioning of all muscles in the upper and lower extremities involved in activities of daily living. The Extremity Function Index is an easy to administer and patient-friendly disability severity measurement instrument that has the ability to evaluate differences in disability severity between relevant neuromuscular disease subgroups. The Extremity Function Index is a valid and reliable disability severity measurement instrument for neuromuscular diseases.

Objective: To develop a consensus definition of growth restriction in the newborn that can be used clinically to identify newborn infants at risk and in research to harmonize reporting and definition in the current absence of a gold standard., Study Design: An international panel of pediatric leaders in the field of neonatal growth were invited to participate in an electronic Delphi procedure using standardized methods and predefined consensus rules. Responses were fed back at group-level and the list of participants was provided. Nonresponders were excluded from subsequent rounds. In the first round, variables were scored on a 5-point Likert scale; in subsequent rounds, inclusion of variables and cut-offs were determined with a 70% level of agreement. In the final round participants selected the ultimate algorithm., Results: In total, 57 experts participated in the first round; 79% completed the procedure. Consensus was reached on the following definition: birth weight less than the third percentile, or 3 out of the following: birth weight <10th percentile; head circumference <10th percentile; length <10th percentile; prenatal diagnosis of fetal growth restriction; and maternal pregnancy information., Conclusions: Consensus was reached on a definition for growth restriction in the newborn. This definition recognizes that infants with birth weights <10th percentile may not be growth restricted and that infants with birth weights >10th percentile can be growth restricted. This definition can be adopted in clinical practice and in clinical trials to better focus on newborns at risk, and is complementary to the previously determined definition of fetal growth restriction., (Copyright © 2017 Elsevier Inc. All rights reserved.)

Objectives: Complex interventions are criticized for being a "black box", which makes it difficult to determine why they succeed or fail. Recently, nine proactive primary-care programs aiming to prevent functional decline in older adults showed inconclusive effects. The aim of this study was to systematically unravel, compare, and synthesize the development and evaluation of nine primary-care programs within a controlled trial to further improve the development and evaluation of complex interventions., Study Design and Setting: A systematic overview of all written data on the nine proactive primary-care programs was conducted using a validated item list. The nine proactive primary-care programs involved 214 general practices throughout the Netherlands., Results: There was little or no focus on the (1) context surrounding the care program, (2) modeling of processes and outcomes, (3) intervention fidelity and adaptation, and (4) content and evaluation of training for interventionists., Conclusions: An in-depth analysis of the context, modeling of the processes and outcomes, measurement and reporting of intervention fidelity, and implementation of effective training for interventionists is needed to enhance the development and replication of future complex interventions., (Copyright © 2018 The Authors. Published by Elsevier Inc. All rights reserved.)

Objective: To examine the impact of perceived limitations, stigma and sense of coherence on quality of life in multiple sclerosis patients., Design: Cross-sectional survey., Setting: Department of Neurology, University Medical Center Groningen, the Netherlands., Subjects: Multiple sclerosis patients., Main Measures: World Health Organization Quality of Life - abbreviated version, Stigma Scale for Chronic Illness, Sense of Coherence Scale, background and disease-related questions., Results: In total, 185 patients (61% response rate) participated in the study with moderate to severe limitations. Stigma was highly prevalent but low in severity. Patients with a higher sense of coherence experienced a lower level of limitations ( B = -0.063, P < 0.01) and less stigma (enacted stigma B = -0.030, P < 0.01; self-stigma B = -0.037, P < 0.01). Patients with a higher level of limitations experienced more stigma (enacted stigma B = 0.044, P < 0.05; self-stigma B = 0.063, P < 0.01). Patients with a higher sense of coherence experienced better quality of life (physical health B = 0.059, P < 0.01; psychological health B = 0.062, P < 0.01; social relationships B = 0.052, P < 0.01; environmental aspects B = 0.030, P < 0.01). Patients with a higher level of limitations experienced poorer quality of life (physical health B = -0.364, P < 0.01; psychological health B = -0.089, P < 0.05) and patients with more stigma also experienced poorer quality of life (self-stigma: physical health B = -0.073, P < 0.01; psychological health B = -0.089, P < 0.01; social relationships B = -0.124, P < 0.01; environmental aspects B = -0.052, P < 0.01, and enacted stigma: physical health B = -0.085, P < 0.10)., Conclusion: Patients with less perceived limitations and stigma and a higher level of sense of coherence experienced better quality of life. Patients with a higher sense of coherence experienced a lower level of limitations and less stigma.

Objective: 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., Methods: 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., Results: 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., Conclusions: 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.

Background: Self-management is an important asset in helping older adults remain independent and in control for as long as possible. There is no reliable and valid measurement instrument to evaluate self-management behaviour of older adults., Objective: This study aims to design a measurement instrument, that is the Partners in Health scale for older adults (PIH-OA), to assess self-management knowledge and behaviour of community-living older adults and to examine its psychometric properties in a Dutch context., Methods/design: The original PIH scale was translated into Dutch and adapted to the context of community-living older adults, resulting in the PIH-OA. Data for 1127 participants (mean age 81.7, SD=4.5) from the Embrace study were used to assess the psychometric properties., Results: Data fitted a three-factor model, covering the constructs Knowledge, Management and Coping, with good internal consistencies (Cronbach's alphas ranging from .77 to .84). Known groups validity was confirmed: no differences were found between gender, age and marital status groups, and differences were found between the education level and health status groups. Discriminant validity was confirmed by weak correlations between PIH-OA scales and scales evaluating "Perceived integrated care" and "Activities of daily living (ADL)" (r<.30), and a moderate correlation between the PIH-OA subscale "Coping" and the scale evaluating "ADL" (r=.41)., Conclusion: The PIH-OA appears to be a reliable and valid measurement instrument for assessing the self-management knowledge and behaviour of older adults. This could help professionals provide tailored support to improve the well-being and independence of older adults., (© 2016 The Authors. Health Expectations Published by John Wiley & Sons Ltd.)

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.

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., Objective: To examine the impact of Embrace, a community-based integrated primary care service, on perceived quality of care., Design: Stratified randomized controlled trial., Participants: 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., Intervention: 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., Measurements: 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., Key Results: 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)., Conclusions: 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.

Objective: To examine the impact of Embrace (Dutch: SamenOud), a new primary care model for community-living people aged over 75 years on perceived quality of care., Design: Randomized controlled trial in 15 general practices in the East Groningen region of the Netherlands., Method: In the period January 2012-March 2013, 1456 general practice patients aged 75 years and older were stratified on the basis of self-reporting into 3 risk profiles: 'robust', 'frail' and 'complex care needs', and then randomized to the intervention or the control arm. Intervention consisted of care and support from an elderly-care team consisting of a specialist in Gerontology, a district nurse, and a social worker. Intensity and duration of the care and support were dependent on risk profile. The primary outcome measure was quality of care as reported by participants; the secondary outcome measure was the extent of implementation as reported by the caregivers., Results: The level of perceived quality of care after 12 months was slightly higher in the intervention arm than in the control arm, but the effect size was quite small. The difference was significant in elderly people with the risk profiles 'frail' and 'complex care needs'; robust elderly people did not experience a significant difference. The caregivers reported increased implementation of integrated care (effect size 0.71, that means average)., Conclusion: Embrace slightly improved the perceived quality of care, particularly for elderly people with complex care needs for whom case management was organised. Caregivers judged implementation of integrated care to be greatly improved, though there was still room for further improvement. Further research should be carried out into the effectiveness of integrated primary care for the elderly on health, service-use and healthcare costs.

Purpose: Low health literacy is an important predictor of poor health outcomes and well-being among older adults. A reason may be that low health literacy decreases older adults' self-management abilities. We therefore assessed the association between health literacy and self-management abilities among adults aged 75 and older, and the impact of demographic factors, socioeconomic factors, and health status on this association., Methods: We used data of 1052 older adults, gathered for a previously conducted randomized controlled trial on Embrace, an integrated elderly care model. These data pertained to health literacy, self-management abilities, demographic background, socioeconomic situation, and health status. Health literacy was measured by the validated three-item Brief Health Literacy Screening instrument. Self-management abilities were measured by the validated Self-Management Ability Scale (SMAS-30)., Results: After adjustment for confounders, self-management abilities were poorer in older adults with low health literacy (β = .34, p < .001). This was more pronounced in medium- to high-educated older adults than in low-educated older adults. Sex, age, living situation, income, presence of chronic illness, and mental health status did not moderate the association between health literacy and self-management abilities., Conclusions: Low health literacy is associated with poor self-management abilities in a wide range of older adults. Early recognition of low health literacy among adults of 75 years and older and interventions to improve health literacy might be very beneficial for older adults., Competing Interests: The authors declare that they have no conflict of interest. Ethical approval The Medical Ethical Committee of the University Medical Center Groningen has assessed the study proposal and concluded that formal approval was not required (Reference METc2011.108). Informed consent Informed consent was obtained from all individual participants included in the study.

Background: Novel population-based integrated care services are being developed to adequately serve the growing number of elderly people. Suitable, reliable and valid measurement instruments are needed to evaluate the quality of care delivered., Objective: To develop a measure to evaluate the quality of integrated care from the perspective of elderly people, the Patient Assessment of Integrated Elderly Care (PAIEC), and then to assess its psychometric properties., Methods/design: After the Patient Assessment of Chronic Illness Care was adapted to the PAIEC, a cross-sectional postal-survey study was performed among 223 elderly people who received integrated elderly care and support. We assessed the factor structure, internal consistency, known groups and divergent validity using robust nonparametric tests., Results: Mean age of participants was 83 years (standard deviation 4.7), and 69% was female. The original five-factor model was rejected; a good fit was found for a three-factor model, when excluding the item on patients' satisfaction with care. The PAIEC and its subscales showed good internal consistency (ordinal alphas > 0.90). Known-groups validity was supported regarding number of medications, prevalence of chronic conditions and home care received. No differences were found between groups based on sociodemographic aspects. Divergent validity was supported by low correlations (Spearman's rank correlation coefficients < 0.30) between PAIEC scales and measures of quality of life, complexity of care needs and frailty., Conclusion: The PAIEC seems to have considerable potential as a reliable and valid measurement instrument that evaluates quality of integrated care and support from the perspective of elderly people., (© 2015 The Authors. Health Expectations Published by John Wiley & Sons Ltd.)

Background: 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., Methods: 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., Results: 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., Conclusion: 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.

Purpose: The aim of the present study was to develop a valid Geriatric ICF Core Set reflecting relevant health-related problems of community-living older adults without dementia., Methods: A Delphi study was performed in order to reach consensus (≥70% agreement) on second-level categories from the International Classification of Functioning, Disability and Health (ICF). The Delphi panel comprised 41 older adults, medical and non-medical experts. Content validity of the set was tested in a cross-sectional study including 267 older adults identified as frail or having complex care needs., Results: Consensus was reached for 30 ICF categories in the Delphi study (fourteen Body functions, ten Activities and Participation and six Environmental Factors categories). Content validity of the set was high: the prevalence of all the problems was >10%, except for d530 Toileting. The most frequently reported problems were b710 Mobility of joint functions (70%), b152 Emotional functions (65%) and b455 Exercise tolerance functions (62%). No categories had missing values., Conclusion: The final Geriatric ICF Core Set is a comprehensive and valid set of 29 ICF categories, reflecting the most relevant health-related problems among community-living older adults without dementia. This Core Set may contribute to optimal care provision and support of the older population. Implications for Rehabilitation The Geriatric ICF Core Set may provide a practical tool for gaining an understanding of the relevant health-related problems of community-living older adults without dementia. The Geriatric ICF Core Set may be used in primary care practice as an assessment tool in order to tailor care and support to the needs of older adults. The Geriatric ICF Core Set may be suitable for use in multidisciplinary teams in integrated care settings, since it is based on a broad range of problems in functioning. Professionals should pay special attention to health problems related to mobility and emotional functioning since these are the most prevalent problems in community-living older adults.

Background: Although coronary artery bypass graft (CABG) is known to improve health-related quality of life (HRQoL), this improvement does not seem to be realized in all patients who had undergone CABG surgery., Objective: The aim of this study was to test the direct and indirect influence of personality trait Type D on no change-deterioration trajectories HRQoL and the mediating influence of increased symptoms of anxiety and depression., Methods: The hypothesized influence of personality trait Type D on the relationship between increased anxiety and depression and no change-deterioration trajectories in HRQoL was tested with path analysis using structural equation modeling., Results: The results of the current study show that Type D personality comprised a vulnerability factor for poor patient-reported outcomes (ie, HRQoL and distress), and despite significant and clinically relevant benefits also for Type D patients after CABG, their well-being remained poorer than that of non-Type D participants at 6 months. Increased levels of anxiety largely mediated the influence of Type D personality on no change-deterioration trajectories in both physical and mental HRQoL, whereas increased symptoms of depression explained deterioration in physical and mental HRQoL without the influence of Type D personality., Conclusion: There is evidence that increased symptoms of psychological distress is a strong predictor of no change-deterioration trajectories in HRQoL and that this relationship is influenced by personality trait Type D. We conclude that mediating factors, especially increased anxiety and depression, should be treated adequately in post-CABG clinical routine.

Aims and Objectives: To compare a functioning assessment based on the International Classification of Functioning, Disability and Health (ICF) with a conventional medical assessment, in terms of their respective consequences for health professionals' clinical decision-making and the fit with patient's own perspective of health., Background: In chronic diseases, pathogenic-oriented health care falls short in generating all the information required for determining healthcare provision to improve health. A broader, so-called salutogenic approach, by using the ICF, focusing on how to stay healthy, rather than on what causes diseases, seems more appropriate., Design: A cross-sectional comparative study using data from a randomised controlled trial., Methods: Data about patient problems and professional healthcare activities were collected from a total of 81 patients with severe multiple sclerosis who were randomly assigned to one of two groups: the ICF group, assessed with a functioning assessment (n = 43), and the medical group, assessed with a conventional medical assessment (n = 38). Data were analysed statistically using descriptive and inferential statistics., Results: A functioning assessment resulted in the registration of significantly more patient problems in the health components 'participation' and 'environmental factors', as well as significantly more professional healthcare activities befitting these components. The ICF group had a significant positive correlation between registered problems by health professionals and patients' self-reported problems, whereas the medical group had several negative correlations., Conclusion: A functioning assessment resulted in a care plan that not only was broader and more complete but also reflected the patients' self-reported problems more closely than a medical assessment, without a loss of focus on medical problems., Relevance to Clinical Practice: This study has shown that some health problems remain unnoticed by a medical assessment alone, which is especially important for the chronically ill. A functioning assessment provides a strong foundation for identifying all relevant information related to health., (© 2013 John Wiley & Sons Ltd.)

Objective: To examine the influence of stigma on the quality of life of patients with a neuromuscular disease., Design: Cross-sectional postal survey., Setting: Outpatient clinic of the Department of Neurology, University Hospital Groningen, the Netherlands., Subjects: Patients diagnosed with a neuromuscular disease., Measures: The Stigma Scale for Chronic Illness, the World Health Organization Quality of Life - abbreviated version questionnaires and some background and disease-related questions. The Stigma Scale for Chronic Illness was translated into Dutch according to international guidelines. The impact of stigma on quality of life was estimated using hierarchical multiple regression analysis after controlling for the extent of limitations and patient characteristics., Results: In total 235 patients (75% response rate) were diagnosed with neuromuscular disease and represented all four categories of the approximately 600 neuromuscular diseases. Most patients (86%) reported self stigma, while 64% reported to experience enacted stigma. Experienced quality of life was moderate to good. Stigma contributed to a unique and substantial extent to all domains of quality of life: explained variance for the impact of stigma on quality ranged from 0.13 (social relations) to 0.34 (physical functioning) for self stigma and from 0.09 (social relations) to 0.11 (physical and psychological health, and quality of the environment)., Conclusion: Self stigma was a stronger predictor for poorer quality of life compared with enacted stigma. In other words: patients suffered more from shame and fear for discrimination (self stigma) than from the really experienced discrimination and exclusion (enacted stigma).

Background: Ongoing growth in health care expenditures and changing patterns in the demand for health care challenge societies worldwide. The Chronic Care Model (CCM), combined with classification for care needs based on Kaiser Permanente (KP) Triangle, may offer a suitable framework for change. The aim of the present study is to investigate the effectiveness of Embrace, a population-based model for integrated elderly care, regarding patient outcomes, service use, costs, and quality of care., Methods/design: The CCM and the KP Triangle were translated to the Dutch setting and adapted to the full elderly population living in the community. A randomized controlled trial with balanced allocation was designed to test the effectiveness of Embrace. Eligible elderly persons are 75 years and older and enrolled with one of the participating general practitioner practices. Based on scores on the INTERMED-Elderly Self-Assessment and Groningen Frailty Indicator, participants will be stratified into one of three strata: (A) robust; (B) frail; and (C) complex care needs. Next, participants will be randomized per stratum to Embrace or care as usual. Embrace encompasses an Elderly Care Team per general practitioner practice, an Electronic Elderly Record System, decision support instruments, and a self-management support and prevention program - combined with care and support intensity levels increasing from stratum A to stratum C. Primary outcome variables are patient outcomes, service use, costs, and quality of care. Data will be collected at baseline, twelve months after starting date, and during the intervention period., Discussion: This study could provide evidence for the effectiveness of Embrace., Trial Registration: The Netherlands National Trial Register NTR3039.

Background: Understanding of the consequences of a neuromuscular disease (NMD) can improve when a valid sample of disease-specific categories based on the International Classification of Functioning, Disabilities, and Health (ICF) is available., Objective: To examine the content validity of the initial ICF Core Set for neuromuscular diseases (NMDs). The initial ICF Core Set was developed for three chronic neurological diseases., Design: A qualitative method., Methods: To examine the content validity of the initial ICF Core Set for NMD, concepts in established disease-specific health-related Quality of Life Questionnaires (HRQOL) were compared with ICF categories. Next, the selected ICF categories were linked to the ICF categories in the initial ICF Core Set., Results: All concepts in the HRQOL questionnaires, except one body function concept, were covered by the initial ICF Core Set. However, the NMD Core Set reflects a broader scope concerning health problems than the concepts in the HRQOL questionnaires do, especially concerning the "Participation" and "Environmental Factors" components., Conclusion: The NMD Core Set, as well as a measurement based on this Core Set, can contribute to a better understanding of the consequences of NMDs and can also serve as a basis for clinical practice, research, social security systems, and educational programs., Clinical Rehabilitation Impact: The newly developed NMD Core Set can be a basis for enhancing the development of rehabilitation interventions and improving overall health care for patients with a NMD.

Background: Fatigue has become an important symptom in clinical diagnosis and clinical trials among subjects with cardiovascular diseases and disease-specific fatigue scales were developed in a Dutch and English version., Objective: Various questionnaires for measuring fatigue have been developed, but currently no validated questionnaire targeted at subjects with cardiovascular disease and heart failure exists in the Lithuanian language., Methods: Despite the rigor of the exploratory factor analysis and analyses of the psychometric properties of the disease-specific Dutch Fatigue Scale and the Dutch Exertion Fatigue Scale (DUFS-DEFS) we adopted a confirmatory approach considered as the gold standard method for the evaluation of construct validity in psychometric inventories. To test the criterion validity of the DUFS and DEFS structural equation modelling was employed with the widely used and validated Multidimensional Fatigue Inventory (MFI)., Results: The a priori specification of a hypothesized five-factor model of the MFI-20 and a two-factor model of the DUFS and DEFS appeared to have a good fit to the data in Lithuanian patients. The hypothesized model of the criterion validity of the DUFS and DEFS had a good fit and classes of disease severity showed statistically significant and clinically relevant differences on fatigue scores., Conclusion: The construct validity and criterion validity of the DUFS and DEFS were confirmed in a Lithuanian sample of cardiac patients. The construct validity of the MFI was also supported and this fatigue measure can be used in Lithuanian settings of clinical practice and research., (© 2010 Blackwell Publishing Ltd.)

Background: Health care for cancer patients is primarily shaped by health care professionals. This raises the question to what extent health care professionals are aware of patients' preferences, needs and values.The aim of this study was to explore to what extent there is concordance between patients' preferences in cancer care and patients' preferences as estimated by health care professionals. We also examined whether there were gender differences between health care professionals with regard to the degree in which they can estimate patients' preferences correctly., Methods: To obtain unbiased insight into the specific preferences of cancer patients, we developed the 'Cancer patients' health care preferences' questionnaire'. With this questionnaire we assessed a large sample of cancer patients (n = 386). Next, we asked health care professionals (medical oncologists, nurses and policymakers, n = 60) to fill out this questionnaire and to indicate preferences they thought cancer patients would have. Mean scores between groups were compared using Mann-Whitney tests. Effect sizes (ESs) were calculated for statistically significant differences., Results: We found significant differences (ESs 0.31 to 0.90) between patients and professionals for eight out of twenty-one scales and two out of eight single items. Patients valued care aspects related to expertise and attitude of health care providers and accessibility of services as more important than the professionals thought they would do. Health care professionals overestimated the value that patients set on particularly organisational and environmental aspects.We found significant gender-related differences between the professionals (ESs 0.69 to 1.39 ) for eight out of twenty-one scales and two out of eight single items. When there were significant differences between male and female healthcare professionals in their estimation of patients health care preferences, female health care professionals invariably had higher scores. Generally, female health care professionals did not estimate patients' preferences and needs better than their male colleagues., Conclusions: Health care professionals are reasonably well able to make a correct estimation of patients preferences, but they should be aware of their own bias and use additional resources to gain a better understanding of patients' specific preferences for each patient is different and ultimately the care needs and preferences will also be unique to the person.

Background: Case management has been suggested as an innovative strategy that facilitates the improvement of a patient's quality of life, reduction of hospital length of stay, optimization of self-care and improvement of satisfaction of patients and professionals involved. However, there is little evidence about the effectiveness of the patient advocacy case management model in clinical practice.Therefore, the objective of our study was to examine the effects of the Dutch patient advocacy case management model for severely disabled Multiple Sclerosis (MS) patients and their caregivers compared to usual care., Methods/design: In this randomized controlled trial the effectiveness of casemanagement on quality of life of patients and their caregivers, quality of care, service use and economic aspects were evaluated. The primary outcomes of this study were quality of life of MS-patients and caregiver burden of caregivers.Furthermore, we examined quality of life of caregivers, quality of care, service use and costs., Discussion: This is a unique trial in which we examined the effectiveness of case management from a broad perspective. We meticulously prepared this study and applied important features and created important conditions for both intervention and research protocol to increase the likelihood of finding evidence for the effectiveness of patient advocacy case management. Concerning the intervention we anticipated to five important conditions: 1) the contrast between the case management intervention compared to the usual care seems to be large enough to detect intervention effects; 2) we included patients with complex care situations and/or were at risk for critical situations; 3) the case managers were familiar with disease specific health-problems and a broad spectrum of solutions; 4) case managers were competent and authorized to perform a medical neurological examination and worked closely with neurologists specialized in MS; and 5) the case managers had a regional network of professionals and health care organisations at their disposal, and were accepted as a coordinator of care. We also put a lot of effort on the selection of eligible patients, randomization and statistical methods, but also on power analysis, selection of reliable, validated and sensitive outcome measures, and (statistical) control of confounders., Trial Registration: Dutch Trial Register http://www.trialregister.nl. Trial ID: NTR762.

Aim: Improving quality of care for cancer patients requires insight into their specific wishes, needs, and preferences concerning cancer care. The aim of this study was to explore the impact of gender on cancer patients' needs and preferences., Patients and Methods: Data were obtained from 386 questionnaires assessing cancer patients' preferences for health care. Multivariate regression analyses were performed with data obtained from medical oncology patients treated in seven Dutch hospitals, using the scales of the questionnaire as dependent variables., Results: Patients rated safety, expertise, performance, and attitude of physicians and nurses highest on their list of preferences. There were significant differences between male and female patients concerning preferences in health care in 15 of the 21 scales and in two of the eight single items. Without exception, women found the care aspects mentioned in these scales and items more important than men. Multivariate regression analysis showed that, of all the patient- and disease-related factors, gender was the most important independent predictor of patient preferences., Conclusion: Gender impacts cancer patients' needs and preferences and should be taken into account for optimal cancer care. Cancer care might be tailored toward gender, for example, with regard to the means and extent of communication, manner and extent of support, counseling and rehabilitation, consultation length, and physician assignment. The results of this study may guide health care professionals and organizations to develop a gender-specific health care approach to further improve cancer patient-centered care.