Optimizing access to and use of formal dementia care: Qualitative findings from the European Actifcare study.

This paper reports on qualitative data from the Actifcare study investigating experiences, attitudes, barriers and facilitators concerning access to and use of formal care. A total of 85 semi-structured in-depth interviews were conducted in eight European countries. Results were analysed with a deductive content analysis, first within country and then integrated in a cross-national analysis. Overall, analysis of the in-depth interviews revealed two major themes with five subcategories. The results can be summarised in an optimal pathway for access to dementia care. This pathway includes fixed factors such as disease-related factors and system-related factors. In addition there are personal factors that are subject to change such as attitudes towards care. An important finding consisted of the necessity of having sufficient information about the disease and available care and having a key contact person to guide you through the process of finding suitable care while monitoring your needs. In addition, it is important to involve your social network as they can take on care-giving tasks. It is helpful to have a diagnosis (in most countries). Concerning decision-making, the person closest to the person with dementia is in the majority of cases the one who makes the ultimate decision to access and use services and he/she should therefore be supported in this process. These results provide insight into the factors that influence the pathway to formal care use and help professionals to enhance access to formal dementia care by focusing on factors that can be modified.

[Formal and informal support of patients with dementia at home: A mixed methods study within the Actifcare project]. / Formelle und informelle Unterstützung der häuslichen Pflege bei Demenz: Eine Mixed-Method Studie im Rahmen des Actifcare Projekts.

BACKGROUND: Formal care services are less often used in dementia care than in care for people without dementia. The Actifcare project, in which eight European countries participated, emphasized the point in time in the trajectory of dementia when formal care becomes more and more important for supporting caregivers at home. A mixed-method study conducted over 12 months aimed to improve the understanding of care needs and the influencing factors for using informal and formal support for care at home. This report focuses on the German sample of the cohort study. METHODS: People with dementia with their informal caregivers from the German federal states of North Rhine-Westphalia, Saxony-Anhalt and Saxony were interviewed between January 2015 and July 2016. A set of validated questionnaires was used for the baseline interviews and two follow-ups. Additional guideline-based semi-structured interviews were conducted with a subgroup of informal caregivers at the last follow-up interview. The standardized questionnaires were analyzed using a descriptive approach, and the semi-structured interviews were subjected to qualitative content analysis. Similar to the data collection processes, the results of both analyses were synthesized using a data triangulation approach. RESULTS: A total of 52 people with dementia and their informal caregivers participated in the standardized interviews. A subsample of 12 informal caregivers was included in the qualitative interviews. At baseline, 28 out of 51 informal caregivers cared for their relatives with dementia without additional informal support (T2: 22 of 41). The social network of approximately half of the informal caregivers included three to four relatives, who were ready to help if necessary. On average, 3.4 support services were used (T2: 3.6). During the study period, the interest in educational, informational and counselling services decreased (T0: 11 of 52 informal caregivers; T2: 5 of 41). Formal care was more often rejected by people with dementia than by informal caregivers. Sometimes, the available services were considered insufficient in terms of personal needs of formal support, which should be flexible, unbureaucratic and tailored to the needs of the individual patient's situation. It is important for people with dementia and their informal caregivers to be involved in the decision-making processes of caregiving. Since dementia is a progressive disease, early participation is a prerequisite for making shared decisions about healthcare services. CONCLUSION: People with dementia and their informal caregivers should be informed about formal care services and involved in decision-making processes as early as possible. To this purpose, account must be taken of the various informal social networks. This could improve the use of formal care services and the further development of these offers and thus prolong care at home.

Development of a complex intervention to improve participation of nursing home residents with joint contractures: a mixed-method study.

BACKGROUND: Joint contractures in nursing home residents limit the capacity to perform daily activities and restrict social participation. The purpose of this study was to develop a complex intervention to improve participation in nursing home residents with joint contractures. METHODS: The development followed the UK Medical Research Council framework using a mixed-methods design with re-analysis of existing interview data using a graphic modelling approach, group discussions with nursing home residents, systematic review of intervention studies, structured 2-day workshop with experts in geriatric, nursing, and rehabilitation, and group discussion with professionals in nursing homes. RESULTS: Graphic modelling identified restrictions in the use of transportation, walking within buildings, memory functions, and using the hands and arms as the central target points for the intervention. Seven group discussions with 33 residents revealed various aspects related to functioning and disability according the International Classification of Functioning, Disability and Health domains body functions, body structures, activities and participation, environmental factors, and personal factors. The systematic review included 17 studies with 992 participants: 16 randomised controlled trials and one controlled trial. The findings could not demonstrate any evidence in favour of an intervention. The structured 2-day expert workshop resulted in a variety of potential intervention components and implementation strategies. The group discussion with the professionals in nursing homes verified the feasibility of the components and the overall concept. The resulting intervention, Participation Enabling CAre in Nursing (PECAN), will be implemented during a 1-day workshop for nurses, a mentoring approach, and supportive material. The intervention addresses nurses and other staff, residents, their informal caregivers, therapists, and general practitioners. CONCLUSIONS: In view of the absence of any robust evidence, the decision to use mixed methods and to closely involve both health professionals and residents proved to be an appropriate means to develop a complex intervention to improve participation of and quality of life in nursing home residents. We will now evaluate the PECAN intervention for its impact and feasibility in a pilot study in preparation for an evaluation of its effectiveness in a definitive trial. TRIAL REGISTRATION: German clinical trials register, reference number DRKS00010037 (12 February 2016).

Prevalence for delirium in stroke patients: A prospective controlled study.

BACKGROUND AND PURPOSE: This study investigates the prevalence of delirium in acute stroke patients on a primary stroke unit (SU) analyzing associated risk factors and clinical outcomes. METHOD: Prospective, 4-month observational study from 2015 to 2016 on patients aged ≥18 years with stroke at a German university hospital's SU. The presence of delirium as first outcome was rated at three times daily using the Confusion Assessment Method (CAM). Secondary outcome measures were duration of delirium, rehabilitation in SU, length of stay in SU and hospital, complications, and mortality. Significant risk factors were used to conduct a confounder-matched case-control analysis. RESULTS: 309 patients were included. The overall prevalence of delirium was 10.7% (33 patients) mostly on the first and second hospital day. Duration of delirium on SU was in median 1.0 day (Interquartile range: 0.3-2 days). In 39.4% of patients delirium was present in a short time interval (≤8 hr) and in 24% of patients delirium was diagnosed during nightshifts exclusively. Significant risk factors for delirium were dementia, age ≥72 years, severe neurological disability on admission, and increased C-reactive protein on admission. The case-control analysis showed that delirious patients had more complications and a trend toward a worse rehabilitation. CONCLUSIONS: These results underline the importance of delirium screening in stroke patients specifically during the night. Since even short delirious episodes are associated with more complications and increased disability, future studies are needed to find delirium prevention strategies.

The PaArticular Scales - A new outcome measure to quantify the impact of joint contractures on activities and participation in individuals in geriatric care: Development and Rasch analysis.

BACKGROUND: Joint contractures are frequent conditions in individuals in geriatric care settings and are associated with activity limitations and participation restrictions. As such, relevant intervention programs should address these aspects, and the effectiveness of such programs should be determined by assessing improvement in activities and participation. However, no patient-centred and psychometrically sound outcome measures for this purpose are available so far. OBJECTIVES: The objectives of this study were to develop and to validate a new outcome measure, the PaArticular Scales, to quantify activities and participation in older individuals with joint contractures. Specific aims were (A) to operationalize the content of an International Classification of Functioning, Disability and Health-based standard set towards meaningful questions and to combine them to a questionnaire and (B) to assess the psychometric properties of the developed questionnaire, in detail to evaluate test-retest reliability, objectivity, internal consistency reliability and criterion validity. DESIGN: Operationalization was reached by an expert consensus conference and a subsequent expert Delphi survey. Psychometric properties were assessed in a cross-sectional study. SETTINGS: Nursing homes, geriatric rehabilitation facilities. PARTICIPANTS: 23 experts (nurses, physicians, physical and occupational therapists) participated in the consensus conference and the Delphi survey. A total of 191 individuals with joint contractures (as confirmed by physician, nurse or physical therapist) between 65 and 102 years, living in nursing homes or as patients in geriatric rehabilitation were enrolled in the cross-sectional study. METHODS: Rasch Partial Credit Modelling. RESULTS: The consensus conference and Delphi survey resulted in a questionnaire with 86 items of the International Classification of Functioning, Disability and Health. Test-retest-reliability among those was acceptable (Cohen's weighted kappa: 0.779). The Rasch analysis revealed two independent interval-scaled scales with 24 items for the Activities scale and 11 items for the Participation scale with high internal consistency reliability. Cronbach's alpha was 0.96 for the Activities scale and 0.92 for the Participation scale. Criterion validity was -0.40 and -0.30 for the Activities scale and for the Participation scale, respectively. CONCLUSIONS: The PaArticular Scales, a new patient-centred and psychometric sound outcome measures to comprehensively assess the impact of joint contractures in geriatric care, are available now. These developed scales will serve as primary outcomes in a scheduled evaluation of a complex intervention to improve participation and quality of life in nursing home residents with joint contractures.

Outcome measures in older persons with acquired joint contractures: a systematic review and content analysis using the ICF (International Classification of Functioning, Disability and Health) as a reference.

BACKGROUND: Joint contractures are a common health problem in older persons with significant impact on activities of daily living. We aimed to retrieve outcome measures applied in studies on older persons with joint contractures and to identify and categorise the concepts contained in these outcome measures using the ICF (International Classification of Functioning, Disability and Health) as a reference. METHODS: Electronic searches of Medline, EMBASE, CINAHL, Pedro and the Cochrane Library were conducted (1/2002-8/2012). We included studies in the geriatric rehabilitation and nursing home settings with participants aged ≥ 65 years and with acquired joint contractures. Two independent reviewers extracted the outcome measures and transferred them to concepts using predefined conceptual frameworks. Concepts were subsequently linked to the ICF categories. RESULTS: From the 1057 abstracts retrieved, 60 studies met the inclusion criteria. We identified 52 single outcome measures and 24 standardised assessment instruments. A total of 1353 concepts were revealed from the outcome measures; 96.2% could be linked to 50 ICF categories in the 2nd level; 3.8% were not categorised. Fourteen of the 50 categories (28%) belonged to the component Body Functions, 4 (8%) to the component Body Structures, 26 (52%) to the component Activities and Participation, and 6 (12%) to the component Environmental Factors. CONCLUSIONS: The ICF is a valuable reference for identifying and quantifying the concepts of outcome measures on joint contractures in older people. The revealed ICF categories remain to be validated in populations with joint contractures in terms of clinical relevance and personal impact.

Examining Functioning and Contextual Factors in Individuals with Joint Contractures from the Health Professional Perspective Using the ICF: An International Internet-Based Qualitative Expert Survey.

PURPOSE: The aim of this study was to identify disease-related aspects of functioning and disability in people with joint contractures from a health professionals' perspective and to describe the findings, using categories of the International Classification of Functioning, Disability, and Health (ICF). DESIGN: An Internet-based expert survey. METHODS: We asked international health professionals for typical problems in functioning and important contextual factors of individuals with joint contractures using an Internet-based open-ended questionnaire. All answers were linked to the ICF according to established rules. Absolute and relative frequencies of the linked ICF categories were reported. FINDINGS: Eighty experts named 1785 meaning units which could be linked to 256 ICF categories. Among the categories, 24.2% belonged to the component Body Functions, 20.7% to Body Structures, 36.3% to Activities and Participation, and 18.8% to Environmental Factors. CONCLUSION: Health professionals addressed a large variety of functional problems and multifaceted aspects due to the symptom joint contractures. CLINICAL RELEVANCE: International health professionals reported a large variety of aspects of functioning and health, which are related to joint contractures.

Developing and piloting a multifactorial intervention to address participation and quality of life in nursing home residents with joint contractures (JointConImprove): study protocol.

BACKGROUND: Joint contractures are common problems in frail older people in nursing homes. Irrespective of the exact extent of older individuals in geriatric care settings living with joint contractures, they appear to be a relevant problem. Also, the new emphasis on the syndrome of joint contractures, e. g. by the German statutory long term care insurance, led to an increase in assessment and documentation efforts and preventive interventions in clinical care. However, more attention should be paid to the actual situation of older individuals in nursing homes with prevalent joint contractures, particularly their experience of related activity limitations and participation restrictions. Thus, the aim of this study is 1) to develop a tailored intervention to improve functioning, and especially participation and quality of life in older residents with joint contractures in nursing homes and 2) to test the feasibility of the intervention accompanied by a rigorous process evaluation. METHODS: The complex intervention, which will be developed in this project follows the UK Medical Research Council (MRC) framework and integrates the perspectives of all potentially relevant user groups, from the affected individuals to clinicians and researchers. The development process will comprise a systematic literature review, reanalysis of existing data and the integration of the knowledge of the affected individuals and experts. The developed intervention including a comprehensive process evaluation will be pilot tested with residents with joint contractures in three nursing homes. DISCUSSION: The projected study will provide a tailored intervention to improve functioning, participation and quality of life in older residents with joint contractures in nursing homes. With this focus, the intervention will support patient relevant outcomes. The pilot study including process evaluation will offer a first opportunity to indicate the size of the intervention's effect and prepare further studies.

Development of an International Classification of Functioning, Disability and Health (ICF)-based standard set to describe the impact of joint contractures on participation of older individuals in geriatric care settings.

INTRODUCTION: Joint contractures are characterized as impairment of the physiological movement of joints due to deformity, disuse or pain and have major impact especially for older individuals in geriatric care. Some measures for the assessment of the impact of joint contractures exist. However, there is no consensus on which aspects should constantly be measured. Our objective was to develop a standard-set based on the ICF for describing functioning and disability in older individuals with joint contractures in geriatric care settings, giving special emphasis to activities and participation. METHODS: The ICF-based standard set was developed in a formal decision-making and consensus process and based on an adapted version of the protocol to develop ICF Core Sets. These are sets of categories from the ICF, serving as standards for the assessment, communication and reporting of functioning and health for clinical studies, clinical encounters and multi-professional comprehensive assessment and management. RESULTS: Twenty-three experts from Germany and Switzerland selected 105 categories of the ICF component Activities and Participation for the ICF-based standard set. The largest number of categories was selected from the chapter Mobility (50 categories, 47.6%). CONCLUSIONS: The standard set for older individuals with joint contractures provides health professionals with a standard for describing patients' activity limitations and participation restrictions. The standard set also provides a common basis for the development of patient-centered measures and intervention programs. The preliminary version of the ICF-based standard set will be tested in subsequent studies with regard to its psychometric properties.

Patients' view on health-related aspects of functioning and disability of joint contractures: a qualitative interview study based on the International Classification of Functioning, Disability and Health (ICF).

PURPOSE: The aim of this study was to identify health-relevant aspects of functioning and disability of persons aged 65 years or older with joint contractures, to link the findings to corresponding ICF categories and to describe the patients' perspective. METHODS: We conducted 43 qualitative, semi-structured, face-to-face interviews with affected persons in two different locations (Witten, Munich) and in three different settings. Data were analyzed using the "meaning condensation procedure" and then linked to ICF categories. RESULTS: From all interviews a total of 2499 single meaning-concepts were extracted which were linked to 324 different ICF categories. The participants in all settings mainly reported problems related to "Mobility of a single joint (b710)", "Sensation of pain (b280)" and problems related to "Walking (d450)". Almost all participants reported "Products and technology for personal indoor and outdoor mobility and transportation (e120)" as a relevant environmental factor. CONCLUSIONS: From the patients' perspective, joint contractures have an impact on multifaceted aspects of functioning and disability, mainly body functions, environmental factors and activities and participation. The results of this study will contribute to the development of a standard instrument for measuring functioning, disability and health-relevant aspects for patients with joint contractures.

Early mobilization of mechanically ventilated patients: a 1-day point-prevalence study in Germany.

OBJECTIVES: There is growing evidence to support early mobilization of adult mechanically ventilated patients in ICUs. However, there is little knowledge regarding early mobilization in routine ICU practice. Hence, the interdisciplinary German ICU Network for Early Mobilization undertook a 1-day point-prevalence survey across Germany. DESIGN: One-day point-prevalence study. SETTING: One hundred sixteen ICUs in Germany in 2011. PATIENTS: All adult mechanically ventilated patients. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: For a 24-hour period, data were abstracted on hospital and ICU characteristics, the level of patient mobilization and associated barriers, and complications occurring during mobilization. One hundred sixteen participating ICUs provided data for 783 patients. Overall, 185 patients (24%) were mobilized out of bed (i.e., sitting on the edge of the bed or higher level of mobilization). Among patients with an endotracheal tube, tracheostomy, and noninvasive ventilation, 8%, 39%, and 53% were mobilized out of bed, respectively (p < 0.001 for difference between three groups). The most common perceived barriers to mobilizing patients out of bed were cardiovascular instability (17%) and deep sedation (15%). Mobilization out of bed versus remaining in bed was not associated with a higher frequency of complications, with no falls or extubations occurring in those mobilized out of bed. CONCLUSIONS: In this 1-day point-prevalence study conducted across Germany, only 24% of all mechanically ventilated patients and only 8% of patients with an endotracheal tube were mobilized out of bed as part of routine care. Addressing modifiable barriers for mobilization, such as deep sedation, will be important to increase mobilization in German ICUs.

Quality of reporting of complex healthcare interventions and applicability of the CReDECI list - a survey of publications indexed in PubMed.

BACKGROUND: The development and evaluation of complex interventions in healthcare has obtained increased awareness. The Medical Research Council's (MRC) framework for the development and evaluation of complex interventions and its update offers guidance for researchers covering the phases development, feasibility/piloting, and evaluation. Comprehensive reporting of complex interventions enhances transparency and is essential for researchers and policy-makers. Recently, a set of 16 criteria for reporting complex interventions in healthcare (CReDECI) was published. The aim of this study is to evaluate the reporting quality in publications of complex interventions adhering to either the first or the updated MRC framework, and to evaluate the applicability of CReDECI. METHODS: A systematic PubMed search was conducted. Two reviewers independently checked titles and abstracts for inclusion. Trials on complex interventions adhering to the MRC framework and including an evaluation study in English and German were included. For all included trials and for all publications which reported on phases prior to the evaluation study, related publications were identified via forward citation tracking. The quality of reporting was assessed independently by two reviewers using CReDECI. Inter-rater agreement and time needed to complete the assessment were determined. RESULTS: Twenty-six publications on eight trials were included. The number of publications per trial ranged from 1 to 6 (mean 3.25). The trials demonstrate a good reporting quality for the criteria referring to the development and feasibility/piloting. For the criteria addressing the introduction of the intervention and the evaluation, quality of reporting varied widely. Two trials fulfilled 7 and 8 items respectively, five trials fulfilled one to five items and one trial offered no information on any item. The mean number of items with differing ratings per trial was two. The time needed to rate a trial ranged from 30 to 90 minutes, depending on the number of publications. CONCLUSIONS: Adherence to the MRC framework seems to have a positive impact on the reporting quality on the development and piloting of complex interventions. Reporting on the evaluation could be improved. CReDECI is a practical instrument to check the reporting quality of complex interventions and could be used alongside design-specific reporting guidelines.

Impact of joint contractures on functioning and social participation in older individuals--development of a standard set (JointConFunctionSet): study protocol.

BACKGROUND: Joint contractures are frequent in older individuals in geriatric care settings. Even though they are used as indicator of quality of care, there is neither a common standard to describe functioning and disability in patients nor an established standardized assessment to describe and quantify the impact of joint contractures on patients' functioning. Thus, the aim of our study is (1) to develop a standard set for the assessment of the impact of joint contractures on functioning and social participation in older individuals and (2) to develop and validate a standardized assessment instrument for describing and quantifying the impact of joint contractures on the individuals' functioning. METHODS: The standard set for joint contractures integrate the perspectives of all potentially relevant user groups, from the affected individuals to clinicians and researchers. The development of this set follows the methodology to develop an International Classification of Functioning Disability and Health (ICF) Core Set and involves a formal decision-making and consensus process. Evidence from four preparatory studies will be integrated including qualitative interviews with patients, a systematic review of the literature, a survey with health professionals, and a cross sectional study with patients affected by joint contractures. The assessment instrument will be developed using item-response-theory models. The instrument will be validated. DISCUSSION: The standard set for joint contractures will provide a list of aspects of functioning and health most relevant for older individuals in geriatric care settings with joint contractures. This list will describe body functions, body structures, activities and participation and related environmental factors. This standard set will define what aspects of functioning should be assessed in individuals with joint contractures and will be the basis of the new assessment instrument to evaluate the impact of joint contractures on functioning and social participation.

Proposed criteria for reporting the development and evaluation of complex interventions in healthcare (CReDECI): guideline development.

Methods of research on complex interventions have received increasing awareness in nursing and health care science. The British Medical Research Council's (MRC) framework on the development and evaluation of complex interventions has been widely applied. It does, however, not specifically support authors to comprehensively and transparently report their complex study to ensure interpretation of study results and replicability of the intervention. So far, no reporting criteria for the development and evaluation of complex interventions have been published. Based on the updated MRC framework and corresponding methodological literature, a set of criteria on the reporting and evaluation of complex interventions has been developed and reviewed by experts in the field. As a result, a criteria list comprising 16 items has been created covering the first three stages of the MRC framework: (1) development; (2) feasibility and piloting; and (3) introduction of the intervention and evaluation. The list provides a minimum standard of criteria necessary to ensure high quality reporting of studies on the development and evaluation of complex interventions. In a final step, the reporting criteria on complex interventions have to pass a formal consensus process according to the methods recommended by the EQUATOR network.

Predicting pressure ulcer risk: a multifactorial approach to assess risk factors in a large university hospital population.

AIMS: The purpose of this study was: (1) to determine the combination of risk factors which best predicts the risk of developing pressure ulcers among inpatients in an acute care university hospital; (2) to determine the appropriate weight for each risk factor; and (3) to derive a concise and easy-to-use risk assessment tool for daily use by nursing staff. BACKGROUND: Efficient application of preventive measures against pressure ulcers requires the identification of patients at risk. Adequate risk assessment tools are still needed because the predictive value of existing tools is sometimes unsatisfactory. DESIGN: Survey. METHODS: A sample of 34,238 cases admitted to Essen University Clinics from April 2003 and discharged up to and including March 2004, was enrolled into the study. Nursing staff recorded data on pressure ulcer status and potential risk factors on admission. Predictors were identified and weighted by multivariate logistic regression. We derived a risk assessment scale from the final logistic regression model by assigning point values to each predictor according to its individual weight. RESULTS: The period prevalence rate of pressure ulcers was 1.8% (625 cases). The analysis identified 12 predictors for developing pressure ulcers. With the optimum cut-off point sensitivity and specificity were 83.4 and 83.1%, respectively, with a positive predictive value of 8.4% and a negative predictive value of 99.6%. The diagnostic probabilities of the derived scale were similar to those of the original regression model. CONCLUSIONS: The predictors mostly correspond to those used in established scales, although the use of weighted factors is a partly novel approach. Both the final regression model and the derived scale show good prognostic validity. RELEVANCE TO CLINICAL PRACTICE: The derived risk assessment scale is an easy-to-understand, easy-to-use tool with good prognostic validity and can assist in effective application of preventive measures against pressure ulcer.

Problem focused integration of information, quality and process management with empirical research: The example of the Essen Interdisciplinary Pressure Ulcer Project.

Issues of information management, quality management, process management, and empirical research are often seen independently from each other. In the Essen interdisciplinary pressure ulcer project, they were integrated to establish a synergy between quality of care, economics and research. The electronic documentation of events and supplementary information was done with the hospital wide patient administration system. Feedback and automatically requests were used for quality improvement. Codes for reimbursement are generated from the clinical documentation. Research studies had been based on the routine documentation. Prerequisite was the cooperation of all relevant groups, nurses, physicians, informaticians, theoreticians and medical controller. In the future, it will be necessary to extend the approach to other relevant nursing problems and to replace the redundant documentation (paper-based as well as electronic) by an electronic health record.