Dementia in People with Severe/Profound Intellectual (and Multiple) Disabilities: Practice-Based Observations of Symptoms.

Introduction: Observable dementia symptoms are hardly studied in people with severe/profound intellectual (and multiple) disabilities (SPI(M)D). Insight in symptomatology is needed for timely signaling/diagnosis. This study aimed to identify practice-based observations of dementia symptoms in this population. Methods: Care professionals and family members were invited to complete a survey about symptoms. Quantitatively analyzed survey data were further deepened through semi-structured interviews with care professionals having vast experience in signaling/diagnosing dementia in this population. Symptoms were categorized using a symptom matrix. Results: Survey respondents and interviewees frequently observed a decline in activities of daily living (ADL) functioning and behavioral and psychological changes, like increased irritability, anxiety, apathy and decreased eating/drinking behavior. Cognitive symptoms were particularly recognized in persons with verbal communication and/or walking skills. To lesser extent motor changes and medical comorbidities were reported. Conclusion: Increased insight in dementia symptoms contributes to developing a dedicated screening instrument for dementia in people with SPI(M)D.

Dementia care mapping to support staff in the care of people with intellectual disability and dementia: a feasibility study.

BACKGROUND: The number of people with intellectual disability and dementia increases; this combination causes behavioural changes. Dementia Care Mapping (DCM) supports staff in dementia care in nursing homes and may be useful in intellectual disability-care. This qualitative study examines the feasibility of DCM for older people with intellectual disability and dementia. METHODS: The present authors obtained data in focus groups and interviews with professional users and analysed using a framework for feasibility studies. With experts in dementia and intellectual disability researches, the present authors determined the overall feasibility. RESULTS: DCM was found to be feasible in intellectual disability-care, regarding five domains of feasibility. Staff reported DCM to be useful and valuable and addresses to their demand for skills and knowledge. All professional users found DCM feasible in intellectual disability-care, which was confirmed by experts. CONCLUSIONS: DCM is feasible in intellectual disability-care. When fully tailored to intellectual disability-care, DCM is useful and provides opportunities to assess its effectiveness.

Collaboration between mental health and employment services to support employment of individuals with mental disorders.

PURPOSE: The aim of this study was to investigate the extent of the interdisciplinary collaboration between mental health (MHS) professionals and social security professionals (SSI), their perceptions of this interdisciplinary collaboration and whether these perceptions differed between professionals of the two organizations. METHOD: We obtained data from mental health professionals and social security professionals in the context of a national agreement between MHS and SSI to improve the collaboration between MHS professionals and SSI professionals in the support of individuals with mental disorders to improve work outcome of these individuals. RESULTS: Mental health professionals as well as SSI professionals reported a moderate level of interdisciplinary collaboration, which does not seem to be affected by demographic variables, such as age, gender, profession and region. When professionals collaborated in a structural way they were more positive regarding their interdisciplinary collaboration with professionals of the other organization than professionals that collaborated in an ad hoc manner. CONCLUSIONS: Interdisciplinary collaboration was perceived as moderate by collaborating mental health professionals and social security professionals. In order to improve the collaboration between MHS and SSI on a local microlevel, organizations need to facilitate more structural collaboration between the professionals. IMPLICATIONS FOR REHABILITATION: Collaborating mental health professionals and social security professionals perceived their interdisciplinary collaboration as moderate. In order to improve the collaboration between mental health services (MHS) and vocational rehabilitation services on a local microlevel, organizations need to facilitate more structural collaboration between the professionals. Integrated services with the participation of MHS as well as vocational rehabilitation services, e.g. to share client information and to refer clients to each other, need to be developed. A national agreement between MHS and vocational rehabilitation services is a good starting point to improve collaboration between both the sectors.

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

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.

The Mental Disability Military Assessment Tool: A Reliable Tool for Determining Disability in Veterans with Post-traumatic Stress Disorder.

PURPOSE: An assessment tool was developed to assess disability in veterans who suffer from post-traumatic stress disorder (PTSD) due to a military mission. The objective of this study was to determine the reliability, intra-rater and inter-rater variation of the Mental Disability Military (MDM) assessment tool. METHODS: Twenty-four assessment interviews of veterans with an insurance physician were videotaped. Each videotaped interview was assessed by a group of five independent raters on limitations of the veterans using the MDM assessment tool. After 2 months the raters repeated this procedure. Next the intra-rater and inter-rater variation was assessed with an adjusted version of AG09 computing weighted percentage agreement. RESULTS: The results of this study showed that both the intra-rater variation and inter-rater variation on the ten subcategories of the MDM assessment tool were small, with an agreement of 84-100% within raters and 93-100% between raters. CONCLUSIONS: The MDM assessment tool proves to be a reliable instrument to measure PTSD limitations in functioning in Dutch military veterans who apply for disability compensation. Further research is needed to assess the validity of this instrument.

Structured diabetes care leads to differences in organization of care in general practices: the healthcare professional and patient perspective.

BACKGROUND: Care for patients with chronic diseases is challenging and requires multifaceted interventions to appropriately coordinate the entire treatment process. The effect of such interventions on clinical outcomes has been assessed, but evidence of the effect on organization of care is scarce.The aim is to assess the effect of structured diabetes care on organization of care from the perspective of patients and healthcare professionals in routine practice, and to ascertain whether this effect persists METHODS: In a quasi-experimental study the effect of structured care (SC) was compared with care-as-usual (CAU). Questionnaires were sent to healthcare professionals (SC n = 31; CAU n = 11) and to patients (SC n = 301; CAU n = 102). A follow-up questionnaire was sent after formal support of the intervention ended (2007). RESULTS: SC does have an effect on the organization of care. More cooperation between healthcare professionals, less referrals to secondary care and more education were reported in the SC group as compared to the CAU group. These changes were found both at the healthcare professional and at the patient level. Organizational changes remained after formal support for the intervention support had ended. CONCLUSION: According to patients and healthcare professionals, structured care does have a positive effect on the organization of care. The use of these two sources of information is important, not only to assess the value of changes in care for the patient and the healthcare provider but also to ascertain the validity of the results found.

Structured primary care for type 2 diabetes has positive effects on clinical outcomes.

BACKGROUND: Patients with type 2 diabetes have an increased risk of developing microvascular and macrovascular complications. In routine diabetes care an adequate reduction of risk factors for these complications is often not achieved. OBJECTIVE: The aim of the study was to evaluate the effects of structured diabetes care on clinical outcomes of patients with type 2 diabetes in primary care. METHODS: We performed a quasi-experimental study on the effects of structured care consisting of organizational and educational components (n = 581) compared with care-as-usual (n = 152). We assessed clinical outcomes of HbA1c, blood pressure, cholesterol, creatinine and body mass index, at baseline and after 1 year. The long-term effects in the structured care group were determined after another 2 years. RESULTS: Structured care led to improvement in HbA1c and long-term improvements in blood pressure and cholesterol compared with care-as-usual. After 1 year, the percentage of patients who did not deteriorate was higher in the structured care group, again for HbA1c, diastolic blood pressure, low-density lipoprotein cholesterol and body mass index. CONCLUSIONS: Structured diabetes care consisting of multiple components has a positive effect on clinical outcomes compared with care-as-usual. Our findings support its further implementation in order to reduce complications in type 2 diabetes patients.

A structured registration program can be validly used for quality assessment in general practice.

BACKGROUND: Patient information, medical history, clinical outcomes and demographic information, can be registered in different ways in registration programs. For evaluation of diabetes care, data can easily be extracted from a structured registration program (SRP). The usability of data from this source depends on the agreement of this data with that of the usual data registration in the electronic medical record (EMR).Aim of the study was to determine the comparability of data from an EMR and from an SRP, to determine whether the use of SRP data for quality assessment is justified in general practice. METHODS: We obtained 196 records of diabetes mellitus patients in a sample of general practices in the Netherlands. We compared the agreement between the two programs in terms of laboratory and non-laboratory parameters. Agreement was determined by defining accordance between the programs in absent and present registrations, accordance between values of registrations, and whether the differences found in values were also a clinically relevant difference. RESULTS: No differences were found in the occurrence of registration (absent/present) in the SRP and EMR for all the laboratory parameters. Smoking behaviour, weight and eye examination were registered significantly more often in the SRP than in the EMR. In the EMR, blood pressure was registered significantly more often than in the SRP. Data registered in the EMR and in the SRP had a similar clinical meaning for all parameters (laboratory and non-laboratory). CONCLUSIONS: Laboratory parameters showed good agreement and non-laboratory acceptable agreement of the SRP with the EMR. Data from a structured registration program can be used validly for research purposes and quality assessment in general practice.

Testing lifting capacity: validity of determining effort level by means of observation.

STUDY DESIGN: Video observation study. OBJECTIVES: To establish the validity of determining effort level by visual observation of a lifting test. SUMMARY OF BACKGROUND DATA: Determining effort level during a lifting test is critical for interpretation of test performance, yet the validity of these determinations has not been established in patients with chronic nonspecific low back pain. METHODS: Fifteen healthy subjects and 16 patients with chronic nonspecific low back pain performed a standardized lifting test as outlined in the Isernhagen Work System Functional Capacity Evaluation. The lifts were videotaped and independently observed by 9 trained observers, who rated effort levels using an Isernhagen Work System categorical scale and a Borg Category Ratio scale. External effort indexes were established to control for effort at group level. Validity of the observer ratings was analyzed by means of a sensitivity and specificity analysis and correlations between performances and observer ratings. Interrater reliability was analyzed by means of intraclass correlation coefficients and Cohen kappa. RESULTS: External indexes differ significantly between patients with chronic low back pain and healthy subjects, indicating that at group level, patients did not perform maximally. Submaximal performances were correctly rated in 85% to 90% (healthy subjects) and in 100% (patients with chronic nonspecific low back pain) of the cases. "Maximal" performances were correctly rated in 46% to 53% (healthy subjects) and in 5% to 7% (patients with chronic nonspecific low back pain) of the cases. Correlations between performances and observer ratings were r = 0.90 to r = 0.92 (healthy subjects) and r = 0.82 (patients with chronic nonspecific low back pain). Reliability: intraclass correlation coefficient, r = 0.76 (patients with chronic nonspecific low back pain) to r = 0.87 (healthy), Kappa K = 0.50 (patients with chronic nonspecific low back pain) to r = 0.58 (healthy subjects). CONCLUSIONS: Effort level can be determined validly by means of visual observation.