Advance care planning in the palliative phase of people with intellectual disabilities: analysis of medical files and interviews.

BACKGROUND: Advance care planning (ACP) is a process in which professionals, patients and their relatives discuss wishes and options for future care. ACP in the palliative phase reduces the chance that decisions have to be taken suddenly and can therefore improve the quality of life and death. The primary aim of this study is to explore how ACP takes place in cases of people with intellectual disabilities (ID). METHOD: Medical files were analysed, and interviews were held in six care organisations for people with mild to severe ID. The data concerned people with ID (n = 30), 15 in the palliative phase, identified using the 'surprise question', and 15 who had died after an identifiable period of illness. Additional pre-structured telephone interviews were conducted with their relatives (n = 30) and professionals (n = 33). RESULTS: For half of the people with ID who had died, the first report in their file about palliative care (needs) was less than 1 month before their death. Professionals stated that ACP was started in response to the person's deteriorating health situation. A do-not-attempt-resuscitation order was recorded for nearly all people with ID (93%). A smaller group also had other agreements between professionals and relatives documented in their files, mainly about potentially life-sustaining treatments (43%) and/or hospitalisation admissions (47%). Relatives and professionals are satisfied with the mutual cooperation in ACP in the palliative phase. Cognitive and communication disabilities were most frequently mentioned by relatives and professionals as reasons for not involving people with ID in ACP. CONCLUSIONS: Advance care planning in the palliative phase of people with ID focuses mainly on medical issues at the end of life. Specific challenges concern a proactive identification of changing needs, fear to initiate ACP discussions, documentation of ACP in medical files and the involvement of people with ID in ACP. It is recommended that relatives and professionals should be informed about the content of ACP and professionals should be trained in communicating in advance about wishes for future care.

Co-Presence of Multimorbidity and Disability with Frailty: An Examination of Heterogeneity in the Frail Older Population.

BACKGROUND: Frailty is often associated with multimorbidity and disability. OBJECTIVES: We investigated heterogeneity in the frail older population by characterizing five subpopulations according to quantitative biological markers, multimorbidity and disability, and examined their association with mortality and nursing home admission. DESIGN: Observational study. PARTICIPANTS: Participants (n=4,414) were from the population-based Age Gene/Environment Susceptibility Reykjavik Study. MEASUREMENTS: Frailty was defined by ≥ 3 of five characteristics: weight loss, weakness, reduced energy levels, slowness and physical inactivity. Multimorbidity was assessed using a simple disease count, based on 13 prevalent conditions. Disability was assessed by five activities of daily living; participants who had difficulty with one or more tasks were considered disabled. Differences among frail subpopulations were based on the co-presence of multimorbidity and disability. Differences among the following subpopulations were examined: 1) Non-frail (reference group); 2) Frail only; 3) Frail with disability; 4) Frailty with multimorbidity; 5) Frail with disability and multimorbidity. RESULTS: Frailty was present in 10.7% (n=473). Frailty was associated with increased risk for mortality (OR 1.40; 95% CI 1.15-1.69) and nursing home admission (OR 1.50; 95% CI 1.16-1.93); risks differed by subpopulations. Compared to the non-frail, the frail only group had poorer cognition and increased inflammation levels but did not have increased risk for mortality (OR 1.40; 95% CI 0.84-2.33) or nursing home admission (OR 1.01; 95% CI 0.46-2.21). Compared to the non-frail, the other frail subpopulations had significantly poorer cognition, increased inflammation levels, more white matter lesions, higher levels of calcium, glucose and red cell distribution width and increased risk for mortality and nursing home admission. CONCLUSIONS: The adverse health risks associated with frailty in the general older adult population may primarily be driven by increased disease burden and disability.

Influence of multimorbidity on cognition in a normal aging population: a 12-year follow-up in the Maastricht Aging Study.

OBJECTIVE: The prevalence of multimorbidity has risen considerably because of the increase in longevity and the rapidly growing number of older individuals. Today, only little is known about the influence of multimorbidity on cognition in a normal healthy aging population. The primary aim of the present study was to investigate the effect of multimorbidity on cognition over a 12-year period in an adult population with a large age range. METHODS: Data were collected as part of the Maastricht Aging Study (MAAS), a prospective study into the determinants of cognitive aging. Eligible MAAS participants (N = 1763), 24-81 years older, were recruited from the Registration Network Family Practices (RNH) which enabled the use of medical records. The association between 96 chronic diseases, grouped into 23 disease clusters, and cognition on baseline, at 6 and 12 years of follow-up, were analyzed. Cognitive performance was measured in two main domains: verbal memory and psychomotor speed. A multilevel statistical analysis, a method that respects the hierarchical data structure, was used. RESULTS: Multiple disease clusters were associated with cognition during a 12-year follow-up period in a healthy adult population. The disease combination malignancies and movement disorders multimorbidity also appeared to significantly affect cognition. CONCLUSIONS: The current results indicate that a variety of medical conditions adversely affects cognition. However, these effects appear to be small in a normal healthy aging population.

Multimorbidity and its relation to subjective memory complaints in a large general population of older adults.

BACKGROUND: Multimorbidity has been suggested to be associated with a variety of negative health-related outcomes. The present study was designed to evaluate the association between multimorbidity and subjective memory complaints. METHODS: This cross-sectional study was based on data obtained from a postal survey designed by the Public Health Service (Gemeentelijke Gezondheids Dienst, GGD) involving 15,188 persons aged 55 years and over living independently in Limburg, the Netherlands. Multivariate logistic regression analyses, adjusted for potentially important covariates, were performed to evaluate the association between self-reported multimorbidity and three outcomes related to subjective memory complaints. RESULTS: Multimorbidity was indeed related to subjective memory complaints. The association between multimorbidity and subjective memory complaints was positively influenced by age. Moreover, multimorbidity was related to the degree of worrying about memory complaints in people who perceived themselves as forgetful. Multimorbidity was also associated with reporting a larger increase in these subjective memory complaints during the past year. In this latter case, multimorbidity had more prognostic capability in men than in women. Psychological distress was related to all three subjective memory-related outcome measures. CONCLUSIONS: In our sample, which was representative of the Dutch population, multimorbidity was associated with subjective memory complaints. The relationship between multimorbidity and subjective memory complaints differed between men and women and between age groups.

One-year follow-up results of unsupported online computerized cognitive behavioural therapy for depression in primary care: A randomized trial.

OBJECTIVE: To report the one-year follow-up results of computerized cognitive behavioural therapy (CCBT), offered online without professional support, for depression compared with usual GP care and a combination of both treatments. To explore potential relapse prevention effects of CCBT. METHODS: 303 depressed patients were randomly allocated to (a) unsupported online CCBT (b) treatment as usual (TAU), or (c) CCBT and TAU combined. We had a 12-month follow-up period. Primary outcome measure was the Beck Depression Inventory II. Self-reported health care use was also measured. KEY FINDINGS: At 12 months, no statistically significant differences between the three interventions are found in the intention-to-treat population for depressive severity, reliable improvement, remission, and relapse. In the first quarter, differences in health care consumption between the three interventions are significant (i.e. less GP contacts, less antidepressant medication, and less specialist mental health care in the CCBT group), but these differences disappear over time. CONCLUSIONS: Unsupported online CCBT is not superior to TAU by a GP for depression. With equal effects, CCBT alone leads to less health care consumption than TAU and CCBT&TAU. Overall effects are modest in all interventions, which can be explained by the finding that the use of health care services decreases despite the lack of substantial improvements.

Workplace learning in general practice: supervision, patient mix and independence emerge from the black box once again.

BACKGROUND: Medical students increasingly participate in rotations in primary care settings, such as general practices. Although general practices can differ markedly from hospital settings, research on the instructional quality of general practice rotations is relatively scarce. AIM: We conducted a study to identify which aspects make a significant contribution to the instructional quality of general practice clerkships, as perceived by students. METHOD: After completing their general practice attachment, 155 fifth-year medical students filled out an evaluation questionnaire. Exploratory factor analysis and reliability analysis identified clusters of correlated independent variables. Subsequent regression analysis revealed the relations between the reduced set of independent variables and the dependent variable 'Instructional quality'. RESULTS: Both the quality of supervision and the size and diversity of the patient mix substantially affected students' experienced instructional quality. Opportunities and facilities to perform independently were correlated with instructional quality, but did not affect the instructiveness directly. CONCLUSIONS: Supervision, patient mix and independence are crucial factors for learning in general practice. This is consistent with findings in hospital settings. The perceived quality of instruction hinges on supervision, which is not only the variable most strongly related to instructional quality, but which also affects both the patient mix and students' independence.

Economic evaluation of online computerised cognitive-behavioural therapy without support for depression in primary care: randomised trial.

BACKGROUND: Evidence about the cost-effectiveness and cost utility of computerised cognitive-behavioural therapy (CCBT) is still limited. Recently, we compared the clinical effectiveness of unsupported, online CCBT with treatment as usual (TAU) and a combination of CCBT and TAU (CCBT plus TAU) for depression. The study is registered at the Netherlands Trial Register, part of the Dutch Cochrane Centre (ISRCTN47481236). AIMS: To assess the cost-effectiveness of CCBT compared with TAU and CCBT plus TAU. METHOD: Costs, depression severity and quality of life were measured for 12 months. Cost-effectiveness and cost-utility analyses were performed from a societal perspective. Uncertainty was dealt with by bootstrap replications and sensitivity analyses. RESULTS: Costs were lowest for the CCBT group. There are no significant group differences in effectiveness or quality of life. Cost-utility and cost-effectiveness analyses tend to be in favour of CCBT. CONCLUSIONS: On balance, CCBT constitutes the most efficient treatment strategy, although all treatments showed low adherence rates and modest improvements in depression and quality of life.

Diabetes mellitus type II as a risk factor for depression: a lower than expected risk in a general practice setting.

The aim of the present study was to determine whether a diagnosis of diabetes mellitus (DM) in a primary setting is associated with an increased risk of subsequent depression. A retrospective cohort design was used based on the Registration Network Family Practice (RNH) database. Patients diagnosed with diabetes mellitus at or after the age of 40 and who were diagnosed between 01-01-1980 and 01-01-2007 (N = 6,140), were compared with age-matched controls from a reference group (N = 18,416) without a history of diabetes. Both groups were followed for an emerging first diagnosis of depression (and/or depressive feelings) until January 1, 2008. 2.0% of the people diagnosed with diabetes mellitus developed a depressive disorder, compared to 1.6% of the reference group. After statistical correction for confounding factors diabetes mellitus was associated with an increased risk of developing subsequent depression (HR 1.26; 95% CI: 1.12-1.42) and/or depressive feelings (HR 1.33; 95% CI: 1.18-1.46). After statistical adjustment practice identification code, age and depression preceding diabetes, were significantly related to a diagnosis of depression. Patients with diabetes mellitus are more likely to develop subsequent depression than persons without a history of diabetes. Results from this large longitudinal study based on a general practice population indicate that this association is weaker than previously found in cross-sectional research using self-report surveys. Several explanations for this dissimilarity are discussed

Clinical effectiveness of online computerised cognitive-behavioural therapy without support for depression in primary care: randomised trial.

BACKGROUND: Computerised cognitive-behavioural therapy (CCBT) might offer a solution to the current undertreatment of depression. AIMS: To determine the clinical effectiveness of online, unsupported CCBT for depression in primary care. METHOD: Three hundred and three people with depression were randomly allocated to one of three groups: Colour Your Life; treatment as usual (TAU) by a general practitioner; or Colour Your Life and TAU combined. Colour Your Life is an online, multimedia, interactive CCBT programme. No assistance was offered. We had a 6-month follow-up period. RESULTS: No significant differences in outcome between the three interventions were found in the intention-to-treat and per protocol analyses. CONCLUSIONS: Online, unsupported CCBT did not outperform usual care, and the combination of both did not have additional effects. Decrease in depressive symptoms in people with moderate to severe depression was moderate in all three interventions. Online CCBT without support is not beneficial for all individuals with depression.

Prevalence of people with intellectual disability in the Netherlands.

BACKGROUND: Since the 1990s, people with intellectual disability (ID) in the Netherlands have been moving from institutions to supported accommodation in the community. The Government is in need of recent data on the numbers of these people, to ensure adequate care provision and funding. This paper reports on the prevalence of people with ID in the Netherlands. The research question was: what is the lowest and highest estimation of prevalence of people with ID in the Netherlands? METHODS: Two extrapolation methods were used, each consisting of a number of stages, using general practice databases and ID care services records. RESULTS: The prevalence of people with ID in the Netherlands was 0.7% (111,750 persons). Other assumptions yielded 0.54-0.64%. Arguments for the two extrapolation methods and the lowest and highest estimation of prevalence are discussed. CONCLUSIONS: Compared with 1988, there has been a slight decrease in the prevalence of people with ID in the Netherlands, even though we included all age groups and even people with ID of who were not included in ID care services records. By using general practitioner databases it was possible to identify these not registered people with ID.

The prevalence of intellectual disability in Limburg, the Netherlands.

BACKGROUND: Current changes in care philosophy and diversity in care arrangements caused the need for a new estimate of the number of people with intellectual disability (ID), based on recent data. Previous estimates were based on client registrations, which was thought unreliable at this time. This manuscript studies the question how many people with ID can be found in (part of) the Netherlands. METHODS: Identification of people with ID through a combination of general practice (GP) data bases and service registrations in the province of Limburg. RESULTS: The prevalence of people with ID appeared to be between 0.64% and 0.70%. About 0.21-0.27% were living with family or on their own; 55% of them did not use common ID services. CONCLUSION: Results are based on a combination of identification methods. Thirteen per cent of uncertain cases led to minimum and maximum estimates of the population. Limitations of the method and alternative ways of data collection are discussed.

Seeking help in relation to work--visiting the occupational physician or the general practitioner.

BACKGROUND: It has not yet been examined whether employees with health or work problems prefer visiting the Occupational Physician (OP) or the General Practitioner (GP). AIM: Examining whether health and work problems predict visiting the OP or GP. METHOD: Multiple regression analyses within a prospective cohort study. RESULTS: None of the predictors was exclusively associated with visiting the OP, while emotional work demands and work-family conflict were associated with visiting the GP in relation to work. CONCLUSIONS: OPs might wish to clarify their preventive role to employees.

Associations between fatigue attributions and fatigue, health, and psychosocial work characteristics: a study among employees visiting a physician with fatigue.

AIMS: To study associations between characteristics of employees active at work and making a fatigue related visit to the general practitioner (GP) or occupational physician (OP) in terms of fatigue, physical health problems, mental health problems, psychosocial work characteristics, and attributions of their fatigue complaints. METHODS: Self report questionnaires from the Maastricht Cohort Study Fatigue at Work were used to measure fatigue (Checklist Individual Strength, Maslach Burnout Inventory-General Survey), physical health problems (chronic illness), mental health problems (Hospital Anxiety and Depression Scale), psychosocial work characteristics (Job Content Questionnaire), and fatigue attributions (somatic, psychological, none) in employees who made a fatigue related visit to the GP or OP over a six month period. RESULTS: In employees visiting only the GP, fatigue was an important reason to visit in one of seven (13.9%) employees. These fatigue related visits were in particular associated with high fatigue levels and mental health problems. A psychological fatigue attribution was reported by 41.8%, a somatic fatigue attribution by 44.0%. On a multivariate level, mental health problems showed the strongest association with psychological fatigue attributions, over and beyond fatigue itself. No associations were found between fatigue attributions and psychosocial work characteristics. Attributional patterns appeared to be different between visitors of the GP and the OP. CONCLUSIONS: Fatigue is a common reason among employees to consult a GP. Asking employees for their own fatigue attributions in terms of somatic or psychological causes may be useful for the GP-and possibly also the OP-to gather information about underlying health problems in employees active at work and making a fatigue related visit.

Health problems and psychosocial work environment as predictors of long term sickness absence in employees who visited the occupational physician and/or general practitioner in relation to work: a prospective study.

AIMS: To determine whether psychosocial work environment and indicators of health problems are prospectively related to incident long term sickness absence in employees who visited the occupational physician (OP) and/or general practitioner (GP) in relation to work. METHODS: The baseline measurement (May 1998) of the Maastricht Cohort Study, a prospective cohort study among 45 companies and organisations, was used to select employees at work who indicated having visited the OP and/or GP in relation to work. Self report questionnaires were used to measure indicators of health problems (presence of at least one long term disease, likeliness of having a mental illness, fatigue) and psychosocial work environment (job demands, decision latitude, social support, job satisfaction) as predictors of subsequent sickness absence. Sickness absence data regarding total numbers of sickness absence days were obtained from the companies and occupational health services during an 18 month period (between 1 July 1998 and 31 December 1999). Complete data were available from 1271 employees. RESULTS: After adjustment for demographics and the other predictors, presence of at least one long term disease (OR 2.36; 95% CI 1.29 to 4.29) and lower level of decision latitude (OR 1.69; 95% CI 1.22 to 2.38) were the strongest predictors for sickness absence of at least one month. A higher likelihood of having a mental illness, a higher level of fatigue, a lower level of social support at work, and low job satisfaction were also significant predictors for long term sickness absence, but their effect was less strong. CONCLUSION: In detecting employees at work but at risk for long term sickness absence, OPs and GPs should take into account not only influence of the psychosocial work environment in general and level of decision latitude in particular, but also influence of indicators of health problems, especially in the form of long term diseases.

Health and psychosocial work characteristics of employees who did or did not consult the general practitioner in relation to work.

OBJECTIVES: To examine how health problems and psychosocial work characteristics are associated with having visited or not having visited the general practitioner (GP) in relation to work. METHODS: Baseline self-reported data of the Maastricht Cohort Study about fatigue at work were used to gather information about fatigue (Checklist Individual Strength), presence of at least one long-term disease, likelihood of having a mental illness (General Health Questionnaire), and psychosocial work characteristics (psychological job demands, decision latitude and social support at work, as measured with the Job Content Questionnaire). The cohort participants indicated having visited (VISITORS) or not having visited (NON-VISITORS) the GP in relation to work. Differences between these groups were measured by multiple logistic regression analyses. RESULTS: When compared with VISITORS and taking into account the influence of sociodemographic characteristics and mutual associations between reported health problems and psychosocial work characteristics, a lower percentage of NON-VISITORS reported at least one long-term disease and NON-VISITORS presented lower levels of fatigue and psychological job demands, and higher levels of decision latitude and social support at work. CONCLUSIONS: The results of this study indicate that NON-VISITORS reported fewer health problems and a more positive perception of their work environment than VISITORS did. Interrelationships between psychosocial work characteristics and health variables should be taken into consideration when studying their associations with visiting the GP in relation to work.

Increased risk of Parkinson's disease after depression: a retrospective cohort study.

BACKGROUND: Depression has been linked to the occurrence of a number of somatic diseases. There are no data for PD. OBJECTIVE: To determine if depression is associated with a subsequent risk for PD. METHODS: A retrospective cohort study design based in general practice was applied. All subjects diagnosed with depression between 1975 and 1990 were included and matched with subjects with the same birth year who were never diagnosed with depression. Follow-up ended at April 30, 2000. Hazard ratios (HR) and 95% CI were calculated using Cox proportional hazards models adjusted for age, sex, and socioeconomic status. Subgroups based on sex and age at diagnosis of depression were evaluated separately. RESULTS: Among the 1,358 depressed subjects, 19 developed PD, and among the 67,570 nondepressed subjects, 259 developed PD. The HR (95% CI) for depressed vs nondepressed subjects was 3.13 (1.95 to 5.01) in multivariable analysis. Associations in subgroups were comparable with the overall association. CONCLUSION: A strong positive association was found between depression and subsequent incidence of D.

Barriers in the care of patients who have experienced a traumatic event: the perspective of general practice.

BACKGROUND: Previous research has indicated that GPs encounter barriers in the care of patients who have experienced a traumatic event. OBJECTIVES: The aims of the present study were to map barriers GPs encounter in the care of patients who experience a traumatic event and solutions for these barriers, and to estimate the influence of GP characteristics on the number of barriers experienced. METHODS: Telephone interviews were conducted among a sample of 500 Dutch GPs stratified by sex. Topics covered barriers in the care of victims of: accidents, incest in the past, ongoing physical or sexual abuse of adults, and ongoing physical or sexual abuse of children. RESULTS: The response rate was 44%. GPs are regularly confronted with patients who have experienced a traumatic event. GPs experience 10% barriers in care of patients who have difficulties getting over an accident, 13% in the care of incest victims, 16% in the care of adults who are physically or sexually abused, and 20% in the care of physically or sexually abused children. Most of the GPs recently updated their knowledge of care of victims of traumatic events, but still the majority feel in need of additional expert training. CONCLUSION: GPs experience the greatest number of barriers in the care of children who are abused. GP characteristics were not related to the number of barriers. However, seeing more victims was related to fewer barriers. To facilitate GP care of victims of traumatic events, GP training and continuing medical education should focus especially on skills education regarding the detection and initial treatment of traumatic events of ongoing physical or sexual abuse.

Psychosocial patient characteristics and GP-registered chronic morbidity: a prospective study.

OBJECTIVE: The aim of this study was to get a profile of patients who are vulnerable to get multiple chronic, recurrent or high-impact diseases in a limited time period. We studied the incidence rates of morbidity and multimorbidity, and the influence of psychosocial characteristics on their occurrences. METHOD: Cohort study with 3551 subjects. Baseline measurement of psychosocial characteristics and a 2-year follow-up period for morbidity. The relations were evaluated using multiple logistic regression analysis. RESULTS: After adjustment for basic socio-demographic variables, a high internal locus of control belief was found to be protective [odds ratio (OR)=0.82] for the occurrence of morbidity, negative life events increased the risk (OR=1.22). Characteristics specifically protective for the occurrence of multimorbidity as compared to monomorbidity were: a high internal locus of control belief (OR=0.73), living as a couple or in a family as compared to living alone (OR=0.68) and a large social network (OR=0.41). CONCLUSION: It appears that certain patient characteristics are specifically related to the occurrence of multimorbidity. This provides opportunities for the future development of preventive interventions.

Visual determinants of reduced performance on the Stroop color-word test in normal aging individuals.

It is unknown to what extent the performance on the Stroop color-word test is affected by reduced visual function in older individuals. We tested the impact of common deficiencies in visual function (reduced distant and close acuity, reduced contrast sensitivity, and color weakness) on Stroop performance among 821 normal individuals aged 53 and older. After adjustment for age, sex, and educational level, low contrast sensitivity was associated with more time needed on card I (word naming), red/green color weakness with slower card 2 performance (color naming), and reduced distant acuity with slower performance on card 3 (interference). Half of the age-related variance in speed performance was shared with visual function. The actual impact of reduced visual function may be underestimated in this study when some of this age-related variance in Stroop performance is mediated by visual function decrements. It is suggested that reduced visual function has differential effects on Stroop performance which need to be accounted for when the Stroop test is used both in research and in clinical settings. Stroop performance measured from older individuals with unknown visual status should be interpreted with caution.

Health problems in people with intellectual disability in general practice: a comparative study.

In a GP database, 318 people with intellectual disability (ID) appeared to have 2.5 times more health problems than people without ID. This short report deals with the nature of the health problems. Consequences for health care policy are discussed.