Michael A. Echteld

Overweight and obesity in older people with intellectual disability

Overweight and obesity are major health problems associated with increased cardiovascular disease risk, which is not sufficiently studied in people with intellectual disability yet. The present study was part of the Healthy Ageing in Intellectual Disability (HA-ID) study. The aim of this study was to establish (1) the prevalence of overweight, obesity and body fat percentage in older people with intellectual disability (ID) through measurement of Body Mass Index (BMI), waist circumference, waist-to-hip ratio (WHR) and skin fold thickness, and compare this with prevalence of overweight and obesity in the general population, and (2) the association of overweight and obesity with participant and treatment characteristics (gender, age, level of ID, Down syndrome, autism, independent living, smoking, (instrumental) activities of daily living ((I)ADL), physical activity and use of atypical antipsychotic medication) using regression analyses. In this cross-sectional study 945 persons, aged 50 and over with borderline to profound ID, living in central settings, in community settings and independently were included. Overweight and obesity were highly prevalent, with more obesity (26%) than in the general Dutch older population (10%) as measured by BMI, and 46-48% obesity as measured by waist circumference and WHR respectively. Women, people with Down syndrome, higher age, less severe ID, autism, people who are able to eat independently, preparing meals and doing groceries independently, people with physical inactivity and use of atypical antipsychotics were significantly more at risk of being overweight or obese. This merits specific actions by policy makers and clinical practice to improve health outcomes.

Evaluation of quality-of-life measures for use in palliative care: A systematic review

Purpose: In this literature review we evaluated the feasibility and clinimetric quality of quality-of-life (QoL) measurement instruments suitable for use in palliative care. Methods: We conducted a systematic literature review to identify instruments measuring (at least one domain of) QoL. We selected articles that present data on patients receiving palliative care and at least one measurement property. A checklist was used to describe the characteristics of the instruments, and a widely accepted rating list was used to evaluate the clinimetric aspects. Results: 29 instruments were identified and evaluated, most of which were targeted at palliative patients in general. None of the instruments demonstrated satisfactory results for all measurement properties. Fourteen instruments received positive ratings for construct validity. Thirteen instruments were tested for reliability, but only two were tested adequately and had positive results (ICC>0.70). Responsiveness was not tested adequately for any of the instruments. Very few of the studies provided information on the interpretation of the scores. Overall, the MQOL, followed by the QUAL-E and the QODD, received the best ratings for their measurement properties. Conclusions: Many measurement instruments were identified, but most had not yet been adequately evaluated. The evaluation of existing instruments with good content validity should have priority over the development of new instruments.

Perceived barriers and facilitators for general practitioner-patient communication in palliative care: A systematic review

While effective general practitioner (GP)–patient communication is required for the provision of good palliative care, barriers and facilitators for this communication are largely unknown. We aimed to identify barriers and facilitators for GP–patient communication in palliative care. In a systematic review seven computerized databases were searched to find empirical studies on GP–patient communication in palliative care. Fifteen qualitative studies and seven quantitative questionnaire studies were included. The main perceived barriers were GPs’ lack of availability, and patients’ and GPs’ ambivalence to discuss ‘bad prognosis’. Main perceived facilitators were GPs being available, initiating discussion about several end-of-life issues and anticipating various scenarios. Lack of availability and failure to discuss former mistakes appear to be blind spots of GPs. GPs should be more forthcoming to initiate discussions with palliative care patients about prognosis and end-of-life issues. Empirical studies are needed to investigate the effectiveness of the perceived barriers and facilitators.

Cardiovascular risk factors (diabetes, hypertension, hypercholesterolemia and metabolic syndrome) in older people with intellectual disability: results of the HA-ID study.

Hypertension, diabetes, hypercholesterolemia and the metabolic syndrome are important risk factors for cardiovascular disease (CVD). In older people with intellectual disability (ID), CVD is a substantial morbidity risk. The aims of the present study, which was part of the Healthy Ageing in Intellectual Disability (HA-ID) study, were (1) to determine the prevalence of CVD risk factors in older people with ID and to compare this with the prevalence in the same-aged general population, (2) to determine how many risk factors had not been previously diagnosed, and (3) to identify correlates of CVD risk factors (gender, age, level of ID, Down syndrome, independent living, activities of daily living, mobility, instrumental activities of daily living, physical activity, use of atypical antipsychotics, central obesity), using logistic regression analyses. In this cross-sectional study, 980 people with borderline to profound ID participated. Hypertension (53%), diabetes (14%) and metabolic syndrome (45%) were present similarly as in the general Dutch population. Hypercholesterolemia was present less often (23%). Fifty percent of the people with hypertension had not been previously diagnosed with this condition. Percentages for diabetes, hypercholesterolemia, and the metabolic syndrome were 45, 46 and 94 respectively. People who were more at risk for CVD risk factors were women, older people, people with obesity, people who lived more independently and people who were able to do groceries or prepare a meal independently. Policy on prevention, detection and treatment of CVD risk factors is urgently needed.

Transitions between care settings at the end of life in the Netherlands: results from a nationwide study.

Multiple transitions between care settings in the last phase of life could jeopardize continuity of care and overall end-of-life patient care. Using a mortality follow-back study, we examined the nature and prevalence of transitions between Dutch care settings in the last 3 months of life, and identified potential characteristics associated with them. During the 2-year study period, 690 registered patients died ‘totally expectedly and non-suddenly’. These made 709 transitions in the last 3 months, which involved a hospital two times out of three, and covered 43 distinct care trajectories. The most frequent trajectory was home-to-hospital (48%). Forty-six percent experienced one or more transitions in their last month of life. Male gender, multi-morbidities, and absence of GP awareness of a patient’s wish for place of death were associated with having a transition in the last 30 days of life; age of ≤85 years, having an infection and the absence of a palliative-centred treatment goal were associated with terminal hospitalization for ≥7 days. Although the majority of the ‘totally expected and non-sudden’ deaths occurred at home, transitions to hospitals were relatively frequent. To minimize abrupt or frequent transitions just before death, timely recognition of the palliative phase of dying is important.

Frailty and Disability in Older Adults with Intellectual Disabilities: Results from the Healthy Ageing and Intellectual Disability Study

To obtain first insight into prevalence and correlates of frailty in older people with intellectual disability (ID).

Development of a frailty index for older people with intellectual disabilities: Results from the HA-ID study

BACKGROUND Although there is no strict definition of frailty, it is generally accepted as a state of high vulnerability for adverse health outcomes at older age. Associations between frailty and mortality, dependence, and hospitalization have been shown. We measured the frailty level of older people with intellectual disabilities (ID). Furthermore variation in gender, age, and level of ID were identified. Results were compared to a frailty study in the general European population. METHODS This research elaborates on a large cross-sectional study: Healthy Ageing with Intellectual Disability (HA-ID). Nine hundred-eighty-two men and women (≥ 50 yr) with ID were included. Based on the collected data, we developed a frailty index with 51 health-related deficits, and calculated a frailty index score between 0 and 1 for each individual. Deficits included physical, social and psychological problems. RESULTS The mean frailty index score was 0.27 (standard deviation .13). Frailty was positively correlated with age (r=0.297, p<.001). More severe ID was associated with higher frailty scores (β=0.440, p<001). The upper limit of the FI was 0.69, which was consistent for all age categories. CONCLUSION As people with ID are getting older, the question whether additional years are spent in good health becomes salient. Here, people with ID over age 50 had frailty scores similar to most elderly people over 75 y. Future research is needed to confirm if frail elderly people with ID have an increased risk of adverse health outcomes.

End-of-Life Care and Circumstances of Death in Patients Dying As a Result of Cancer in Belgium and the Netherlands: A Retrospective Comparative Study

PURPOSE To examine and compare end-of-life care in patients with cancer dying in Belgium and the Netherlands. PATIENTS AND METHODS A mortality follow-back study was undertaken in 2008 via representative nationwide sentinel networks of general practitioners (GPs) in Belgium and the Netherlands. By using similar standardized procedures, GPs reported on aspects of end-of-life care and the circumstances of nonsudden death of patients with cancer in their practice. RESULTS Of the 422 reported patients with cancer, most resided at home during the last year of life (Belgium, 91%; the Netherlands, 95%). Death occurred at home in 34% (Belgium) and 61% (the Netherlands) and in the hospital in 29% (Belgium) and 19% (the Netherlands). In the last month of life, end-of-life issues were more often discussed in the Netherlands (88%) than in Belgium (68%). In both countries, physical problems were discussed most often (Belgium, 49%; the Netherlands, 78%) and spiritual issues least often (Belgium, 20%; the Netherlands, 32%). Certain end-of-life treatment preferences were known for 43% (Belgium) and 67% (the Netherlands) of patients. In the last week of life, treatment was most often focused on palliation (Belgium, 94%; the Netherlands, 91%). Physical distress was reported in 84% (Belgium) and 76% (the Netherlands) of patients and psychological distress in 59% and 36%. Most distressing was lack of energy (Belgium, 73%; the Netherlands, 71%) and lack of appetite (Belgium, 61%; the Netherlands, 53%). Two thirds of patients were bedridden (Belgium, 67%; the Netherlands, 69%). CONCLUSION Although place of death and communication about end-of-life issues differ substantially, a palliative treatment goal is adopted for the vast majority of patients in both countries. However, GPs reported that the majority of patients experienced symptom distress at the end of life, which suggests important challenges remain for improving end-of-life care.

EORTC QLQ-C15-PAL: the new standard in the assessment of health-related quality of life in advanced cancer?

The palliative care research community has been waiting for an internationally validated palliative care-specific health-related quality of life (HRQOL) instrument and the recently published EORTC QLQ-C15-PAL seems to be an important step forward in this direction. Although HRQOL is considered to be the most important outcome measure in palliative care, adequate instruments utilizable in the end-stage of disease are still lacking. Kaasa and Loge emphasized the importance of this issue, and highlighted the fact that an authoritative HRQOL instrument for palliative care is not yet available. We therefore welcome the publication of the paper by Groenvold et al., who presented a shortened version of the widely-used EORTC QLQ-C30 cancer-specific health-related quality of life questionnaire to be used in a palliative care setting. The latest version of the QLQC30 consists of 30 items comprising five multi-item scales (physical, role, emotional, cognitive, and social function), three symptom scales (fatigue, pain, and nausea/vomiting), one scale assessing ‘global health status and quality of life’, and six single items. By careful reduction of the number of QLQ-C30-items, the authors aimed at addressing the problems that make the QLQ-C30 unsuitable for use in palliative care settings: length and inappropriate or irrelevant content for patients receiving palliative care. The authors used two methods for reducing the number of QLQ-C30 items. Multi-item scales were reduced by means of techniques based on item response theory (IRT), a framework for analyzing multi-item scales, which is currently the most widely used method in computerized adaptive testing. In a second stage, which was reported in the current article, QLQ-C30 items were reduced by asking a group of patients and professional carers to rate the relevance and appropriateness of each. The authors used both methods for the construction of the QLQ-C15 PAL, and concluded that this new questionnaire ‘ . . . has good content validity as a ‘‘core palliative care questionnaire’’ assessing the symptoms and problems for which patients are frequently treated.’ In addition, thanks to the use of IRT, the QLQ-C15-PAL makes the extension of cancer clinical trials possible to measurements of patients receiving palliative care. We believe the QLQ-C15-PAL will prove to be invaluable for researchers conducting clinical trials using the QLQ-C30, and who would like to follow-up their patients into the palliative care phase. However, we believe that the QLQ-C15-PAL in its present form still has a number of limitations, which makes it hard to recommend as a ‘core palliative care questionnaire’. We have concerns regarding sensitivity and the lack of relevant items. Knobel et al. found floor and ceiling effects of the fatigue subscale of the QLQ-C30 in comparison with a palliative care-specific fatigue measure. In addition, they questioned the validity of the QLQ-C30 fatigue subscale in palliative care settings. We wonder if the validity of other QLQ-C30/QLQ-C15-PAL subscales should also be questioned / a legitimate concern, because the QLQ-C30 (of which 15 unaltered items appear in the QLQ-C15) was not developed for and validated in palliative care populations. Thus, sensitivity and aspects of validity of the QLQ-C15-PAL should additionally be studied in cancer patients receiving palliative care. We question the choice of asking a small group of selected patients about the relevance of items. It is very difficult for individuals to judge the relevance of problems that they did not experience before. It is not surprising, for example, that the patients in the Groenvold study did not believe that dyspnoea was particularly relevant to their quality of life, because the sample did not contain lung cancer patients. Similarly, it is not surprising that the relevance scores of patients and professionals (who witnessed the consequences of various symptoms for patients many times), diverged considerably (see Table 4 in the Groenvold paper). These differences do not justify averaging patient and professional relevance scores as was done is this study. As was indicated by the respondents in the Groenvold study, key questions are missing in the questionnaire, including existential and spiritual issues, worries related to relatives and to the future, and issues related to information, satisfaction with care, and social support. Others have highlighted the importance of these topics. Hearn and Higginson and Cohen and colleagues demonstrated the importance of gauging existential well-being especially in advanced cancer patients. Studies assessing individual quality of life in advanced cancer patients showed that these topics indeed are equally Palliative Medicine 2006; 20: 1 /2

Spirituality at the End of Life: Conceptualization of Measurable Aspects—a Systematic Review

Although spiritual caregiving is a key domain of palliative care, it lacks a clear definition, which impedes both caregiving and research in this domain. The aim of this study was to conceptualize spirituality by identifying dimensions, based on instruments measuring spirituality in end-of-life populations. A systematic literature review was conducted. Literature published between 1980 and 2009, focussing on instruments measuring spirituality at the end of life was collected from the PubMed, Cumulative Index to Nursing and Allied Health Literature (CINAHL), and PsycINFO databases. Inclusion criteria were: (1) the studies provide empirical data collected with an instrument measuring spirituality or aspects of spirituality at the end of life; (2) the data report on a (subgroup) of an end-of-life population, and (3) the instrument is available in the public domain. Content validity was assessed according to a consensus-based method. From the items of the instruments, three investigators independently derived dimensions of spirituality at the end of life. In 36 articles that met the inclusion criteria we identified 24 instruments. Nine instruments with adequate content validity were used to identify dimensions of spirituality. To adequately represent the items of the instruments and to describe the relationships between the dimensions, a model defining spirituality was constructed. The model distinguishes the dimensions of Spiritual Well-being (e.g., peace), Spiritual Cognitive Behavioral Context (Spiritual Beliefs, Spiritual Activities, and Spiritual Relationships), and Spiritual Coping, and also indicates relationships between the dimensions. This model may help researchers to plan studies and to choose appropriate outcomes, and assist caregivers in planning spiritual care.