G. Leusink

Depression after low-energy fracture in older women predicts future falls: a prospective observational study

BackgroundFalls are one of the main causes of fractures in elderly people and after a recent fracture, the risk of another fall is increased, resulting in subsequent fracture. Therefore, risk factors for future falls should be determined. We prospectively investigated the relationship between depression and the incidence of falls in post-menopausal women after a low-energy fracture.MethodsAt baseline, 181 women aged 60 years and older who presented with a recent low-energy fracture were evaluated at the fracture and osteoporosis outpatient clinics of two hospitals. As well as clinical evaluation and bone mineral density tests, the presence of depression (measured using the Edinburgh Depression Scale, EDS, depression cut-off > 11) and risk factors for falling were assessed. During two years of follow-up, the incidence of falls was registered annually by means of detailed questionnaires and interviews.ResultsSeventy-nine (44%) of the women sustained at least one fall during follow-up. Of these, 28% (n = 22) suffered from depression at baseline compared to 10% (n = 10) of the 102 women who did not sustain a fall during follow-up (Χ2 = 8.76, df = 1, p = .003). Multiple logistic regression showed that the presence of depression and co-morbidity at baseline were independently related to falls (OR = 4.13, 95% CI = 1.58-10.80; OR = 2.25, 95% CI = 1.11-4.56, respectively) during follow-up.ConclusionsThe presence of depression in women aged 60 years and older with recent low-energy fractures is an important risk factor for future falls. We propose that clinicians treating patients with recent low-energy fractures should anticipate not only on skeletal-related risk factors for fractures, but also on fall-related risk factors including depression.

Exploring academics’ views on designs, methods, characteristics and outcomes of inclusive health research with people with intellectual disabilities: a modified Delphi study

Background The British Medical Journals (BMJs) patient revolution strives for collaboration with patients in healthcare and health research. This paper studies collaboration with people with intellectual disabilities (ID) in health research, also known as inclusive health research. Currently, transparency and agreement among academics is lacking regarding its main aspects, preventing upscaling of the patient revolution. Objective This study aims to gain agreement among academics on 3 aspects of inclusive health research for people with ID: (1) designs and methods, (2) most important characteristics and (3) outcomes. Design A Delphi study was conducted with academics with experience in inclusive (health) research and on people with ID. The study consisted of 2 sequential questionnaire rounds (n=24; n=17), followed by in-depth interviews (n=10). Results Academics agreed on (1) a collaborative approach to be most suitable to inclusive health research, (2) characteristics regarding the accessibility and facilitation of inclusive health research, and (3) several outcomes of inclusive health research for people with ID and healthcare. Other characteristics agreed on included: atmosphere, relationship, engagement, partnership and power. It was stressed that these characteristics ensure meaningful inclusion. Interviewed academics voiced the need for a tool supporting the facilitation and evaluation of inclusive health research. There was ambiguity as to what this tool should comprise and the extent to which it was possible to capture the complex process of inclusive health research. Discussion and conclusions This study underlines the need for transparency, facilitation and evaluation of inclusive health research. The need for in-depth interviews after 2 Delphi rounds underlines its complexity and context dependence. To increase process transparency, future research should focus on gaining insight into inclusive health research in its context. A tool could be developed to facilitate and evaluate inclusive health research. This tool will be partially applicable to participatory research in general and thereby upscale the patient revolution.

Self-reported measures in health research for people with intellectual disabilities: an inclusive pilot study on suitability and reliability

BackgroundThe lack of suitable and reliable scales to measure self-reported health and health behaviour among people with intellectual disabilities (ID) is an important methodological challenge in health research. This study, which was undertaken together with co-researchers with ID, explores possibilities for self-reported health scales by adjusting, testing, and reflecting on three self-reported health scales.MethodsIn an inclusive process, the researchers and co-researchers with ID adjusted the SBQ (sedentary behaviour), SQUASH (physical activity), and SRH (self-reported health) scales, after which a test-retest study among adults with ID was performed. Test outcomes were analysed on suitability and test-retest reliability, and discussed with the co-researchers with ID to reflect on outcomes and to make further recommendations.ResultsMain adjustments made to the scales included: use easy words, short sentences, and easy answer formats. Suitability (N = 40) and test-retest reliability (N = 15) was higher for the adjusted SQUASH (SQUASH-ID), in which less precise time-based judgements are sought, than in the adjusted SBQ (SBQ-ID). Suitability and test-retest reliability were fair to moderate for the SRH-ID and CHS-ID. The main outcome from the reflection was the recommendation to use SQUASH-ID answer options, in which less precise time-based judgements were sought, in the SBQ-ID as well.ConclusionsThis study served as a pilot of an inclusive process in which people with ID collaborated in adjusting, testing, and reflecting on self-reported health scales. Although the adjusted self-reported measurements may be reliable and suitable to the target group, the adjustments needed may impair measurement precision. This study’s results contribute to informed decision making on the adaptation and use of self-reported health scales for people with ID.

A consensus statement on how to conduct inclusive health research: Consensus statement on inclusive health research

BACKGROUND The active involvement of people with intellectual disabilities in research, or inclusive research, is relatively common. However, inclusive health research is less common, even though it is expected to lead to appropriate healthcare and increased quality of life. Inclusive health research can build upon lessons learned from inclusive research. METHOD A total of 17 experts on inclusive (health) research without intellectual disabilities and 40 experts with intellectual disabilities collaborated in this consensus statement. The consensus statement was developed in three consecutive rounds: (1) an initial feedback round; (2) a roundtable discussion at the 2016 International Association for the Scientific Study of Intellectual and Developmental Disabilities World Congress; and (3) a final feedback round. RESULTS This consensus statement provides researchers with guidelines, agreed upon by experts in the field, regarding attributes, potential outcomes, reporting and publishing, and future research directions, for designing and conducting inclusive health research. CONCLUSIONS Consensus was reached on how to design and conduct inclusive health research. However, this statement should be continuously adapted to incorporate recent knowledge. The focus of this consensus statement is largely on inclusive health research, but the principles can also be applied to other areas.

Health problems of people with intellectual disabilities in Dutch out-of-hours primary care

BACKGROUND Little is known about the health needs of people with intellectual disabilities who access out-of-hours primary care services, raising concerns about accessibility and quality of care for this group. This study aims to identify commonly presented health problems of people with intellectual disabilities in this specific setting compared with the general population. METHOD Cross-sectional study with routine data at two out-of-hours cooperatives with a total of 41,166 persons aged 20-65 requesting outof-hours primary care in 2014, of which 315 persons were identified as having an intellectual disability. RESULTS Having an intellectual disability was associated with a higher probability of presenting with epilepsy (OR 45.65) and concerns about, and adverse effects of, medical treatment (OR 23.37, and 8.41, respectively). CONCLUSIONS Given the high rates of epilepsy and medication-related concerns of people with intellectual disabilities, this study suggests that these issues require special attention to improve the accessibility and quality of out-of-hours primary care.

Stakeholder expectations, roles and responsibilities in Dutch health promotion for people with intellectual disabilities

This two-phase, qualitative study aims to obtain an overview of stakeholders in the network of people with intellectual disabilities (ID) and their perceived facilitating and hindering factors, expectations, and perceived roles and responsibilities with regard to health promotion. In phase 1, four workshops were conducted to provide insight into involved stakeholders. In phase 2, 29 semi-structured interviews were conducted with stakeholders regarding their views on health promotion. Data were analysed using stakeholder matrices and a combination of domain and thematic analysis. Daily caregivers were identified as the most important and influential stakeholders. Interviewed stakeholders perceived barriers to a healthy lifestyle as relating mainly to the person with ID and, although they stated that people with ID need support to be able to live healthily, there was ambiguity about roles and responsibilities for providing this support. Daily caregivers are not properly facilitated to support a healthy lifestyle. Stakeholders expressed the need for a culture change towards a greater health promotion ethos in care for people with ID. A facilitating context is needed in which the social network supports autonomy and offers opportunities to adapt to physical, social and emotional challenges. Stakeholders see the importance of, and are willing to support, healthy behaviour. They are hindered by a lack of a shared vision and united system in which all stakeholders know their roles and responsibilities. Promotion of a healthy lifestyle should be part of every service provider employees job and propagated throughout the organization as part of its mission and vision.

Priority-setting and feasibility of health information exchange for primary care patients with intellectual disabilities: A modified Delphi study

OBJECTIVE Accurate health information exchange (HIE) is fragile in healthcare for patients with intellectual disabilities (ID), threatening the health outcomes for this patient group. In conjunction with a group of experts, we aimed to identify the principal actions and organisational factors facilitating HIE for primary care patients with ID and to assess their perceived feasibility in daily practice. METHODS We conducted a two-round modified Delphi study with Dutch GPs (n=22), support workers (n=18) and ID physicians (n=20). In an extensive set of 61 items covering actions and organisational factors, experts ranked items in order of importance and rated their feasibility. RESULTS Agreement was reached on the importance of 22 actions and eight organisational factors, of which 82% were deemed (very) feasible in daily practice. Experts stressed the importance of listed actions and factors being implemented simultaneously and remarked that further priority should be based on contextual demands. CONCLUSION AND PRACTICE IMPLICATIONS This study indicates the principal actions and organisational factors for HIE regarding primary care patients with ID. The set can be used as a practical guide to optimise inter-professional cooperation and arrange the distribution of HIE roles and responsibilities in relation to this patient group.

Does risk and urgency of requested out-of-hours general practitioners care differ for people with intellectual disabilities in residential settings compared with the general population in the Netherlands? A cross-sectional routine data-based study

Objectives To investigate whether people with intellectual disabilities (ID) in residential setting were more likely than people from the general population to request out-of-hours general practitioner (GP) care and whether these requests had a similar level of urgency. Design Cross-sectional routine data-based study. Setting Two GP cooperatives providing out-of-hours primary care in an area in the Netherlands. Population 432 582 persons living in the out-of-hours service areas, of which 1448 could be identified as having an ID. Main outcome measures GP cooperative records of all contacts in 2014 for people with and without ID were used to calculate the relative risk of requesting care and the associated level of urgency. Results Of the people with ID (448/1448), 30.9% requested out-of-hours GP care, whereas for the general population this was 18.4% (79 206/431 134), resulting in a relative risk of 1.7 (95% CI 1.6 to 1.8). We found a different distribution of urgency level for people with and without ID. Generally, requests for people with ID were rated as less urgent. Conclusion People with ID in residential setting were more likely to request out-of-hours GP care than the general population. The distribution of the urgency level of requests differed between the two groups. The high percentage of demands relating to people with ID requesting counselling and advice suggests that some out-of-hours GP care may be avoidable. However, more insight is needed into the nature of out-of-hours primary care requests of people with ID to direct structural and reasonable adjustments towards the improvement of health information exchange in and around-the-clock access to primary care for people with ID.

Improving the sensitivity of the Dutch guidelines for case finding in osteoporosis

In a previous paper1 we reported on the poor validity of the Dutch case finding method for GPs to identify patients with osteoporosis for Dual energy X-ray absorptiometry (DXA) measurement (NHG guidelines for osteoporosis2), as sensitivity was 19.5% and positive predictive value (PPV) was 18.6%.2 We suggested that a more appropriate tool is needed to apply case finding for osteoporosis. The problem, however, is that many GPs have poor knowledge of the different case finding methods that are available.3 Instead of designing a new method, one might rather evaluate alternative usage of current guidelines to achieve better results. Hence the aim of this research letter is to investigate alternative usage of the Dutch guidelines to select osteoporosis patients for DXA. As we discussed in our previous paper, the poor validity of the Dutch guidelines might result from the definition of the weighted scores. Therefore, we performed receiver operating characteristic (ROC) curves to evaluate whether ‘4’ is the best cut-off score to be used. As only 64 males were included, data analyses were performed of 345 females. Osteoporosis was diagnosed according to the World Health Organization (WHO) guidelines (T score ≤ −2.5 SD) and, in addition, according to the Dutch guidelines, using the WHO criteria in patients younger than 70 years and Z-scores in patients over 70 years (≤ −1.0 SD) to define osteoporosis. Osteopenia was not defined within this age group. We calculated sensitivity, specificity, and predictive value of the guidelines using varying cut-offs; 95% confidence intervals were calculated using binomial expansion. Statistical analyses were performed using SPSS (version 16.0) software. The ROC curve, as well as the results of sensitivity, specificity, and predictive value (Table 1), showed that the best cut-off for the current Dutch instrument is ‘1’. Using this cut-off and the WHO criteria of osteoporosis, sensitivity improved to 88%, specificity was 40%, PPV 14%, and NPV 97%. Slightly lower values were calculated if DXA outcome was based on the Dutch criteria of osteoporosis (using Z-scores in patients aged ≥70 years. Table 1 Sensitivity, specificity, positive predictive value (PPV), and negative predictive value (NPV) of the original Dutch osteoporosis guidelines in 345 women. If the optimal threshold is ‘1’, it can be concluded that the weighted scores are of no added value. Moreover, it implies that screening is always recommended above the age of 60 years. In contrast, the US guidelines have recommended screening in women over 65 years, based on cost-effectiveness analysis.4 In addition, treatment of women with risk factors other than a prior fracture is cost-effective after the age of 65 years according to the European guidance.5 Therefore, we have investigated the validity of the Dutch guidelines in women, after changing the original model: in the original guidelines, 1 risk point is given for the age 60–70 years and 2 points for the age of ≥70 years. Instead, we now gave 1 risk point for the age of ≥65 years. The original and adapted guidelines are shown in Table 2. Sensitivity, specificity, and predictive values of the adjusted guidelines for women are summarised in Table 3. Values were slightly higher if WHO criteria were used to define osteoporosis instead of the Dutch criteria. Furthermore, Table 3 shows that, when using a cut-off of 1, there is little benefit if age is increased from 60 to 65 years. However, instead of 60 (original), the use of 65 years (adapted) as a risk factor is recommended when taking into account cost-effectiveness.5 Table 2 The original and adjusted Dutch osteoporosis guidelines for women. Table 3 Sensitivity, specificity, positive predictive value (PPV), and negative predictive value (NPV) of the adjusted Dutch osteoporosis guidelines in 345 women. We showed that the clinical performance of the Dutch case finding instrument majorly improves with alternative use; sensitivity largely increases from 18% to 84%. Instead of missing five patients for each patient that is found with osteoporosis,2 only one patient is missed for each six patients that are found. This implies that the majority of patients with osteoporosis will be referred for DXA and hence are properly diagnosed. However, PPV and specificity remain low. Low PPV can be explained by the low prevalence of osteoporosis in our relatively young population. Moreover, as we discussed in our previous paper,2 an instrument with high sensitivity can be of great practical interest in primary care, even if PPV is low. So far, there is no universal policy on case finding in Europe. We suggest that the Dutch College of General Practitioners revises its policy on prevention and case finding for osteoporosis.