Development and applicability of a tool for identification of people with intellectual disabilities in need of palliative care (PALLI).

BACKGROUND: Timely identifying people with intellectual disabilities in need of palliative care is important. Therefore, we developed PALLI: a screening tool for deteriorating health, indicative of a limited life expectancy. Here, we aimed to describe development of PALLI and to explore its applicability. METHOD: We used a five-stage mixed-methods procedure to develop PALLI based on knowledge from practice. For exploring applicability, professionals caring for people with intellectual disabilities completed PALLI for 185 people with intellectual disabilities and provided information on applicability after 5-6 months. RESULTS: The final version of PALLI included 39 questions relevant for people with intellectual disabilities. Applicability was adequate: Most professionals found PALLI relevant and reported no ambiguous questions. Added value of PALLI was reflecting on and becoming aware of the process of decline in health. CONCLUSIONS: PALLI shows promising applicability and has potential as a tool for timely identifying people with intellectual disabilities who may benefit from palliative care.

Medically unexplained symptoms: the person, the symptoms and the dialogue.

Background: Many general practitioners (GPs) find the care for patients with medically unexplained symptoms (MUS) challenging. The patients themselves are often not satisfied with the care they receive. Objectives: The aim of this study is to explore what patients with MUS expect from their GP by looking at relevant communication elements in consultations as identified by patients. Methods: We video-recorded everyday consultations with GPs and asked the GPs immediately after the consultation whether MUS were presented. The patients in these MUS consultations were asked to reflect on the consultation during a semi-structured interview while watching a recording of their own MUS consultation. The interviews were analysed qualitatively according to the principles of constant comparative analysis. Results: Of the 393 video-recorded consultations, 43 concerned MUS. All MUS patients said that they wanted to be taken seriously. According to the patients, their feeling of being taken seriously is enhanced when the GP: (i) pays empathic attention to them as individuals, meaning that the GP knows their personal circumstances and has an open and empathic approach, (ii) ensures a good conversation by treating the patient as an equal partner and (iii) is attentive to their symptoms by exploring these symptoms in depth and by acting on them. Conclusion: Like chronic patients, patients with MUS value a personalised approach in which GPs pay attention to patients' personal circumstances, to proper somatic management of their symptoms and to a proper conversation in which they are treated as equal partners. Use of these basic consultation skills may greatly improve care of MUS patients.

Web-based consultation between general practitioners and nephrologists: a cluster randomized controlled trial.

Background: Consultation of a nephrologist is important in aligning care for patients with chronic kidney disease (CKD) at the primary-secondary care interface. However, current consultation methods come with practical difficulties that can lead to postponed consultation or patient referral instead. Objective: This study aimed to investigate whether a web-based consultation platform, telenephrology, led to a lower referral rate of indicated patients. Furthermore, we assessed consultation rate, quality of care, costs and general practitioner (GPs') experiences with telenephrology. Methods: Cluster randomized controlled trial with 47 general practices in the Netherlands was randomized to access to telenephrology or to enhanced usual care. A total of 3004 CKD patients aged 18 years or older who were under primary care were included (intervention group n = 1277, control group n = 1727) and 2693 completed the trial. All practices participated in a CKD management course and were given an overview of their CKD patients. Results: The referral rates amounted to 2.3% (n = 29) in the intervention group and 3.0% (n = 52) in the control group, which was a non-significant difference, OR 0.61; 95% CI 0.31 to 1.23. The intervention group's consultation rate was 6.3% (n = 81) against 5.0% (n = 87) (OR 2.00; 95% CI 0.75-5.33). We found no difference in quality of care or costs. The majority of GPs had a positive opinion about telenephrology. Conclusion: The data in our study do not allow for conclusions on the effect of telenephrology on the rate of patient referrals and provider-to-provider consultations, compared to conventional methods. It was positively evaluated by GPs and was non-inferior in terms of quality of care and costs.

Brief multimodal psychosomatic therapy in patients with medically unexplained symptoms: feasibility and treatment effects.

BACKGROUND: Patients repeatedly presenting with medically unexplained symptoms (MUS) to their GPs, suffer from their symptoms. Experts in the field suggest a multicomponent approach for these patients. Brief multimodal psychosomatic therapy (BMPT) is such an intervention. OBJECTIVES: To test the systematic identification of eligible patients, acceptability of BMPT and potential treatment effects of BMPT. METHODS: The participants in this randomized pilot trial, patients consulting their GPs more than once with MUS, were randomized to intervention [usual care (UC) and additional BMPT] or control condition (UC alone).We monitored the number of patients identified and recruited, trial recruitment and retention. Potential treatment effects were measured with perceived symptom severity [Visual Analogue Scale (VAS)]; patients' self-rated symptoms of distress, depression, anxiety and somatization [Four-Dimensional Symptom Questionnaire (4DSQ)]; symptoms of hyperventilation [Nijmegen Hyperventilation List (NHL)]; physical and mental health status and quality of life [Short-Form Health Survey-36 items (SF-36)]; and level of functioning (measure of general functioning). Follow-up was 1 year. RESULTS: A total of 42 patients could be included in the trial. Four patients withdrew after randomization and two patients were lost to follow-up, resulting in 36 patients (86%). During the 12-month follow-up after BMPT, there was an improvement in perceived symptom severity [adjusted mean difference -2.0, 95% confidence interval (CI) -3.6 to -0.3], in somatization (adjusted mean difference -4.4, 95% CI -7.5 to -1.4) and in symptoms of hyperventilation (adjusted mean difference -5.7, 95% CI -10.5 to -0.8). CONCLUSIONS: This randomized pilot study shows that a larger trial studying the effectiveness of BMPT in patients with MUS in primary care is feasible and useful.

CASINO: surgical or nonsurgical treatment for cervical radiculopathy, a randomised controlled trial.

BACKGROUND: Cervical radicular syndrome (CRS) due to a herniated disc can be safely treated by surgical decompression of the spinal root. In the vast majority of cases this relieves pain in the arm and restores function. However, conservative treatment also has a high chance on relieving symptoms. The objective of the present study is to evaluate the (cost-) effectiveness of surgery versus prolonged conservative care during one year of follow-up, and to evaluate the timing of surgery. Predisposing factors in favour of one of the two treatments will be evaluated. METHODS/DESIGN: Patients with disabling radicular arm pain, suffering for at least 2 months, and an MRI-proven herniated cervical disc will be randomised to receive either surgery or prolonged conservative care with surgery if needed. The surgical intervention will be an anterior discectomy or a posterior foraminotomy that is carried out according to usual care. Surgery will take place within 2-4 weeks after randomisation. Conservative care starts immediately after randomisation. The primary outcome measure is the VAS for pain or tingling sensations in the arm one year after randomisation. In addition, timing of surgery will be studied by correlating the primary outcome to the duration of symptoms. Secondary outcome measures encompass quality of life, costs and perceived recovery. Predefined prognostic factors will be evaluated. The total follow-up period will cover two years. A sample size of 400 patients is needed. Statistical analysis will be performed using a linear mixed model which will be based on the 'intention to treat' principle. In addition, a new CRS questionnaire for patients will be developed, the Leiden Cervical Radicular Syndrome Functioning (LCRSF) scale. DISCUSSION: The outcome will contribute to better decision making for the treatment of cervical radicular syndrome. TRIAL REGISTRATION: NTR3504.

A proactive approach to migraine in primary care: a pragmatic randomized controlled trial.

BACKGROUND: Migraine is a common, disabling headache disorder that leads to lost quality of life and productivity. We investigated whether a proactive approach to patients with migraine, including an educational intervention for general practitioners, led to a decrease in headache and associated costs. METHODS: We conducted a pragmatic randomized controlled trial. Participants were randomized to one of two groups: practices receiving the intervention and control practices. Participants were prescribed two or more doses of triptan per month. General practitioners in the intervention group received training on treating migraine and invited participating patients for a consultation and evaluation of the therapy they were receiving. Physicians in the control group continued with usual care. Our primary outcome was patients' scores on the Headache Impact Test (HIT-6) at six months. We considered a reduction in score of 2.3 points to be clinically relevant. We used the Kessler Psychological Distress Scale (K10) questionnaire to determine if such distress was a possible effect modifier. We also examined the interventions' cost-effectiveness. RESULTS: We enrolled 490 patients in the trial (233 to the intervention group and 257 to the control group). Of the 233 patients in the intervention group, 192 (82.4%) attended the consultation to evaluate the treatment of their migraines. Of these patients, 43 (22.3%) started prophylaxis. The difference in change in score on the HIT-6 between the intervention and control groups was 0.81 (p = 0.07, calculated from modelling using generalized estimating equations). For patients with low levels of psychological distress (baseline score on the K10 ≤ 20) this change was -1.51 (p = 0.008), compared with a change of 0.16 (p = 0.494) for patients with greater psychological distress. For patients who were not using prophylaxis at baseline and had two or more migraines per month, the mean HIT-6 score improved by 1.37 points compared with controls (p = 0.04). We did not find the intervention to be cost-effective. INTERPRETATION: An educational intervention for general practitioners and a proactive approach to patients with migraine did not result in a clinically relevant improvement of symptoms. Psychological distress was an important confounder of success. (Current Controlled Trials registration no. ISRCTN72421511.).

Pre-conception counselling in primary care: prevalence of risk factors among couples contemplating pregnancy.

The outcome of pregnancy can be influenced by several risk factors. Women who are informed about these risks during pre-conception counselling (PCC) have an opportunity to take preventive measures in time. Several studies have shown that high-risk populations have a high prevalence of such risk factors. However, prevalence in the general population, which is assumed to be low risk, is largely unknown. We therefore provided a systematic programme of PCC for the general population and studied the prevalence of risk factors using the risk-assessment questionnaire which was part of the PCC. None of the couples reported no risk factors at all and only 2% of the couples reported risk factors for which written information was considered to be sufficient. Therefore, 98% of all couples reported one or more risk factors for which at least personal counselling by a general practitioner (GP) was indicated. Many of these factors were related to an unhealthy lifestyle. Women with a low level of education reported more risk factors than women with a high level of education. There is a great need for PCC as shown by the fact that almost all couples reported risk factors for which personal counselling was indicated. Pre-conception counselling may reduce the risk of adverse pregnancy outcome by enabling couples to avoid these risks. PCC can be provided by GPs, who have the necessary medical knowledge and background information to counsel couples who wish to have a baby.

Longitudinal outcomes of different asthma phenotypes in primary care, an observational study.

While asthma presentation is heterogeneous, current asthma management guidelines in primary care are quite homogeneous. In this study we aim to cluster patients together into different phenotypes, that may aid the general practitioner in individualised asthma management. We analysed data from the ACCURATE trial, containing 611 adult asthmatics, 18-50 year-old, treated in primary care, with one year follow-up. Variables obtained at baseline (n = 14), were assessed by cluster analysis. Subsequently, established phenotypes were assessed separately on important asthma outcomes after one year follow-up: asthma control (Asthma Control Questionnaire (ACQ)), quality of life (Asthma Quality of Life Questionnaire (AQLQ)), exacerbation-rate and medication-usage. Five distinct phenotypes were identified. The first phenotype was predominantly defined by their early onset atopic form of asthma. The second phenotype mainly consisted of female patients with a late onset asthma. The third phenotype were patients with high reversibility rates after bronchodilator usage. The fourth phenotype were smokers and the final phenotype were frequent exacerbators. The exacerbators phenotype had the worst outcomes for asthma control and quality of life and experienced the highest exacerbation-rate, despite using the most medication. The early onset phenotype patients were relatively well controlled and their medication dosage was low. ASTHMA: INDIVIDUALIZING TREATMENT BY PHENOTYPE: Asthma patients should be characterised according to their individual asthma type to ensure more targeted treatment. Even though asthma manifests itself in a wide variety of forms with differing degrees of severity, treatment of the disease often takes a broad, one-size-fits-all approach. To determine if asthma can indeed be split into distinct phenotypes, Rishi Khusial at the Leiden University Medical Center and co-workers across the Netherlands analysed data from 611 adult asthmatics treated in primary care, and followed them up after one year. The team identified five phenotypes in the primary care cohort, including one group with early onset asthma, another whose asthma responded well to bronchodilators, and a group classed as frequent exacerbators. Further analysis of long-term asthma outcomes showed clear differences between phenotypes, particularly in terms of asthma control and quality of life.