Demographic characteristics and quality of life of patients with unexplained complaints: a descriptive study in general practice

OBJECTIVE: About 13% of GPs' consultations involve unexplained complaints (UCs). These complaints can progress to chronic conditions like medically unexplained symptoms, chronic functional symptoms or somatoform disorders. Little is known about the demographic characteristics and quality of life of patients with early stage UCs. Our study objective was to describe these characteristics. Additionally we compared them with other patient groups to serve as a frame of reference. METHODS: Descriptive study in general practices. Patients with early stage UCs who had not had elaborate diagnostic investigations were included. Demographic characteristics were compared to a Dutch general practice population. Quality of life scores were measured with the RAND-36 and compared to another Dutch general practice population and to depressed patients. RESULTS: Data of 466 patients were available for analysis. Mean age was 44 years and 74% were females, mostly higher educated. Of the patients, 63% presented with unexplained fatigue. On average, quality of life was poor (mean RAND-36 domain scores 37-73), also in comparison with other groups. CONCLUSION: General practice patients presenting with UCs have a remarkably poor quality of life. Future research should explore how early identification of patients at risk of developing chronicity can take place. Awareness of potential poor quality of life may influence GPs' medical decision makin

Arduous implementation: Does the Normalisation Process Model explain why it's so difficult to embed decision support technologies for patients in routine clinical practice

Background: decision support technologies (DSTs, also known as decision aids) help patients and professionals take part in collaborative decision-making processes. Trials have shown favorable impacts on patient knowledge, satisfaction, decisional conflict and confidence. However, they have not become routinely embedded in health care settings. Few studies have approached this issue using a theoretical framework. We explained problems of implementing DSTs using the Normalization Process Model, a conceptual model that focuses attention on how complex interventions become routinely embedded in practice.Methods: the Normalization Process Model was used as the basis of conceptual analysis of the outcomes of previous primary research and reviews. Using a virtual working environment we applied the model and its main concepts to examine: the 'workability' of DSTs in professional-patient interactions; how DSTs affect knowledge relations between their users; how DSTs impact on users' skills and performance; and the impact of DSTs on the allocation of organizational resources.Results: conceptual analysis using the Normalization Process Model provided insight on implementation problems for DSTs in routine settings. Current research focuses mainly on the interactional workability of these technologies, but factors related to divisions of labor and health care, and the organizational contexts in which DSTs are used, are poorly described and understood.Conclusion: the model successfully provided a framework for helping to identify factors that promote and inhibit the implementation of DSTs in healthcare and gave us insights into factors influencing the introduction of new technologies into contexts where negotiations are characterized by asymmetries of power and knowledge. Future research and development on the deployment of DSTs needs to take a more holistic approach and give emphasis to the structural conditions and social norms in which these technologies are enacte

How do people respond to self-test results? A cross-sectional survey

<p>Abstract</p> <p>Background</p> <p>Self-tests, tests on medical conditions that can be performed by consumers without consulting a doctor first, are frequently used. Nevertheless, there are concerns about the safety of self-testing, as it may delay diagnosis and appropriate treatment in the case of inappropriate use of the test, or false-negative results. It is unclear whether self-tests stimulate appropriate follow-up behaviour. Our aim was to examine the frequency of self-test use, consumers' response to self-test results in terms of their confidence in the result, reassurance by the test result, and follow-up behaviour.</p> <p>Methods</p> <p>A two step cross-sectional survey was designed. A random sample of 6700 Internet users in an existing Internet panel received an online questionnaire on the use of self-tests. Self-tests were defined as tests on body materials, initiated by consumers with the aim to diagnose a disease or risk factor. A second questionnaire on consumers' response to self-test results was sent to the respondents that were identified as a self-tester in the first questionnaire (n = 703).</p> <p>Results</p> <p>18.1% (799/4416) of the respondents had ever performed a self-test, the most frequently used tests being those for diabetes (5.3%), kidney disease (4.9%), cholesterol (4.5%), urinary tract infection (1.9%) and HIV/AIDS and Chlamydia (both 1.6%). A total of 78.1% of the testers with a normal test result and 81.4% of those with an abnormal result reported confidence in this result. Almost all (95.6%) of the testers with a normal result felt reassured. After a normal result, 78.1% did not take any further action and 5.8% consulted a doctor. The corresponding figures after an abnormal test result were 9.3% and 72.2%, respectively.</p> <p>Conclusions</p> <p>Respondents who had performed a self-test seemed to base their follow-up behaviour on the result of the test. They had confidence in the test result, and were often reassured by a normal result. After an abnormal result, most self-testers sought medical care. Because consumers seem to trust the self-test results, further research should focus on the development of consumer information addressing indications for performing a self-test, the validity of self-tests and appropriate interpretation of and management after a test.</p

Risk communication in a patient decision aid for radiotherapy in breast cancer:How to deal with uncertainty?

Background and aim: Patient decision aids for oncological treatment options, provide information on the effect on recurrence rates and/or survival benefit, and on side-effects and/or burden of different treatment options. However, often uncertainty exists around the probability estimates for recurrence/survival and side-effects which is too relevant to be ignored. Evidence is lacking on the best way to communicate these uncertainties. The aim of this study is to develop a method to incorporate uncertainties in a patient decision aid for breast cancer patients to support their decision on radiotherapy. Methods: Firstly, qualitative interviews were held with patients and health care professionals. Secondly, in the development phase, thinking aloud sessions were organized with four patients and 12 health care professionals, individual and group-wise. Results: Consensus was reached on a pictograph illustrating the whole range of uncertainty for local recurrence risks, in combination with textual explanation that a more exact personalized risk would be given by their own physician. The pictograph consisted of 100 female icons in a 10 x 10 array. Icons with a stepwise gradient color indicated the uncertainty margin. The prevalence and severity of possible sideeffects were explained using verbal labels. Conclusions: We developed a novel way of visualizing uncertainties in recurrence rates in a patient decision aid. The effect of this way of communicating risk uncertainty is currently being tested in the BRASA study (NCT03375801)

The relationship of peritubular capillary density with glomerular volume and kidney function in living kidney donors

Background: Peritubular capillary rarefaction plays an important role in the progression of chronic kidney disease. Little is known about the relation between peritubular capillary density, glomerular volume and filtration rate in the healthy kidney. Methods: In this single-center study, we included 69 living kidney donors who donated between 2005 and 2008 and had representative renal biopsies available. In all donors, glomerular filtration rate was measured using 125I-Iothalamate before donation and at five years after donation. Before donation, the increase in glomerular filtration rate after dopamine stimulation was measured. Glomerular volume and peritubular capillary density were determined in biopsies taken at the time of transplantation. Pearson’s correlation coefficient and linear regression were used to assess relations between parameters.Results: Mean donor age was 52 ± 11 years and mean measured glomerular filtration rate was 119 ± 22 mL/min before donation and 82 ± 15 mL/min at five years after donation. While peritubular capillary density (measured by either number of peritubular capillaries/50,000 μm2 or number of peritubular capillaries/tubule) was not associated with measured glomerular filtration rate before or after donation, number of peritubular capillaries/tubule was associated with the increase in measured glomerular filtration rate after dopamine stimulation (St.β = 0.33, p = 0.004), and correlated positively with glomerular volume (R = 0.24, p = 0.047). Glomerular volume was associated with unstimulated measured glomerular filtration rate before donation (St.β = 0.31, p = 0.01) and at five years (St.β = 0.30, p = 0.01) after donation, independent of age.Conclusions: In summary, peritubular capillary density was not related to unstimulated kidney function before or after kidney donation, in contrast to glomerular volume. However, number of peritubular capillaries/tubule correlated with the increase in glomerular filtration rate after dopamine stimulation in healthy kidneys, and with glomerular volume. These findings suggest that peritubular capillary density and glomerular volume differentially affect kidney function in healthy living kidney donors. Graphical abstract: [Figure not available: see fulltext.]</p

Improving patient adherence to lifestyle advice (IMPALA): a cluster-randomised controlled trial on the implementation of a nurse-led intervention for cardiovascular risk management in primary care (protocol)

Background Many patients at high risk of cardiovascular diseases are managed and monitored in general practice. Recommendations for cardiovascular risk management, including lifestyle change, are clearly described in the Dutch national guideline. Although lifestyle interventions, such as advice on diet, physical exercise, smoking and alcohol, have moderate, but potentially relevant effects in these patients, adherence to lifestyle advice in general practice is not optimal. The IMPALA study intends to improve adherence to lifestyle advice by involving patients in decision making on cardiovascular prevention by nurse-led clinics. The aim of this paper is to describe the design and methods of a study to evaluate an intervention aimed at involving patients in cardiovascular risk management. Methods A cluster-randomised controlled trial in 20 general practices, 10 practices in the intervention arm and 10 in the control arm, starting on October 2005. A total of 720 patients without existing cardiovascular diseases but eligible for cardiovascular risk assessment will be recruited. In both arms, the general practitioners and nurses will be trained to apply the national guideline for cardiovascular risk management. Nurses in the intervention arm will receive an extended training in risk assessment, risk communication, the use of a decision aid and adapted motivational interviewing. This communication technique will be used to support the shared decision-making process about risk reduction. The intervention comprises 2 consultations and 1 follow-up telephone call. The nurses in the control arm will give usual care after the risk estimation, according to the national guideline. Primary outcome measures are self-reported adherence to lifestyle advice and drug treatment. Secondary outcome measures are the patients' perception of risk and their motivation to change their behaviour. The measurements will take place at baseline and after 12 and 52 weeks. Clinical endpoints will not be measured, but the absolute 10-year risk of cardiovascular events will be estimated for each patient from medical records at baseline and after 1 year. Discussion The combined use of risk communication, a decision aid and motivational interviewing to enhance patient involvement in decision making is an innovative aspect of the intervention. Trial registration Current Controlled Trials ISRCTN5155672

Management of patients with persistent medically unexplained symptoms: a descriptive study

Background: In 2013 the Dutch guideline for management of medically unexplained symptoms (MUS) was published. The aim of this study is to assess medical care for patients with persistent MUS as recorded in their electronic medical records, to investigate if this is in line with the national guideline for persistent MUS and whether there are changes in care over time. Methods: We conducted an observational study of adult primary care patients with MUS. Routinely recorded health care data were extracted from electronic medical records of patients participating in an ongoing randomised controlled trial in 30 general practices in the Netherlands. Data on general practitioners’ (GPs’) management strategies during MUS consultations were collected in a 5-year period for each patient prior. Management strategies were categorised according to the options offered in the Dutch guideline. Changes in management over time were analysed. Results: Data were collected from 1035 MUS consultations (77 patients). Beside history-taking, the most frequently used diagnostic strategies were physical examination (24.5%) and additional investigations by the GP (11.1%). Frequently used therapeutic strategies were prescribing medication (24.6%) and providing explanations (11.2%). As MUS symptoms persisted, GPs adjusted medication, discussed progress and scheduled follow-up appointments more frequently. The least frequently used strategies were exploration of all complaint dimensions (i.e. somatic, cognitive, emotional, behavioural and social) (3.5%) and referral to a psychologist (0.5%) or psychiatrist (0.1%). Conclusions: Management of Dutch GPs is partly in line with the Dutch guideline. Medication was possibly prescribed more frequently than recommended, whereas exploration of all complaint dimensions, shared problem definition and referral to mental health care were used less

Does a joint development and dissemination of multidisciplinary guidelines improve prescribing behaviour: a pre/post study with concurrent control group and a randomised trial

BACKGROUND: It is difficult to keep control over prescribing behaviour in general practices. The purpose of this study was to assess the effects of a dissemination strategy of multidisciplinary guidelines on the volume of drug prescribing. METHODS: The study included two designs, a quasi-experimental pre/post study with concurrent control group and a random sample of GPs within the intervention group. The intervention area with 53 GPs was compared with a control group of 54 randomly selected GPs in the south and centre of the Netherlands. Additionally, a randomisation was executed in the intervention group to create two arms with 27 GPs who were more intensively involved in the development of the guideline and 26 GPs in the control group. A multidisciplinary committee developed prescription guidelines. Subsequently these guidelines were disseminated to all GPs in the intervention region. Additional effects were studied in the subgroup trial in which GPs were invited to be more intensively involved in the guideline development procedure. The guidelines contained 14 recommendations on antibiotics, asthma/COPD drugs and cholesterol drugs The main outcome measures were prescription data of a three-year period (one year before and 2 years after guideline dissemination) and proportion of change according to recommendations. RESULTS: Significant short-term improvements were seen for one recommendation: mupirocin. Long-term changes were found for cholesterol drug prescriptions. No additional changes were seen for the randomised controlled study in the subgroup. GPs did not take up the invitation for involvement. CONCLUSION: Disseminating multidisciplinary guidelines that were developed within a region, has no clear effect on prescribing behaviour even though GPs and specialists were involved more intensively in their development. Apparently, more effort is needed to bring about change

A Gain-of-Function Variant in Dopamine D2 Receptor and Progressive Chorea and Dystonia Phenotype

Background We describe a 4-generation Dutch pedigree with a unique dominantly inherited clinical phenotype of a combined progressive chorea and cervical dystonia carrying a novel heterozygous dopamine D2 receptor (DRD2) variant. Objectives The objective of this study was to identify the genetic cause of the disease and to further investigate the functional consequences of the genetic variant. Methods After detailed clinical and neurological examination, whole-exome sequencing was performed. Because a novel variant in the DRD2 gene was found as the likely causative gene defect in our pedigree, we sequenced the DRD2 gene in a cohort of 121 Huntington-like cases with unknown genetic cause (Germany). Moreover, functional characterization of the DRD2 variant included arrestin recruitment, G protein activation, and G protein-mediated inhibition of adenylyl cyclase determined in a cell model, and G protein-regulated inward-rectifying potassium channels measured in midbrain slices of mice. Result We identified a novel heterozygous variant c.634A > T, p.Ile212Phe in exon 5 of DRD2 that cosegregated with the clinical phenotype. Screening of the German cohort did not reveal additional putative disease-causing variants. We demonstrated that the D2(S/L)-(IF)-F-212 receptor exhibited increased agonist potency and constitutive activation of G proteins in human embryonic kidney 239 cells as well as significantly reduced arrestin3 recruitment. We further showed that the D2(S)-(IF)-F-212 receptor exhibited aberrant receptor function in mouse midbrain slices. Conclusions Our results support an association between the novel p.Ile212Phe variant in DRD2, its modified D2 receptor activity, and the hyperkinetic movement disorder reported in the 4-generation pedigree. (c) 2020 The Authors. Movement Disorders published by Wiley Periodicals LLC on behalf of International Parkinson and Movement Disorder Society