Knowing the entire story - a focus group study on patient experiences with chronic Lyme-associated symptoms (chronic Lyme disease).

BACKGROUND: Healthcare providers frequently struggle to provide effective care to patients with chronic Lyme-associated symptoms (chronic Lyme disease, CLD), potentially causing these patients to feel misunderstood or neglected by the healthcare system. This study is the first to use a combined medical and communication science approach, and aims to assess patients' experiences with CLD & CLD-related care, identify themes and repertories in these patients' narrations, and provide potential ways to improve communication with them. METHODS: Informed by the principles of 'clean language', we conducted focus groups with self-identified CLD patients (N = 15). We asked participants about their experiences with CLD and CLD-related healthcare. We performed thematic analyses using a bottom-up approach based in discourse analysis. We also sought to identify specific types of verbalizations (repertoires) across themes. RESULTS: Participants thematised a heterogeneous set of CLD-associated symptoms, which they frequently labelled as 'invisible' to others. Their illness significantly affected their daily lives, impacting their work, social activities, relationships with loved ones, hobbies and other means of participating in society. Negative experiences with healthcare providers were near-universal, also in patients with short-lived CLD-associated symptoms. Verbalizations were notable for frequent use of communicative modes that implicitly create common ground between participants and that give a certain validity to personal experiences (impersonal 'you' and other forms of presupposition). CONCLUSION: Central themes found in CLD patients' communication are 1. the experience of significant symptoms, 2. for which adequate relief is only rarely found from conventional medical practitioners, and 3. that are largely invisible to the outside world. Verbalizing these themes, patients use various repertoires for their shared experiences, such as a feeling of abandonment or not being heard by the medical system, feelings of loss with respect to their previous health, and the idea that they might have been better off had they been diagnosed sooner. Working with these repertoires will enable healthcare providers to establish a shared perspective with their CLD patients, thus engaging in more fruitful doctor-patient communication. We hypothesize that these findings are not unique to CLD, but may also be applicable to other conditions with an uncertain aetiology, such as Long COVID.

[A closer look at the concept of positive health]. / Het concept 'positieve gezondheid' nader bekeken.

'Positive health' is a new concept that arose in response to shortcomings in the broad WHO definition of health. It has similarities with earlier holistic health concepts. The question is what 'positive health' adds for medical practice. On the one hand, the concept rightly emphasizes the gradual and dimensional character of health and the importance of (appealing to) people's resilience. On the other hand, there are also disadvantages. The comprehensive nature of the concept can lead to medicalization of social- and life-problems, and the emphasis on adaptation and self-management can contribute to individualization of health. In practice, the concept offers starting points for health policy and can promote cooperation across borders. For doctor and patient, the question is whether the concept adds much to, for example, the biopsychosocial model. The focus on resilience is a positive innovation, but it does not remove practical obstacles to a broad view of health.

[Clinical decision-making: from diagnosis to prognosis-oriented approach]. / Klinische besluitvorming.

Traditionally, diagnosis is the basis for clinical decision-making and regarded as the guide to prognosis and treatment. Although some patients may particularly benefit such a diagnosis-oriented approach (e.g., patients with acute pathology for which effective treatment is available), this approach is not suitable or sufficient for others (e.g., patients without a diagnosis, patients with a diagnosis for which no treatment is available, and patients for whom the current treatment is insufficient). Furthermore, other factors than diagnosis or diagnosis-guided treatment are likely to influence an individual's outcome (prognosis), including biological, clinical, and social factors. The authors propose a prognosis-oriented approach as an alternative starting point for medical decision-making: not only ask yourself 'what is the explanation for my patient's complaint?', but also 'which factors contribute to the future outcome of this complaint?' and 'can I address these to benefit my patient's outcome?'.

[Chronic Lyme disease: hype or hypothesis?] / Chronische lymeziekte.

There's an on-going discussion about chronic Lyme Disease: are the persisting symptoms some patients experience due to an inadequately treated Borrelia infection or is something else going on? In 2017 the National Lyme Disease Centre (NLe) has been established in the Netherlands. Two university medical centres, the RIVM and the Lyme Organization participate in the NLe where diagnostics and treatment are offered to patients and research into Lyme disease is carried out. Ideally, collaboration between doctors, researchers and patients leads to research that addresses relevant and urgent questions. Regarding chronic Lyme disease not as a hype but a hypothesis that needs to be verified or falsified, could help both doctors and patients, assuming that they can conclude together that some notions might have seemed rational, but nonetheless have to be discarded based on the results of sound scientific research. That might open new ways to explore treatment of persisting symptoms.

Fracture prevention by screening for high fracture risk: a systematic review and meta-analysis.

This systematic review and meta-analysis showed a significant reduction of (major) osteoporotic fractures and hip fractures after screening using fracture risk assessment and bone densitometry compared with usual care. The results indicate that screening is effective for fracture risk reduction, especially hip fractures. To perform a systematic review and meta-analysis of population screening for high fracture risk on fracture prevention compared with usual care. MEDLINE and Embase were searched for studies published until June 20th 2019. Randomized studies were selected that screened for high fracture risk using at least bone densitometry, screened in a general population, provided subsequent treatment with anti-osteoporosis medication, had a usual care group as comparator, and had at least one fracture-related outcome (all fractures, (major) osteoporotic fractures, or hip fractures). The primary assessment was the hazard ratio (HR) for fracture-related outcomes. All-cause mortality was a secondary outcome. Random-effects models were used to estimate pooled HRs. We identified 1186 potentially eligible articles and included three randomized studies: the ROSE study, the SCOOP study, and the SOS with a total number of N = 42,009 participants. Respectively, 11%, 15%, and 18% of the participants in the intervention group started medication. Meta-analysis showed a statistically significant and clinically relevant reduction of osteoporotic fractures (HR = 0.95, 95% confidence interval (CI) = 0.89-1.00), major osteoporotic fractures (HR = 0.91; 95%CI = 0.84-0.98), and hip fractures (HR = 0.80; 95%CI = 0.71-0.91), but no reduction of all fractures (HR = 0.95; 95%CI = 0.89-1.02). The pooled HR for the secondary outcome all-cause mortality was 1.04 (95% CI = 0.95-1.14). Numbers needed to screen to prevent one fracture were 247 and 272 for osteoporotic fractures and hip fractures, respectively (corresponding to 113 and 124 performed bone densitometry examinations, and 25 and 28 persons being treated). This meta-analysis showed that population screening is effective to reduce osteoporotic fractures and hip fractures. Implementation of screening in older women should be considered as serious option to prevent osteoporotic fractures, especially hip fractures.

Design of the SALT Osteoporosis Study: a randomised pragmatic trial, to study a primary care screening and treatment program for the prevention of fractures in women aged 65 years or older.

BACKGROUND: Several drugs have become available for the treatment of osteoporosis. However, screening and treatment of patients with a high fracture risk is currently not recommended in the Netherlands, because the effectiveness of bone sparing drugs has not been demonstrated in the general primary care population. Here we describe the design of the SALT Osteoporosis study, which aims to examine whether the screening and treatment of older, female patients in primary care can reduce fractures, in comparison to usual care. METHODS: A randomised pragmatic trial has been designed using a stepwise approach in general care practices in the Netherlands. Women aged ≥65 years, who are not prescribed bone sparing drugs or corticosteroids are eligible for the study. First, women with at least one clinical risk factor for fractures, as determined by questionnaires, are randomly assigned to the intervention or control group. Second, women in the intervention group having a high fracture risk according to our screening program, including an adapted fracture risk assessment (FRAX) tool, combined with dual-energy x-ray absorptiometry (DXA), and instant vertebral assessment (IVA), are offered a structured treatment program. The women in the control group receive care as usual and will undergo the same screening as the intervention group at the end of the trial. The follow-up duration will be three years and the primary outcome is time to first incident fracture and the total number of fractures. DISCUSSION: The results of the current study will be very important for underpinnings of the prevention strategy of the osteoporosis guidelines. TRIAL REGISTRATION: ID NTR2430 . Registered 26 July 2010.

[Elaboration of NFU scientific agenda raises questions]. / Uitwerking van wetenschapsagenda NFU roept vragen op.

The Netherlands Federation of University Medical Centres (NFU) has published a report 'Research Agenda for Sustainable Health', in which the authors outline the Netherlands' medical scientific agenda for the coming years. Although this is a laudable initiative, we question the sustainability of this agenda, which seems to promise a world without disease thanks to the efforts of medical researchers as they delve deep into the human genome and cellular mechanisms. In our opinion, putting this agenda into practice will not address many of the current health problems, and the underlying causes of these problems, with which patients and doctors struggle daily. Moreover, this agenda might strengthen expectations of what doctors and patients can achieve, which are already too high.

[Big data, Roemer's law and avoidable hospital admissions]. / Big data, de wet van Roemer en vermijdbare opnames.

From an analysis of data from 23 European countries to determine the impact of primary care on avoidable hospital admissions for uncontrolled diabetes it appeared that, contrary to expectation, countries with strong primary care did not have a lower rate of avoidable hospital admission. It is clear that Roemer's law, 'a bed built is a bed filled,' still applies. However, the validity of this sort of analysis can be questioned, as these data are highly aggregated, and registration quality differs between countries. It is also questionable if these datasets can be considered as 'big data' as there are relatively small numbers per country. Big data analyses are useful for discerning patterns and formulating hypotheses, but not for proving causality. An unwanted side effect of this kind of analysis might be that policymakers use these not so valid results to underpin their policy to their advantage.

The association between somatization and disability in primary care patients.

BACKGROUND: Patient encounters for medically unexplained physical symptoms are common in primary health care. Somatization ('experiencing and reporting unexplained somatic symptoms') may indicate concurrent or future disability but this may also partly be caused by psychiatric disorders. The aim of this study was to examine the cross-sectional and longitudinal association between somatization and disability in primary care patients with and without anxiety or depressive disorder. METHODS: Data were obtained from 1545 primary care patients, participating in the longitudinal Netherlands Study of Depression and Anxiety (NESDA). Somatization was assessed using the somatization scale of the Four-Dimensional Symptom Questionnaire (4DSQ). Disability was determined by the WHO Disability Assessment Schedule 2.0 (WHO-DAS II). The relationships between somatization and both the total and subdomain scores of the WHO-DAS II were measured cross-sectionally and longitudinally after one year of follow-up using linear regression analysis. We examined whether anxiety or depressive disorder exerted a modifying effect on the somatization-disability association. RESULTS: Cross-sectionally and longitudinally, somatization was significantly associated with disability. Somatization accounted cross-sectionally for 41.8% of the variance in WHO-DAS disability and, longitudinally, for 31.7% of the variance in disability after one year of follow-up. The unique contribution of somatization to disability decreased to 16.7% cross-sectionally and 15.7% longitudinally, when anxiety and/or depressive disorder was added to the model. CONCLUSION: Somatization contributes to the presence of disability in primary care patients, even when the effects of baseline demographic and health characteristics and anxiety or depressive disorder are taken into account.

What can local authorities do to improve the social care-related quality of life of older adults living at home? Evidence from the Adult Social Care Survey.

Local authorities spend considerable resources on social care at home for older adults. Given the expected growth in the population of older adults and budget cuts on local government, it is important to find efficient ways of maintaining and improving the quality of life of older adults. The ageing in place literature suggests that policies in other functions of local authorities may have a significant role to play. This study aims to examine the associations between social care-related quality of life (SCRQoL) in older adults and three potential policy targets for local authorities: (i) accessibility of information and advice, (ii) design of the home and (iii) accessibility of the local area. We used cross-sectional data from the English national Adult Social Care Survey (ASCS) 2010/2011 on service users aged 65 years and older and living at home (N=29,935). To examine the association between SCRQoL, as measured by the ASCOT, and three single-item questions about accessibility of information, design of the home and accessibility of the local area, we estimate linear and quantile regression models. After adjusting for physical and mental health factors and other confounders our findings indicate that SCRQoL is significantly lower for older adults who find it more difficult to find information and advice, for those who report that their home design is inappropriate for their needs and for those who find it more difficult to get around their local area. In addition, these three variables are as strongly associated with SCRQoL as physical and mental health factors. We conclude that in seeking to find ways to maintain and improve the quality of life of social care users living at home, local authorities could look more broadly across their responsibilities. Further research is required to explore the cost-effectiveness of these options compared to standard social care services.

[Comparing case management care models for people with dementia and their caregivers: the design of the COMPAS study]. / Implementatie, effecten en kosten van casemanagement voor mensen met dementie en hun mantelzorgers: beschrijving van de COMPAS studie.

BACKGROUND: Dementia care in The Netherlands is shifting from fragmented, ad hoc care to more coordinated and personalized care. Case management contributes to this shift. The linkage model and a combination of intensive case management and joint agency care models were selected based on their emerging prominence in The Netherlands. It is unclear if these different forms of case management are more effective than usual care in improving or preserving the functioning and well-being at the patient and caregiver level and at the societal cost. OBJECTIVE: The objective of this article is to describe the design of a study comparing these two case management care models against usual care. Clinical and cost outcomes are investigated while care processes and the facilitators and barriers for implementation of these models are considered. DESIGN: Mixed methods include a prospective, observational, controlled, cohort study among persons with dementia and their primary informal caregiver in regions of The Netherlands with and without case management including a qualitative process evaluation. Community-dwelling individuals with a dementia diagnosis with an informal caregiver are included. The primary outcome measure is the Neuropsychiatric Inventory for the people with dementia and the General Health Questionnaire for their caregivers. Costs are measured from a societal perspective. Semi-structured interviews with stakeholders based on the theoretical model of adaptive implementation are planned. RESULTS: 521 pairs of persons with dementia and their primary informal caregiver were included and are followed over two years. In the linked model substantially more impeding factors for implementation were identified compared with the model. DISCUSSION: This article describes the design of an evaluation study of two case management models along with clinical and economic data from persons with dementia and caregivers. The impeding and facilitating factors differed substantially between the two models. Further results on cost-effectiveness are expected by the beginning of 2015. This is a Dutch adaptation of MacNeil Vroomen et al., Comparing Dutch case management care models for people with dementia and their caregivers: The design of the COMPAS study.

Inflammatory bowel disease: a systematic review on the value of diagnostic testing in primary care.

AIM: The clinical presentation of inflammatory bowel disease in primary care represents a diagnostic challenge as its symptoms are heterogeneous and common. To assist the primary care physician, we have summarized the available evidence on diagnostic tests in patients with abdominal symptoms. METHOD: We searched PubMed and Embase and screened references. Studies were selected if the design was a primary diagnostic study. Patients were adults attending with nonacute abdominal symptoms. Tests included clinical assessment, blood or faecal tests or abdominal ultrasonography. Quality assessment using a modified version of the QUADAS tool and data extraction was performed by two reviewers independently. Diagnostic two-by-two tables and pooled estimates of sensitivity and specificity are given. We refrained from pooling when there was considerable clinical or statistical heterogeneity. RESULTS: A total of 24 studies were included. While the diagnostic performance of the individual symptoms was highly variable (range sensitivity 0.0-0.96, specificity 0.09-1.0), the performance of symptom-based classification systems was both more consistent and better (sensitivity 0.65-1.0, specificity 0.17-0.82). Among faecal and blood tests, calprotectin was studied most frequently and showed the best results (sensitivity 0.61-1.0, specificity 0.71-1.0). Statistical pooling for ultrasonography resulted in a sensitivity of 0.73 (0.65-0.80) and a specificity of 0.95 (0.91-0.97). CONCLUSION: Although calprotectin and ultrasonography showed consistent and promising findings, none of the studies was performed in primary care. To assist primary care physicians in diagnostic decision making, we urgently need high quality studies performed in primary care.

Lactose malabsorption and intolerance: a systematic review on the diagnostic value of gastrointestinal symptoms and self-reported milk intolerance.

BACKGROUND: When lactose malabsorption gives rise to symptoms, the result is called 'lactose intolerance'. Although lactose intolerance is often bothersome for patients, once recognized it may be managed by simple dietary adjustments. However, diagnosing lactose intolerance is not straightforward, especially in primary care. AIM: To summarize available evidence on the diagnostic performance of gastrointestinal symptoms and self-reported milk (lactose) intolerance in primary care, and the relationship between lactose malabsorption and intolerance. DATA SOURCES: PubMed, EMBASE and reference screening. STUDY SELECTION: Studies were selected if the design was a primary diagnostic study; the patients were adults consulting because of non-acute abdominal symptoms; the diagnostic test included gastrointestinal symptoms and/or self-reported milk intolerance. A total of 26 primary diagnostic studies were included in the review. DATA EXTRACTION: Quality assessment and data extraction were performed by two reviewers independently. They adhered to the most recent guidelines for conducting a diagnostic review as described in the Cochrane Diagnostic Reviewers' Handbook. RESULTS: The diagnostic performance of diarrhea, abdominal pain, bloating, flatulence and self-reported milk intolerance was highly variable. A non-Caucasian ethnic origin was associated with the presence of lactose malabsorption. Both lactose malabsorbers and lactose absorbers reported symptoms during the lactose hydrogen breath test. CONCLUSION: Our review shows that high-quality studies on the diagnosis of lactose malabsorption and intolerance in primary care are urgently needed. An important prerequisite would be to clearly define the concept of lactose intolerance, as well as how it should be assessed.

Does patient feedback improve the consultation skills of general practice trainees? A controlled trial.

CONTEXT: This study aimed to assess if an additional patient feedback training programme leads to better consultation skills in general practice trainees (GPTs) than regular communication skills training, and whether process measurements (intensity of participation in the programme) predict the effect of the intervention. METHODS: We carried out a controlled trial in which two sub-cohorts of GPTs were allocated to an intervention group (n = 23) or a control group (n = 30), respectively. In 2006, allocated first-year GPTs in the VU University Medical Centre attended a patient feedback training programme in addition to the regular communication skills training. The control group attended only regular communication skills training. Trainees were assessed by simulated patients who visited the practices and videotaped the consultations at baseline and after 3 months. The videotapes were randomly assigned to eight trained staff members. The MAAS-Global Instrument (range 0-6) was used to assess (a change in) trainee consultation skills. RESULTS: were analysed using a multi-level, linear mixed-model analysis. Results Data on 50 GPTs were available for the follow-up analysis. Both intervention group and control group GPTs improved their consultation skills: mean MAAS-Global scores for all participants were 3.29 (standard deviation [SD] 0.75) at baseline and 3.54 (SD 0.66) at follow-up (P = 0.047). The improvement in MAAS-Global scores in the intervention group did not differ significantly from the improvement in the control group. The analysis showed a trend for intensity of participation in the patient feedback programme to predict greater improvement in MAAS-Global scores. DISCUSSION: Although the baseline scores were already in the high range, consultation skills in both groups improved significantly. This is reassuring for current teaching methods. The patient feedback programme did not improve consultation skills more than regular communication skills training. However, a subgroup of GPTs who participated intensively in the programme did improve their consultation skills further in comparison with the less motivated subgroup.

Systematic review: accuracy of symptom-based criteria for diagnosis of irritable bowel syndrome in primary care.

BACKGROUND: Despite the trend towards making a positive diagnosis of irritable bowel syndrome (IBS), many health care providers approach IBS as a diagnosis of exclusion. AIM: To summarize available evidence on the diagnostic performance of symptom-based IBS criteria in excluding organic diseases, and of individual signs and symptoms in diagnosing IBS and to additionally assess the influence of sources of heterogeneity on diagnostic performance. METHODS: We searched PubMed and EMBASE and screened references. Studies were selected if the design was a primary diagnostic study; the patients were adults consulting because of non-acute abdominal symptoms; the diagnostic test included an externally validated set of IBS criteria, signs, or symptoms. Data extraction and quality assessment were performed by two reviewers independently. The review adhered to the most recent guidelines as described in the Cochrane Diagnostic Reviewers' Handbook. RESULTS: A total of 25 primary diagnostic studies were included in the review. The performance of symptom-based criteria in the exclusion of organic disease was highly variable. Patients fulfilling IBS criteria had, however, a lower risk of organic diseases than those not fulfilling the criteria. CONCLUSIONS: With none of the criteria showing sufficiently homogeneous and favourable results, organic disease cannot be accurately excluded by symptom-based IBS criteria alone. However, the low pre-test probability of organic disease especially among patients who meet symptom-based criteria in primary care argues against exhaustive diagnostic evaluation. We advise validation of the new Rome III criteria in primary care populations.

[Dizziness, tiredness and the risk of a stroke]. / Duizeligheid, moeheid en de kans op een beroerte.

In a recent study, Bos et al. (JAMA 2007) showed that patients with nonfocal transient neurological attacks (TNA) have a higher risk of major vascular disease, comparable to patients with focal TNAs. This may prompt GPs to take a more active approach when dealing with patients experiencing short-lasting attacks of dizziness, paraesthesia and weakness. However, the category of nonfocal TNAs in the abovementioned study was very broad, and subgroup analysis for specific symptoms was not possible. Moreover, a third of nonfocal TNAs consisted of loss of consciousness or decreased consciousness, which might be responsible for the heightened risk of cerebrovascular accident. Also, a quarter of patients with nonfocal TNA had not presented their symptoms to a physician and reported the symptoms during a follow-up meeting, leaving room for recall bias. Since symptoms like dizziness are very frequent among elderly patients and nonfocal TNAs are difficult to recognize, both physicians and education campaigns should be careful not to arouse anxiety without good reason.

Hand and wrist problems in general practice--patient characteristics and factors related to symptom severity.

OBJECTIVES: Hand and wrist problems are common, but little is known about characteristics of patients consulting the general practitioner (GP) for these problems. The objectives are: (i) to describe wrist and hand problems presented to the GP in terms of severity of symptoms, and their impact on physical, emotional and social functioning; (ii) to describe patient and disease characteristics across different diagnostic categories; and (iii) to study factors related to the severity of hand or wrist problems. METHODS: Patients consulting their GP with hand or wrist problems were sent a questionnaire containing questions on socio-demographic variables, characteristics of the complaint, physical activity and psychosocial factors. The GP recorded information on symptoms, signs and medical diagnosis. We studied the cross-sectional association between a variety of factors and severity of hand or wrist problems, using the Symptom Severity Scale as the outcome measure. RESULTS: Mean age of the 267 participants was 49.3 yrs and 74% were female. The three most frequently recorded diagnoses were osteoarthritits (17%), tenosynovitis (16%) and nerve entrapment (12%). The characteristics of patients varied slightly across diagnostic categories. Patients who did not have paid work, had longer duration of symptoms, diagnosis of entrapment, higher pain intensity, higher body mass index and higher scores on worrying reported significantly higher scores on severity of hand or wrist problems (P-value <0.10). CONCLUSION: Primary care patients with hand or wrist problems report pain and reduced function. Impact on other aspects of perceived health is limited. Severity seems to be associated with socio-demographic, physical and psychosocial factors, more than with medical diagnosis.

[Summary of The Dutch College of General Practitioners' 'Irritable bowel syndrome' standard]. / Samenvatting van de standaard 'Prikkelbaredarmsyndroom' van het Nederlands Huisartsen Genootschap.

The diagnosis of 'irritable bowel syndrome' can usually already be established after history-taking and a limited physical examination, particularly if the symptoms have persisted for many years in the same form. Additional investigations are indicated in the case of diarrhoea which lasts longer than 2 weeks, especially if the patient is also severely unwell or has rectal bleeding; further investigations are also required if older patients experience the symptoms for the first time, if there is blood loss upon defecation, if unintentional weight loss occurs or if a mass is felt on the left side of the abdomen. Further investigations consist of a rectal examination, measurement of the sedimentation, haemoglobin concentration and leukocyte count, sigmoidoscopy and an X-ray of the colon. Treatment should aim to reduce unnecessary concern and avoidance behaviour, and to positively influence additional stress-inducing factors, nutrition and physical activity. Medication is not indicated except for laxatives if constipation plays an important role and if advice about nutrition and physical activity provide insufficient relief.