[Pharmacological management of attention-deficit/hyperactivity disorders (ADHD) by generalists and specialists in Germany: a secondary data analysis]. / Pharmakotherapie von Aufmerksamkeitsdefizit-Hyperaktivitätsstörungen (ADHS) in der hausärztlichen und fachärztlichen Versorgung: eine Sekundärdatenanalyse.

BACKGROUND: Attention-deficit/hyperactivity disorder (ADHD) is one of the most common mental health disorders among children, and it is rapidly surging among adults as well. The aim of this study was to investigate the role of community neurologists and psychiatrists as well as general practitioners and paediatricians in prescribing ADHD medications in Germany and whether their role has changed over the 10-year period from 2008 and 2018. METHODS: In this secondary analysis of anonymized prescribing data, we calculated the absolute and relative frequencies of ADHD prescriptions by neurologists and psychiatrists, summarized as specialists, and family physicians and paediatricians, summarized as generalists, and how it has changed during the years 2008 to 2018. RESULTS: A total of 620 practices delivered data on 77,504 patients diagnosed with ADHD, 38% (29,396/77,504) of them had received a prescription for ADHD medicine at least once in the study period. Over time, we observed a shift from generalists to specialists. While 59% of patients received their prescription from a generalist and 41% from a specialist in 2008, there was reverse in the ratio in 2018: only 37% received their medication from a generalist and the vast majority (63%) from a specialist. This trend was particularly evident among adults: 58% of them received their ADHD medication from a specialist in 2008, but 80% in 2018. The proportion of children and adolescents who received their prescriptions from a specialist rose from 38% to 51% over the same period. CONCLUSION: There is a shift in drug prescription away from generalists to specialists, without any discussion of advantages or disadvantages so far. However, this would be desirable, not least because specialists alone may not have sufficient resources to care for all ADHD patients.

Role of private prescriptions in the long-term use of benzodiazepines and Z-drugs: A patient-related follow-up study.

PURPOSE: To analyse (1) how often patients insured under the statutory health insurance (SHI) scheme received repeated prescriptions for benzodiazepines or Z-drugs as private prescriptions and (2) how often doctors switched from SHI prescriptions to private prescriptions and vice versa when issuing repeat prescriptions. METHODS: On basis of anonymized prescriptions from 874 ambulatory practices in Germany, we analysed the percentage of private prescriptions for Z-drugs, benzodiazepines/anxiolytics, and benzodiazepines/hypnotics and sedatives over 6 years (2014 to 2020). RESULTS: Of 2 200 446 prescriptions for a benzodiazepine or Z-drug, 38% were private prescriptions. In case of Z-drugs, the rate of private prescriptions was 44.1% for single prescriptions and 48.9% for refills. The difference was smaller for anxiolytics (23.3% vs. 26.0%) and, for benzodiazepine/hypnotics and sedatives, the proportion of private prescriptions for refills was even lower than for single prescriptions. In case of Z-drugs, the proportion of private prescriptions was, on average, 42.7% for the first prescription of a series of repeat prescriptions and 49.6% for the tenth prescription. The increase was smaller for anxiolytics and negligible for benzodiazepine/hypnotics and sedatives. Doctors stayed with their initial decision in more than three quarters of repeat prescriptions, be it a SHI or private prescription. CONCLUSION: While we observed a large number of private prescriptions for benzodiazepines and Z-drugs, the proportion was only slightly higher for refills than for single prescriptions. Doctors do not seem to issue private prescriptions as a strategy to mask especially long-term use of these substances.

[Private Prescriptions In East And West Germany - A Secondary Data Analysis]. / Privatverordnungen von Benzodiazepinen und Z-Substanzen in Ost- und Westdeutschland ­ eine Sekundärdatenanalyse.

BACKGROUND AND OBJECTIVE: Benzodiazepines and Z-drugs are prescribed to a considerable extent as private prescription also for persons insured by a statutory health insurance (SHI), with formerly large differences between East and West Germany. The aim of the present study was to investigate whether these differences still exist today. METHOD: This secondary data analysis used anonymized prescription data from general practitioners (GPs), community neurologists, and psychiatrists. SHI-insured patients with at least one prescription for a benzodiazepine or Z-substance between 2014 and 2020 were included. Differences between East and West Germany in the proportion of private prescriptions were the central outcome. Multiple regression analyses were performed to test whether the factors region (eastern vs. western Germany) and specialist group (GPs vs. neurologists/psychiatrists) were statistically significant predictors of the proportion of private prescriptions - taking into account the age and gender composition of patients in a practice. RESULTS: From 867 practices, 2,200,446 prescriptions for Z-substances, benzodiazepine anxiolytics, and benzodiazepine hypnotics/sedatives were evaluated. More than 38% of these prescriptions were issued as private prescriptions: 53.6% in eastern Germany and 34.8% in western Germany. For Z-substances, the proportion of private prescriptions was particularly high (70.7% in eastern and 43.0% in western Germany). GPs issued private prescriptions far more frequently than neurologists and psychiatrists. The proportion of private prescriptions increased during the study period, comparatively strongly in the western states (from 33% to 39%) and slightly in the eastern states (from 53% to 54%). In the multivariate model, practice area (east/west) and specialist group were similarly strong predictors of the extent of private prescriptions, especially for Z-substances. CONCLUSION: Contrary to a general alignment in life expectancy, morbidity risks, and health behaviour in East and West Germany, there is, despite convergence, still a significant difference in the proportion of private prescriptions for benzodiazepines and especially for Z-substances between the two regions. The groups of physicians who mainly prescribe these substances, namely neurologists and psychiatrists, on the one hand, and GPs, on the other, also differ considerably in the proportion of their private prescriptions for these substances.

[Experiences when handling sleep medicines: Group discussions with nursing students about benzodiazepines and Z-drugs]. / Erfahrungen im Umgang mit Schlafmitteln: Gruppendiskussionen mit Auszubildenden in der Pflege über Benzodiazepine und Z-Substanzen.

Experiences when handling sleep medicines: Group discussions with nursing students about benzodiazepines and Z-drugs Abstract. Background and aims: Helping patients who have difficulties falling or staying asleep is one of the challenges of hospital care. The goal of this study was to explore how nursing students experience patients' sleeping problems as well as the usage of sleep-inducing drugs, especially benzodiazepines and Z-drugs in the hospital setting. Methods: In four focus group discussions, we collected data exploring the experiences of nursing students with regards to sleeping problems and sleep-inducing drugs. The transcripts of the discussion were analysed, using documentary method. Results were finally summarized to main categories, using qualitative content analysis. Results: Students experience a generous distribution of sleep-inducing drugs, which are considered as the best possible solution for sleeping problems - in spite of weak evidence. Non-drug alternatives are seldom taught, are often unavailable on the ward and their use is rarely trained. Pharmacological knowledge is too shallow and / or the transfer of theoretical knowledge to practical action is unsuccessful. Sleep and sleeping problems, e. g. in contrast to pain management, are not a topic of priority in the hospital setting. Conclusions: More knowledge and greater sensibility about sleeping problems is needed. For example, nurses' training should incorporate knowledge about medications and non-drug alternatives and how to apply them in critical situations. Doctors and nurses should offer nursing students good role models in these situations.

The 10-year trend in drug prescriptions for attention-deficit/hyperactivity disorder (ADHD) in Germany.

PURPOSE: The aim of this study was to analyse whether the global trend in drug prescriptions for attention-deficit hyperactivity disorders (ADHD), as observed during the last years and often criticized as medicalization, have remained stable or shifted. METHODS: This observational study was based on a secondary analysis of data from a large German database including patients with an ADHD diagnosis between 2008 and 2018. Prescription data comprised all important ADHD drugs. RESULTS: A total of 620 practices delivered data from a total of 77,504 patients (31% of them females) with a diagnosis of AHDH. Nearly 38% (29,396/77,504) of all patients received, at least, one prescription for an ADHS medicine between 2008 and 2018. The number of patients receiving a drug steadily increased annually until 2012 and then slowly fell, but unevenly distributed across the age groups. While the number of younger patients ( ≤ 16 years) receiving a prescription fell by 24% and the defined daily doses (DDDs) remained stable, the number of patients between 17 and 24 years receiving a prescription increased by 113% and the DDDs by 150%. Respectively, the number of older adults (≥ 25 years) with a prescription increased by 355% and the DDDs by 515%. Nearly one-third of older adults received an ADHD medicine only once. CONCLUSION: The ever-increasing prescription of ADHD medicines stopped some years ago for children. ADHS and its pharmacological management are increasingly observed among older adolescents and adults, with a different pattern of drug persistence compared with children.

Management of urinary tract infections: what do doctors recommend and patients do? An observational study in German primary care.

BACKGROUND: Uncomplicated urinary tract infections (UTIs) in women are usually managed in primary care with antibiotics. However, many women seem to prefer to handle UTI symptoms with nonsteroidal anti-inflammatory drugs (NSAIDs) and other remedies. The aim of this study was to compare UTI management as recommended by physicians with the patients' management at home. METHODS: This prospective cohort study in German primary care is based on clinical data from local practices and patient questionnaires. Participating women completed a baseline data sheet in the practice; their urine sample was tested by a dipstick in the practice and cultured by a laboratory. The women reported treatment and symptom-related impairment on an eight-item symptom questionnaire daily for 7 days. Using growth curve models, we analysed the influence of time on the total severity score to examine how symptoms changed across days. We then examined whether symptom severity and symptom course differed between patients who took antibiotics or NSAIDs. RESULTS: A total of 120 women (mean age of 43.3 ± 16.6 years) were enrolled. The urine dipstick was positive for leucocytes in 92%, erythrocytes in 87%, and nitrites in 23%. Physicians prescribed antibiotics for 102 (87%) women and recommended NSAIDs in 14 cases. According to the women's reports, only 60% (72/120) took antibiotics, while the remainder took NSAIDs and other remedies. Symptoms declined from day 0 to day 6, irrespective of whether women decided to take an antibiotic, NSAIDs, none or both, as confirmed by a significant curvilinear time effect (B = 0.06, SE = 0.005, p < .001). The symptom course, however, was moderated by taking antibiotics so that the change in symptom severity was somewhat more pronounced in women taking antibiotics (B = 0.06) than in the remainder (B = 0.04). CONCLUSION: A substantial proportion of women did not follow their physicians' treatment recommendations, and many used NSAIDs. All women had a good chance of recovery irrespective of whether they decided to take antibiotics. A sensitive listening to patient preferences in the consultation may encourage physicians to recommend and prescribe symptomatic treatment with NSAID more often than antibiotic medicines.

Why Z-drugs are used even if doctors and nurses feel unable to judge their benefits and risks-a hospital survey.

BACKGROUND: Many patients receive Z-drugs for hospital-associated sleep problems, in spite of well-known risks. The aim of this study was to learn more about the attractiveness of Z-drugs, seen from the doctors' and nurses' perspective. METHODS: Using a standardized questionnaire, doctors (63/116) and nurses (73/243) in a German general hospital were surveyed about the risks and benefits of Z-drugs, compared with benzodiazepines. RESULT: "Reduced time to get to sleep" was perceived by doctors (51%) and nurses (53%) to be a strong benefit of Z-drugs; "confusion" and "falls" were perceived by ca. 10% of doctors and ca. 15% of nurses to be a frequent problem. Compared with benzodiazepines, respondents more often answered "unable to judge" for Z-drugs; e.g. for doctors, 18% (benzodiazepines) vs. 45% (Z-drugs) were unable to judge "improved daytime functioning" and 12% (benzodiazepines) vs. 37% (Z-drugs) were unable to judge "falls." CONCLUSION: Z-drugs seem to be attractive because experiential knowledge overemphasizes their benefits and fails to take risks such as drug-related falls and confusion into account. Difficulties to judge a drug's risk-benefit ratio do not prevent doctors and nurses from using them. Interventions for reducing Z-drug usage should incorporate local quality assurance data about relevant patient risks.

Medication and medical diagnosis as risk factors for falls in older hospitalized patients.

OBJECTIVE: To examine the impact of medication and medical conditions on the fall risk in older hospitalized patients. DESIGN: Matched case-control study. SETTING: Large regional hospital in a mid-sized German city. SUBJECTS: Four hundred eighty-one inpatients aged ≥ 65 years who fell during hospitalization ("cases") and a control group of 481 controls, matched for age, gender, and hospital department. METHODS: Diagnosis, medication, vital parameters, and injuries were compared between cases and controls. Univariate and multivariable odds ratios (ORs) and their corresponding 95% confidence intervals (CIs) were calculated. MAIN RESULTS: Several drugs were significantly associated with falls in multivariate analyses: long-acting benzodiazepines (adjusted OR = 3.49; 95%-CI = 1.16-10.52), serotonin-noradrenalin reuptake inhibitors (SNRI) (2.57; 1.23-5.12), Z-drugs (2.29; 1.38-3.59), low-potency neuroleptics (1.87; 1.08-3.23), ACE inhibitors/sartans (1.42; 1.07-1.89). Digoxin (0.32; 0.11-0.99) and aldosterone receptor antagonists (0.54; 0.33-0.88) were negatively associated with falls. No significant association in multivariate analyses was found for short- and intermediate-acting benzodiazepines, mirtazapine, and opioids. Hyponatremia (1.52; 1.15-2.03) and leukocytosis (1.39; 1.05-1.87) in blood examination on admission showed significant association with falls. As secondary diagnoses, Parkinson syndrome (2.38; 1.27-4.46) and delirium (3.74; 2.26-6.21) were strongly associated with falls. The use of more than one psychoactive drug was a separate risk factor for falls (p < 0.0001). CONCLUSION: Several drugs including SNRI, neuroleptics, and Z-drugs showed a significant association with inpatient falls. The frequently prescribed tetracyclic antidepressant mirtazapine did not appear to increase the risk of falls. Psychoactive polypharmacy should be avoided.

The interplay of context factors in hypnotic and sedative prescription in primary and secondary care-a qualitative study.

PURPOSE: Non-medical or contextual factors strongly influence physicians' prescribing behavior and may explain why drugs, such as benzodiazepines and Z-drugs, are still frequently prescribed in spite of well-known adverse effects. This study aimed to explore which contextual factors influence the prescription of hypnotics and sedatives and to compare their role in primary and secondary care. METHODS: Understanding medical practices as games with specific rules and strategies and performed in a largely habitual, not fully conscious manner, we asked a maximum variation sample of 12 hospital doctors and 12 general practitioners (GPs) about their use of hypnotics and sedatives. The interviews were analyzed by qualitative content analysis. RESULTS: Hospital doctors' and GPs' use of hypnotics and sedatives was influenced by a variety of contextual factors, such as the demand of different patient groups, aims of management, time resources, or the role of nurses and peers. Negotiating patient demands, complying with administrative regulations, and finding acceptable solutions for patients were the main challenges, which characterized the game of drug use in primary care. Maintaining the workflow in the hospital and finding a way to satisfy both nurses and patients were the main challenges in secondary care. CONCLUSIONS: Even if doctors try to act rationally, they cannot escape the interplay of contextual factors such as handling patient needs, complying with administrative regulations, and managing time resources. Doctors should balance these factors as if they were challenges in a complex game and reflect upon their own practices.

Patient-reported factors associated with the desire to continue taking sleep-inducing drugs after hospital discharge: A survey of older adults.

PURPOSE: To find out whether any prior experiences with sleep-inducing drugs before hospitalization and positive experiences with these drugs during hospitalization influence a patient's wish to continue taking sleep-inducing drugs after hospitalization. METHODS: We surveyed older hospital patients about use of sleep-inducing drugs before, during, and after hospitalization and compared these answers with their hospital chart using the kappa statistic. The association between the wish to continue these drugs after discharge and the perceived benefits, experience of side effects, and prior experience with sleep-inducing drugs was determined by multivariable logistic regression. RESULTS: Agreement between patient responses and the hospital file was high (κ = 0.7). Seventeen percent (83/483) of the participants reported prior experience before their hospital stay; 45% received a sleep-inducing drug during hospitalization; 17% wished to continue taking them after discharge. Of the 400 patients who had no prior experience with sleep-inducing drugs, 147 (37%) became first-time users in the hospital, and 27% (40/147) of these wished to continue this medication after discharged. Strong predictors for this wish were the reduction of sleep onset problems (adjusted odds ratio, 6.26; 95% confidence interval, 2.38-16.44) and any prior experience with sleep-inducing drugs (4.08; 1.97-8.48). CONCLUSIONS: Many older patients become first-time users of sleep-inducing drugs in the hospital. Especially the experience of sleep onset improvements influences the wish to continue sleep-inducing drug use after discharge. Avoiding first-time use should become a goal of hospital policy and be taken into account when weighing the benefits and risks of sleep-inducing drugs.

Ethical challenges in primary care: a focus group study with general practitioners, nurses and informal caregivers.

BACKGROUND: General practitioners (GPs), nurses and informal caregivers are often jointly involved in healthcare situations in which ethical issues play an important role. OBJECTIVES: To describe ethical problems from the perspective of these three groups and to investigate whether there is a common experience of ethical issues in primary care. METHODS: We conducted six focus groups with general practitioners, nurses and informal caregivers in Germany. We asked the participants to describe at least one experience of ethical problem in detail and documented the findings by an illustration software that visualized and structured the discussion. We used thematic analysis to identify ethical problems and to develop categories of ethical issues. RESULTS: Problems reported barely overlapped. GPs had to do mainly with uncertainty about the scope and limits of their responsibility for patients. Nurses were concerned about bureaucratic and other barriers to professional care and about dual loyalty if they had to consider the conflicting interests of patients and family members. They often felt powerless and unable to act according to their professional standards. Informal caregivers reported problems that resulted from role strain and being both a family member and a caregiver. GPs, nurses and informal caregivers sometimes perceived the other parties as a source of ethical problems. CONCLUSIONS: All parties may benefit from ethics support services, a rarity in German primary care so far. Furthermore, nurses' self-confidence towards GPs, demanding patients and family members has to be strengthened. Informal caregivers, the most vulnerable group, need more attendance and tailored support.

Variability and dimensionality of students' and supervisors' mini-CEX scores in undergraduate medical clerkships - a multilevel factor analysis.

BACKGROUND: The mini clinical evaluation exercise (mini-CEX)-a tool used to assess student-patient encounters-is increasingly being applied as a learning device to foster clinical competencies. Although the importance of eliciting self-assessment for learning is widely acknowledged, little is known about the validity of self-assessed mini-CEX scores. The aims of this study were (1) to explore the variability of medical students' self-assessed mini-CEX scores, and to compare them with the scores obtained from their clinical supervisors, and (2) to ascertain whether learners' self-assessed mini-CEX scores represent a global dimension of clinical competence or discrete clinical skills. METHODS: In year 4, medical students conducted one to three mini-CEX per clerkship in gynaecology, internal medicine, paediatrics, psychiatry and surgery. Students and clinical supervisors rated the students' performance on a 10-point scale (1 = great need for improvement; 10 = little need for improvement) in the six domains history taking, physical examination, counselling, clinical judgement, organisation/efficiency and professionalism as well as in overall performance. Correlations between students' self-ratings and ratings from clinical supervisors were calculated (Pearson's correlation coefficient) based on averaged scores per domain and overall. To investigate the dimensionality of the mini-CEX domain scores, we performed factor analyses using linear mixed models that accounted for the multilevel structure of the data. RESULTS: A total of 1773 mini-CEX from 164 students were analysed. Mean scores for the six domains ranged from 7.5 to 8.3 (student ratings) and from 8.8 to 9.3 (supervisor ratings). Correlations between the ratings of students and supervisors for the different domains varied between r = 0.29 and 0.51 (all p < 0.0001). Mini-CEX domain scores revealed a single-factor solution for both students' and supervisors' ratings, with high loadings of all six domains between 0.58 and 0.83 (students) and 0.58 and 0.84 (supervisors). CONCLUSIONS: These findings put a question mark on the validity of mini-CEX domain scores for formative purposes, as neither the scores obtained from students nor those obtained from clinical supervisors unravelled specific strengths and weaknesses of individual students' clinical competence.

[Obstacles in Secondary Analysis of Routine Data From Primary Care]. / Hindernisse bei der sekundären Nutzung hausärztlicher Routinedaten.

BACKGROUND: Routinely recorded data from everyday ambulatory medical care are urgently needed for health services and systems research, but this faces major limitations in Germany. In 2018, European General Data Protection Regulation (GDPR) and new German Federal Data Protection Act (FDPA) become effective. Via simulated real-life scenarios it may be possible to find out if access to and utilization of routine data for research becomes easier or faces additional obstacles. METHODS: General practitioners, information scientists, data trustees and privacy protection experts create concepts, processes and standards for lawful handling of routinely recorded data for secondary research and study their feasibility in 2 scenarios (anonymous and pseudonymous data utilization). From the point of view of technical assessment and privacy protection, technical and organizational obstacles are presented as well as the legal framework. RESULTS: Outdated software interface, insufficient maintenance by software vendors, burdens associated with organization and cost as well as poor IT standards place obstacles to systematic and longitudinal use of healthcare routine data. Future pan-European law for privacy protection will allow research utilization of ambulatory data in principle. However, there are persisting conflicts between individual (fundamental right of privacy protection) and public interests (research for quality and efficiency of public spending; European market's free exchange of goods and services). This becomes evident especially when using routine data via pseudonymization. DISCUSSION: Neither insurmountable hurdles by privacy protecting law nor a threat from Big Data are currently the major obstacles to secondary utilization of routine data but real-life problems at the technology and operational level. GDPR and FDPA that have become into effect in May 2018 have improved European legal unity and transparency of patients' interests. Tension between privacy protection of data on an identified or identifiable person and scientific utilization and exchange of such data in public interest necessitates additional legal clarification. One possible solution, an advanced and ready-to-use software interface, awaits implementation.

[Non-pharmacological treatment of hospital patients with sleeping problems - the nurse perspective]. / Nicht-medikamentöse Maßnahmen bei Ein- und Durchschlafproblemen von älteren Patienten im Krankenhaus ­ Qualitative Interviews mit Pflegenden.

Non-pharmacological treatment of hospital patients with sleeping problems - the nurse perspective Abstract. BACKGROUND: Elderly patients suffer from sleep disturbances during hospitalization. These patients often receive hypnotics and sedatives; despite of the known risks and although non-pharmacological treatments are available. AIM: The study investigates the experiences of nurses when using non-pharmacological treatments for elderly patients with sleeping problems. METHODS: Semi-structured interviews with 13 nurses from a general hospital were analyzed according to Mayring's qualitative content analysis. RESULTS: Nurses used a variety of non-pharmacological treatments for elderly inpatients with sleeping problems: (1) structural measures (regulation of temperature and light), (2) organizational measures (more time for conversation during the nightshift), (3) nursing measures (asking about night-time routines) and (4) household remedies. From the nurses' perspective, the more intensive contact required when applying non-pharmacological treatments can lead to higher patient satisfaction and a lower bell frequency during the night shift. Barriers result from limited time and personnel, a lack of standards and individual patient needs. CONCLUSION: Nurses know several kinds of non-pharmacological treatments to help elderly inpatients sleep better. A lack of resources as well as a lack of professional consensus about the treatment of temporary sleeping disturbances can be an obstacle to their use. A professional climate should restrict the use of drugs for sleeping problems as far as possible.

Searching for factors that may reduce the use of benzodiazepines in hospitals - a survey of hospital doctors and nurses
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A chart review at a mid-sized German general hospital found a high usage of benzodiazepines among older patients. Therefore, all doctors and nurses of this hospital were surveyed about the benefits and risks of benzodiazepines that they considered to be the strongest and their own overall assessment of the risk-benefit ratio for their patients Response rate was 54% (63/116) for doctors and 30% (73/243) for nurses. "Reduced fear or agitation" was perceived by many doctors (71%) and nurses (49%) to be a strong benefit of benzodiazepines. With regards to the overall risk-benefit ratio, doctors who indicated that "falls" and/or "craving" often occur in combination with benzodiazepines were more likely to estimate that the risks of benzodiazepines outweigh the benefits. For nurses, "confusion" strongly influenced their overall assessment of the risk-benefit ratio. The results of this study will be incorporated into interventions for reducing benzodiazepine prescriptions.
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[Patient experiences and patient centeredness : The website project DIPEx Germany]. / Subjektive Krankheitserfahrungen und Patientenorientierung : Das Website-Projekt DIPEx Germany.

Patient centeredness is a central concept in the treatment and rehabilitation of persons with chronic illness in Germany. There are various concepts of and approaches to patient centeredness, most of them developed from the perspective of health care research and the institutions. In terms of participation requirements, there has been a lack of understanding of the patient's perspective and experiences so far. In this article, the authors assume that the collection and analysis of patient experiences can improve patient participation and provide access to the experience of living and coping with an illness, including the patient's interactions with the health care system, their participation, and their preferences for participation. Potential uses for and the limits and risks of utilizing patient experiences are discussed, using the example of the website project Krankheitserfahrungen.de (DIPEx Germany). The project collects patient experiences in the form of narrative interviews. In the course of sharing their stories, the speakers become experts on their own lives and describe where and how they feel engaged in their health care and how they wish to become further engaged, thereby experiencing participation in terms of the International Classification of Functioning. The experience of rehabilitation is viewed in a comprehensive manner for those affected. It is not limited to experiences in specific institutions, but rather, the patient experience includes the context and processes, and describes how patients can find their way back to their lives after the interruption of an illness.

Does an increase in visits to general practice indicate a malignancy?

BACKGROUND: An increase in a patient's visits to doctors usually raises concerns and may be a 'red flag' for a patient's deterioration of health. The aim of this study was to analyze whether an increase of patient-physician contacts is a first sign of a malignancy in a patient's near future. METHODS: This is a retrospective case-control study. From 153 German general practices' electronic patient records (EPR), cases with at least one new malignancy diagnosis and no-malignancy controls were matched for gender and age. We calculated (1) the number of contacts in the first quarter up to the sixth quarter before a malignancy diagnosis was made and (2) the inter-contact interval (ICI), i.e. the time lag between two consecutive patient-physician contacts measured in days. Differences between cases and controls were investigated in several analyses of variance, with group and time as main factors. RESULTS: A total of 3,310 cases and 3,310 controls could be included. The number of contacts for cases in the six quarters before a malignancy diagnosis increased from 4.8 contacts (SD 4.3) to 5.5 contacts (SD 4.8). The number of contacts for controls increased only marginally from 4.3 contacts (SD 3.6) to 4.5 (SD 4.2). The factor 'group' (cases vs. controls) was highly significant in the analyses of variance, also 'time' and the interaction 'group * time'. The effect size, however, was very small (R(2) being less than 0.02), which is the equivalent for about one additional contact per quarter in cases directly before a newly made malignancy diagnosis. CONCLUSION: An increase in contact frequency is a call for GPs to become more attentive towards these patients. It may raise the suspicion of an impending serious disease but the increase is not so dramatic and unique that it can be interpreted a reliable sign of a malignant diagnosis.

"And then you start to loose it because you think about Nutella": The significance of food for people with inflammatory bowel disease - a qualitative study.

BACKGROUND: Many patients with inflammatory bowel disease strongly believe that food or certain food products heavily influence the symptoms or even trigger acute flare-ups. Unfortunately, there is no generalizable information for these patients, and therefore no effective diet has been identified to date. METHODS: The narrative interviews we used for this study provide the basis for the German website www.krankheitserfahrungen.de . Maximum-variation sampling was used to include a broad range of experiences and a variety of different factors that might influence people's experiences. The sample included men and women of different age groups and social and ethnic backgrounds from across Germany. The interviews were analyzed using grounded theory. RESULTS: Four interrelated categories emerged: managing uncertainty, eating: between craving and aversion, being different and professional help as a further source of uncertainty. The most important issue for our responders was the handling of uncertainty and to find a way between desire for, and aversion against, eating. Many participants described difficulties during formal social occasions such as weddings, birthdays, or when going out to a restaurant. CONCLUSIONS: Many of the experiences the participants reported in their daily struggle with food and their illness, such as cravings for and abstaining from certain foods, were rather unusual and often stressful. Because they decided not to go out in public any longer, some of the interviewees experienced even more social isolation than they did before. Health professionals need to become more involved and not only advice about food and eating, but also help their patients find strategies for avoiding social isolation.

Scientific Versus Experiential Evidence: Discourse Analysis of the Chronic Cerebrospinal Venous Insufficiency Debate in a Multiple Sclerosis Forum.

BACKGROUND: The vascular hypothesis of multiple sclerosis (MS), called chronic cerebrospinal venous insufficiency (CCSVI), and its treatment (known as liberation therapy) was immediately rejected by experts but enthusiastically gripped by patients who shared their experiences with other patients worldwide by use of social media, such as patient online forums. Contradictions between scientific information and lay experiences may be a source of distress for MS patients, but we do not know how patients perceive and deal with these contradictions. OBJECTIVE: We aimed to understand whether scientific and experiential knowledge were experienced as contradictory in MS patient online forums and, if so, how these contradictions were resolved and how patients tried to reconcile the CCSVI debate with their own illness history and experience. METHODS: By using critical discourse analysis, we studied CCSVI-related posts in the patient online forum of the German MS Society in a chronological order from the first post mentioning CCSVI to the time point when saturation was reached. For that time period, a total of 117 CCSVI-related threads containing 1907 posts were identified. We analyzed the interaction and communication practices of and between individuals, looked for the relation between concrete subtopics to identify more abstract discourse strands, and tried to reveal discourse positions explaining how users took part in the CCSVI discussion. RESULTS: There was an emotionally charged debate about CCSVI which could be generalized to 2 discourse strands: (1) the "downfall of the professional knowledge providers" and (2) the "rise of the nonprofessional treasure trove of experience." The discourse strands indicated that the discussion moved away from the question whether scientific or experiential knowledge had more evidentiary value. Rather, the question whom to trust (ie, scientists, fellow sufferers, or no one at all) was of fundamental significance. Four discourse positions could be identified by arranging them into the dimensions "trust in evidence-based knowledge," "trust in experience-based knowledge," and "subjectivity" (ie, the emotional character of contributions manifested by the use of popular rhetoric that seemed to mask a deep personal involvement). CONCLUSIONS: By critical discourse analysis of the CCSVI discussion in a patient online forum, we reconstruct a lay discourse about the evidentiary value of knowledge. We detected evidence criteria in this lay discourse that are different from those in the expert discourse. But we should be cautious to interpret this dissociation as a sign of an intellectual incapability to understand scientific evidence or a naïve trust in experiential knowledge. Instead, it might be an indication of cognitive dissonance reduction to protect oneself against contradictory information.

The influence of students' prior clinical skills and context characteristics on mini-CEX scores in clerkships--a multilevel analysis.

BACKGROUND: In contrast to objective structured clinical examinations (OSCEs), mini-clinical evaluation exercises (mini-CEXs) take place at the clinical workplace. As both mini-CEXs and OSCEs assess clinical skills, but within different contexts, this study aims at analyzing to which degree students' mini-CEX scores can be predicted by their recent OSCE scores and/or context characteristics. METHODS: Medical students participated in an end of Year 3 OSCE and in 11 mini-CEXs during 5 different clerkships of Year 4. The students' mean scores of 9 clinical skills OSCE stations and mean 'overall' and 'domain' mini-CEX scores, averaged over all mini-CEXs of each student were computed. Linear regression analyses including random effects were used to predict mini-CEX scores by OSCE performance and characteristics of clinics, trainers, students and assessments. RESULTS: A total of 512 trainers in 45 clinics provided 1783 mini-CEX ratings for 165 students; OSCE results were available for 144 students (87%). Most influential for the prediction of 'overall' mini-CEX scores was the trainers' clinical position with a regression coefficient of 0.55 (95%-CI: 0.26-0.84; p < .001) for residents compared to heads of department. Highly complex tasks and assessments taking place in large clinics significantly enhanced 'overall' mini-CEX scores, too. In contrast, high OSCE performance did not significantly increase 'overall' mini-CEX scores. CONCLUSION: In our study, Mini-CEX scores depended rather on context characteristics than on students' clinical skills as demonstrated in an OSCE. Ways are discussed which focus on either to enhance the scores' validity or to use narrative comments only.