Transitions in Parkinson's disease in primary care: Protocol of a longitudinal mixed methods study

Introduction: Parkinson's disease affects many aspects of the lives of patients and their relatives. Patients must adapt continuously to disabilities that necessitate changes in (medical) support, such as domestic adjustments, involvement of (non) professional caregivers or admission to hospital. Such changes mark a transition: a transfer of a patient between levels or locations of care. Transitions are likely to be multifold and complex, given that Parkinson's disease care extends across all echelons of healthcare. Patients and relatives are vulnerable during a transition, which imposes risks for their safety and quality of life. Guidance by the general practitioner, who knows the preferences of the patient, can help to overcome challenges associated with a transition. However, patient-centred primary care requires insight into the transitions patients with Parkinson's disease encounter. We aim to examine these transitions and the way patients, relatives and general practitioners experience them and cope with them. Moreover, we will study the patients' expectations of their general practitioner during a transition and the general practitioners' views on their role. Methods and analysis: A longitudinal mixed methods study will be conducted, using qualitative research methods combined with quantitative data as a validated questionnaire on quality of life. Patients will be asked to make a video diary every 2 weeks for a period of 1 year. Once they encounter a transition, patients and their general practitioners will be interviewed to identify causes and consequences of the transition. The verbatim transcripts of the videos and interviews will be analysed according to the principles of constant comparative analysis. Ethics and dissemination: Ethical approval was not needed according to Dutch legislation. Informed consent of patients, relatives and general practitioners will be obtained. We will disseminate the results in peer-reviewed journals, at research conferences and on the website of the Dutch Parkinson's Disease Association

Improving the Reporting of Primary Care Research: An International Survey of Researchers

PURPOSE: To assess opportunities to improve reporting of primary care (PC) research to better meet the needs of its varied users. METHODS: International, interprofessional online survey of PC researchers and users, 2018 to 2019. Respondents used Likert scales to rate frequency of difficulties in interpreting, synthesizing, and applying PC research reports. Free-text short answers were categorized by template analysis to record experiences, concerns, and suggestions. Areas of need were checked across existing reporting guidelines. RESULTS: Survey yielded 255 respondents across 24 nations, including 138 women (54.1%), 169 physicians (60%), 32 scientists (11%), 20 educators (7%), and 18 public health professionals (6%). Overall, 37.4% indicated difficulties using PC research reports "50% or more of the time." The most common problems were synthesizing findings (58%) and assessing generalizability (42%). Difficulty was reported by 49% for qualitative, 46% for mixed methods, and 38% for observational research. Most users wanted richer reporting of theoretical foundation (53.7%); teams, roles, and organization of care (53.4%); and patient involvement in the research process (52.7%). Few reported difficulties with ethics or disclosure of funding or conflicts. Free-text answers described special challenges in reporting PC research: context of clinical care and setting; practical details of interventions; patient-clinician and team relationships; and generalizability, applicability and impact in the great variety of PC settings. Cross-check showed that few current reporting guidelines focus on these needs. CONCLUSIONS: Opportunities exist to improve the reporting of PC research to make it more useful for its many users, suggesting a role for a PC research reporting guideline

The COVID-19 pandemic in the Netherlands: Impact on primary care

The COVID-19 pandemic started its impact on the health system in The Netherlands at the end of February 2020. In Dutch health care, family physicians (FPs) play a central role. FPs had to decide which COVID-19 (suspect) patients could be managed at home, should be seen by a medical specialist, or admitted to a hospital. The authors present the first empirical data of the impact of COVID-19 on daily practice, studying the changes in presented health problems and demand for primary care for March 2020 with March 2019 as a reference. The data illustrate the large impact of COVID-19 on Dutch family practice from the onset of the epidemic. Substantial changes in practice organization had to be pursued, and the demand for primary care changed rapidly as well. The authors stress the importance of securing care for all health problems in primary care’s preparations for a major epidemic, to avoid the collateral damage of health systems’ single-minded focus on the epidemic.https://deepblue.lib.umich.edu/bitstream/2027.42/154735/1/Schers Deep Blue article file.pd

The diagnostic pathway of Parkinson's disease: A cross-sectional survey study of factors influencing patient dissatisfaction

Background: The diagnostic pathway of Parkinson’s disease (PD) is often complicated. Experiences during this pathway can affect patients’ satisfaction and their confidence and trust in healthcare providers. Although healthcare providers cannot influence the impact of the diagnosis, they can influence how patients experience the pathway. This study, therefore, aims to provide insight into PD patients’ dissatisfaction with the diagnostic pathway and to describe the factors that influence it. Methods: We carried out a cross-sectional survey study among 902 patient members of the Dutch Parkinson’s Disease Association, who were each asked to write an essay about their diagnostic pathway. A coding format was developed to examine the content of these essays. Inter-observer agreement on coding patient dissatisfaction was calculated using Cohen’s kappa. The χ2 test and a multivariable logistic regression analysis were performed to assess the relation between dissatisfaction and sex, level of education, duration of the pathway, communication with the general practitioner (GP) and the neurologist, the number of healthcare providers involved, whether or not a second opinion had taken place (including the person who initiated it) and diagnostic delay (taking into consideration who caused the delay according to the patient). A subgroup analysis was performed to gain insight into sex-related differences. Results: Of all patients, 16.4% explicitly described they were dissatisfied with the diagnostic pathway, whereas 4.8% were very satisfied. The inter-observer agreement on coding dissatisfaction was κ = 0.82. The chance of dissatisfaction increased with a lower level of education, the involvement of more than one additional healthcare provider, a second opinion initiated by the patient and delay caused by a healthcare provider. When only the GP and the neurologist were involved, women were more likely to be dissatisfied than men. Conclusions: PD patients’ dissatisfaction with the diagnostic pathway is related to a lower level of education, a second opinion initiated by the patient and experienced diagnostic delay. GPs can positively influence patients’ experiences if they are aware of these risk factors for dissatisfaction and pay extra attention to communication and shared decision making. This will contribute to a trusting therapeutic relationship that is indispensable with progression of the diseaseThis study was supported by funds of the Dutch Parkinson’s Disease Association (Funding number 2012-V15) and the Health Insurers Innovation Foundation (Funding number 2687)

A comparison of an interferon-gamma release assay and tuberculin skin test in refractory inflammatory disease patients screened for latent tuberculosis prior to the initiation of a first tumor necrosis factor α inhibitor

Treatment with TNFα inhibitors increases risk of reactivating a latent tuberculosis\infection (LTBI). Therefore screening, prior to therapy with TNFα inhibitors, has been recommended, even in low-endemic areas such as well-developed Western Europe countries. We evaluated interferon-gamma release assay (IGRA), as opposed to tuberculin skin test (TST), for detection of LTBI in refractory inflammatory disease patients prior to the initiation of a first TNFα inhibitor. In addition, we evaluated the impact of impaired cellular immunity on IGRA. Patients starting on TNFα inhibition were screened for LTBI by TST and IGRA (Quantiferon-TB Gold). Data on tuberculosis exposure and Bacillus Calmette–Guérin (BCG) vaccination were obtained. Cellular immunity was assessed by CD4+ T lymphocyte cell count. Nine out of 56 patients (16.1%) tested positive for LTBI. A concordant positive result was present in three patients with a medical history of tuberculosis exposure. Six patients with discordant test results had either: (1) a negative TST and positive IGRA in combination with a medical history of tuberculosis exposure (n = 1) or (2) a positive TST and negative IGRA in combination with BCG vaccination (n = 3) or a medical history of tuberculosis exposure (n = 2). CD4+ T lymphocyte cell counts were within normal limits, and no indeterminate results of IGRA were present. IGRA appears reliable for confirming TST and excluding a false positive TST (due to prior BCG vaccination) in this Dutch serie of patients. In addition, IGRA may detect one additional case of LTBI out of 56 patients that would otherwise be missed using solely TST. Immune suppression appears not to result significantly in lower CD4+ T lymphocyte cell counts and indeterminate results of IGRA, despite systemic corticosteroid treatment in half of the patients. Confirmation in larger studies, including assessment of cost-effectiveness, is required

Explanation and relations. How do general practitioners deal with patients with persistent medically unexplained symptoms: a focus group study

Contains fulltext : 80758.pdf (publisher's version ) (Open Access)BACKGROUND: Persistent presentation of medically unexplained symptoms (MUS) is troublesome for general practitioners (GPs) and causes pressure on the doctor-patient relationship. As a consequence, GPs face the problem of establishing an ongoing, preferably effective relationship with these patients. This study aims at exploring GPs' perceptions about explaining MUS to patients and about how relationships with these patients evolve over time in daily practice. METHODS: A qualitative approach, interviewing a purposive sample of twenty-two Dutch GPs within five focus groups. Data were analyzed according to the principles of constant comparative analysis. RESULTS: GPs recognise the importance of an adequate explanation of the diagnosis of MUS but often feel incapable of being able to explain it clearly to their patients. GPs therefore indicate that they try to reassure patients in non-specific ways, for example by telling patients that there is no disease, by using metaphors and by normalizing the symptoms. When patients keep returning with MUS, GPs report the importance of maintaining the doctor-patient relationship. GPs describe three different models to do this; mutual alliance characterized by ritual care (e.g. regular physical examination, regular doctor visits) with approval of the patient and the doctor, ambivalent alliance characterized by ritual care without approval of the doctor and non-alliance characterized by cutting off all reasons for encounter in which symptoms are not of somatic origin. CONCLUSION: GPs feel difficulties in explaining the symptoms. GPs report that, when patients keep presenting with MUS, they focus on maintaining the doctor-patient relationship by using ritual care. In this care they meticulously balance between maintaining a good doctor-patient relationship and the prevention of unintended consequences of unnecessary interventions

How patients and family physicians communicate about persistent medically unexplained symptoms. A qualitative study of video-recorded consultations

Objective: To study doctor-patient interaction styles in consultations with patients presenting persistent medically unexplained symptoms (MUS) and to study on which stages of the consultation patients and doctors focus within the available time. Methods: exploratory, qualitative analysis of transcripts of 20 videotaped consultations between family physicians (FP) and persistent MUS patients. Results: Patients presented many symptoms in a rather unstructured way. However, FPs hardly used structuring techniques such as agenda setting and summarizing. Patients with persistent MUS got much opportunity to tell their story, but the reasons for encounter, their beliefs and concerns were not discussed in a structured manner. Although consultations were focused on these issues, mostly patients themselves initiated discussion of their ideas, concerns and expectations. FPs' extensive explanations of the origin of the symptoms often did not take patients' beliefs and concerns into account. Conclusions: Due to patients' multiple symptom presentation and the absence of FPs' structuring techniques, consultations of persistent MUS patients proceed rather unfocused. However, patients got ample opportunity to tell their story. Practice implications: Persistent MUS patients might benefit from structured consultations focused on the exploration of the reason for encounter