scholarly journals Patient Reported Experiences and Delays During the Diagnostic Pathway for Pulmonary Fibrosis: A Multinational European Survey

2021 ◽  
Vol 8 ◽  
Author(s):  
Iris G. van der Sar ◽  
Steve Jones ◽  
Deborah L. Clarke ◽  
Francesco Bonella ◽  
Jean Michel Fourrier ◽  
...  
Keyword(s):  
Primary Care ◽  
Pulmonary Fibrosis ◽  
Final Diagnosis ◽  
Diagnostic Process ◽  
Sufficient Information ◽  
Diagnostic Pathway ◽  
Hospital Referral ◽  
Initial Symptoms ◽  
Patient Reported ◽  
Time To Diagnosis

Introduction: Pulmonary fibrosis includes a spectrum of diseases and is incurable. There is a variation in disease course, but it is often progressive leading to increased breathlessness, impaired quality of life, and decreased life expectancy. Detection of pulmonary fibrosis is challenging, which contributes to considerable delays in diagnosis and treatment. More knowledge about the diagnostic journey from patients' perspective is needed to improve the diagnostic pathway. The aims of this study were to evaluate the time to diagnosis of pulmonary fibrosis, identify potential reasons for delays, and document patients emotions.Methods: Members of European patient organisations, with a self-reported diagnosis of pulmonary fibrosis, were invited to participate in an online survey. The survey assessed the diagnostic pathway retrospectively, focusing on four stages: (1) time from initial symptoms to first appointment in primary care; (2) time to hospital referral; (3) time to first hospital appointment; (4) time to final diagnosis. It comprised open-ended and closed questions focusing on time to diagnosis, factors contributing to delays, diagnostic tests, patient emotions, and information provision.Results: Two hundred and seventy three participants (214 idiopathic pulmonary fibrosis, 28 sarcoidosis, 31 other) from 13 countries responded. Forty percent of individuals took ≥1 year to receive a final diagnosis. Greatest delays were reported in stage 1, with only 50.2% making an appointment within 3 months. For stage 2, 73.3% reported a hospital referral within three primary care visits. However, 9.9% reported six or more visits. After referral, 76.9% of patients were assessed by a specialist within 3 months (stage 3) and 62.6% received a final diagnosis within 3 months of their first hospital visit (stage 4). Emotions during the journey were overall negative. A major need for more information and support during and after the diagnostic process was identified.Conclusion: The time to diagnose pulmonary fibrosis varies widely across Europe. Delays occur at each stage of the diagnostic pathway. Raising awareness about pulmonary fibrosis amongst the general population and healthcare workers is essential to shorten the time to diagnosis. Furthermore, there remains a need to provide patients with sufficient information and support at all stages of their diagnostic journey.

scholarly journals Does the Primary Care Experience Influence the Cancer Diagnostic Process?

2015 ◽  
Vol 2015 ◽  
pp. 1-12 ◽  
Author(s):  
Sylvie Provost ◽  
Raynald Pineault ◽  
Pierre Tousignant ◽  
Danièle Roberge ◽  
Dominique Tremblay ◽  
...  
Keyword(s):  
Primary Care ◽  
Metastatic Cancer ◽  
Diagnostic Process ◽  
Process Time ◽  
Care Experience ◽  
Usual Source ◽  
Point Of Entry ◽  
Experience Of Care ◽  
Time To Diagnosis ◽  
The Impact

Objective. To analyze the impact of patients’ experience of care at their usual source of primary care on their choice of point of entry into cancer investigation process, time to diagnosis, and presence of metastatic cancer at time of diagnosis. Method. A questionnaire was administered to 438 patients with cancer (breast, lung, and colorectal) between 2011 and 2013 in four oncology clinics of Quebec (Canada). Multiple regression analyses (logistic and Cox models) were conducted. Results. Among patients with symptoms leading to investigation of cancer (n=307), 47% used their usual source of primary care as the point of entry for investigation. Greater comprehensiveness of care was associated with the decision to use this source as point of entry (OR = 1.25; CI 90% = 1.06–1.46), as well as with shorter times between first symptoms and investigation (HR = 1.11; p=0.05), while greater accessibility was associated with shorter times between investigation and diagnosis (HR = 1.13; p<0.01).  Conclusion. Experience of care at the usual source of primary care has a slight influence on the choice of point of entry for cancer investigation and on time to diagnosis. This influence appears to be more related to patients’ perceptions of the accessibility and comprehensiveness of their usual source of primary care.

scholarly journals Time to diagnosis of symptomatic gastric and oesophageal cancer in the Netherlands: Where is the room for improvement?

2020 ◽  
Vol 8 (5) ◽  
pp. 607-620
Author(s):  
NF van Erp ◽  
CW Helsper ◽  
P Slottje ◽  
D Brandenbarg ◽  
FL Büchner ◽  
...  
Keyword(s):  
Gastric Cancer ◽  
Primary Care ◽  
Confidence Interval ◽  
Secondary Care ◽  
Interval Duration ◽  
Diagnostic Pathway ◽  
Long Duration ◽  
Time To Diagnosis ◽  
Diagnostic Interval ◽  
Upper Gastrointestinal

Background An efficient diagnostic pathway and early stage diagnosis for cancer patients is widely pursued. This study aims to chart the duration of the diagnostic pathway for patients with symptomatic oesophageal and gastric cancer, to identify factors associated with long duration and to assess the association of duration with tumour stage at diagnosis. Methods This was a retrospective cohort study, using electronic health records of six routine primary care databases covering about 640,000 patients, partly linked to the Netherlands Cancer Registry. Symptomatic patients with oesophageal and gastric cancer (2010–2015) that presented in primary care were included. Duration of four diagnostic intervals was determined: patient interval; first symptoms to primary care consultation, primary care interval; consultation to referral, secondary care interval; referral to diagnosis, and the diagnostic interval; consultation to diagnosis. Characteristics associated with ‘long duration’ (≥P75 duration) were assessed using log-binomial regression. Median durations were stratified for tumour stages. Results Among 312 symptomatic patients with upper gastrointestinal cancer, median durations were: patient interval: 29 days (interquartile interval 15–73), primary care interval: 12 days (interquartile interval 1–43), secondary care interval: 13 days (interquartile interval 6–29) and diagnostic interval: 31 days (11–74). Patient interval duration was comparable for patients with and without alarm symptoms. Absence of cancer-specific alarm symptoms was associated with ‘long duration’ of primary care interval and secondary care interval: relative risk 5.0 (95% confidence interval 2.7–9.1) and 2.1 (95% confidence interval 1.3–3.7), respectively. Median diagnostic interval duration for local stage disease was 51 days (interquartile interval 13–135) versus 27 days (interquartile interval 11–71) for advanced stage ( p = 0.07). Conclusion In the diagnostic pathway of upper gastrointestinal cancers, the longest interval is the patient interval. Reducing time to diagnosis may be achieved by improving patients’ awareness of alarm symptoms and by diagnostic strategies which better identify cancer patients despite low suspicion.

scholarly journals A questionnaire-based survey to evaluate and improve the current HHT medical and social condition in Japan

2020 ◽  
Vol 11 ◽  
pp. 323
Author(s):  
Nobuhiko Arai ◽  
Takenori Akiyama
Keyword(s):  
Primary Care ◽  
Standard Deviation ◽  
Primary Care Physicians ◽  
Demographic Data ◽  
Final Diagnosis ◽  
Social Condition ◽  
Definite Diagnosis ◽  
Fukuoka Prefecture ◽  
Multiple Organs ◽  
Initial Symptoms

Background: Hereditary hemorrhagic telangiectasia (HHT) is a genetic systemic vascular disease affecting multiple organs and shows recurrent intractable symptoms. This disease has not been widely recognized in Japan until recently. Both diagnosed HHT patients and potential ones have faced difficulties because of the unfamiliarity with the disease in Japan. To evaluate the effect and degree of such a Japanese situation, a questionnaire-based survey was executed in this study. Methods: This survey was carried out among the members of HHT Japan Association. The organization consisted of 102 members (as of 6/2019), mainly HHT patients and their family members. A questionnaire was used to gather demographic data, the effort to reach the diagnosis, and information regarding current patients’ and their families’ medical managements. Results: Of the 102 questionnaires distributed, we have got 56 responses. The participants were mostly female (30) with an average age of 55.4 ± 14.8 (mean ± standard deviation [SD]) years. The average age of males was 53.5 ± 16.4. Relatively many HHT patients were born in huge cities such as Tokyo, Osaka, and Fukuoka Prefecture (n = 4 to 8 patients). The duration between the initial symptoms and the definite diagnosis was 8.8 ± 10.9 years. The number of hospitals involved in the final diagnosis was 2.38 ± 1.83. More than 70% of patients now have to visit at least two departments and 24% of HHT patients did not want their family to screen for HHT. Conclusion: HHT medical practice in Japan should be further modified, for example, by establishing HHT centers and educating primary care physicians and HHT patients.

scholarly journals Multimorbidity and patient-reported diagnostic errors in the primary care setting: multicentre cross-sectional study in Japan

BMJ Open ◽  
2020 ◽  
Vol 10 (8) ◽  
pp. e039040
Author(s):  
Takuya Aoki ◽  
Satoshi Watanuki
Keyword(s):  
Primary Care ◽  
Care Setting ◽  
Primary Care Setting ◽  
Diagnostic Errors ◽  
Cross Sectional Study ◽  
Research Network ◽  
Diagnostic Process ◽  
Sectional Study ◽  
Cross Sectional ◽  
Patient Reported

ObjectivesThere is lack of evidence for the association between multimorbidity and diagnostic errors. Information on diagnostic errors from patients’ perspectives is crucial to improve the diagnostic process. In this study, we aimed to investigate patient-reported diagnostic errors and to examine the relationship between multimorbidity and patient-reported diagnostic errors in the primary care setting.DesignMulticentre cross-sectional study.SettingA primary care practice-based research network in Japan (25 primary care facilities).ParticipantsAdult outpatients filled out a standardised questionnaire.Primary outcome measurePatient-reported diagnostic errors.ResultsData collected from 1474 primary care outpatients were analysed. The number of participants who reported diagnostic errors was 57 (3.9%). Most of the missed diagnoses were common conditions in primary care, such as cancer, dermatitis and hypertension. After adjustment for possible confounders and clustering within facilities, multimorbidity was positively associated with patient-reported diagnostic errors (adjusted OR=1.83, 95% CI 1.01 to 3.31). The results of the sensitivity analysis were consistent with those of the primary analysis.ConclusionsThe present study showed a lower proportion of patients reporting experiences of diagnostic errors in primary care than those reported in previous studies in other countries. However, patients with multimorbidity are more likely to report diagnostic errors in primary care; thus, further research is necessary to improve the diagnostic process for patients with multimorbidity.

scholarly journals Nature and type of patient-reported safety incidents in primary care: cross-sectional survey of patients from Australia and England

BMJ Open ◽  
2021 ◽  
Vol 11 (4) ◽  
pp. e042551
Author(s):  
Andrea L Hernan ◽  
Sally J Giles ◽  
Andrew Carson-Stevens ◽  
Mark Morgan ◽  
Penny Lewis ◽  
...  
Keyword(s):  
Primary Care ◽  
Primary Care Patient ◽  
Care Patient ◽  
System Level ◽  
Service Improvement ◽  
Cross Sectional ◽  
Positive Effects ◽  
Contributory Factors ◽  
Safety Incident ◽  
Patient Reported

BackgroundPatient engagement in safety has shown positive effects in preventing or reducing adverse events and potential safety risks. Capturing and utilising patient-reported safety incident data can be used for service learning and improvement.ObjectiveThe aim of this study was to characterise the nature of patient-reported safety incidents in primary care.DesignSecondary analysis of two cross sectional studies.ParticipantsAdult patients from Australian and English primary care settings.MeasuresPatients’ self-reported experiences of safety incidents were captured using the validated Primary Care Patient Measure of Safety questionnaire. Qualitative responses to survey items were analysed and categorised using the Primary Care Patient Safety Classification System. The frequency and type of safety incidents, contributory factors, and patient and system level outcomes are presented.ResultsA total of 1329 patients (n=490, England; n=839, Australia) completed the questionnaire. Overall, 5.3% (n=69) of patients reported a safety incident over the preceding 12 months. The most common incident types were administration incidents (n=27, 31%) (mainly delays in accessing a physician) and incidents involving diagnosis and assessment (n=16, 18.4%). Organisation of care accounted for 27.6% (n=29) of the contributory factors identified in the safety incidents. Staff factors (n=13, 12.4%) was the second most commonly reported contributory factor. Where an outcome could be determined, patient inconvenience (n=24, 28.6%) and clinical harm (n=21, 25%) (psychological distress and unpleasant experience) were the most frequent.ConclusionsThe nature and outcomes of patient-reported incidents differ markedly from those identified in studies of staff-reported incidents. The findings from this study emphasise the importance of capturing patient-reported safety incidents in the primary care setting. The patient perspective can complement existing sources of safety intelligence with the potential for service improvement.

scholarly journals S2K Guideline for Diagnosis of Idiopathic Pulmonary Fibrosis

Respiration ◽  
2021 ◽  
pp. 1-34
Author(s):  
Jürgen Behr ◽  
Andreas Günther ◽  
Francesco Bonella ◽  
Julien Dinkel ◽  
Ludger Fink ◽  
...  
Keyword(s):  
Idiopathic Pulmonary Fibrosis ◽  
Pulmonary Fibrosis ◽  
Disease Diagnosis ◽  
Diagnostic Process ◽  
High Resolution Computed Tomography ◽  
Cellular Analysis ◽  
Golden Standard ◽  
Technical Advances ◽  
Transbronchial Lung Cryobiopsy ◽  
Effective Diagnosis

Idiopathic pulmonary fibrosis (IPF) is a severe and often fatal disease. Diagnosis of IPF requires considerable expertise and experience. Since the publication of the international IPF guideline in the year 2011 and the update 2018 several studies and technical advances have occurred, which made a new assessment of the diagnostic process mandatory. The goal of this guideline is to foster early, confident, and effective diagnosis of IPF. The guideline focusses on the typical clinical context of an IPF patient and provides tools to exclude known causes of interstitial lung disease including standardized questionnaires, serologic testing, and cellular analysis of bronchoalveolar lavage. High-resolution computed tomography remains crucial in the diagnostic workup. If it is necessary to obtain specimens for histology, transbronchial lung cryobiopsy is the primary approach, while surgical lung biopsy is reserved for patients who are fit for it and in whom a bronchoscopic diagnosis did not provide the information needed. After all, IPF is a diagnosis of exclusion and multidisciplinary discussion remains the golden standard of diagnosis.

scholarly journals Assessing the Impact of Multi-Morbidity and Related Constructs on Patient Reported Safety in Primary Care: Generalized Structural Equation Modelling of Observational Data

2021 ◽  
Vol 10 (8) ◽  
pp. 1782
Author(s):  
Ignacio Ricci-Cabello ◽  
Aina María Yañez-Juan ◽  
Maria A. Fiol-deRoque ◽  
Alfonso Leiva ◽  
Joan Llobera Canaves ◽  
...  
Keyword(s):  
Primary Care ◽  
Patient Safety ◽  
Structural Equation ◽  
Structural Equation Models ◽  
Cross Sectional ◽  
Morbidity Burden ◽  
Patient Reported ◽  
Patient Complexity ◽  
Complex Relationships ◽  
The Impact

We aimed to examine the complex relationships between patient safety processes and outcomes and multimorbidity using a comprehensive set of constructs: multimorbidity, polypharmacy, discordant comorbidity (diseases not sharing either pathogenesis nor management), morbidity burden and patient complexity. We used cross-sectional data from 4782 patients in 69 primary care centres in Spain. We constructed generalized structural equation models to examine the associations between multimorbidity constructs and patient-reported patient safety (PREOS-PC questionnaire). These associations were modelled through direct and indirect (mediated by increased interactions with healthcare) pathways. For women, a consistent association between higher levels of the multimorbidity constructs and lower levels of patient safety was observed via either pathway. The findings for men replicated these observations for polypharmacy, morbidity burden and patient complexity via indirect pathways. However, direct pathways showed unexpected associations between higher levels of multimorbidity and better safety. The consistent association between multimorbidity constructs and worse patient safety among women makes it advisable to target this group for the development of interventions, with particular attention to the role of comorbidity discordance. Further research, particularly qualitative research, is needed for clarifying the complex associations among men.

Business intelligence tools to optimize the appropriateness of the diagnostic process for clinical and epidemiologic purposes in a multicenter veterinary pathology service

2021 ◽  
pp. 104063872110031
Author(s):  
Nicola Pozzato ◽  
Laura D’Este ◽  
Laura Gagliazzo ◽  
Marta Vascellari ◽  
Monia Cocchi ◽  
...  
Keyword(s):  
Business Intelligence ◽  
Reporting System ◽  
Animal Health ◽  
Final Diagnosis ◽  
Information Management System ◽  
Daily Basis ◽  
Diagnostic Process ◽  
Multifactorial Diseases ◽  
Specific Syndrome ◽  
Veterinary Pathology

Laboratory tests provide essential support to the veterinary practitioner, and their use has grown exponentially. This growth is the result of several factors, such as the eradication of historical diseases, the occurrence of multifactorial diseases, and the obligation to control endemic and epidemic diseases. However, the introduction of novel techniques is counterbalanced by economic constraints, and the establishment of evidence- and consensus-based guidelines is essential to support the pathologist. Therefore, we developed standardized protocols, categorized by species, type of production, age, and syndrome at the Istituto Zooprofilattico Sperimentale delle Venezie (IZSVe), a multicenter institution for animal health and food safety. We have 72 protocols in use for livestock, poultry, and pets, categorized as, for example, “bovine enteric calf”, “rabbit respiratory”, “broiler articular”. Each protocol consists of a panel of tests, divided into ‘mandatory’ and ‘ancillary’, to be selected by the pathologist in order to reach the final diagnosis. After autopsy, the case is categorized into a specific syndrome, subsequently referred to as a syndrome-specific panel of analyses. The activity of the laboratories is monitored through a web-based dynamic reporting system developed using a business intelligence product (QlikView) connected to the laboratory information management system (IZILAB). On a daily basis, reports become available at general, laboratory, and case levels, and are updated as needed. The reporting system highlights epidemiologic variations in the field and allows verification of compliance with the protocols within the organization. The diagnostic protocols are revised annually to increase system efficiency and to address stakeholder requests.

scholarly journals Long Covid-19: Proposed Primary Care Clinical Guidelines for Diagnosis and Disease Management

2021 ◽  
Vol 18 (8) ◽  
pp. 4350
Author(s):  
Antoni Sisó-Almirall ◽  
Pilar Brito-Zerón ◽  
Laura Conangla Ferrín ◽  
Belchin Kostov ◽  
Anna Moragas Moreno ◽  
...  
Keyword(s):  
Primary Care ◽  
Disease Management ◽  
Signs And Symptoms ◽  
Diagnostic Process ◽  
Press Releases ◽  
Expert Opinions ◽  
Number Of Patients ◽  
Patient Groups

Long COVID-19 may be defined as patients who, four weeks after the diagnosis of SARS-Cov-2 infection, continue to have signs and symptoms not explainable by other causes. The estimated frequency is around 10% and signs and symptoms may last for months. The main long-term manifestations observed in other coronaviruses (Severe Acute Respiratory Syndrome (SARS), Middle East respiratory syndrome (MERS)) are very similar to and have clear clinical parallels with SARS-CoV-2: mainly respiratory, musculoskeletal, and neuropsychiatric. The growing number of patients worldwide will have an impact on health systems. Therefore, the main objective of these clinical practice guidelines is to identify patients with signs and symptoms of long COVID-19 in primary care through a protocolized diagnostic process that studies possible etiologies and establishes an accurate differential diagnosis. The guidelines have been developed pragmatically by compiling the few studies published so far on long COVID-19, editorials and expert opinions, press releases, and the authors’ clinical experience. Patients with long COVID-19 should be managed using structured primary care visits based on the time from diagnosis of SARS-CoV-2 infection. Based on the current limited evidence, disease management of long COVID-19 signs and symptoms will require a holistic, longitudinal follow up in primary care, multidisciplinary rehabilitation services, and the empowerment of affected patient groups.

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