Patients’ Experiences of Cancer Diagnosis as a Result of an Emergency Presentation: A Qualitative Study

Introduction

Cancers diagnosed following visits to emergency departments (ED) or emergency admissions (emergency presentations) are associated with poor survival and may result from preventable diagnostic delay. To improve outcomes for these patients, a better understanding is needed about how emergency presentations arise. This study sought to capture patients'' experiences of this diagnostic pathway in the English NHS.

Methods

Eligible patients were identified in a service evaluation of emergency presentations and invited to participate. Interviews, using an open-ended biographical structure, captured participants'' experiences of healthcare services before diagnosis and were analysed thematically, informed by the Walter model of Pathways to Treatment and NICE guidance in an iterative process.

Results

Twenty-seven interviews were conducted. Three typologies were identified: A: Rapid investigation and diagnosis, and B: Repeated cycles of healthcare seeking and appraisal without resolution, with two variants where B1 appears consistent with guidance and B2 has evidence that management was not consistent with guidance. Most patients’ (23/27) experiences fitted types B1 and B2. Potentially avoidable breakdowns in diagnostic pathways caused delays when patients were conflicted by escalating symptoms and a benign diagnosis given earlier by doctors. ED was sometimes used as a conduit to rapid testing by primary care clinicians, although this pathway was not always successful.

Conclusions

This study draws on patients'' experiences of their diagnosis to provide novel insights into how emergency presentations arise. Through these typologies, we show that the typical experience of patients diagnosed through an emergency presentation diverges significantly from normative pathways even when there is no evidence of serious service failures. Consultations were not a conduit to diagnosis when they inhibited patients’ capacity to appraise their own symptoms appropriately and when they resulted in a reluctance to seek further healthcare.

Recommendations

The findings also point to potentially avoidable breakdowns in the diagnostic process. In particular, to encourage patients to return to the GP if symptoms escalate, a stronger emphasis is needed on diagnostic uncertainty in discussions between patients and doctors in both primary and secondary care. To improve appropriate access to rapid investigations, systems are needed for primary care to communicate directly with secondary care at the time of referral.     

Cellular versus acellular matrix devices in treatment of diabetic foot ulcers: study protocol for a comparative efficacy randomized controlled trial

Background

The referral letter plays a key role both in the communication between primary and secondary care, and in the quality of the health care process. Many studies have attempted to evaluate and improve the quality of these referral letters, but few have assessed the impact of their quality on the health care delivered to each patient.

Methods

A cluster randomized trial, with the general practitioner office as the unit of randomization, has been designed to evaluate the effect of a referral intervention on the quality of health care delivered. Referral templates have been developed covering four diagnostic groups: dyspepsia, suspected colonic malignancy, chest pain, and chronic obstructive pulmonary disease. Of the 14 general practitioner offices primarily served by University Hospital of North Norway Harstad, seven were randomized to the intervention group. The primary outcome is a collated quality indicator score developed for each diagnostic group. Secondary outcomes include: quality of the referral, health process outcome such as waiting times, and adequacy of prioritization. In addition, information on patient satisfaction will be collected using self-report questionnaires. Outcome data will be collected on the individual level and analyzed by random effects linear regression.

Discussion

Poor communication between primary and secondary care can lead to inappropriate investigations and erroneous prioritization. This study’s primary hypothesis is that the use of a referral template in this communication will lead to a measurable increase in the quality of health care delivered.

Trial registration

This trial has been registered at ClinicalTrials.gov. The trial registration number is NCT01470963     

Diagnosis, treatment, and management of irritable bowel syndrome with constipation and chronic constipation

Irritable bowel syndrome with constipation (IBS-C) and chronic constipation are 2 common gastrointestinal motility disorders that place a substantial burden on patients and society. Symptoms of both disorders are chronic, sometimes severe, and often respond poorly to treatment with traditional approaches, resulting in reduced quality of life, polypharmacy, and frequent healthcare utilization. Because structural, physical, or biochemical markers cannot be used to identify either disorder, diagnosis is symptom-based. In the absence of alarm features suggestive of organic disease or secondary causes of symptoms, these disorders can be positively and confidently diagnosed. In general, traditional agents used to treat patients with constipation target only a single symptom, and do not provide adequate relief of symptoms in the majority of IBS-C patients. Although patients with mild constipation symptoms may respond to treatment with fiber and laxatives, others with moderate-to-severe symptoms may require additional therapies and/or referral to a specialist for further evaluation. The advent of novel serotonergic agents has rejuvenated the therapeutic approach to patients with IBS-C and chronic constipation.     

Transferring the costs of expensive treatments from secondary to primary care.

General practitioners, especially fundholders, are becoming increasingly concerned about being asked to prescribe treatments for their patients that are outside their therapeutic experience. They are concerned about the clinical responsibility for such prescribing and the effects on their budgets. In some specialties transferring the costs of expensive treatments from secondary to primary care (cost shifting) has become partly institutionalised because of the separate sources of funding for drugs prescribed in the two sectors. With increased efforts to control the rising costs of the drugs budget and the emergence of new expensive treatments, cost shifting will be a challenge to clinicians and purchasers as they strive for rational, cost effective prescribing. A review of the funding mechanisms for drugs prescribing and of the relation between the licensing process and the decision to support the use of a treatment in primary or secondary care is needed.     

Managing depression in a changing primary mental healthcare system: comparison of two snapshots of Australian GPs' treatment and referral patterns

Background Significant government spending has resulted in substantial changes to the Australian primary mental healthcare system. Initially producing the Better Outcomes in Mental Health Care (BOiMHC) initiative, this has been replaced by the Better Access to Mental Health Care programme, which allows all general practitioners (GPs) to refer patients for allied psychological health care under Medicare. Aim To examine changes in patient management and referral for care following the BOiMHC initiative.Method Comparison of results of a 2006 postal survey of Australian GPs examining self-reported management of patients with depression with a similar survey conducted in 2001-2002, prior to the BOiMHC initiative.Results One hundred and thirty-three (33%) GPs responded. The main self-reported strategies for managing patients with depression were similar to the previous study: supportive counselling and medication. No significant difference was found in rates of self-reported formal training in psychological treatments. Significantly higher rates of referral for psychological treatments were reported in 2006 than in 2002. Small trends towards higher reported referral for and reported use of psychological treatments by GPs registered for the BOiMHC initiative were noted when compared with those who were not registered.Conclusion While GPs' main reported strategies for managing patients with depression were unchanged, reported referral for psychological therapies was significantly higher in 2006, possibly reflecting the impact of changes to the primary mental healthcare system. Ongoing rigorous evaluation of further changes to the primary mental healthcare system are needed to determine whether they deliver effective, evidence-based care, and thus to inform future programmes.     

Gezamenlijke besluitvorming zorgt voor een betere toepassing van evidence-based medicine in de geriatrische patiënt

Evidence based medicine (EBM) is the integration of the best research evidence, clinical expertise and patient values in the decision making process for patient care. However, elderly people are often excluded from participating in scientific studies and they often have multiple morbidities, which complicates the application of EBM. Shared decision making (SDM), a process where clinicians and patients share the best available evidence when faced with the task of making decisions, and where patients are supported to consider options, to achieve appropriate treatment can help to shape EBM for this group of patients.In this article, we provide tools for finding relevant literature for the geriatric patient population and for shaping the SDM process to achieve personalized care.     

Patient Perspectives on the Experience of Being Newly Diagnosed with HIV in the Emergency Department/Urgent Care Clinic of a Public Hospital

We sought to understand patient perceptions of the emergency department/urgent care (ED/UC) HIV diagnosis experience as well as factors that may promote or discourage linkage to HIV care. We conducted in-depth interviews with patients (n=24) whose HIV infection was diagnosed in the ED/UC of a public hospital in San Francisco at least six months prior and who linked to HIV care at the hospital HIV clinic. Key diagnosis experience themes included physical discomfort and limited functionality, presence of comorbid diagnoses, a wide spectrum of HIV risk perception, and feelings of isolation and anxiety. Patients diagnosed with HIV in the ED/UC may not have their desired emotional supports with them, either because they are alone or they are with family members or friends to whom they do not want to immediately disclose. Other patients may have no one they can rely on for immediate support. Nearly all participants described compassionate disclosure of test results by ED/UC providers, although several noted logistical issues that complicated the disclosure experience. Key linkage to care themes included the importance of continuity between the testing site and HIV care, hospital admission as an opportunity for support and HIV education, and thoughtful matching by linkage staff to a primary care provider. ED/UC clinicians and testing programs should be sensitive to the unique roles of sickness, risk perception, and isolation in the ED/UC diagnosis experience, as these things may delay acceptance of HIV diagnosis. The disclosure and linkage to care experience is crucial in forming patient attitudes towards HIV and HIV care, thus staff involved in disclosure and linkage activities should be trained to deliver compassionate, informed, and thoughtful care that bridges HIV testing and treatment sites.     

Pharmacogenetics in Primary Care: The Promise of Personalized Medicine and the Reality of Racial Profiling

Many anticipate that expanding knowledge of genetic variations associated with disease risk and medication response will revolutionize clinical medicine, making possible genetically based Personalized Medicine where health care can be tailored to individuals, based on their genome scans. Pharmacogenetics has received especially strong interest, with many pharmaceutical developers avidly working to identify genetic variations associated with individual differences in drug response. While clinical applications of emerging genetic knowledge are becoming increasingly available, genetic tests for drug selection are not as yet widely accessible, and many primary care clinicians are unprepared to interpret genetic information. We conducted interviews with 58 primary care clinicians, exploring how they integrate emerging pharmacogenetic concepts into their practices. We found that in their current practices, pharmacogenetic innovations have not led to individually tailored treatment, but instead have encouraged use of essentialized racial/ethnic identity as a proxy for genetic heritage. Current manifestations of Personalized Medicine appear to be reinforcing entrenched notions of inherent biological differences between racial groups, and promoting the belief that racial profiling in health care is supported by cutting-edge scientific authority. Our findings raise concern for how pharmacogenetic innovations will actually affect diverse populations, and how unbiased treatment can be assured.     

Can fungal biomarkers be used to improve antifungal therapy in the intensive care unit?

Invasive fungal infections have an increasing incidence worldwide, and patients in intensive care settings are particularly vulnerable to them. Candidemia is the third most common bloodstream pathogen in intensive care units (ICUs) in the United States, and a number of reports have recently been published regarding the increasing incidence of invasive aspergillosis in ICUs throughout the world. Because research has shown that early antifungal therapy is associated with better outcomes, clinicians are starting to explore new diagnostic fungal markers, which are more sensitive and faster than the traditional diagnostic standards of culture and histopathology.     

Referral Patterns for Patients With High-Risk Thyroid Cancer

ObjectiveKnowledge of referral patterns for specialty cancer care is sparse. Information on both the need and reasons for referral of high-risk, well-differentiated thyroid cancer patients should provide a foundation for eliminating obstacles to appropriate patient referrals and improving patient care.MethodsWe surveyed 370 endocrinologists involved in thyroid cancer management. From information in a clinical vignette, respondents were asked to identify the reasons they would need to refer a high-risk patient to a more specialized facility for care. We performed multivariable analysis controlling for hospital and physician characteristics.ResultsThirty-two percent of respondents reported never referring thyroid cancer patients to another facility. Of those that would refer a high-risk patient to another facility, the opportunity for a patient to enter a clinical trial was the most common reason reported (44%), followed by high-dose radioactive iodine (RAI) with or without dosimetry (33%), lateral neck dissection (24%), and external beam radiation (15%). In multivariable analysis, endocrinologists with a higher percentage of their practice devoted to thyroid cancer care were significantly less likely to refer patients to another facility (P = .003).ConclusionsThe majority of endocrinologists treating thyroid cancer patients report referring a high-risk patient to another facility for some or all of their care. Knowledge of the patterns of physician referrals and the likelihood of need for referral are key to understanding discrepancies in referral rates and obstacles in the referral process. (Endocr Pract. 2013;19:638-643)     

Clinical utility of ICD‐11 diagnostic guidelines for high‐burden mental disorders: results from mental health settings in 13 countries

In this paper we report the clinical utility of the diagnostic guidelines for ICD‐11 mental, behavioural and neurodevelopmental disorders as assessed by 339 clinicians in 1,806 patients in 28 mental health settings in 13 countries. Clinician raters applied the guidelines for schizophrenia and other primary psychotic disorders, mood disorders (depressive and bipolar disorders), anxiety and fear‐related disorders, and disorders specifically associated with stress. Clinician ratings of the clinical utility of the proposed ICD‐11 diagnostic guidelines were very positive overall. The guidelines were perceived as easy to use, corresponding accurately to patients’ presentations (i.e., goodness of fit), clear and understandable, providing an appropriate level of detail, taking about the same or less time than clinicians’ usual practice, and providing useful guidance about distinguishing disorder from normality and from other disorders. Clinicians evaluated the guidelines as less useful for treatment selection and assessing prognosis than for communicating with other health professionals, though the former ratings were still positive overall. Field studies that assess perceived clinical utility of the proposed ICD‐11 diagnostic guidelines among their intended users have very important implications. Classification is the interface between health encounters and health information; if clinicians do not find that a new diagnostic system provides clinically useful information, they are unlikely to apply it consistently and faithfully. This would have a major impact on the validity of aggregated health encounter data used for health policy and decision making. Overall, the results of this study provide considerable reason to be optimistic about the perceived clinical utility of the ICD‐11 among global clinicians.     

NHS Diabetes guideline for the perioperative management of the adult patient with diabetes

These Joint British Diabetes Societies guidelines, commissioned by NHS Diabetes, for the perioperative management of the adult patient undergoing surgery are available in full in the Supporting Information. This document goes through the seven stages of the patient journey when having surgery. These are: primary care referral; surgical outpatients; preoperative assessment; hospital admission; surgery; post-operative care; discharge. Each stage is given its own considerations, outlining the roles and responsibilities of each group of healthcare professionals. The evidence base for the recommendations made at each stage, discussion of controversial areas and references are provided in the report. This document has two key recommendations. Firstly, that the management of the elective adult surgery patients should be with modification to their usual diabetes treatment if the fasting is minimized because the routine use of a variable rate intravenous insulin infusion is not recommended. Secondly, that poor preoperative glycaemic control leads to post-outcomes and thus, where appropriate, needs to be addressed prior to referral for surgery.     

Barriers to uptake of services for coronary heart disease: qualitative study

ObjectivesTo identify factors within the South Yorkshire coalfields that influence use of health services by people with angina.DesignQualitative study using semistructured individual and group interviews.SettingGeneral practice and community settings in Barnsley and Rotherham health authorities.Participants14 patients with stable angina and nine primary care staff had individual interviews plus five community groups and one group of general practitioners.ResultsA complex web of factors was identified that prevented, delayed, or facilitated referral to secondary care. Delay, denial, and self management by patients meant that the full extent of symptoms often remained hidden from general practitioners, resulting in a delayed or missed referral. Barriers identified fell into six categories: structural, personal, social and cultural, past experience and expectations, diagnostic confusion, and knowledge and awareness.ConclusionsMany of the factors influencing referral operate before general practitioners become involved. Community development could be one way of tackling inequalities and promoting sustainable change. Structural changes are needed to improve access and increase the acceptability of general practice services. Primary care staff should be educated to detect underreporting of symptoms and promote appropriate referral.

What is already known on this topic

An inverse correlation has been shown between deprivation and cardiac revascularisationFear of hospitals, denial of ill health, and low expectations may prevent people with angina accessing health services

What this study adds

Fear, denial, and low expectations were important barriers to accessing health services, reinforcing earlier findingsOther factors may be specific to the study population—for example, coping, independence, and attributing symptoms to industrially related lung diseaseMany of the barriers operate before general practitioners are involved, making it difficult to identify solutions     

百会穴埋线配合认知行为干预对卒中后便秘患者的影响

目的:探讨百会穴埋线配合认知行为干预对卒中后便秘患者的影响,为减轻临床脑卒中患者便秘症状提供思路。方法:选取黑龙江省某三级甲等医院针灸三科住院的脑卒中便秘患者120例,随机分为四组,对照组给予常规护理,其他组均在常规护理的基础上予以相应的干预措施,试验组1给予认知行为干预,试验组2给予百会穴埋线,试验组3给予百会穴埋线加认知行为干预。比较干预前、干预后7天、干预后14天的四组便秘临床症状积分、便秘治疗效果。结果:干预14天后,四组便秘症状积分均显著低于干预前(P0.05),且试验组1、试验组2和试验组3便秘症状积分均低于对照组,试验组3便秘症状积分最低(P0.05),试验组3的便秘治疗总有效率为92.86%,显著高于其他三组(P0.05)。结论:与常规治疗、常规治疗联合百会穴埋线或认知行为干预相比,百会穴埋线配合认知行为干预可显著提高脑卒中患者便秘的临床效果。     

Gender differences in self-reported constipation characteristics,symptoms, and bowel and dietary habits among patients attending a specialty clinic for constipation

Objectives: This study assessed gender differences in the frequency of various characteristics of constipation, constipation-specific symptoms, and bowel and dietary habits, as well as the effects of independent but associated risk factors.Methods: A cross-sectional study of patients aged ≥18 years with a primary diagnosis of constipation (ie, constipation, slow-transit constipation, outlet dysfunction constipation) was conducted at a tertiary referral center; patients were excluded if they had a primary diagnosis of fecal incontinence. Patients completed both a clinical questionnaire to obtain information on demographic characteristics and medical history and an unvalidated self-report questionnaire relating to the characteristics and symptoms of constipation as well as various bowel and dietary habits. Likert scales were used to assess 4 characteristics of constipation (frequency of constipation, duration of constipation symptoms of ≥1 month, bowel movement frequency, stool consistency) and the frequency of occurrence of 6 constipation symptoms (abdominal pain, abdominal bloating, incomplete evacuation, unsuccessful attempts at evacuation, pain with evacuation, straining with evacuation). The bowel habits that were evaluated included time spent at each evacuation; frequency of needing to change position to evacuate; use of anal digitation to evacuate; and the use of laxatives, enemas, stool softeners, foods, drinks, or other aids. The dietary habits that were evaluated included use of dietary fiber, use of fiber supplements, and water intake.Results: Of the 518 patients, the majority were female (79.0%), white (76.3%), and employed (62.0%), with a mean (SD) age of 52.4 (16.5) years (range, 18.6–91.5 years). After controlling for a number of related conditions, women were more likely than men to have infrequent bowel movements (adjusted odds ratio [AOR] = 2.97; 95% CI, 1.67–5.28), abnormal stool consistency (ie, hard or pelletlike stools) (AOR = 3.08; 95% CI, 1.80–5.28), and a longer duration of constipation symptoms (AOR = 2.00; 95% CI, 1.05–3.82). In addition, women were more likely to report an increased frequency of occurrence of abdominal pain (AOR = 2.22; 95% CI, 1.22–4.05), bloating (AOR = 2.65; 95% CI, 1.50–4.70), unsuccessful attempts at evacuation (AOR = 1.74; 95% CI, 1.01–3.00), and the use of anal digitation to evacuate stool (AOR = 3.37; 95% CI, 1.15–9.90).Conclusions: The women in this specialty-based clinic study experienced a number of constipation symptoms and abnormal bowel habits more frequently than did men. These findings warrant replication in both population- and specialty clinic-based samples. In addition, the physiologic mechanisms that underlie these gender differences warrant investigation.     

循证护理在预防老年骨折术后患者便秘中的应用

目的：探讨循证护理（EBN）在预防老年骨折术后便秘中的应用效果。方法：将102例住院治疗的老年骨折患者随机分为对照组和观察组,对照组采用常规护理方法,观察组应用循证护理的方法及步骤进行护理：找出急需解决的护理问题,在查阅文献的基础上,结合相关调查,找出与老年骨折术后便秘的相关因素,最后在循证支持的基础上,将所获得的实证与临床专业知识和既往经验、患者需求相结合,制定出个性化的护理计划,并实施护理计划。比较两组患者术后便秘的发生率和住院时间等情况。结果：观察组术后便秘的发生率明显低于对照组,且住院时间比对照组明显缩短,两组间比较,差异具有统计学意义（P〈0．01）。结论：循证护理不仅预防和减少了老年骨折患者的术后便秘,而且提高了护理质量,激发了护士对学习、科研、工作的兴趣。     

Use of Structured Templates to Improve Completeness of Endocrinology Referrals

ObjectiveEndocrinology referrals frequently lack important clinical information, which may increase the risk of inefficiency and adverse outcomes. This quality improvement project aimed to improve the completeness of new referrals by utilizing structured referral templates for common endocrine conditions at a large Veterans Health Administration medical center. Our target was of at least a 30% improvement in referral completeness for each condition after the intervention.MethodsElectronic structured referral templates were designed utilizing existing resources and input from primary care providers and endocrinologists. Essential elements were identified and included in the templates. We conducted a retrospective chart review to compare referrals for 125 patients referred between January 1, 2021 and September 1, 2021 (preintervention) and 125 patients referred between October 1, 2021 and September 30, 2022 (postintervention). Each referral was rated using a scoring system derived from the criteria in the data abstraction tool formulated by the investigators.ResultsOn average, preintervention referrals included 52% of the essential elements and postintervention referrals included 93%. Improvements in referral scores for each condition all met the prespecified 30% improvement target. The greatest improvement was for the element “type of visit preference.” A separate analysis excluding that element showed an average improvement from 64% of essential elements preintervention to 92% postintervention.ConclusionStructured referral templates, designed with the input of primary care providers and endocrinologists and embedded into an electronic referral system, can improve the availability of essential information and increase the quality of referrals. Future work should examine the effect of structured referral templates on efficiency, specialist experience, patient experience of care, and clinical outcomes.     

Cancer genetics evaluation: barriers to and improvements for referral

Despite the availability of cancer susceptibility testing, little information exists regarding physicians' selection and referral of eligible patients. This study provides insight into whom, why, and when physicians refer for cancer genetics evaluation, as well as their comfort level within this role. Eighty-two physicians (51 primary care, 15 gynecology, 11 surgery and 5 oncology) completed a survey (response rate: 34%) regarding cancer genetics referral practices. Of these, 59% reported an awareness of the hospital's cancer genetics program. Program awareness was greater among oncologists, surgeons, and gynecologists than among primary care physicians (p < 0.0001). Patients were referred for enhanced risk assessment (88%), improved medical management (85%), and concern for family members (83%). Patient eligibility was based on family cancer history (96%), patient cancer history (83%), and patient request (73%). Patients were not referred mainly due to patient disinterest (54%) or physician concern about either insurance coverage (44%) or insurance discrimination (31%). Primary care physicians were less comfortable with identifying patients for referral (p < 0.001) and with discussing genetics (p < 0.002) than specialists. The largest barriers to referral were lack of program awareness and limited knowledge regarding patient eligibility, improved insurance coverage, and antidiscrimination legislation. Physician-targeted marketing and education may improve the referral process.     

Introduction of a new scoring tool to identify clinically stable heart failure patients

IntroductionHeart failure (HF) poses a burden on specialist care, making referral of clinically stable HF patients to primary care a desirable goal. However, a structured approach to guide patient referral is lacking.MethodsThe Maastricht Instability Score—Heart Failure (MIS-HF) questionnaire was developed to objectively stratify the clinical status of HF patients: patients with a low MIS-HF (0–2 points, indicating a stable clinical condition) were considered for treatment in primary care, whereas high scores (> 2 points) indicated the need for specialised care. The MIS-HF was evaluated in 637 consecutive HF patients presenting between 2015 and 2018 at Maastricht University Medical Centre.ResultsOf the 637 patients, 329 (52%) had a low score and 205 of these 329 (62%) patients were referred to primary care. The remaining 124 (38%) patients remained in secondary care. Of the 308 (48%) patients with a high score (> 2 points), 265 (86%) remained in secondary care and 41 (14%) were referred to primary care. The primary composite endpoint (mortality, cardiac hospital admissions) occurred more frequently in patients with a high compared to those with a low MIS-HF after 1 year of follow-up (29.2% vs 10.9%; odds ratio (OR) 3.36, 95% confidence interval (CI) 2.20–5.14). No significant difference in the composite endpoint (9.8% vs 12.9%; OR 0.73, 95% CI 0.36–1.47) was found between patients with a low MIS-HF treated in primary versus secondary care.ConclusionThe MIS-HF questionnaire may improve referral policies, as it helps to identify HF patients that can safely be referred to primary care.Supplementary InformationThe online version of this article (10.1007/s12471-021-01654-8) contains supplementary material, which is available to authorized users.