The cause of most CHD is unknown and considered complex, implicating genetic and environmental factors in disease causation. The Kids Heart BioBank was established in 2003 to accelerate genetic investigations into CHD.

Recruitment includes patients undergoing interventions for CHD at The Children’s Hospital at Westmead. Informed consent is obtained from parents/guardians, and blood is collected at the time of cardiac intervention from which DNA is extracted and stored. Associated detailed clinical information and a family history are stored in the purpose-designed database.

To date, the Kids Heart BioBank contains biospecimens and associated clinical information from over 4,900 patients with CHD and their families. Two-thirds (64.1%) of probands have been included in research studies with 28.9% of participants who underwent genomic sequencing receiving a molecular diagnosis with direct clinical utility. The value of this resource to patients and families is highlighted by the high consent rate (94.6%) and the low withdrawal of consent rate (0.4%). The Kids Heart BioBank has supported many large national and international collaborations and contributed significantly to CHD research.

The Kids Heart BioBank is an invaluable resource and, together with other similar resources, the resulting research has paved the way for clinical genetic testing options for CHD patients, previously not possible. With research in the field moving away from diagnosing monogenic disease, the Kids Heart BioBank is ideally placed to support the next chapter of research efforts into complex disease mechanisms, requiring large patient cohorts with detailed phenotypic information.

In recent years, there has been a growing interest to enhance patients’ symptom management during routine cancer care using patient-reported outcome measures. The goal of this study is to analyse patients’ responses to the Edmonton Symptom Assessment System (ESAS) to determine whether patient-reported outcomes could help characterise those patients with the highest supportive care needs and symptom burden in order to help provide targeted support for patients.

In this study, we analysed ESAS questionnaire responses completed by patients as part of their routine care and considered part of patients’ standard of care. Statistical analyses were performed using the IBM SPSS Statistics version 26.0. Descriptive statistics are used to summarise patient demographics, disease characteristics and patient-reported symptom severity and prevalence.

The overall mean age is 65.2 ± 12.8 years comprising 43.8% male and 56.2% female patients. The five common primary disease sites are breast (26.2%), haematology (21.1%), gastrointestinal (15.3%), genitourinary (12.7%) and lung (12.0%) cancers. The mean severity for each symptom is all mild (score: 1–3). The three most common reported symptoms causing distress are tiredness, poor overall wellbeing and anxiety, and the least reported symptom is nausea.

Systematic self-reporting of patients’ symptoms is important to improve symptom management, timely facilitation of appropriate intervention, patient experience, and patient and family satisfaction. The awareness of disease site, gender and age-related symptom variations should help in the design and provision of appropriate symptom-directed, tumour-specific and patient-focused interventions to meet patients’ immediate needs.

Financial toxicity is of increasing concern in the United States. The Comprehensive Score for Financial Toxicity (COST) is a validated measure; however, it has not been widely utilized among low-income patients and may not fully capture financial toxicity in this population. Furthermore, the relationships between financial toxicity, quality of life (QOL), and patient well-being are poorly understood. We describe the experience of financial toxicity among low-income adults receiving cancer care. We hypothesized that higher financial toxicity would be associated with less income and lower quality of life. Qualitative interviews focused on the financial impact of cancer treatment.

This study was conducted at a cancer clinic in Central Texas. Quantitative and qualitative data were collected in Fall and Spring 2018, respectively. The quantitative sample (N = 115) was dichotomized by annual income (<$15,000 vs. >$15,000). Outcomes included financial toxicity (COST), quality of life (FACT-G), and patient well-being (PROMIS measures: Anxiety, Depression, Fatigue, Pain Interference, and Physical Function). Associations between quality of life, patient well-being, and financial toxicity were evaluated using linear regression. Sequential qualitative interviews were conducted with a subsample of 12 participants.

Patients with <$15k had significantly lower levels of QOL and patient well-being such as depression and anxiety compared to patients with >$15k across multiple measures. A multivariate linear regression found QOL (Β = 0.17, 95% CI = 0.05, 0.29, p = 0.008) and insurance status (Β = −3.79, 95% CI = −7.42, −0.16, p = 0.04), but not income, were significantly associated with financial toxicity. Three qualitative themes regarding patient's access to cancer care were identified: obtaining healthcare coverage, maintaining financial stability, and receiving social support.

Low-income patients with cancer face unique access barriers and are at risk for forgoing treatment or increased symptom burdens. Comprehensive assessment and financial navigation may improve access to care, symptom management, and reduce strain on social support systems.

The Pharmaceutical Benefits Advisory Committee (PBAC) is an independent expert body that recommends new technologies for listing on the Pharmaceutical Benefits Scheme. Its decision-making process is evidence-based and considers a technology's clinical effectiveness, safety, and cost-effectiveness compared with other technologies. Since 2014, the PBAC has formally taken into account input from those impacted by the technology via an online consumer comments portal and has also reported on received comments in the Public Summary Documents (PSDs). Comments are welcomed from those whose health the technology is trying to improve, as well as carers, clinicians, and organizations. Our objective was to analyze and review consumer comments in the PBAC's decision-making process.

We extracted information about consumer comments from the PBAC PSDs from 2014–9. We conducted simple descriptive analyses.

Our findings reveal that two thirds of all submissions did not receive a single consumer comment. Of the remaining third, eight submissions (less than 1 percent) had a substantial number of consumer comments (>500). For these technologies, multiple submissions were required before a recommendation was issued. Submissions spanned multiple therapeutic areas, the therapeutic areas with the most consumer comments were genetic disease, pediatrics, and oncology.

In the light of our review, we have identified limitations to the current consumer comments process, and after an examination of the processes of other comparable health technology assessment agencies, we have identified a number of improvements that could be made to the PBAC's process to increase consumer engagement.

The arrival of the coronavirus disease 2019 pandemic disrupted life suddenly and forcefully, and healthcare systems around the world are still struggling to come to terms with it. This paper reviews the impact of the pandemic on ENT practice and training.

The present manuscript was developed as a narrative review to examine the role of otorhinolaryngologists in the management of the pandemic, and assess its impact on practice and training in the specialty.

Otorhinolaryngologists handle secretions of organs implicated in disease transmission, leaving them particularly vulnerable even while performing simple procedures. Although the pandemic increased skill expectations, it simultaneously reduced learning opportunities for trainees. In addition, attention to emergencies has been delayed. Further, the suspension of elective procedures has affected patients with malignancies.

While planning service resumption, provisions need to be made for protective equipment and training; improving teleconsultation services will help provide sustainable care during further waves.

The causes of CHD are complex and often unknown, leading parents to ask how and why this has happened. Genetic counselling has been shown to benefit these parents by providing information and support; however, most parents currently do not receive this service. This study aimed to develop a brochure to determine whether an information resource could improve parents’ knowledge about CHD causation and inheritance and increase psychosocial functioning.

In development, the resource was assessed against several readability scales and piloted. Parents of children attending preadmission clinic for surgery were included. Assessments occurred pre- and post-receiving the information resource using a purpose-designed knowledge measure and validated psychological measures.

Participant’s (n = 52) knowledge scores increased significantly from the pre-questionnaire ( ${\overline x}\, = \,5/10$ , sd = 2.086) to post-questionnaire ( $\overline x\, = \,7.88/10$ , sd = 2.094, p < 0.001), with all aware that CHD can be caused by genetic factors after reading the brochure. Perceived personal control also increased from pre- ( $\overline x\, = \,11.856/18$ , sd = 4.339) to post-brochure ( $\overline x\, = \,14.644/18$ , sd = 3.733, p < 0.001), and many reported reduced feelings of guilt. No negative emotional response to the brochure was reported. The information provided was considered relevant (88%), reassuring (86%), and 88% would recommend the brochure to other parents. However, some wanted more emotional support and assistance in what to tell their child.

Use of the information resource significantly enhanced parents’ knowledge of CHD causation and increased their psychosocial functioning. It is a valuable resource in the absence of genetic counselling; however, it should not replace formal genetic counselling when required.

Compassion and compassionate care are central to radiographers’ professional policy and practice and are congruent with the core values of the National Health Service Constitution. The term compassion however is over-used, ambiguous and vague. This work sought to explore and provide contextual understanding to the term compassion in healthcare.

Walker and Avant’s eight-step model was used as the framework for the concept analysis. Data collection utilised a number of resources including online databases: Medline, CINAHL complete, Scopus, PubMed, PsycINFO, ScienceDirect, Cochrane and DARE; dictionaries, social media, Internet sources, books and doctoral theses. In all, 296 resources were included in the review.

The concept analysis distinguishes the defining characteristics of compassion within a healthcare context, allowing for associated meanings and behaviours to be outlined aiding understanding of compassion. Compassion in healthcare requires five defining attributes to be present: recognition, connection, altruistic desire, humanistic response and action.

The findings identify the complexity of the term and subjective nature in which it is displayed and in turn perceived. The concept analysis forms the basis of further research aiming to develop a healthcare explicit definition of compassion within healthcare, specifically cancer care and radiography practices. Lucidity will enhance understanding, facilitating active engagement and implementation into practice.

Successful trauma systems employ a network of variably-resourced hospitals, staffed by experienced providers, to deliver optimal care for injured patients. The “model of care”—the manner by which inpatients are admitted and overseen, is an important determinant of patient outcomes.

To describe the models of inpatient trauma care at British Columbia’s (BC’s) ten adult trauma centres, their sustainability, and their compatibility with accreditation guidelines.

Questionnaires were distributed to the trauma medical directors at BC’s ten Level I-III adult trauma centres. Follow-up semi-structured interviews clarified responses.

Three different models of inpatient trauma care exist within BC. The “admitting trauma service” was a multidisciplinary team providing exclusive care for injured patients. The “on-call consultant” assisted with Emergency Department (ED) resuscitation before transferring patients to a non-trauma admitting service. The single “short-stay trauma unit” employed on-call consultants who also oversaw a 48-hour short-stay ward.

Both level I trauma centres utilized the admitting trauma service model (2/2). All Level II sites employed an on-call consultant model (3/3), deviating from Level II trauma centre accreditation standards. Level III sites employed all three models in similar proportions. None of the on-call consultant sites believed their current care model was sustainable. Inadequate compensation, insufficient resources, and difficulty recruiting physicians were cited barriers to sustainability and accreditation compliance.

Three distinct models of care are distributed inconsistently across BC’s Level I-III trauma hospitals. Greater use of admitting trauma service and short-stay trauma unit models may improve the sustainability and accreditation compliance of our trauma system.

Patient involvement in health profession student training is becoming more common and includes clinical case studies, informing curriculum development and active teaching in dedicated patient experience sessions. Despite a growing evidence base supporting patient involvement, there is little published data concerning motivation for involvement. A qualitative study was performed to provide narrative relating to patient experiences in expert patient sessions on an undergraduate radiation therapy course.

A phenomenological approach utilised semi-structured interviews with two expert patients from different backgrounds. A common set of questions were used for each participant. Interviews were digitally recorded and transcribed before thematic coding.

Both participants identified areas of similarity as well as key difference in their experiences. Both had different levels of public speaking experience as well as different levels of knowledge relating to radiation therapy treatment. Both found the initial session emotional but ultimately enjoyed the process and found it cathartic.

The patients enjoyed this experience and identified clear value of the teaching for themselves and the students. Previous public speaking or clinical experience seemed to have limited impact on patient experience and suggested the vulnerability of the situation. Both had different perspectives of their fellow patients and their role in the healthcare partnership. These findings indicate the value of ensuring students have access to a range of perspectives from different patients.

To assess how much ENT experience regional general practitioner trainees received, both in their undergraduate and post-graduate training, and to establish if trainees felt they required further ENT training to manage ENT complaints.

An online survey was emailed to general practitioner trainees in Cornwall and Devon.

Of 200 general practitioner trainees, 121 (60.5 per cent) responded to the survey. Of these respondents, 95.9 per cent felt ENT experience was important as a general practitioner; however, 59.5 per cent had no ENT experience in their post-graduate training. Sixty-five per cent of trainees had not had any formal ENT teaching since leaving medical school; however, 93.4 per cent would attend a 1-day course if offered the opportunity locally. Finally, 75.8 per cent of trainees would have liked an ENT post during their post-graduate training.

Further ENT training is required for doctors in general practitioner training schemes to aid improvement of patient care. The most logical way to enhance ENT training in a post-graduate setting is through up-to-date courses held locally with a faculty made up of experts working within the specialty.

To evaluate a training intervention for general practice-based doctors and nurses in terms of the identification, documentation, and referral of male patients experiencing or perpetrating domestic violence and abuse (DVA) in four general practices in the south west of England.

Research suggests that male victims and perpetrators of DVA present to primary care clinicians to seek support for their experiences. We know that the response of primary care clinicians to women patients experiencing DVA improves from training and the establishment of referral pathways to specialist DVA services.

The intervention consisted of a 2-h practice-based training. Outcome measures included: a pre-post, self-reported survey of staff practice; disclosures of DVA as documented in medical records pre-post (six months) intervention; semi-structured interviews with clinicians; and practice-level contact data collected by DVA specialist agencies.

Results show a significant increase in clinicians’ self-reported preparedness to meet the needs of male patients experiencing or perpetrating DVA. There was a small increase in male patients identified within the medical records (6 pre- to 17 post-intervention) but only five of those patients made contact with a specialist DVA agency identified within the referral pathway. The training increased clinicians’ confidence in responding to male patients affected by DVA. The increase in recorded identification of DVA male patients experiencing or perpetrating DVA was small and contact of those patients with a specialist DVA support service was negligible. We need to better understand male help seeking in relation to DVA, further develop interventions to increase identification of male patients experiencing or perpetrating DVA behaviours, and facilitate access to support services.

Head and neck cancer patients face many demanding events, such as radiation therapy, which can cause anxiety and uncertainty. Studies report that relevant information decreases emotional distress and inadequate communication can lead to increased fear and anxiety. There is a lack of research that describes what radiographers do when they meet the patients. The aim is to explain what radiographers’ do that may lead to less anxiety and uncertainty for head and neck cancer patients.

This study was conducted via qualitative interviews and took on a phenomenological, hermeneutic approach. Eleven head and neck cancer patients were interviewed 1-month post radiation therapy.

Successful meetings are characterised by the radiographer smiling, being pleasant, referring to the patient by their name, informing the patient thoroughly, asking open questions and answering questions.

Head and neck cancer patients feel vulnerable and need the radiographer to create a safe atmosphere when they undergo treatment. Then radiographers reduce uncertainty, provide emotional support, reduce loneliness, provide information and create alliances.