The purpose of this research is to determine the impact of working during the early stage of the COVID‐19 pandemic on the well‐being of staff at one 600‐bed acute hospital in metropolitan Melbourne, Australia. This exploratory study is part of a larger mixed methods survey project, reporting the qualitative data from an on‐line survey of clinical staff working at one acute hospital between April 16th and May 13th, 2020 during the COVID‐19 pandemic. Responses to five free‐text questions were analysed using inductive content analysis. 321 medical, nursing, allied health and non‐clinical staff responded to the survey. Respondents reported anxiety, fear and uncertainty related to the pandemic, from the perspectives of work, home, family and community. They reported feeling confused by inconsistent messages received from government, hospital executive, managers and media. Seven themes were identified: (i) worrying about patient care, (ii) changed working conditions, (iii) working in the changed hospital environment, (iv) impact of the pandemic, (v) personal isolation and uncertainty, (vi) leadership and management and (vii) additional support needed for staff. Despite the pandemic being comparatively well‐controlled in Australia, all disciplines reported a high degree of anticipatory anxiety. Staff working in healthcare require both managerial and psychological support to minimise anxiety and promote well‐being and resilience in order to deal with the health crisis. Regular unambiguous communication directing the way forward is crucial.

Opportunities exist to improve care.

We conclude that the circumstances surrounding the death of patients with CF holds challenges for their effective palliative care. CF patients continue life prolonging and preventative treatments until the last hours of life. There is an urgent need to examine palliative care approaches that may usefully coexist with maintaining transplantation options in the end-of-life care of this population.

IntroductionLumacaftor-ivacaftor (LUM-IVA) has been shown to improve clinical outcomes in cystic fibrosis (CF) patients homozygous for Phe508del with ppFEV1>40%. We assessed the clinical utility of LUM-IVA in all eligible adult CF patients with ppFEV1<40% treated for at least 1 year under a single centre managed access program.MethodsFollowing clinical optimisation eligible patients (n=40) with ppFEV1<40% were commenced on LUM-IVA and monitored for tolerance and clinical outcomes including health service utilisation, pulmonary function, weight and body composition. Twenty-four patients reached 1 year of treatment by the time of evaluation. Six discontinued due to adverse events (five for increased airways reactivity) and 3 underwent lung transplantation.ResultsIn comparison to the year prior to LUM-IVA commencement, significant reductions (median/year) were observed in the treatment year in the number of pulmonary exacerbations requiring hospitalisation (3 to 1.5, p=0.002); hospitalisation days (27 to 17, p=0.0002) and intravenous antibiotic days (45 to 27, p=0.0007). Mean change in ppFEV1 was −2.10(se 1.18)% per year in the year prior, with the decline reversed in the year following (+1.45(se 1.13)% per year, p=0.035) although there was significant heterogeneity in individual responses. Mean weight gain at 1 year was 2.5±4.1 kg; p=0.0007), comprising mainly fat mass (mean 2.2 kg). The proportion of patients with severe underweight (BMI<18.5 kg·m−2) decreased from 33% at baseline to 13% at 1 year (p=0.003).ConclusionThis real-world evaluation study demonstrated benefits over several clinical domains (infective exacerbations requiring hospitalisation, intravenous antibiotics, pulmonary function decline and nutritional parameters) in CF patients with severe lung disease.

In most patients with DIOS, the obstruction resolves with medical management. Early consultation with a CF service, assessment for a surgical abdomen and involvement of surgeons where appropriate is recommended. A history of previous laparotomy is a risk factor for the need for surgical intervention.

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Development of evidence-based practice requires investigation of the attitudes and needs of patients, families and healthcare professionals, particularly for sensitive subject areas. Cystic fibrosis (CF) is a recessively inherited life-limiting disorder resulting in early death. Patients with this condition generally expect that lung transplantation will be an available treatment option; however, this is uncertain. A dual approach to care that involves both preparing patients for transplant assessment, while simultaneously exploring acceptable palliative care options is needed. A survey amongst patients with CF, their families and health carers was conducted to understand their attitudes and needs in relation to end-of-life care. The survey encompassed five separate domains, with a total of 60 questions requiring approximately 20 min to complete. Of the 200 surveys sent to patients, 82 (41%) completed responses were received. The Institutional Ethics Committee received six complaints from families of seven patients (3.5% of those surveyed). This article explores the nature of the adverse responses to the survey. The majority of complaints were received from family members rather than from patients. Complaints described dissatisfaction with the topic, little warning about the study and felt it to be inappropriate for their family member's level of health. Survey instruments used to determine attitudes and needs in relation to end-of-life patient care are likely to elicit adverse responses that should be reported in a similar way to other investigational studies. Also arising from adverse responses and the complaint process, is the impact of criticism on study researchers.