Developing a best-practice agenda for music therapy research to support informal carers of terminally ill patients pre- and post-death bereavement: a world café approach.

BACKGROUND: Informal carers of terminally ill patients play a vital role in providing palliative care at home, which impacts on their pre- and post-death bereavement experience and presents an up to 50% greater risk for mental-health problems. However, developing and implementing effective bereavement support remains challenging. There is a need to build the evidence base for music therapy as a potentially promising bereavement support for this vulnerable population. This study aimed to co-design an international best practice agenda for research into music therapy for informal carers of patients pre- and post-death bereavement. METHODS: Online half day workshop using a World Café approach; an innovative method for harnessing group intelligence within a group of international expert stakeholders (music therapy clinicians and academics with experience of music therapy with informal carers at end-of-life). Demographics, experience, key priorities and methodological challenges were gathered during a pre-workshop survey to inform workshop discussions. The online workshop involved four rounds of rotating, 25-minute, small group parallel discussions using Padlet. One final large group discussion involved a consensus building activity. All data were analysed thematically to identify patterns to inform priorities and recommendations. RESULTS: Twenty-two consented and completed the pre-event survey (response rate 44%), from countries representing 10 different time zones. Sixteen participated in the workshop and developed the following best practice agenda. The effectiveness of music therapy in supporting informal carers across the bereavement continuum should be prioritised. This should be done using a mixed methods design to draw on the strengths of different methodological approaches to building the evidence base. It should involve service users throughout and should use a core outcome set to guide the choice of clinically important bereavement outcome measures in efficacy/effectiveness research. CONCLUSIONS: Findings should inform future pre- and post-death bereavement support research for informal caregivers of terminally ill patients. This is an important step in building the evidence base for commissioners and service providers on how to incorporate more innovative approaches in palliative care bereavement services.

Real world outcomes of CFTR modulator therapy in Australian adults and children.

BACKGROUND: Recent advances in CFTR modulator therapy have the potential to change the face of cystic fibrosis (CF). This retrospective observational study describes real world experience of the four available CFTR modulators in adults and children with CF in a single centre in Melbourne, Australia. METHOD: Data were collected for all patients treated with CFTR modulators at MonashCF between May 2012 and September 2020. Primary outcomes included lung function, admission days and BMI/BMI centile over time. Adverse events and reasons for changing or ceasing medications were also analysed. RESULTS: 55% (74/133) adult and 46% (55/119) paediatric patients were treated with CFTR modulators. FEV1 increased in adults treated with ivacaftor (IVA) and elexacaftor/tezacaftor/ivacaftor (ELX/TEZ/IVA) by 4.73% and 10.07% respectively, and BMI also improved in these groups. Nutrition improved in adults and children treated with lumacaftor/ivacaftor (LUM/IVA). There was no significant improvement in FEV1 or admission days with LUM/IVA or tezacaftor/ivacaftor (TEZ/IVA). 36% (31/85) ceased LUM/IVA, due to adverse effects in 81% (25/31). Of these, 92% (23/25) changed to TEZ/IVA, 78% (18/23) without significant adverse effects. CONCLUSIONS: Our findings for LUM/IVA and TEZ/IVA are less encouraging than those seen in clinical trials, with no significant improvement in lung function or admission days and a higher rate of adverse effects with LUM/IVA compared with phase 3 clinical trials. TEZ/IVA was generally well tolerated by those who experienced side effects with LUM/IVA. The small number of patients treated with ELX/TEZ/IVA had improvements in all parameters. These findings support ongoing use of IVA for individuals with gating mutations, and transition to ELX/TEZ/IVA once available for patients with at least one Phe508del mutation.

What are the digitally enabled psychosocial interventions delivered by trained practitioners being offered to adults with life-shortening illnesses and palliative care needs and their informal and professional caregivers? A scoping review.

OBJECTIVES: Computer-mediated and telephone communication connecting professionals and patients (eHealth) is well established. Yet there is little information about psychosocial interventions delivered by trained practitioners for a palliative care population. The aim is to describe digitally enabled psychosocial interventions offered to adults with life-shortening or terminal illnesses and carers/families receiving palliative care, and how these are delivered and evaluated. METHODS: Using Joanna Briggs Institute scoping review methodology, 4 databases (MEDLINE, CINAHL, PsycINFO, and Academic Search Ultimate) were searched (January 2011-April 2021). Inclusion criteria: (a) any design reporting and (b) psychosocial interventions delivered digitally by palliative care health and social care practitioners to (c) adults with life-shortening illnesses. RESULTS: Included papers (n=16) were from Europe ((n=8), Asia (n=2), and the USA (n=6). Research designs encompassed pre- and post-studies, randomized control trials, feasibility, and pilot studies. Tools evaluated psychological, somatic, functional, and psychosocial outcomes. Underpinning approaches included cognitive behavioral therapy, Erikson's life review, coping skills training, psychoeducation, problem-solving therapy, counseling, emotional support and advice, and art therapy. Delivery tools used were telephones, text messages and emails, websites, videos, workbooks, and compact discs. Practitioners included counselors, psychotherapists, psychologists, art therapists, social workers, registered nurses, and trainees. Patients had Alzheimer's disease and related dementias, advanced cancers, chronic obstructive pulmonary disease, and heart failure. SIGNIFICANCE OF RESULTS: COVID-19 has accelerated the usages of digitally enabled psychosocial interventions. Evidence indicates a growing interest in hybrid, novel, synchronous, and asynchronous digital psychosocial interventions for adults with life-shortening illnesses and their caregivers receiving palliative care.

Real world impact of 13vPCV in preventing invasive pneumococcal pneumonia in Australian children: A national study.

BACKGROUND: We aimed to assess the direct protective effect of 13 valent pneumococcal conjugate vaccine (13vPCV) against invasive pneumococcal pneumonia (IPP; including pneumonia and empyema) in children using a nation-wide case-control study across 11 paediatric tertiary hospitals in Australia. METHODS: Children < 18 years old admitted with pneumonia were eligible for enrolment. IPP was defined as Streptococcus pneumoniae (SP) cultured or detected by polymerase chain reaction (PCR) from blood or pleural fluid. Causative SP serotype (ST) was determined from blood or pleural fluid SP isolates by molecular methods in PCR positive specimens or else inferred from nasopharyngeal isolates. For each IPP case, 20 population controls matched by age and socio-economic status were sampled from the Australian Immunisation Register. Conditional logistic regression was used to estimate the adjusted odds ratio (aOR) of being fully vaccinated with 13vPCV (≥3 doses versus < 3 doses) among IPP cases compared to controls, adjusted for sex and Indigenous status. RESULTS: From February 2015 to September 2018, we enrolled 1,168 children with pneumonia; 779 were 13vPCV-eligible and were individually matched to 15,580 controls. SP was confirmed in 195 IPP cases, 181 of whom had empyema. ST3 and ST19A were identified in 52% (102/195) and 11% (21/195) of IPP cases respectively. The aOR of being fully vaccinated with 13vPCV was 0.8 (95% CI 0.6-1.0) among IPP cases compared to matched controls. CONCLUSION: We failed to identify a strong direct protective effect of 13vPCV against IPP among Australian children, where disease was largely driven by ST3.

'There's something about admitting that you are lonely' - prevalence, impact and solutions to loneliness in terminal illness: An explanatory sequential multi-methods study.

BACKGROUND: Loneliness is a prevalent societal issue and can impact on a person's physical and mental health. It is unclear how loneliness impacts on end of life experiences or how such feelings can be alleviated. AIM: To explore the perceived prevalence, impact and possible solutions to loneliness among people who are terminally ill and their carers in Northern Ireland through the lens of health and social care professionals. DESIGN: An explanatory multi-method study. SETTING/PARTICIPANTS: An online survey (n = 68, response rate 30%) followed by three online focus groups with palliative and end of life care health and social care professionals (n = 14). Data were analysed using descriptive statistics and thematic analysis. RESULTS: Loneliness was perceived by professionals as highly prevalent for people with a terminal illness (92.6%) and their carers (86.8%). Loneliness was considered a taboo subject and impacts on symptoms including pain and breathlessness and overall wellbeing at end of life. Social support was viewed as central towards alleviating feelings of loneliness and promoting connectedness at end of life. Four themes were identified: (1) the stigma of loneliness, (2) COVID-19: The loneliness pandemic (3) impact of loneliness across physical and mental health domains and (4) the power of social networks. CONCLUSION: There is a need for greater investment for social support initiatives to tackle experiences of loneliness at end of life. These services must be co-produced with people impacted by terminal illness to ensure they meet the needs of this population.

Assessing the impact of the 13 valent pneumococcal vaccine on childhood empyema in Australia.

BACKGROUND: Empyema is a serious complication of pneumonia frequently caused by Streptococcus pneumoniae (SP). We assessed the impact of the 13-valent pneumococcal conjugate vaccine (13vPCV) on childhood pneumonia and empyema after inclusion in the Australian National Immunisation Program. METHODS: For bacterial pneumonia and empyema hospitalisations, we ascertained incidence rates (IRs) using the National Hospital Morbidity Database International Statistical Classification of Disease discharge codes and relevant population denominators, and calculated incidence rate ratios (IRR) comparing the 13vPCV period (June 2012-May 2017) with the 7vPCV period (June 2007-May 2011). Blood and pleural fluid (PF) cultures and PF PCR of 401 children with empyema from 11 Australian hospitals during the 13vPCV period were compared with our previous study in the 7vPCV period. FINDINGS: Across 7vPCV and 13vPCV periods, IRs per million children (95% CIs) were 1605 (1588 to 1621) and 1272 (1259 to 1285) for bacterial pneumonia, and 14.23 (12.67 to 15.79) and 17.89 (16.37 to 19.42) for empyema hospitalisations. IRRs were 0.79 (0.78 to 0.80) for bacterial pneumonia and 1.25 (1.09 to 1.44) for empyema. Of 161 empyema cases with SP serotypes, 147 (91.3%) were vaccine types. ST3 accounted for 76.4% of identified serotypes in the 13vPCV period, more than double than the 7vPCV period (p<0.001); ST19A decreased from 36.4% to 12.4%. No cases of ST1 empyema were identified in the 13vPCV period versus 14.5% in the 7vPCV period. INTERPRETATION: 13vPCV resulted in a significant reduction in all-cause hospitalisations for bacterial pneumonia but empyema hospitalisations significantly increased, with emergence of pneumococcal ST3 as the dominant serotype in empyema. TRIAL REGISTRATION NUMBER: Australian and New Zealand Clinical Trial Registry ACTRN 12614000354684.

Factors Affecting Outcome Following Video-Assisted Thoracoscopic Surgery for Empyema in Children: Experience from a Large Tertiary Referring Centre.

Introduction: We report the results of video-assisted thoracoscopic surgery (VATS) in a large population of children with empyema, focusing on the factors affecting the postoperative length of stay (LOS). Materials and Methods: After ethical approval (RES-18-0000-071Q), a retrospective review was performed (2013-2018). Results are reported as number of cases (%) and median (range) and analyzed by Mann-Whitney U and Kruskal-Wallis tests. Correlation analysis was conducted. Results: We identified 159 children with empyema; 75 [42 (56%) males] underwent VATS. Median age was 3.6 (0.4-14.5) years. Presentation was: autumn 15 (20%), winter 26 (35%), spring 18 (24%), summer 16 (21%) with no difference in LOS (P = .6). Preoperative symptoms duration was 7 (2-28) days. Postoperatively, chest drain was on suction in 30 (40%) patients, in situ for 3 (2-13) days. Six (8%) children required further procedures. LOS was 8 (3-47) days. Pleural fluid revealed: Streptococcus species. 41 (55%), other species 8 (11%), no bacteria 26 (34%); LOS was longer with positive pleural fluid: 9 (4-47) versus 6.5 (3-16) days (P = .02). There was no correlation between the LOS and preoperative symptoms duration (r = -0.03 [95% CI -0.3 to 0.2]; P = .7), empyema size (r = 0.2 [95% CI -0.07 to 0.5]; P = .1) and chest drain size (r = 0.09 [95% CI -0.14 to 0.3]; P = .4). Discussion: In our experience, >90% of children with empyema will be treated with a single VATS with an average LOS of 8 days. Positive microbiology culture significantly affects the LOS.

The bronchial circulation--worth a closer look: a review of the relationship between the bronchial vasculature and airway inflammation.

Until recently, the bronchial circulation has been relatively ignored in the research and clinical arenas, perhaps because of its small volume and seeming dispensability relative to the pulmonary circulation. Although the bronchial circulation only receives around 1% of the cardiac output in health, it serves functions that are critical to maintaining airway and lung function. The bronchial circulation also plays an important role in many lung and airway diseases; through its ability to increase in size, the bronchial circulation is able to provide lung parenchymal perfusion when the pulmonary circulation is compromised, and more recently the role of the bronchial circulation in the pathogenesis of inflammatory airway disease has been explored. Due to the anatomic variability and small volume of the bronchial circulation, much of the research to date has necessitated the use of animal models and invasive procedures. More recently, non-invasive techniques for measuring bronchial blood flow in the mucosal microvascular network have been developed and offer a new avenue for the study of this circulation in humans. In conjunction with molecular research, measurement of airway blood flow (Q(aw)) may help elucidate the role of the bronchial circulation in inflammatory airway disease and become a useful tool for monitoring therapy.

Cystic fibrosis in neonates and infants.

Cystic fibrosis (CF) is a common autosomal recessive disorder, characterized by chronic bronchopulmonary infection, pancreatic insufficiency, and subsequently, other multisystem complications. Most children are diagnosed before school age. Here we review the pathophysiology of the condition, the age-related presentations of CF up until school age, and the appropriate use of diagnostic tests. A specialist centre should supervise treatment. There are exciting new advances in monitoring techniques in the preschool years, including CT scanning, bronchoscopy and gas mixing indices. Recent advances in the knowledge of the molecular biology of CF hold out the hope of specific therapies which can reverse the underlying defect causing death from CF lung disease.