ABSTRACT
PURPOSE: It is unclear whether common maternal infections during pregnancy are risk factors for adverse birth outcomes. We assessed the association between self-reported infections during pregnancy with preterm birth and small-for-gestational-age (SGA) in an international cohort consortium. METHODS: Data on 120,507 pregnant women were obtained from six population-based birth cohorts in Australia, Denmark, Israel, Norway, the UK and the USA. Self-reported common infections during pregnancy included influenza-like illness, common cold, any respiratory tract infection, vaginal thrush, vaginal infections, cystitis, urinary tract infection, and the symptoms fever and diarrhoea. Birth outcomes included preterm birth, low birth weight and SGA. Associations between maternal infections and birth outcomes were first assessed using Poisson regression in each cohort and then pooled using random-effect meta-analysis. Risk ratios (RR) and 95% confidence intervals (CI) were calculated, adjusted for potential confounders. RESULTS: Vaginal infections (pooled RR, 1.10; 95% CI, 1.02-1.20) and urinary tract infections (pooled RR, 1.17; 95% CI, 1.09-1.26) during pregnancy were associated with higher risk of preterm birth. Similar associations with low birth weight were also observed for these two infections. Fever during pregnancy was associated with higher risk of SGA (pooled RR, 1.07; 95% CI, 1.02-1.12). No other significant associations were observed between maternal infections/symptoms and birth outcomes. CONCLUSION: Vaginal infections and urinary infections during pregnancy were associated with a small increased risk of preterm birth and low birth weight, whereas fever was associated with SGA. These findings require confirmation in future studies with laboratory-confirmed infection diagnosis.
Subject(s)
Pregnancy Complications, Infectious , Pregnancy Outcome , Premature Birth , Humans , Female , Pregnancy , Adult , Cohort Studies , Pregnancy Complications, Infectious/epidemiology , Premature Birth/epidemiology , Infant, Newborn , Pregnancy Outcome/epidemiology , Infant, Small for Gestational Age , Young Adult , Risk Factors , Urinary Tract Infections/epidemiology , Australia/epidemiology , Infant, Low Birth WeightABSTRACT
BACKGROUND: People with interstitial lung disease (ILD) were deemed more vulnerable to the SARS-CoV-2 virus and isolated as a means of reducing risk of infection. This study examined the impact of the pandemic on daily life, psychological wellbeing and access to healthcare and identified approaches undertaken to remain safe. METHODS: Four specialist clinics in tertiary centres in Australia (Victoria: two sites; New South Wales: one site; Western Australia: one site) recruited patients with ILD during an 8-week period from March 2021. Semi-structured telephone interviews were conducted with transcripts analysed using principles of grounded theory. RESULTS: Ninety participants were interviewed between April and December 2021. Participants were predominantly female, former smokers with an average age of 66 years. IPF and connective tissue-ILD being the most common subtypes. Five main themes were identified: vulnerability reduced social interaction and isolation, access to healthcare services and support, staying active, emotional and psychological impact. Self-management strategies included staying active both physically and mentally. DISCUSSION: Self-management was key to managing the impact of the pandemic. In combination with advances in technology, implementation of strategies for monitoring wellbeing and support for self-management provides an opportunity to leverage the lessons learnt to ensure a more individualised model of care for people with ILD.
Subject(s)
COVID-19 , Lung Diseases, Interstitial , Self-Management , Humans , Female , Aged , Male , COVID-19/epidemiology , SARS-CoV-2 , PandemicsABSTRACT
INTRODUCTION: The COVID-19 pandemic resulted in a rapid transformation of health services. This study aimed to understand the experiences of healthcare by people with interstitial lung disease (ILD), to inform future service delivery. METHODS: Four specialist clinics in tertiary centres in Australia (Victoria:2 sites; New South Wales: 1 site; Western Australia: 1 site) recruited patients with ILD during an 8-week period from March 2021. Participants completed a COVID-specific questionnaire focused on health-related experiences during 2020. RESULTS: Ninety nine (65% of 153) participants completed the questionnaire. 47% had idiopathic pulmonary fibrosis or connective tissue disease-associated ILD, 62% were female and the average age was 66 years. Whilst 56% rated their overall health in 2020 as the same as months prior, 38% indicated a worsening in health attributed to reduced physical activity and fear of contracting the virus. Access to healthcare professionals was 'good' in 61%, and 'fair-to-poor' for 37% due to missed respiratory assessments, with telehealth (mainly telephone) being perceived as less effective. 89% had contact with respiratory physicians, 68% with general practitioners, predominantly via telephone, with few video consultations. High satisfaction with care was reported by 78%, with lower satisfaction attributed to delays in assessments, disruption to usual services such as pulmonary rehabilitation, and dissatisfaction with telehealth. CONCLUSION: People with ILD were generally satisfied with their care during 2020, however reduced access to healthcare professionals was challenging for those experiencing a deterioration in health. Telehealth was largely well received but did not always meet the needs of people with ILD particularly when unwell.
Subject(s)
COVID-19 , Idiopathic Pulmonary Fibrosis , Lung Diseases, Interstitial , Telemedicine , Humans , Female , Aged , Male , Pandemics , Lung Diseases, Interstitial/therapy , Idiopathic Pulmonary Fibrosis/therapy , Telemedicine/methodsABSTRACT
BACKGROUND AND OBJECTIVE: In Australia, little is known about delivery of care for people with idiopathic pulmonary fibrosis (IPF). This study examined the organization of IPF care across Australia, how it aligns with guidance for best practice, and identified barriers and facilitators to best care. METHODS: Data on the organization of IPF care in Australia were collected from public hospitals using a study-specific questionnaire between February and July 2020. Semi-structured telephone interviews were conducted with respiratory physicians from around Australia between April and December 2020. Interviews were transcribed verbatim and thematic analysis was undertaken. RESULTS: Almost all hospitals (n = 38, 97%) held multidisciplinary meetings (MDMs) for diagnosing IPF, with 90% of multidisciplinary teams including expert respiratory physicians and radiologists; however, rheumatologists, interstitial lung disease nurses and a histopathologist were often not available. More than 90% of institutions had access to oxygen therapy, pulmonary rehabilitation and advanced care planning, but access to psychological support and clinical trials was limited (53% and 58%, respectively). Fifteen respiratory physicians (27% regional) were interviewed. Approaches to diagnosis, treatment and access to referral services were generally consistent with best practice guidance; however, regional respondents reported barriers related to inadequate staffing, lack of a nurse coordinator, inadequate access to clinical trials and funding models. Telehealth technologies were perceived as facilitators to best care. CONCLUSION: Clinical management of IPF in Australia generally aligns with best practice guidance, but there may be some inequity of access to specialist services, particularly in regional areas, that should be addressed to ensure optimal care for all.
Subject(s)
Idiopathic Pulmonary Fibrosis , Australia , Hospitals , Humans , Idiopathic Pulmonary Fibrosis/diagnosis , Idiopathic Pulmonary Fibrosis/therapy , Pulmonologists , Referral and ConsultationABSTRACT
INTRODUCTION: People with pulmonary fibrosis (PF) experience a high symptom burden, reduced quality of life and a shortened lifespan. Treatment options are limited and little is known about what patients, caregivers and healthcare professionals (HCPs)/researchers consider as the most important research priorities. This study aimed to identify the top 10 research priorities for PF across all stakeholders. METHODS: Participants included people with PF, caregivers and HCPs/researchers involved with PF. The research priority setting exercise involved three stages: (1) identifying priorities using an open-ended questionnaire and thematic analysis, (2) development of specific research questions at a face-to-face workshop, and (3) online ranking of research questions to identify the top 10 research priorities using nominal group ranking method. RESULTS: 196 participants completed stage 1 generating 560 questions and 14 research themes were identified. Stage 2 involved 32 participants and generated 53 indicative questions from which 39 were used for the final ranking. Stage 3 was completed by 270 participants. The top ranked priorities focussed on medications to reverse scarring in the lungs (ranked 1st), improving lung function (ranked 2nd, 6th and 8th), interventions aimed at alleviating symptoms (ranked 5th and 7th), prevention of PF (ranked 3rd and 4th) and the best exercise programme for PF (ranked 10th). There was good consensus among patients/carers and HCPs/researchers on the top 10 priorities, however, causes of acute exacerbations and early diagnosis for improving survival, was ranked higher by HCPs/researchers. CONCLUSION: Interventions for preserving lung health and alleviation of symptom burden were top research priorities for PF stakeholders.
Subject(s)
Biomedical Research/methods , Caregivers/standards , Consensus , Health Personnel/standards , Pulmonary Fibrosis/therapy , Quality of Life , Research Personnel/standards , Health Priorities , Humans , Surveys and QuestionnairesABSTRACT
Parental occupational exposures to pesticides, animals and organic dust have been associated with an increased risk of childhood cancer based mostly on case-control studies. We prospectively evaluated parental occupational exposures and risk of childhood leukemia and central nervous system (CNS) tumors in the International Childhood Cancer Cohort Consortium. We pooled data on 329,658 participants from birth cohorts in five countries (Australia, Denmark, Israel, Norway and United Kingdom). Parental occupational exposures during pregnancy were estimated by linking International Standard Classification of Occupations-1988 job codes to the ALOHA+ job exposure matrix. Risk of childhood (<15 years) acute lymphoblastic leukemia (ALL; n = 129), acute myeloid leukemia (AML; n = 31) and CNS tumors (n = 158) was estimated using Cox proportional hazards models to generate hazard ratios (HR) and 95% confidence intervals (CI). Paternal exposures to pesticides and animals were associated with increased risk of childhood AML (herbicides HR = 3.22, 95% CI = 0.97-10.68; insecticides HR = 2.86, 95% CI = 0.99-8.23; animals HR = 3.89, 95% CI = 1.18-12.90), but not ALL or CNS tumors. Paternal exposure to organic dust was positively associated with AML (HR = 2.38 95% CI = 1.12-5.07), inversely associated with ALL (HR = 0.55, 95% CI = 0.31-0.99) and not associated with CNS tumors. Low exposure prevalence precluded evaluation of maternal pesticide and animal exposures; we observed no significant associations with organic dust exposure. This first prospective analysis of pooled birth cohorts and parental occupational exposures provides evidence for paternal agricultural exposures as childhood AML risk factors. The different risks for childhood ALL associated with maternal and paternal organic dust exposures should be investigated further.
Subject(s)
Central Nervous System Neoplasms/epidemiology , Leukemia, Myeloid, Acute/epidemiology , Maternal Exposure/adverse effects , Occupational Exposure/adverse effects , Paternal Exposure/adverse effects , Precursor Cell Lymphoblastic Leukemia-Lymphoma/epidemiology , Prenatal Exposure Delayed Effects/epidemiology , Adolescent , Adult , Animals , Animals, Domestic , Australia/epidemiology , Central Nervous System Neoplasms/etiology , Child , Child, Preschool , Denmark/epidemiology , Dust , Female , Follow-Up Studies , Humans , Infant , Infant, Newborn , Israel/epidemiology , Leukemia, Myeloid, Acute/etiology , Male , Norway/epidemiology , Pesticides/toxicity , Precursor Cell Lymphoblastic Leukemia-Lymphoma/etiology , Pregnancy , Prenatal Exposure Delayed Effects/etiology , Prospective Studies , Risk Factors , United Kingdom/epidemiology , Young AdultABSTRACT
OBJECTIVE: To summarize the published evidence regarding the association between maternal infection during pregnancy and childhood leukemia. STUDY DESIGN: In this systematic review and meta-analysis (PROSPERO number, CRD42018087289), we searched PubMed and Embase to identify relevant studies. We included human studies that reported associations of at least one measure of maternal infection during pregnancy with acute lymphoblastic leukemia (ALL) or all childhood leukemias in the offspring. One reviewer extracted the data first using a standardized form, and the second reviewer independently checked the data for accuracy. Two reviewers used the Newcastle-Ottawa Scale to assess the quality of included studies. We conducted random effects meta-analyses to pool the ORs of specific type of infection on ALL and childhood leukemia. RESULTS: This review included 20 studies (ALL, n = 15; childhood leukemia, n = 14) reported in 32 articles. Most (>65%) included studies reported a positive association between infection variables and ALL or childhood leukemia. Among specific types of infection, we found that influenza during pregnancy was associated with higher risk of ALL (pooled OR, 3.64; 95% CI, 1.34-9.90) and childhood leukemia (pooled OR, 1.77; 95% CI, 1.01-3.11). Varicella (pooled OR, 10.19; 95% CI, 1.98-52.39) and rubella (pooled OR, 2.79; 95% CI, 1.16-6.71) infections were also associated with higher childhood leukemia risk. CONCLUSIONS: Our findings suggest that maternal infection during pregnancy may be associated with a higher risk of childhood leukemia.
Subject(s)
Leukemia/etiology , Pregnancy Complications, Infectious/epidemiology , Prenatal Exposure Delayed Effects/epidemiology , Child , Female , Global Health , Humans , Incidence , Leukemia/epidemiology , Pregnancy , Risk FactorsABSTRACT
BACKGROUND AND OBJECTIVE: People living with pulmonary fibrosis (PF) report unmet needs for information and support. Lung Foundation Australia (LFA) have developed the Peer Connect Service to facilitate telephone support for people with PF across Australia. This project documented the experiences of participants and the resources required to support the service. METHODS: Consenting participants took part in semi-structured interviews by telephone. Primary peers (peers who agreed to initiate contact) and secondary peers (eligible patients who sought a peer match) were interviewed. Thematic analysis was undertaken by two independent researchers. Data were collected on the number of matches and contacts required to establish each match. RESULTS: Interviews were conducted with 32 participants (16 primary peers, 15 secondary peers and 1 who was both), aged from 53 to 89 years with 56% being male. Major themes included the value of shared experiences, providing mutual support and the importance of shared personal characteristics (e.g. gender and hobbies) in allowing information and emotional support needs to be met. Participants saw face-to-face contact with peers as highly desirable whilst acknowledging the practical difficulties. Primary peers were cognizant that their role was not to provide medical advice but to listen and share experiences. In the 12-month period, 60 peer matches were made, each match requiring a minimum of seven staff contacts. CONCLUSION: The Peer Connect Service provides a unique opportunity for people with PF to share experiences and offer mutual support. This telephone matching model may be useful in providing peer support for individuals with rare diseases who are geographically dispersed.
Subject(s)
Peer Group , Pulmonary Fibrosis/psychology , Social Support , Aged , Aged, 80 and over , Australia , Female , Humans , Male , Middle Aged , Surveys and Questionnaires , TelephoneABSTRACT
OBJECTIVES: To identify exercise tests that are suitable for home-based or remote administration in people with chronic lung disease. METHODS: Rapid review of studies that reported home-based or remote administration of an exercise test in people with chronic lung disease, and studies reporting their clinimetric (measurement) properties. RESULTS: 84 studies were included. Tests used at home were the 6-minute walk test (6MWT, two studies), sit-to-stand tests (STS, five studies), Timed Up and Go (TUG, 4 studies) and step tests (two studies). Exercise tests administered remotely were the 6MWT (two studies) and step test (one study). Compared to centre-based testing the 6MWT distance was similar when performed outdoors but shorter when performed at home (two studies). The STS, TUG and step tests were feasible, reliable (intra-class correlation coefficients >0.80), valid (concurrent and known groups validity) and moderately responsive to pulmonary rehabilitation (medium effect sizes). These tests elicited less desaturation than the 6MWT, and validated methods to prescribe exercise were not reported. DISCUSSION: The STS, step and TUG tests can be performed at home, but do not accurately document desaturation with walking or allow exercise prescription. Patients at risk of desaturation should be prioritised for centre-based exercise testing when this is available.
Subject(s)
Coronavirus Infections , Exercise Test/methods , Home Care Services/organization & administration , Lung Diseases , Pandemics , Pneumonia, Viral , Telemedicine/methods , Betacoronavirus , COVID-19 , Coronavirus Infections/epidemiology , Coronavirus Infections/prevention & control , Humans , Lung Diseases/diagnosis , Lung Diseases/epidemiology , Lung Diseases/rehabilitation , Pandemics/prevention & control , Pneumonia, Viral/epidemiology , Pneumonia, Viral/prevention & control , Reproducibility of Results , SARS-CoV-2ABSTRACT
The "delayed infection hypothesis" states that a paucity of infections in early childhood may lead to higher risks of childhood leukemia (CL), especially acute lymphoblastic leukemia (ALL). Using prospectively collected data from six population-based birth cohorts we studied the association between birth order (a proxy for pathogen exposure) and CL. We explored whether other birth or parental characteristics modify this association. With 2.2 × 106 person-years of follow-up, 185 CL and 136 ALL cases were ascertained. In Cox proportional hazards models, increasing birth order (continuous) was inversely associated with CL and ALL; hazard ratios (HR) = 0.88, 95% confidence interval (CI): (0.77-0.99) and 0.85: (0.73-0.99), respectively. Being later-born was associated with similarly reduced hazards of CL and ALL compared to being first-born; HRs = 0.78: 95% CI: 0.58-1.05 and 0.73: 0.52-1.03, respectively. Successive birth orders were associated with decreased CL and ALL risks (P for trend 0.047 and 0.055, respectively). Multivariable adjustment somewhat attenuated the associations. We found statistically significant and borderline interactions between birth weight (p = 0.024) and paternal age (p = 0.067), respectively, in associations between being later-born and CL, with the lowest risk observed for children born at <3 kg with fathers aged 35+ (HR = 0.18, 95% CI: 0.06-0.50). Our study strengthens the theory that increasing birth order confers protection against CL and ALL risks, but suggests that this association may be modified among subsets of children with different characteristics, notably advanced paternal age and lower birth weight. It is unclear whether these findings can be explained solely by infectious exposures.
Subject(s)
Birth Order , Birth Weight , Paternal Age , Precursor Cell Lymphoblastic Leukemia-Lymphoma/pathology , Adult , Child , Child, Preschool , Cohort Studies , Humans , Multivariate Analysis , Proportional Hazards Models , Registries/statistics & numerical dataABSTRACT
BACKGROUND: Childhood cancer is a rare but leading cause of morbidity and mortality. Established risk factors, accounting for <10% of incidence, have been identified primarily from case-control studies. However, recall, selection and other potential biases impact interpretations particularly, for modest associations. A consortium of pregnancy and birth cohorts (I4C) was established to utilise prospective, pre-diagnostic exposure assessments and biological samples. METHODS: Eligibility criteria, follow-up methods and identification of paediatric cancer cases are described for cohorts currently participating or planning future participation. Also described are exposure assessments, harmonisation methods, biological samples potentially available for I4C research, the role of the I4C data and biospecimen coordinating centres and statistical approaches used in the pooled analyses. RESULTS: Currently, six cohorts recruited over six decades (1950s-2000s) contribute data on 388 120 mother-child pairs. Nine new cohorts from seven countries are anticipated to contribute data on 627 500 additional projected mother-child pairs within 5 years. Harmonised data currently includes over 20 "core" variables, with notable variability in mother/child characteristics within and across cohorts, reflecting in part, secular changes in pregnancy and birth characteristics over the decades. CONCLUSIONS: The I4C is the first cohort consortium to have published findings on paediatric cancer using harmonised variables across six pregnancy/birth cohorts. Projected increases in sample size, expanding sources of exposure data (eg, linkages to environmental and administrative databases), incorporation of biological measures to clarify exposures and underlying molecular mechanisms and forthcoming joint efforts to complement case-control studies offer the potential for breakthroughs in paediatric cancer aetiologic research.
Subject(s)
Child Health , Environmental Exposure/statistics & numerical data , Neoplasms/etiology , Adolescent , Age of Onset , Bias , Child , Child, Preschool , Databases, Factual , Humans , Infant , Infant, Newborn , Life Style , Neoplasms/epidemiology , Odds Ratio , Prospective Studies , Risk Factors , Social Determinants of Health/statistics & numerical dataABSTRACT
BACKGROUND: Evidence relating childhood cancer to high birthweight is derived primarily from registry and case-control studies. We aimed to investigate this association, exploring the potential modifying roles of age at diagnosis and maternal anthropometrics, using prospectively collected data from the International Childhood Cancer Cohort Consortium. METHODS: We pooled data on infant and parental characteristics and cancer incidence from six geographically and temporally diverse member cohorts [the Avon Longitudinal Study of Parents and Children (UK), the Collaborative Perinatal Project (USA), the Danish National Birth Cohort (Denmark), the Jerusalem Perinatal Study (Israel), the Norwegian Mother and Child Cohort Study (Norway), and the Tasmanian Infant Health Survey (Australia)]. Birthweight metrics included a continuous measure, deciles, and categories (≥ 4.0 vs. < 4.0 kilogram). Childhood cancer (377 cases diagnosed prior to age 15 years) risk was analysed by type (all sites, leukaemia, acute lymphoblastic leukaemia, and non-leukaemia) and age at diagnosis. We estimated hazard ratios (HR) and 95% confidence intervals (CI) from Cox proportional hazards models stratified by cohort. RESULTS: A linear relationship was noted for each kilogram increment in birthweight adjusted for gender and gestational age for all cancers [HR = 1.26; 95% CI 1.02, 1.54]. Similar trends were observed for leukaemia. There were no significant interactions with maternal pre-pregnancy overweight or pregnancy weight gain. Birthweight ≥ 4.0 kg was associated with non-leukaemia cancer among children diagnosed at age ≥ 3 years [HR = 1.62; 95% CI 1.06, 2.46], but not at younger ages [HR = 0.7; 95% CI 0.45, 1.24, P for difference = 0.02]. CONCLUSION: Childhood cancer incidence rises with increasing birthweight. In older children, cancers other than leukaemia are particularly related to high birthweight. Maternal adiposity, currently widespread, was not demonstrated to substantially modify these associations. Common factors underlying foetal growth and carcinogenesis need to be further explored.
Subject(s)
Birth Weight , Neoplasms/etiology , Adolescent , Age of Onset , Australia/epidemiology , Child , Child, Preschool , Denmark/epidemiology , Female , Humans , Infant , Infant, Newborn , Israel/epidemiology , Male , Neoplasms/epidemiology , Norway/epidemiology , Odds Ratio , Risk Factors , United Kingdom/epidemiology , United States/epidemiologyABSTRACT
PURPOSE: Lower urinary tract symptoms (LUTS) are very common among older men globally, but evidence regarding the relationship between LUTS and country of origin is limited. This study aimed to investigate the relationship between the prevalence of LUTS and region of birth in a large, ethnically diverse population of older men resident in New South Wales, Australia. METHODS: Data on LUTS, demographic and behavioural factors were collected by postal questionnaire from 2006 to 2009 and analysed for 95,393 men aged 45 and over from the 45 and Up Study, who had not had previous prostate surgery. Logistic regression was used to investigate the association between region of birth and moderate/severe LUTS, ascertained using a modified International Prostate Symptom Score, adjusting for age, income, education, alcohol consumption and smoking. RESULTS: Overall, 18,530 (19.4 %) men had moderate or severe LUTS. Compared to Australian-born men, prevalence of moderate/severe LUTS was significantly higher in men born in the Middle East & North Africa, Southeast Asia and North America regions (adjusted odds ratios (OR) = 1.43; 95 % CI = 1.23-1.66, OR = 1.25; 1.10-1.42, OR = 1.26; 1.05-1.52, respectively), whereas men from the UK & Ireland had significantly lower prevalence (OR = 0.85; 0.80-0.90). Patterns of association were generally similar for storage- and voiding-related types of LUTS. However, participants born in Sub-Saharan Africa showed a significantly elevated prevalence of moderate/severe voiding symptoms (1.22; 1.03-1.45) but not storage symptoms, compared to Australian-born respondents. CONCLUSION: The prevalence of LUTS and of specific subtypes of LUTS varies according to region of birth.
Subject(s)
Birth Certificates , Lower Urinary Tract Symptoms/ethnology , Lower Urinary Tract Symptoms/epidemiology , Severity of Illness Index , Surveys and Questionnaires , Africa, Northern/ethnology , Aged , Aged, 80 and over , Asia, Southeastern/ethnology , Australia/epidemiology , Australia/ethnology , Humans , Lower Urinary Tract Symptoms/physiopathology , Male , Middle Aged , Middle East/ethnology , New South Wales/epidemiology , New South Wales/ethnology , North America/ethnology , Prevalence , Retrospective StudiesABSTRACT
BACKGROUND: Oxygen therapy is prescribed to treat hypoxaemia in people with interstitial lung disease (ILD); however, uptake and adherence remain an ongoing challenge. This systematic review aimed to identify the barriers to and facilitators of use of oxygen therapy in people with ILD, caregivers and health professionals. METHODS: A systematic search for qualitative literature was undertaken using five electronic databases (MEDLINE, CINAHL, Embase, PsycINFO, PubMed). Qualitative analysis identified themes that were mapped to the Theoretical Domains Framework and the Consolidated Framework for Implementation Research and classified as barriers, facilitators or both. RESULTS: A total of 13 studies were eligible for inclusion. Commonly represented domains were associated with the design of the oxygen delivery system, the associated cost, financing, stigmatisation, the physical environment and the individual needs that acted as barriers to and facilitators of the optimisation of oxygen therapy. CONCLUSION: Effective implementation of oxygen therapy in ILD requires more robust evidence to strengthen international guidelines, sustainable and equitable funding models, and improved oxygen delivery systems that meet the needs of users. Increased information and support for users will be critical to optimise the uptake and outcomes of this important therapy.
Subject(s)
Lung Diseases, Interstitial , Oxygen Inhalation Therapy , Humans , Oxygen Inhalation Therapy/adverse effects , Lung Diseases, Interstitial/diagnosis , Lung Diseases, Interstitial/therapy , Environment , Health Personnel , OxygenABSTRACT
BACKGROUND: The most effective method for encouraging self-management in individuals with pulmonary fibrosis (PF) is unclear. This review aimed to identify common self-management components, the outcome measures used and the impact of these components in PF. METHODS: A scoping review was conducted according to the Joanna Briggs Institute Manual for Evidence Synthesis using Medline, Embase, PsychInfo, CINAHL and the Cochrane Central Register of Controlled Trials. Eligible studies included those with educational, behavioural or support components aimed at facilitating self-management among adults with PF and employed quantitative and/or qualitative methods. RESULTS: 87 studies were included. Common self-management components included education (78%), managing physical symptoms (66%) and enhancing psychosocial wellbeing (54%). Components were predominantly delivered in a pulmonary rehabilitation setting (71%). No studies tested a PF-specific self-management package. Common outcome measures were 6-min walk distance (60%), St George's Respiratory Questionnaire (37%) and the Medical Research Council Dyspnoea scale (34%). Clinically significant improvements in these outcomes were seen in ≥50% of randomised controlled trials. Qualitative data highlighted the importance of healthcare professional and peer support and increased confidence in managing PF. CONCLUSION: Self-management components are commonly incorporated into pulmonary rehabilitation programmes rather than being offered as standalone packages. Future research should focus on testing PF-specific self-management packages and employ standardised outcome assessments that include self-efficacy and health-related behaviours.
Subject(s)
Pulmonary Disease, Chronic Obstructive , Pulmonary Fibrosis , Self-Management , Adult , Humans , Quality of Life , Pulmonary Fibrosis/diagnosis , Pulmonary Fibrosis/therapy , Pulmonary Disease, Chronic Obstructive/rehabilitation , Self Care/methodsABSTRACT
Importance: Maternal infection is common during pregnancy and is an important potential cause of fetal genetic and immunological abnormalities. Maternal infection has been reported to be associated with childhood leukemia in previous case-control or small cohort studies. Objective: To evaluate the association of maternal infection during pregnancy with childhood leukemia among offspring in a large study. Design, Setting, and Participants: This population-based cohort study used data from 7 Danish national registries (including the Danish Medical Birth Register, the Danish National Patient Registry, the Danish National Cancer Registry, and others) for all live births in Denmark between 1978 and 2015. Swedish registry data for all live births between 1988 and 2014 were used to validate the findings for the Danish cohort. Data were analyzed from December 2019 to December 2021. Exposures: Maternal infection during pregnancy categorized by anatomic locations identified from the Danish National Patient Registry. Main Outcomes and Measures: The primary outcome was any leukemia; secondary outcomes were acute lymphoid leukemia (ALL) and acute myeloid leukemia (AML). Offspring childhood leukemia was identified in the Danish National Cancer Registry. Associations were first assessed in the whole cohort using Cox proportional hazards regression models, adjusted for potential confounders. A sibling analysis was performed to account for unmeasured familial confounding. Results: This study included 2 222 797 children, 51.3% of whom were boys. During the approximately 27 million person-years of follow-up (mean [SD], 12.0 [4.6] years per person), 1307 children were diagnosed with leukemia (ALL, 1050; AML, 165; or other, 92). Children born to mothers with infection during pregnancy had a 35% increased risk of leukemia (adjusted hazard ratio [HR], 1.35 [95% CI, 1.04-1.77]) compared with offspring of mothers without infection. Maternal genital and urinary tract infections were associated with a 142% and 65% increased risk of childhood leukemia, with HRs of 2.42 (95% CI, 1.50-3.92) and 1.65 (95% CI, 1.15-2.36), respectively. No association was observed for respiratory tract, digestive, or other infections. The sibling analysis showed comparable estimates to the whole-cohort analysis. The association patterns for ALL and AML were similar to that for any leukemia. No association was observed for maternal infection and brain tumors, lymphoma, or other childhood cancers. Conclusions and Relevance: In this cohort study of approximately 2.2 million children, maternal genitourinary tract infection during pregnancy was associated with childhood leukemia among offspring. If confirmed in future studies, our findings may have implications for understanding the etiology and developing preventive measures for childhood leukemia.
Subject(s)
Brain Neoplasms , Leukemia , Child , Male , Pregnancy , Female , Humans , Cohort Studies , Mothers , DenmarkABSTRACT
Rationale: Self-management is considered as an important part of disease management for people with pulmonary fibrosis (PF), but there is a lack of consensus regarding what components should be included. This study aimed to attain consensus from experts in PF and people living with the disease on the essential components and format of a PF self-management package. Methods: A two-round Delphi process was conducted. In each round, a panel of experts completed an online survey to rate a range of components, formats and delivery methods, followed by an online patient focus group to integrate patient perspectives. Consensus was defined a priori. Results: 45 experts participated in Round 1 and 51 in Round 2. Both focus groups included six people with PF. 12 components were considered essential for self-management in PF: 1) understanding treatment options; 2) understanding and accessing clinical trials; 3) managing medications; 4) role of oxygen therapy; 5) role and importance of pulmonary rehabilitation and regular physical activity; 6) managing shortness of breath; 7) managing fatigue; 8) managing mood; 9) managing comorbidities; 10) smoking cessation advice and support; 11) accessing community support; and 12) how to communicate with others when living with PF. Both groups agreed that self-management in PF required individualisation, goal setting and feedback. Conclusion: This study identified 12 essential components and highlighted individualisation, goal setting and feedback in self-management of PF. The findings provide a basis for the development of PF self-management interventions.
ABSTRACT
OBJECTIVE: People with pulmonary fibrosis (PF) consider self-management essential for maintaining health. This study aims to explore the needs and expectations of PF self-management from the patient and healthcare professionals (HCPs) perspectives. METHODS: Semi-structured interviews were conducted with people with PF and HCPs. Purposive sampling was used to recruit participants. Thematic analysis was performed using the principles of grounded theory. RESULTS: 18 individuals with PF and 15 HCPs were interviewed. Common self-management components reported included exercise, nutrition, maintaining healthy mind, avoiding infections, recognising deterioration and seeking help, managing symptoms and treatments, social support, and end-of-life planning. Both groups felt that effective self-management required individualised strategies, supports, and reliable information. People with PF identified access to personal health data and self-acceptance as part of self-management. HCPs highlighted the importance of accessible supports and managing patient expectations of disease course and treatments. Some HCPs concerned about missed detection of deterioration and suggested that self-management strategies for PF may differ to other lung diseases. CONCLUSION: This study identified components important for self-management in PF and provides a basis for designing a PF self-management package. PRACTICE IMPLICATIONS: Self-management of PF can be facilitated with individualised support from HCPs and reliable information that is accessible.
Subject(s)
Pulmonary Fibrosis , Self-Management , Delivery of Health Care , Health Personnel , Humans , Pulmonary Fibrosis/therapy , Qualitative ResearchABSTRACT
BACKGROUND: Previous epidemiological studies have found positive associations between maternal infections and childhood leukaemia; however, evidence from prospective cohort studies is scarce. We aimed to examine the associations using large-scale prospective data. METHODS: Data were pooled from six population-based birth cohorts in Australia, Denmark, Israel, Norway, the UK and the USA (recruitment 1950s-2000s). Primary outcomes were any childhood leukaemia and acute lymphoblastic leukaemia (ALL); secondary outcomes were acute myeloid leukaemia (AML) and any childhood cancer. Exposures included maternal self-reported infections [influenza-like illness, common cold, any respiratory tract infection, vaginal thrush, vaginal infections and urinary tract infection (including cystitis)] and infection-associated symptoms (fever and diarrhoea) during pregnancy. Covariate-adjusted hazard ratio (HR) and 95% confidence interval (CI) were estimated using multilevel Cox models. RESULTS: Among 312â879 children with a median follow-up of 13.6 years, 167 leukaemias, including 129 ALL and 33 AML, were identified. Maternal urinary tract infection was associated with increased risk of any leukaemia [HR (95% CI) 1.68 (1.10-2.58)] and subtypes ALL [1.49 (0.87-2.56)] and AML [2.70 ([0.93-7.86)], but not with any cancer [1.13 (0.85-1.51)]. Respiratory tract infection was associated with increased risk of any leukaemia [1.57 (1.06-2.34)], ALL [1.43 (0.94-2.19)], AML [2.37 (1.10-5.12)] and any cancer [1.33 (1.09-1.63)]; influenza-like illness showed a similar pattern but with less precise estimates. There was no evidence of a link between other infections and any outcomes. CONCLUSIONS: Urinary tract and respiratory tract infections during pregnancy may be associated with childhood leukaemia, but the absolute risk is small given the rarity of the outcome.
Subject(s)
Influenza, Human , Leukemia, Myeloid, Acute , Precursor Cell Lymphoblastic Leukemia-Lymphoma , Acute Disease , Birth Cohort , Child , Female , Humans , Influenza, Human/complications , Influenza, Human/epidemiology , Leukemia, Myeloid, Acute/complications , Leukemia, Myeloid, Acute/epidemiology , Pregnancy , Prospective Studies , Risk FactorsABSTRACT
A number of risk factors including the complement factor H (CFH) gene, smoking and Chlamydia pneumoniae have been associated with age-related macular degeneration (AMD). However, the mechanisms underlying how these risk factors might be involved in disease progression and disease aetiology is poorly understood. A cohort series of 233 individuals followed for AMD progression over a mean period of 7 years underwent a full eye examination, blood was taken for DNA and antibody titre and individuals completed a standard medical and general questionnaire. Y402H variants of the CFH gene were assessed with disease progression as well as examination of interaction between Y402H variants and smoking and Y402H variants and the pathogen C. pneumoniae. The CC risk genotype of Y402H was significantly associated with increased AMD progression [odds ratio (OR) 2.43, 95% confidence interval (95% CI) 1.07-5.49] as was smoking (OR 2.28, 95% CI 1.26-4.12). However, the risk of progression was greatly increased to almost 12-fold (OR 11.8, 95% CI 2.1-65.8) when, in addition to having the C risk allele, subjects also presented with the upper tertile of antibodies to the bacterial pathogen C. pneumoniae compared with those with the T allele of Y402H and the lowest antibody tertile. This demonstrates for the first time the existence of a gene environment-interaction between pathogenic load of C. pneumoniae and the CFH gene in the aetiology of AMD.