Developing a haemodialysis acuity tool (the HAT study): A qualitative study.

BACKGROUND: Haemodialysis units are now managing an increasing number of patients with varying needs and levels of acuity. To maintain safety, haemodialysis patients must be placed in the most appropriate dialysis unit that has the required human and physical resources to care for them. The first step towards achieving these goals is to develop a tool specific to haemodialysis units to effectively measure patient acuity. OBJECTIVE: To develop a haemodialysis acuity tool, utilising a focus group approach, in assessing patient's suitability for a specific dialysis location thus ensuring patient safety. DESIGN: This is a cross-sectional qualitative study via a focus group approach. PARTICIPANTS: Participants were nurse unit managers and team leaders of a District Renal Service. APPROACH: Participants were interviewed to explore their views on the elements and measures identified in the research aims. Themes for interviews were informed by current literature on acuity tools for haemodialysis patients' admission to the dialysis units. Interviews were recorded and transcribed verbatim and progressively analysed using a thematic analysis approach. RESULTS: Ten nurse unit managers/team leaders (100%) were interviewed and thematic analysis of the transcripts was conducted utilising the deductive approach. Five themes were identified which will form the main categories in the development of the tool, namely: Age/frailty; co-morbidity; physical; dialysis; and psychosocial. CONCLUSION: This study is instrumental in the development of the haemodialysis acuity tool which can be used in allocating dialysis location specific to patient's needs and available resources. The tool can also be used in analysing patient care processes and resource requirements based on the patients' and unit's profile.

Longitudinal symptom profile of palliative care patients receiving a nurse-led end-of-life (PEACH) programme to support preference to die at home.

OBJECTIVES: Tailored models of home-based palliative care aimed to support death at home, should also ensure optimal symptom control. This study aimed to explore symptom occurrence and distress over time in Palliative Extended And Care at Home (PEACH) model of care recipients. DESIGN: This was a prospective cohort study. SETTING AND PARTICIPANTS: Participants were consecutive recipients of the PEACH rapid response nurse-led model of care in metropolitan Sydney (December 2013-January 2017) who were in the last weeks of life with a terminal or deteriorating phase of illness and had a preference to be cared or die at home. OUTCOME MEASURES: Deidentified data including sociodemographic and clinical characteristics, and symptom distress scores (Symptom Assessment Score) were collected at each clinical visit. Descriptive statistics and forward selection logistic regression analysis were used to explore influence of symptom distress levels on mode of separation ((1) died at home while still receiving a PEACH package, (2) admitted to a hospital or an inpatient palliative care unit or (3) discharged from the package (alive and no longer requiring PEACH)) across four symptom distress level categories. RESULTS: 1754 consecutive clients received a PEACH package (mean age 70 years, 55% male). 75.7% (n=1327) had a home death, 13.5% (n=237) were admitted and 10.8% (n=190) were still alive and residing at home when the package ceased. Mean symptom distress scores improved from baseline to final scores in the three groups (p<0.0001). The frequency of no symptom distress score (0) category was higher in the home death group. Higher scores for nausea, fatigue, insomnia and bowel problems were independent predictors of who was admitted. CONCLUSION: Tailored home-based palliative care models to meet preference to die at home, achieve this while maintaining symptom control. A focus on particular symptoms may further optimise these models of care.

Factors Associated With Mode of Separation for People With Palliative Diagnoses With Preference for Home Death Receiving Care From a Nurse-Led End of Life (Palliative Extended and Care at Home) Program.

Palliative Extended and Care at Home (PEACH) is a rapid response nurse-led package of care mobilized for palliative care patients who have an expressed preference to die at home. This study aimed to identify the demographic and clinical predictors of home death for patients receiving the package. Deidentified data were used from administrative and clinical information systems. Univariate and multivariate analyses were conducted to assess association of sociodemographic factors with mode of separation. Furthermore, 1754 clients received the PEACH package during the study period. Mode of separation was home death (75.7%), hospital/palliative care unit admission (13.5%), and alive/discharged from the PEACH Program (10.8%). Of participants with clear preference to die at home, 79% met their wish. Multivariate analysis demonstrated cancer diagnosis, patients who wished to be admitted when death was imminent, and patients with undecided preference for location of death were associated with an increased likelihood of being admitted to the hospital. Compared with those with spousal caregivers, those cared for by their child/grandchild and other nonspouse caregivers were significantly associated with a decreased likelihood of being admitted to the hospital/palliative care unit. Our results show that opportunities to tailor home care based on referral characteristics to meet patient preference to die at home, at individual, system, and policy levels, exist.

A descriptive study of the clinical impacts on COVID-19 survivors using telemonitoring (The TeleCOVID Study).

Background: There is increasing evidence that COVID-19 survivors are at increased risk of experiencing a wide range of cardiovascular complications post infection; however, there are no validated models or clear guidelines for remotely monitoring the cardiac health of COVID-19 survivors. Objective: This study aims to test a virtual, in-home healthcare monitoring model of care for detection of clinical symptoms and impacts on COVID-19 survivors. It also aims to demonstrate system usability and feasibility. Methods: This open label, prospective, descriptive study was conducted in South Western Sydney. Included in the study were patients admitted to the hospital with the diagnosis of COVID-19 between June 2021 and November 2021. Eligible participants after consent were provided with a pulse oximeter to measure oxygen saturation and a S-Patch EX to monitor their electrocardiogram (ECG) for a duration of 3 months. Data was transmitted in real-time to a mobile phone via Bluetooth technology and results were sent to the study team via a cloud-based platform. All the data was reviewed in a timely manner by the investigator team, for post COVID-19 related symptoms, such as reduction in oxygen saturation and arrhythmia. Outcome measure: This study was designed for feasibility in real clinical setting implementation, enabling the study team to develop and utilise a virtual, in-home healthcare monitoring model of care to detect post COVID-19 clinical symptoms and impacts on COVID-19 survivors. Results: During the study period, 23 patients provided consent for participation. Out of which 19 patients commenced monitoring. Sixteen patients with 81 (73.6%) valid tests were included in the analysis and amongst them seven patients were detected by artificial intelligence to have cardiac arrhythmias but not clinically symptomatic. The patients with arrhythmias had a higher occurrence of supraventricular ectopy, and most of them took at least 2 tests before detection. Notably, patients with arrhythmia had significantly more tests than those without [t-test, t (13) = 2.29, p < 0.05]. Conclusions: Preliminary observations have identified cardiac arrhythmias on prolonged cardiac monitoring in 7 out of the first 16 participants who completed their 3 months follow-up. This has allowed early escalation to their treating doctors for further investigations and early interventions.

Telemonitoring for health education and self-management in South Western Sydney.

BACKGROUND: Telemonitoring (TM) plays an important role in the self-management of chronic diseases. This study aimed to assess the feasibility of TM in early stages of chronic care for self-management and recognition of signs and symptoms of exacerbation, with a view to completing the TM program in an optimal timeframe to encourage independence and self-management. METHODS: This study was conducted from 2019 to 2020. Included in the study were patients with chronic conditions at an early stage of their disease residing in the South Western Sydney region. Eligible patients were allocated a TM device for 6months. Their routine tests data were sent in real time to health care professionals. Following assessment by a TM coordinator, suitable patients were off-boarded (deactivation of monitoring device) after 6months. Data on hospitalisation/emergency department presentation and surveys were collected to assess the impact of TM on the level of the patient's understanding of their signs and symptoms of exacerbation, self-care, and quality of life. RESULTS: Out of 44 patients approached, seven were off-boarded at the 6-month timeframe. The follow-up data on the hospitalisation/emergency department presentation during monitoring and 12months post off-boarding showed a reduction in the frequency of hospitalisation/nil admissions. Patients reported an increased understanding of their health condition and confidence in managing their own health with the support of TM. CONCLUSION: The result demonstrates the feasibility of TM as a tool for health education and self-management in the coordination of care for chronic disease patients; however, the small sample size was a limitation.

Understanding the general practice of telemonitoring integrated care: a qualitative perspective.

Developed in partnership with GPs, a new telehealth model of care using remote monitoring, known as telemonitoring (TM), was introduced in South Western Sydney (SWS) in 2015, transmitting clinical readings taken at home to telehealth coordinators. This study explored the experiences, beliefs and attitudes of general practice staff to identify barriers to and facilitators of the SWS TM model. Responses were collected from a purposive sample of 10 participants via semistructured interviews (n = 9 interview sessions) and the resulting transcripts were analysed thematically. Four themes were identified: lack of understanding and involvement; patient-centred care and empowerment; clinical practice and process factors; and system-wide communication and collaboration. Participants recognised some actual and potential benefits of TM, but barriers to TM were identified across all themes. Feedback provided by participants has informed the ongoing formulation of a more 'GP-led' model of TM.

CFTR Gene Mutations and Asthma in Indian Children: A Case-Control Study.

Cystic Fibrosis Trans membrane conductance regulator (CFTR) gene is an asthma susceptibility gene. In the present study we investigated the possible association of CFTR gene mutations in Indian asthmatic children as compared to controls. The study included 250 asthmatics and 250 age and sex matched controls. Case to control ratio for sample size was 1:1. Genotyping was performed for 24 CFTR gene mutations by ARMS-PCR and PCR-RFLP method. Among 24 CFTR gene mutations, heterozygous allele of R553X mutation was found in 4 (1.6 %) asthmatic cases and 2 (0.8 %) controls. Value of FVC and FEV1/FVC ratio were significantly lower in heterozygous individuals (p value <0.05). No significant difference was observed in the genotype and allele frequency of R553X mutation (OR = 1.339, 95 % CI = 0.755-2.374, p value = 0.685). Furthermore, all wild type homozygous alleles were observed in remaining 23 CFTR gene mutations. Our data concludes that R553X mutation was not significantly associated in Indian asthmatic children.

Higher sweat chloride levels in patients with asthma: a case-control study.

OBJECTIVES: To screen asthmatic patients by sweat chloride test to identify proportion with Cystic Fibrosis (CF); (Sweat chloride level >60 mmol/L). Also, to compare sweat chloride levels between cases of bronchial asthma and age and sex matched healthy children aged 5 mo-15 y. METHODS: The present case-control study was conducted in a tertiary care hospital in India. Cases of bronchial asthma, diagnosed by GINA guideline 2008, and age matched healthy controls were included. Case to control ratio was 2:1. Sweat Chloride test was done by Pilocarpine Iontophoresis method. RESULTS: From April 2010 through May 2012, 216 asthmatics and 112 controls were recruited. Among asthmatics, there was no case of Cystic Fibrosis. Mean sweat chloride levels in asthmatics was 22.39 ± 8.45 mmol/L (inter-quartile range - 15-28 mmol/L) and in controls 19.55 ± 7.04 mmol/L (inter-quartile range - 15-23.5 mmol/L) (p value = 0.048). CONCLUSIONS: No Cystic Fibrosis case was identified among asthmatics. Mean sweat chloride levels were higher in asthmatics as compared to controls.

Spectrum and distribution of CFTR gene mutations in asthma and chronic pancreatitis cases of North Indian population.

BACKGROUND: Cystic fibrosis transmembrane conductance regulator (CFTR) gene accounts for an autosomal recessive condition called cystic fibrosis (CF). In the Indian subcontinent, CF and its related diseases are under-diagnosed by the medical community due to poor knowledge of the disease and its confounding diagnosis, and also due to poor medical facilities available for these patients, thus causing an increased infant mortality rate with a low life expectancy in general. The aim of the study was to document the spectrum and distribution of CFTR mutations in controls, asthma and chronic pancreatitis cases of North India. METHODS: A total of 800 subjects including 400 controls, 250 asthma cases and150 chronic pancreatitis cases were analyzed for 6 mutations (F508del, G542X, G551D, R117H, W1282X, and S549N) and IVS8 Tn polymorphism. RESULTS: Out of 800 subjects, 18% [asthma - 24% (n=250), CP - 29.33% (n=150) cases and controls - 9.3% (n=400)] were positive for heterozygous mutation, 0.8% of the (n=250) asthmatic cases (n=250) were homozygous for IVS8 T5 polymorphism while no subjects were found positive for W1282X mutation. T5 polymorphism was more common in asthmatic cases while F508del mutation in chronic pancreatitis cases. The carrier frequency of F508del, G542X, G551D, R117H, S549N and T5 was 0.015, 0.025, 0.02, 0.005, 0.005, and 0.022 respectively. The cumulative carrier frequency was 0.093. CONCLUSION: CFTR mutations were underestimated in Indian population. The present study will serve in establishment of genetic screening and prenatal setup for Indian population.

Association of CFTR gene mutation with bronchial asthma.

Mutation on both the copies of cystic fibrosis transmembrane conductance regulator (CFTR) gene results in cystic fibrosis (CF), which is a recessively transmitted genetic disorder. It is hypothesized that individuals heterozygous for CFTR gene mutation may develop obstructive pulmonary diseases like asthma. There is great heterogeneity in the phenotypic presentation and severity of CF lung disease. This could be due to genetic or environmental factors. Several modifier genes have been identified which may directly or indirectly interact with CFTR pathway and affect the severity of disease. This review article discusses the information related to the association of CFTR gene mutation with asthma. Association between CFTR gene mutation and asthma is still unclear. Report ranges from studies showing positive or protective association to those showing no association. Therefore, studies with sufficiently large sample size and detailed phenotype are required to define the potential contribution of CFTR in the pathogenesis of asthma.

Environmental risk factors for persistent asthma in Lucknow.

OBJECTIVE: To identify the risk factors for persistent asthma among common environmental exposures, like ambient air pollutants and second hand smoke, animals, place of residence, decreased ventilation, dust, as well as history of allergic conditions like rhinitis, dermatitis and family history of asthma in children. METHODS: This hospital-based, cross-sectional study was conducted after institutional ethical clearance. Children aged 1-12 y with asthma were recruited after parental consent. Children were classified into asthma severity categories according to GINA 2002 and level of control categories according to GINA 2009 guidelines. Adjusted logistic regression analysis was used to identify factors associated with persistent asthma. RESULTS: From August 2008 through October 2010, 205 asthmatic children were recruited of which 73 (35.60 %) had intermittent and 132 (64.40 %) had persistent asthma. Asthma was controlled in 19 (9.26 %), partly controlled in 90 (43.90 %) and uncontrolled in 96 (46.82 %). Patients with persistent asthma were more likely to have uncontrolled asthma (OR = 8.28; 95 % CI: 2.43-31.01; p < 0.001). Adjusting for age, sex, socioeconomic status and place of residence, persistent asthma was associated with residence within 1.5 km from heavy traffic (OR = 4.58; 95%CI: 2.18-9.59; p < 0.001) and father smoking indoors >5 cigarettes or "bidi"/day (OR = 17.76; 95 % CI: 1.85-170.76; p = 0.01). CONCLUSIONS: Since patients with persistent asthma are more likely to have uncontrolled asthma and since persistent asthma is associated with residence closer to heavy traffic and exposure to second hand smoke, minimizing exposures to these may help in better asthma control.

Association of S549N and IVS8-5T splice variants with bronchial asthma and its severity in Indian children.

BACKGROUND: Cystic fibrosis transmembrane conductance regulator (CFTR) is an asthma susceptibility gene. Individuals heterozygous for CFTR gene mutation may develop obstructive pulmonary disease like bronchial asthma. AIM AND OBJECTIVE: To find out the association of S549N and IVS8-5T variants of the CFTR gene with bronchial asthma and its severity and to assess the combinational effect of S549N and IVS8-5T variants on severity of disease. MATERIALS AND METHODS: Included were 250 clinically diagnosed bronchial asthma cases aged 5 months to 15 years and 250 age- and sex-matched controls. All cases were further categorized into four different categories as per Global Initiative for Asthma criteria (GINA) guidelines: mild intermittent (83), mild persistent (96), moderate persistent (52), and severe persistent (19). Screening for S549N and 5T variants was done using the polymerase chain reaction-restriction fragment length polymorphism method. RESULT: The proportion of IVS8-5T variant was found significantly higher in cases (10.8%) as compared with controls (2.4%) (p=0.001); however, no significant difference in the proportion of S549N was observed among cases (2.0%) and controls (0.8%) (p=0.447). Individuals mutant for IVS8-5T variant had increased risk for persistent asthma (p=0.000). DISCUSSION: We conclude that IVS8-5T variant is associated with bronchial asthma and can also increase severity of the disease.

Association of CFTR gene mutation with bronchial asthma and its severity in Indian children: a case-control study.

BACKGROUND: Asthma is a complex genetic disorder. Several genes have been found associated with asthma. The cystic fibrosis transmembrane conductance regulator (CFTR) gene is one of them. AIM: To assess the association of CFTR gene mutation with asthma and its severity as per GINA guidelines. SUBJECTS AND METHODS: This was a hospital-based case-control study. Excluded from cases and controls were those with clinically suspected cystic fibrosis or sweat chloride level>60 mmol/L or suffering from other respiratory diseases. Included were 200 cases and 180 controls, aged 5 months to 15 years. Screening was done for CFTR gene mutations; ΔF508, G542X, G551D, R117H and W1282X using the ARMS-PCR method. RESULTS: ΔF508 was found in three (1.5%) cases and two (1.1%) controls (p = 0.739), G542X in nine (4.5%) cases and five (2.8%) controls (p = 0.374), R117H in one (0.5%) case and one (0.6%) control (p = 0.940) and G551D in twelve (6.0%) cases and two (1.1%) controls (p = 0.012). Individuals carrier for G551D mutation had increased risk for persistent asthma (p = 0.006). Percent predicted FEV1 (p = 0.014) and FVC (p = 0.028) were significantly lower among carriers as compared to non-carriers. CONCLUSION: Significantly higher frequency of G551D mutation among asthma patients compared with controls suggests that this mutation may increase risk for the disease and also its severity.