Primary immunodeficiency diseases (PIDs) are chronic diseases that affect the various aspects of a patient's life. However, the impact of living with PIDs is poorly described.
This study aimed to ...explore the living experience challenges among the Malaysian caregivers of the patients with PID who underwent a follow-up in the Universiti Sains Malaysia or those registered members of the Malaysian PIDs Society.
The study was conducted from March 1 to May 30, 2021. The parents of children with PIDs were invited to participate for a semi-structured in-depth interview at the PID clinics in the USM. The estimated time of each interview was 30 min. The semi-structured interview was performed
a telephone call because of COVID-19 pandemic restrictions. The audio recording of each interview was transcribed and translated from Malay to English. Subsequently, a thematic analysis utilizing the ATLAS.ti software was performed.
The thematic analysis revealed five main themes, which are living with fear and anxiety with four sub-themes (sickness, psychological issues, fear of infections and hereditary issues), PID healthcare support struggles with four sub-themes (PID health system, treatment, diagnosis and financial issues), knowledge with two sub-themes (educational issues and disease understanding), social constraint with two sub-themes (relationships and social isolations) and coping with three sub-themes (acceptance, child health improvement and emotional hygiene).
Living with fear and anxiety is a major theme impacting the living experiences of Malaysian patients with PIDs. Improvements in healthcare delivery and disease education are needed to ensure optimal quality of life.
Climate change and environmental factors such as air pollution and loss of biodiversity are known to have a major impact not only on allergic diseases but also on many noncommunicable diseases. ...Coronavirus disease 2019 (COVID-19) resulted in many environmental changes during the different phases of the pandemic. The use of face masks, enhanced hand hygiene with hand rubs and sanitizers, use of personal protective equipment (gowns and gloves), and safe-distancing measures, reduced the overall incidence of respiratory infections and other communicable diseases. Lockdowns and border closures resulted in a significant reduction in vehicular traffic and hence environmental air pollution. Paradoxically, the use of personal protective equipment and disposables contributed to an increase in environmental waste disposal and new problems such as occupational dermatoses, especially among healthcare workers. Environmental changes and climate change over time may impact the exposome, genome, and microbiome, with the potential for short- and long-term effects on the incidence and prevalence of the allergic disease. The constant use and access to mobile digital devices and technology disrupt work-life harmony and mental well-being. The complex interactions between the environment, genetics, immune, and neuroendocrine systems may have short- and long-term impact on the risk and development of allergic and immunologic diseases in the future.
An increase in the prevalence of allergic rhinitis (AR) worldwide presents a significant burden to the health care system. An initiative was started in Europe designated as Allergic Rhinitis and Its ...Impact on Asthma (ARIA) to develop internationally applicable guidelines by utilising an evidence-based approach to address this crucial issue. The efforts are directed at empowerment of patients for self-management, the use of digital mobile technology to complement and personalise treatment, and establishment of real-life integrated care pathways (ICPs). This guideline includes aspects of patients' and health care providers' management and covers the main areas of treatment for AR. The model provides better real-life health care than the previous traditional models. This review summarises the ARIA next-generation guideline in the context of the Malaysian health care system.
Background: Allergic rhinitis is an IgE-mediated inflammation of the nasal mucosa. The management of allergic rhinitis has not changed much over the years and is still largely dependent on the use of ...oral antihistamine and intranasal corticosteroids, as many studies had advocated their use. Honey is proven in its anti-inflammatory, anti-bacterial and anti-oxidant properties and has been found to be useful for treatment of inflammation. We aimed to determine the efficacy of intranasal honey spray as an adjunct treatment of allergic rhinitis.
Method: Patients were recruited from November 2015 to July 2016. Thirty moderate to severe persistent allergic rhinitis patients with positive skin prick tests were divided randomly into a control and a trial group. Both groups received standard medication (intranasal corticosteroids and oral antihistamines). In addition, the trial group received intranasal honey spray as an adjunctive daily dose. Patients were assessed using SNOT22 questionnaires at 0, 2nd and 6th weeks of the study with the focus on the primary symptoms of nasal blockage, rhinorrhoea and sneezing.
Results: There was an overall improvement of total SNOT 22 score and each symptom score of nasal blockage, rhinorrhoea and sneezing together with the total serum IgE level in both groups at the end of 6 weeks. However, the improvement was seen more consistently in the trial group as evidenced by the reduction of estimated mean score of all measured outcomes.
Conclusion: Intranasal honey spray has beneficial effects as an adjunct treatment in moderate to severe persistent allergic rhinitis by acting as a protective mucous layer in reducing the attachment of allergen to the nasal mucosa.
•Limited data exist regarding routine use of partially hydrolyzed formula (pHF).•Our systematic review noted that studies show no evidence of harm but limited benefits of such use.•There is expert ...consensus that routine use of pHF results in normal growth.•Residual allergenicity, tolerability, and effectiveness among available pHF products differ.•Cost-effectiveness cannot be appreciated because cost of pHF varies in different countries.
Guidance and evidence supporting routine use of partially hydrolyzed formula (pHF) versus intact cows’ milk protein (CMP) formula are limited in non-exclusively breastfed infants. The aim of this review was to better clarify issues of routine use of pHF in non-exclusively breastfed infants who are not at risk for allergic disease by using a systematic review and Delphi Panel consensus.
A systematic review and Delphi consensus panel (consisting of eight8 international pediatric allergists and gastroenterologists) was conducted to evaluate evidence supporting growth, tolerability, and effectiveness of pHF in non-exclusively breastfed infants.
None of the studies reviewed identified potential harm of pHF use compared with CMP in non-exclusively breastfed infants. There was an expert consensus that pHF use is likely as safe as intact CMP formula, given studies suggesting these have comparable nutritional parameters. No high-quality studies were identified evaluating the use of pHF to prevent allergic disease in non-exclusively breastfed infants who are not at risk for allergic disease (e.g., lacking a parental history of allergy). Limited data suggest that pHF use in non-exclusively breastfed infants may be associated with improved gastric emptying, decreased colic incidence, and other common functional gastrointestinal symptoms compared with CMP. However, because the data are of insufficient quality, the findings from these studies have to be taken with caution. No studies were identified that directly compared the different types of pHF, but there was an expert consensus that growth, allergenicity, tolerability, effectiveness, and clinical role among such pHF products may differ.
Limited data exist evaluating routine use of pHFs in non-exclusively breastfed infants, with no contraindications identified in the systematic review. An expert consensus considers pHFs for which data were available to be as safe as CMP formula as growth is normal. The preventive effect on allergy of pHF in infants who are not at risk for allergic disease has been poorly studied. Cost of pHF versus starter formula with intact protein differs from country to country. However, further studies in larger populations are needed to clinically confirm the benefits of routine use of pHF in non-exclusively breastfed infants. These studies should also address potential consumer preference bias.
The most common autosomal form of Chronic Granulomatous Disease, p47-phox deficient CGD, generally features a GT (deltaGT) deletion in the GTGT sequence at the start of exon 2 on the NCF-1 gene. This ...consistency is due to the coexistence of and the recombination between 2 homologous pseudogenes (psi s) and NCF-1. The GTGT: deltaGT ratio mirrors the NCF-I: NCF-1 psi ratio and is 2:4 in normal individuals.
To determine the molecular basis of the Autosomal-CGD in a family with 2 children, a male and female, affected by the disease. The female patient suffered recurrent infection, retinitis pigmentosa and discoid lupus.
Chemiluminescence (CL) was used to study the respiratory burst, while genetic analysis was done by RT-PCR, PCR, deltaGT and the 20bp gene scans.
The CL response of the patient was profoundly low. The patient's p47-phox band was absent in the RT-PCR for NADPH-oxidase component mRNAs. The deltaGT scan showed that the patient's GTGT: deltaGT ratio was 0:6, the parents' and the younger brother's was 1:5 and the younger sister's was 2:4. Examination of other NCF-1/ NCF-1 psi s differences showed that the father had a compound deltaGT allele ie. deltaGT-20bp, inherited by the patient, and that both parents had compound GTGT alleles with a single 30bp segment in intron 1.
The patient was a classic, homozygous deltaGT p47-phox deficient CGD with one allele harbouring a compound deltaGT-20bp gene. The deltaGT and 20bp gene scans offer a relatively simple and efficient means of defining a p47-phox deficient CGD patient.
Breastfeeding is best for infants and the World Health Organization recommends exclusive breastfeeding for at least the first 6 months of life. For those who are unable to be breastfed, previous ...studies demonstrate that feeding high-risk infants with hydrolyzed formulas instead of cow's milk formula (CMF) may decrease the risk of atopic dermatitis (AD).
To estimate the economic impact of feeding high-risk, not exclusively breastfed, urban Malaysian infants with partiallyhydrolyzed whey-based formula (PHF-W) instead of CMF for the first 17 weeks of life as an AD risk reduction strategy.
A cohort Markov model simulated the AD incidence and burden from birth to age 6 years in the target population fed with PHF-W vs. CMF. The model integrated published clinical and epidemiologic data, local cost data, and expert opinion. Modeled outcomes included AD-risk reduction, time spent post AD diagnosis, days without AD flare, quality-adjusted life years (QALYs), and costs (direct and indirect). Outcomes were discounted at 3% per year. Costs are expressed in Malaysian Ringgit (MYR; MYR 1,000 = United States dollar US $316.50).
Feeding a high-risk infant PHF-W vs. CMF resulted in a 14% point reduction in AD risk (95% confidence interval CI, 3%-23%), a 0.69-year (95% CI, 0.25-1.10) reduction in time spent post-AD diagnosis, additional 38 (95% CI, 2-94) days without AD flare, and an undiscounted gain of 0.041 (95% CI, 0.007-0.103) QALYs. The discounted AD-related 6-year cost estimates when feeding a high-risk infant with PHF-W were MYR 1,758 (US $556) (95% CI, MYR 917-3,033) and with CMF MYR 2,871 (US $909) (95% CI, MYR 1,697-4,278), resulting in a per-child net saving of MYR 1,113 (US $352) (95% CI, MYR 317-1,884) favoring PHF-W.
Using PHF-W instead of CMF in this population is expected to result in AD-related costs savings.
Background
The coronavirus disease 2019 (COVID‐19) has evolved into a pandemic infectious disease transmitted by the severe acute respiratory syndrome coronavirus (SARS‐CoV‐2). Allergists and other ...healthcare providers (HCPs) in the field of allergies and associated airway diseases are on the front line, taking care of patients potentially infected with SARS‐CoV‐2. Hence, strategies and practices to minimize risks of infection for both HCPs and treated patients have to be developed and followed by allergy clinics.
Method
The scientific information on COVID‐19 was analysed by a literature search in MEDLINE, PubMed, the National and International Guidelines from the European Academy of Allergy and Clinical Immunology (EAACI), the Cochrane Library, and the internet.
Results
Based on the diagnostic and treatment standards developed by EAACI, on international information regarding COVID‐19, on guidelines of the World Health Organization (WHO) and other international organizations, and on previous experience, a panel of experts including clinicians, psychologists, IT experts, and basic scientists along with EAACI and the “Allergic Rhinitis and its Impact on Asthma (ARIA)” initiative have developed recommendations for the optimal management of allergy clinics during the current COVID‐19 pandemic. These recommendations are grouped into nine sections on different relevant aspects for the care of patients with allergies.
Conclusions
This international Position Paper provides recommendations on operational plans and procedures to maintain high standards in the daily clinical care of allergic patients while ensuring the necessary safety measures in the current COVID‐19 pandemic.
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