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2.
BMC Health Serv Res ; 24(1): 327, 2024 Mar 12.
Artículo en Inglés | MEDLINE | ID: mdl-38475801

RESUMEN

BACKGROUND: In Malaysia, asthma is a common chronic respiratory illness. Poor asthma control may increase out-of-pocket payment for asthma care, leading to financial hardships Malaysia provides Universal Health Coverage for the population with low user fees in the public health system to reduce financial hardship. We aimed to determine out-of-pocket expenditure on outpatient care for adult patients with asthma visiting government-funded public health clinics. We examined the catastrophic impact and medical impoverishment of these expenses on patients and households in Klang District, Malaysia. METHODS: This is a cross-sectional face-to-face questionnaire survey carried out in six government-funded public health clinics in Klang District, Malaysia. We collected demographic, socio-economic profile, and outpatient asthma-related out-of-pocket payments from 1003 adult patients between July 2019 and January 2020. Incidence of catastrophic health expenditure was estimated as the proportion of patients whose monthly out-of-pocket payments exceeded 10% of their monthly household income. Incidence of poverty was calculated as the proportion of patients whose monthly household income fell below the poverty line stratified for the population of the Klang District. The incidence of medical impoverishment was estimated by the change in the incidence of poverty after out-of-pocket payments were deducted from household income. Predictors of catastrophic health expenditure were determined using multivariate regression analysis. RESULTS: We found the majority (80%) of the public health clinic attendees were from low-income groups, with 41.6% of households living below the poverty line. About two-thirds of the attendees reported personal savings as the main source of health payment. The cost of transportation and complementary-alternative medicine for asthma were the main costs incurred. The incidences of catastrophic expenditure and impoverishment were 1.69% and 0.34% respectively. The only significant predictor of catastrophic health expenditure was household income. Patients in the higher income quintiles (Q2, Q3, Q4) had lower odds of catastrophic risk than the lowest quintile (Q1). Age, gender, ethnicity, and poor asthma control were not significant predictors. CONCLUSION: The public health system in Malaysia provides financial risk protection for adult patients with asthma. Although patients benefited from the heavily subsidised public health services, this study highlighted those in the lowest income quintile still experienced financial catastrophe and impoverishment, and the risk of financial catastrophe was significantly greater in this group. It is crucial to ensure health equity and protect patients of low socio-economic groups from financial hardship.


Asunto(s)
Composición Familiar , Gastos en Salud , Adulto , Humanos , Estudios Transversales , Malasia , Salud Pública , Enfermedad Catastrófica , Enfermedad Crónica
3.
PLoS One ; 19(1): e0296498, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-38206925

RESUMEN

INTRODUCTION: Allopurinol, the first-line treatment for chronic gout, is a common causative drug for severe cutaneous adverse reactions (SCAR). HLA-B*58:01 allele was strongly associated with allopurinol-induced SCAR in Asian countries such as Taiwan, Japan, Thailand and Malaysia. HLA-B*58:01 screening before allopurinol initiation is conditionally recommended in the Southeast-Asian population, but the uptake of this screening is slow in primary care settings, including Malaysia. This study aimed to explore the views and experiences of primary care doctors and patients with gout on implementing HLA-B*58:01 testing in Malaysia as part of a more extensive study exploring the feasibility of implementing it routinely. METHODS: This qualitative study used in-depth interviews and focus group discussions to obtain information from patients with gout under follow-up in primary care and doctors who cared for them. Patients and doctors shared their gout management experiences and views on implementing HLA-B*58:01 screening in primary care. Data were coded and analysed using thematic analysis. RESULTS: 18 patients and 18 doctors from three different healthcare settings (university hospital, public health clinics, private general practitioner clinics) participated. The acceptability to HLA-B*58:01 screening was good among the doctors and patients. We discovered inadequate disclosure of severe side effects of allopurinol by doctors due to concerns about medication refusal by patients, which could potentially be improved by introducing HLA-B*58:01 testing. Barriers to implementation included out-of-pocket costs for patients, the cost-effectiveness of this implementation, lack of established alternative treatment pathway besides allopurinol, counselling burden and concern about genetic data security. Our participants preferred targeted screening for high-risk populations instead of universal screening. CONCLUSION: Implementing HLA-B*58:01 testing in primary care is potentially feasible if a cost-effective, targeted screening policy on high-risk groups can be developed. A clear treatment pathway for patients who test positive should be made available.


Asunto(s)
Efectos Colaterales y Reacciones Adversas Relacionados con Medicamentos , Gota , Humanos , Alopurinol/efectos adversos , Gota/tratamiento farmacológico , Gota/genética , Antígenos HLA-B/genética , Efectos Colaterales y Reacciones Adversas Relacionados con Medicamentos/tratamiento farmacológico , Tailandia , Atención Primaria de Salud
4.
J Glob Health ; 13: 04099, 2023 Oct 27.
Artículo en Inglés | MEDLINE | ID: mdl-37883199

RESUMEN

Background: The COVID-19 pandemic has underscored the importance of remote healthcare and home-based interventions, including pulmonary rehabilitation, for patients with chronic respiratory diseases (CRDs). It has also heightened the vulnerability of individuals with underlying respiratory conditions to severe illness from COVID-19, necessitating exploration and assessment of the feasibility of delivering home - pulmonary rehabilitation (home-PR) programmes for CRD management in Malaysia and other countries. Home-based programmes offer a safer alternative to in-person rehabilitation during outbreaks like COVID-19 and can serve as a valuable resource for patients who may be hesitant to visit healthcare facilities during such times. We aimed to assess the feasibility of delivering a home-PR programme for patients with CRDs in Malaysia. Methods: We recruited patients with CRDs from two hospitals in Klang Valley, Malaysia to a home-PR programme. Following centre-based assessment, patients performed the exercises at home (five sessions/week for eight weeks (total 40 sessions)). We monitored the patients via weekly telephone calls and asked about adherence to the programme. We measured functional exercise capacity (6-Minutes Walking Test (6MWT) and Health-Related Quality-of-Life (HRQoL) (COPD Assessment Test (CAT)) at baseline and post-PR at nine weeks. We conducted semi-structured interviews with 12 purposively sampled participants to explore views and feedback on the home-PR programme. The interviews were audio recorded, transcribed verbatim, and analysed thematically. Results: We included 30 participants; two withdrew due to hospitalisation. Although 28 (93%) adhered to the full programme, only 11 (37%) attended the post-PR assessment because COVID-19 movement restrictions in Malaysia at that time prevented attendance at the centre. Four themes emerged from the qualitative analysis: involvement of family and caregivers, barriers to home-PR programme, interactions with peers and health care professionals, and programme enhancement. Conclusion: Despite the COVID-19 pandemic, the home-PR programme proved feasible for remote delivery, although centre-based post-PR assessments were not possible. Family involvement played an important role in the home-PR programme. The delivery of this programme can be further improved to maximise the benefit for patients.


Asunto(s)
COVID-19 , Trastornos Respiratorios , Humanos , Malasia , Estudios de Factibilidad , Pandemias
5.
BMC Med Inform Decis Mak ; 23(1): 194, 2023 09 27.
Artículo en Inglés | MEDLINE | ID: mdl-37759184

RESUMEN

BACKGROUND: Digital technology tailored for those with limited health literacy has the potential to reduce health inequalities. Although mobile apps can support self-management in chronic diseases, there is little evidence that this approach applies to people with limited health literacy. We aimed to determine the acceptability of a self-management app in adults living with asthma and have limited health literacy and the feasibility of delivering the intervention and assessing outcomes. METHODS: We recruited eligible adults from the Klang Asthma Cohort registry in primary care for a 3-month mixed-method study plus a 2-month extended observation. We collected baseline data on socio-demography, health literacy and asthma control level. The outcomes of the intervention were assessed at 1- and 3-month: i) adoption (app download and usage), ii) adherence (app usage), iii) retention (app usage in the observation period), iv) health outcomes (e.g., severe asthma attacks) and v) process outcomes (e.g., ownership and use of action plans). At 1-month, participants were purposively sampled for in-depth interviews, which were audio-recorded, transcribed verbatim, and analysed deductively. RESULTS: We recruited 48 participants; 35 participants (23 Female; median age = 43 years; median HLS score = 28) completed the 3 months study. Of these, 14 participants (10 Female; median age = 48 years; median HLS score = 28) provided interviews. Thirty-seven (77%) participants adopted the app (downloaded and used it in the first month of the study). The main factor reported as influencing adoption was the ease of using the app. A total of 950 app usage were captured during the 3-month feasibility study. App usage increased gradually, peaking at month 2 (355 total log-ins) accounting for 78% of users. In month 5, 51.4% of the participants used the app at least once. The main factors influencing continued use included adherence features (e.g., prompts and reminders), familiarity with app function and support from family members. CONCLUSIONS: An asthma self-management app intervention was acceptable for adults with limited health literacy and it was feasible to collect the desired outcomes at different time points during the study. A future trial is warranted to estimate the clinical and cost-effectiveness of the intervention and to explore implementation strategies.


Asunto(s)
Asma , Alfabetización en Salud , Aplicaciones Móviles , Automanejo , Adulto , Humanos , Femenino , Persona de Mediana Edad , Automanejo/métodos , Estudios de Factibilidad , Asma/terapia
7.
J Community Genet ; 14(4): 361-369, 2023 Aug.
Artículo en Inglés | MEDLINE | ID: mdl-37393207

RESUMEN

In 2016, a national school-based thalassemia screening programme was implemented in Malaysia. This study aimed to explore the experiences and views of adolescents from an urban school who had undergone the screening programme. We carried out in-depth interviews with 18 participants aged between 18 and 19 years old, with 12 of them identified as carriers during the school screening. Interviews were transcribed verbatim and analysed using thematic analysis. Three main themes emerged from this study: (1) issues encountered at various levels of the school screening programme: appropriate age for screening, thalassaemia education in school, parental consent and follow-up visit and post-test counselling; (2) experiencing emotional rollercoaster: worry, anxiety, shame, stigma; (3) choosing future partners after carrier status was known-prepared or unprepared? Various issues and screening-related challenges were encountered before, during and after the screening test. Recommendations include improving thalassaemia screening education for both school-going adolescents and parents, and better follow-up care and support for those identified as carriers. These will help stakeholders to be well informed and supportive of thalassaemia screening in schools.

8.
Health Sci Rep ; 6(5): e1021, 2023 May.
Artículo en Inglés | MEDLINE | ID: mdl-37152232

RESUMEN

Background and Aims: Asthma is common in Malaysia but neglected. Achieving optimal asthma control and care is a challenge in the primary care setting. In this study, we aimed to identify the risk factors for poor asthma control and pattern of care among adults and children (5-17 years old) with asthma attending six public health clinics in Klang District, Malaysia. Methods: We conducted a cross-sectional study collecting patients' sociodemographic characteristics, asthma control, trigger factors, healthcare use, asthma treatment, and monitoring and use of asthma action plan. Descriptive statistics and stepwise logistic regression were used in data analysis. Results: A total of 1280 patients were recruited; 85.3% adults and 14.7% children aged 5-17 years old. Only 34.1% of adults had well-controlled asthma, 36.5% had partly controlled asthma, and 29.4% had uncontrolled asthma. In children, 54.3% had well-controlled asthma, 31.9% had partly controlled, and 13.8% had uncontrolled asthma. More than half had experienced one or more exacerbations in the last 1 year, with a mean of six exacerbations in adults and three in children. Main triggers for poor control in adults were haze (odds ratio [OR] 1.51; 95% confidence interval [CI] 1.13-2.01); cold food (OR 1.54; 95% CI 1.15-2.07), extreme emotion (OR 1.90; 95% CI 1.26-2.89); air-conditioning (OR 1.63; 95% CI 1.20-2.22); and physical activity (OR 2.85; 95% CI 2.13-3.82). In children, hot weather (OR 3.14; 95% CI 1.22-8.11), and allergic rhinitis (OR 2.57; 95% CI 1.13-5.82) contributed to poor control. The majority (81.7% of adults and 64.4% of children) were prescribed controller medications, but only 42.4% and 29.8% of the respective groups were compliant with the treatment. The importance of an asthma action plan was reported less emphasized in asthma education. Conclusion: Asthma control remains suboptimal. Several triggers, compliance to controller medications, and asthma action plan use require attention during asthma reviews for better asthma outcomes.

9.
NPJ Prim Care Respir Med ; 33(1): 13, 2023 03 27.
Artículo en Inglés | MEDLINE | ID: mdl-36973274

RESUMEN

Asthma, a common chronic respiratory illness is mostly managed in primary care. We aimed to determine healthcare resources, organisational support, and doctors' practice in managing asthma in a Malaysian primary care setting. A total of six public health clinics participated. We found four clinics had dedicated asthma services. There was only one clinic which had a tracing defaulter system. Long-term controller medications were available in all clinics, but not adequately provided. Resources, educational materials, and equipment for asthma management were present, though restricted in number and not placed in main locations of the clinic. To diagnose asthma, most doctors used clinical judgement and peak flow metre measurements with reversibility test. Although spirometry is recommended to diagnose asthma, it was less practiced, being inaccessible and unskilled in using as the main reasons. Most doctors reported providing asthma self-management; asthma action plan, but for only half of the patients that they encountered. In conclusion, there is still room for improvement in the provision of clinic resources and support for asthma care. Utilising peak flow metre measurement and reversibility test suggest practical alternative in low resource for spirometry. Reinforcing education on asthma action plan is vital to ensure optimal asthma care.


Asunto(s)
Asma , Salud Pública , Humanos , Malasia , Encuestas y Cuestionarios , Asma/diagnóstico , Asma/terapia , Atención a la Salud
10.
Asia Pac J Public Health ; 35(2-3): 179-182, 2023 03.
Artículo en Inglés | MEDLINE | ID: mdl-36852891

RESUMEN

Asthma exacerbations are among the commonest reasons for hospitalizations in Malaysian pilgrims during the Hajj. We interviewed 21 stakeholders involved in the pre-Hajj health examination at 14 primary care clinics, to explore their perceptions on barriers to and facilitators of asthma care for Hajj pilgrims. The disadvantages of the short time frame and centralized organization of the pre-Hajj health examinations were viewed as compromising clinicians' level of competencies in asthma care, which could potentially be enhanced through more training, audit, and supervision by specialists. Longer time frame to permit sufficient disease control, provision of care by a dedicated asthma team, asthma registry to support continuous care, more resources of long-acting ß-agonist/inhaled corticosteroid, and provision of influenza and pneumococcal vaccines at no cost were the perceived facilitators. Delivery of asthma education, especially the asthma action plan, should be tailored to the level of the pilgrim's health literacy and facilitated by educational resources, family engagement, and regular health briefing.


Asunto(s)
Asma , Vacunas contra la Influenza , Gripe Humana , Humanos , Viaje , Gripe Humana/prevención & control , Asma/terapia , Vacunas Neumococicas , Arabia Saudita
11.
BMC Prim Care ; 23(1): 261, 2022 10 13.
Artículo en Inglés | MEDLINE | ID: mdl-36229779

RESUMEN

BACKGROUND: Primary healthcare workers (PHCWs) are at the frontline of dealing with viral pandemics. They may experience significant psychological stresses, which have hitherto not been examined in depth. We aimed to explore the impact of the COVID-19 pandemic on the psychological health and wellbeing of frontline PHCWs in Malaysia. METHOD: We purposively recruited PHCWs with diverse backgrounds in Klang Valley, Malaysia. Using longitudinal qualitative methods, we conducted two sequential semi-structured telephone interviews, 3 to 4 weeks apart, to capture different stages of the pandemic. Interviews were audio-recorded, transcribed verbatim, and analysed thematically. RESULT: Twenty-one PHCWs participated yielding a total of forty-two interviews. Themes clustered around stressors associated with work, home, and leisure activities, emotional changes, and modifying factors. In the first interviews, COVID-19 had just started in Malaysia. Participants expressed fear about the actual and perceived personal risk of COVID-19 infection. Most were worried about transmitting COVID-19 to their family members. Some felt stigmatized because of this perceived risk of infection. By the second interviews, participants felt safer, but instead focused on the need to keep other people safe. Participants' emotions were influenced by their perceived risk of contracting COVID-19 infection. Internal factors such as religion enabled them to manage their concerns and develop personal coping strategies. Support from family members, colleagues, and employers promoted wellbeing during the pandemic. Training sessions, daily roll calls, and psychological support services were important in maintaining their psychological health and wellbeing. Many participants were hopeful and believed normalcy would return by the end of 2020. CONCLUSION: PHCW's psychological health and wellbeing evolved throughout the early stages of the pandemic and were influenced by their perceived risk of contracting the disease and personal belief structures. Clear updates on the disease and strategies for keeping safe at work and socially are essential to maintaining PHCWs' psychological health and wellbeing.


Asunto(s)
COVID-19 , Pandemias , COVID-19/epidemiología , Personal de Salud/psicología , Humanos , Malasia/epidemiología , Salud Mental
12.
NPJ Prim Care Respir Med ; 32(1): 34, 2022 09 20.
Artículo en Inglés | MEDLINE | ID: mdl-36127355

RESUMEN

Supported self-management reduces asthma-related morbidity and mortality. This paper is on a feasibility study, and observing the change in clinical and cost outcomes of pictorial action plan use is part of assessing feasibility as it will help us decide on outcome measures for a fully powered RCT. We conducted a pre-post feasibility study among adults with physician-diagnosed asthma on inhaled corticosteroids at a public primary-care clinic in Malaysia. We adapted an existing pictorial asthma action plan. The primary outcome was asthma control, assessed at 1, 3 and 6 months. Secondary outcomes included reliever use, controller medication adherence, asthma exacerbations, emergency visits, hospitalisations, days lost from work/daily activities and action plan use. We estimated potential cost savings on asthma-related care following plan use. About 84% (n = 59/70) completed the 6-months follow-up. The proportion achieving good asthma control increased from 18 (30.4%) at baseline to 38 (64.4%) at 6-month follow-up. The proportion of at least one acute exacerbation (3 months: % difference -19.7; 95% CI -34.7 to -3.1; 6 months: % difference -20.3; 95% CI -5.8 to -3.2), one or more emergency visit (1 month: % difference -28.6; 95% CI -41.2 to -15.5; 3 months: % difference -18.0; 95% CI -32.2 to -3.0; 6 months: % difference -20.3; 95% CI -34.9 to -4.6), and one or more asthma admission (1 month: % difference -14.3; 95% CI -25.2 to -5.3; 6 months: % difference -11.9; 95% CI -23.2 to -1.8) improved over time. Estimated savings for the 59 patients at 6-months follow-up and for each patient over the 6 months were RM 15,866.22 (USD3755.36) and RM268.92 (USD63.65), respectively. Supported self-management with a pictorial asthma action plan was associated with an improvement in asthma control and potential cost savings in Malaysian primary-care patients.Trial registration number: ISRCTN87128530; prospectively registered: September 5, 2019, http://www.isrctn.com/ISRCTN87128530 .


Asunto(s)
Asma , Automanejo , Corticoesteroides/uso terapéutico , Adulto , Asma/tratamiento farmacológico , Estudios de Factibilidad , Humanos , Cumplimiento de la Medicación
13.
J Glob Health ; 12: 04023, 2022.
Artículo en Inglés | MEDLINE | ID: mdl-35356659

RESUMEN

Background: Asthma was one of the top causes of hospitalization and unscheduled medical attendances due to acute exacerbations and its complications. In Malaysia, all pilgrims must undergo a mandatory health examination and certified fit to perform pilgrimage. We studied the current organisational and clinical routines of Hajj health examination in Malaysia with a focus on the delivery of care for pilgrims with asthma. Methods: We conducted non-participant observation to obtain ethnographic understanding of Hajj health examination activities for 2019. Observations were guided by a checklist and recorded as notes that were analysed thematically. The study was conducted at 11 public (from each region in Malaysia, namely, North, South, East, West of Peninsular Malaysia, and Sabah and Sarawak of East Malaysia) and two private primary care clinics. Results: We observed considerable variation in the implementation and practice of Hajj health examinations among the 11 public clinics but no marked variation among the private clinics. The short time span of between three to four months was inadequate for disease control measures and had put pressure on health care providers. They mostly viewed the Hajj health examination as merely a certification of fitness to perform the pilgrimage, though respiratory health assessment was often inadequate. The opportunity to optimise the health of pilgrims with asthma by providing the appropriate medications, asthma action plan and asthma education including the preventive measures was disregarded. The preliminary health screening, which aimed to optimise pilgrims' health before the actual Hajj health examination was not appreciated by either pilgrims or health care providers. Conclusions: There is great potential to reform the current system of Hajj health certification in order to optimise its potential benefits for pilgrims with asthma. A systematic approach to restructuring the delivery of Hajj health examination could address the time constraints, clinical competency of primary health care providers and resources limitations.


Asunto(s)
Asma , Viaje , Asma/diagnóstico , Humanos , Islamismo , Malasia
14.
NPJ Prim Care Respir Med ; 31(1): 47, 2021 11 29.
Artículo en Inglés | MEDLINE | ID: mdl-34845205

RESUMEN

Implementing asthma guideline recommendations is challenging in low- and middle-income countries. We aimed to explore healthcare provider (HCP) perspectives on the provision of recommended care. Twenty-six HCPs from six public primary care clinics in a semi-urban district of Malaysia were purposively sampled based on roles and experience. Focus group discussions were guided by a semi-structured interview guide and analysed thematically. HCPs had access to guidelines and training but highlighted multiple infrastructure-related challenges to implementing recommended care. Diagnosis and review of asthma control were hampered by limited access to spirometry and limited asthma control test (ACT) use, respectively. Treatment decisions were limited by poor availability of inhaled combination therapy (ICS/LABA) and free spacer devices. Imposed Ministry of Health programmes involving other non-communicable diseases were prioritised over asthma. Ministerial policies need practical resources and organisational support if quality improvement programmes are to facilitate better management of asthma in public primary care clinics.


Asunto(s)
Asma , Asma/terapia , Personal de Salud , Humanos , Malasia , Atención Primaria de Salud
16.
J Glob Health ; 11: 04065, 2021.
Artículo en Inglés | MEDLINE | ID: mdl-34737865

RESUMEN

BACKGROUND: Our previous scoping review revealed limitations and inconsistencies in population surveys of chronic respiratory disease. Informed by this review, we piloted a cross-sectional survey of adults in four South/South-East Asian low-and middle-income countries (LMICs) to assess survey feasibility and identify variables that predicted asthma or chronic obstructive pulmonary disease (COPD). METHODS: We administered relevant translations of the BOLD-1 questionnaire with additional questions from ECRHS-II, performed spirometry and arranged specialist clinical review for a sub-group to confirm the diagnosis. Using random sampling, we piloted a community-based survey at five sites in four LMICs and noted any practical barriers to conducting the survey. Three clinicians independently used information from questionnaires, spirometry and specialist reviews, and reached consensus on a clinical diagnosis. We used lasso regression to identify variables that predicted the clinical diagnoses and attempted to develop an algorithm for detecting asthma and COPD. RESULTS: Of 508 participants, 55.9% reported one or more chronic respiratory symptoms. The prevalence of asthma was 16.3%; COPD 4.5%; and 'other chronic respiratory disease' 3.0%. Based on consensus categorisation (n = 483 complete records), "Wheezing in last 12 months" and "Waking up with a feeling of tightness" were the strongest predictors for asthma. For COPD, age and spirometry results were the strongest predictors. Practical challenges included logistics (participant recruitment; researcher safety); misinterpretation of questions due to local dialects; and assuring quality spirometry in the field. CONCLUSION: Detecting asthma in population surveys relies on symptoms and history. In contrast, spirometry and age were the best predictors of COPD. Logistical, language and spirometry-related challenges need to be addressed.


Asunto(s)
Asma , Enfermedad Pulmonar Obstructiva Crónica , Adulto , Asma/diagnóstico , Asma/epidemiología , Estudios Transversales , Países en Desarrollo , Humanos , Prevalencia , Enfermedad Pulmonar Obstructiva Crónica/diagnóstico , Enfermedad Pulmonar Obstructiva Crónica/epidemiología , Espirometría , Encuestas y Cuestionarios
17.
Cochrane Database Syst Rev ; 10: CD010849, 2021 10 11.
Artículo en Inglés | MEDLINE | ID: mdl-34634131

RESUMEN

BACKGROUND: Globally, about 6% of children are born with a serious birth defect of genetic or partially genetic origin. Carrier screening or testing is one way to identify couples at increased risk of having a child with an autosomal recessive condition. The most common autosomal recessive conditions are thalassaemia, sickle cell disease, cystic fibrosis and Tay-Sachs disease, with higher carrier rates in high-risk populations of specific ancestral backgrounds. Identifying and counselling couples at genetic risk of the conditions before pregnancy enables them to make fully informed reproductive decisions, with some of these choices not being available if testing is only offered in an antenatal setting. This is an update of a previously published review. OBJECTIVES: To assess the effectiveness of systematic preconception genetic risk assessment to enable autonomous reproductive choice and to improve reproductive outcomes  in women and their partners who are both identified as carriers of thalassaemia, sickle cell disease, cystic fibrosis and Tay-Sachs disease in healthcare settings when compared to usual care. SEARCH METHODS: We searched the Cochrane Cystic Fibrosis and Genetic Disorders Group's Trials Registers. Date of latest search of the registers: 04 August 2021. In addition, we searched for all relevant trials from 1970 (or the date at which the database was first available if after 1970) to date using electronic databases (MEDLINE, Embase, CINAHL, PsycINFO), clinical trial databases (National Institutes of Health, Clinical Trials Search portal of the World Health Organization, metaRegister of controlled clinical trials), and hand searching of key journals and conference abstract books from 1998 to date (European Journal of Human Genetics, Genetics in Medicine, Journal of Community Genetics). We also searched the reference lists of relevant articles, reviews and guidelines and also contacted subject experts in the field to request any unpublished or other published trials. Date of latest search of all these sources: 25 June 2021.  SELECTION CRITERIA: Any randomised controlled trials (RCTs) or quasi-RCTs (published or unpublished) comparing reproductive outcomes of systematic preconception genetic risk assessment for thalassaemia, sickle cell disease, cystic fibrosis and Tay-Sachs disease when compared to usual care. DATA COLLECTION AND ANALYSIS: We identified 37 papers, describing 22 unique trials which were potentially eligible for inclusion in the review. However, after assessment, we found no RCTs of preconception genetic risk assessment for thalassaemia, sickle cell disease, cystic fibrosis and Tay-Sachs disease. MAIN RESULTS: No RCTs of preconception genetic risk assessment for thalassaemia, sickle cell disease, cystic fibrosis and Tay-Sachs disease are included. A trial identified earlier has published its results and has subsequently been listed as excluded in this review. AUTHORS' CONCLUSIONS: As there are no RCTs of preconception genetic risk assessment for thalassaemia, sickle cell disease, cystic fibrosis, or Tay-Sachs disease included in either the earlier or current versions of this review, we recommend considering potential non-RCTs studies (for example prospective cohorts or before-and-after studies) for future reviews. While RCTs are desirable to inform evidence-based practice and robust recommendations, the ethical, legal and social implications associated with using this trial design to evaluate the implementation of preconception genetic risk assessment involving carrier testing and reproductive autonomy must also be considered.  In addition, rather than focusing on single gene-by-gene carrier testing for specific autosomal-recessive conditions as the intervention being evaluated, preconception expanded genetic screening should also be included in future searches as this has received much attention in recent years as a more pragmatic strategy. The research evidence for current international policy recommendations is limited to non-randomised studies.


Asunto(s)
Anemia de Células Falciformes , Fibrosis Quística , Enfermedad de Tay-Sachs , Talasemia , Anemia de Células Falciformes/genética , Fibrosis Quística/genética , Femenino , Humanos , Medición de Riesgo , Enfermedad de Tay-Sachs/genética
18.
Health Expect ; 24(6): 2078-2086, 2021 12.
Artículo en Inglés | MEDLINE | ID: mdl-34449970

RESUMEN

BACKGROUND: Supported self-management improves asthma outcomes, but implementation requires adaptation to the local context. Barriers reported in Western cultures may not resonate in other cultural contexts. We explored the views, experiences and beliefs that influenced self-management among adults with asthma in multicultural Malaysia. METHODS: Adults with asthma were purposively recruited from an urban primary healthcare clinic for in-depth interviews. Audio-recordings were transcribed verbatim and analysed thematically. RESULTS: We interviewed 24 adults. Four themes emerged: (1) Participants believed in the 'hot and cold' concept of illness either as an inherent hot/cold body constitution or the ambient temperature. Hence, participants tried to 'neutralize' body constitution or to 'warm up' the cold temperature that was believed to trigger acute attacks. (2) Participants managed asthma based on past experiences and personal health beliefs as they lacked formal information about asthma and its treatment. (3) Poor communication and variable advice from healthcare practitioners on how to manage their asthma contributed to poor self-management skills. (4) Embarrassment about using inhalers in public and advice from family and friends resulted in a focus on nonpharmacological approaches to asthma self-management practice. CONCLUSIONS: Asthma self-management practices were learnt experientially and were strongly influenced by sociocultural beliefs and advice from family and friends. Effective self-management needs to be tailored to cultural norms, personalized to the individuals' preferences and clinical needs, adapted to their level of health literacy and underpinned by patient-practitioner partnerships. PATIENT AND PUBLIC CONTRIBUTIONS: Patients contributed to data. Members of the public were involved in the discussion of the results.


Asunto(s)
Asma , Alfabetización en Salud , Automanejo , Adulto , Asma/terapia , Humanos , Atención Primaria de Salud , Investigación Cualitativa
19.
J Glob Health ; 11: 04026, 2021 Jun 19.
Artículo en Inglés | MEDLINE | ID: mdl-34221357

RESUMEN

BACKGROUND: Chronic respiratory diseases (CRDs) contribute significantly towards the global burden of disease, but the true prevalence and burden of these conditions in adults is unknown in the majority of low- and middle-income countries (LMICs). We aimed to identify strategies - in particular the definitions, study designs, sampling frames, instruments, and outcomes - used to conduct prevalence surveys for CRDs in LMICs. The findings will inform a future RESPIRE Four Country ChrOnic Respiratory Disease (4CCORD) study, which will estimate CRD prevalence, including disease burden, in adults in LMICs. METHODS: We conducted a scoping review to map prevalence surveys conducted in LMICs published between 1995 and 2018. We followed Arksey and O'Malley's six-step framework. The search was conducted in OVID Medline, EMBASE, ISI Web of Science, Global Health, WHO Global Index Medicus and included three domains: CRDs, prevalence and LMICs. After an initial title sift, eight trained reviewers undertook duplicate study selection and data extraction. We charted: country and populations, random sampling strategies, CRD definitions/phenotypes, survey procedure (questionnaires, spirometry, tests), outcomes and assessment of individual, societal and health service burden of disease. RESULTS: Of 36 872 citations, 281 articles were included: 132 from Asia (41 from China). Study designs were cross-sectional surveys (n = 260), cohort studies (n = 11) and secondary data analysis (n = 10). The number of respondents in these studies ranged from 50 to 512 891. Asthma was studied in 144 studies, chronic obstructive pulmonary disease (COPD) in 112. Most studies (100/144) based identification of asthma on symptom-based questionnaires. In contrast, COPD diagnosis was typically based on spirometry findings (94/112); 65 used fixed-ratio thresholds, 29 reported fixed-ratio and lower-limit-of-normal values. Only five articles used the term 'phenotype'. Most studies used questionnaires derived from validated surveys, most commonly the European Community Respiratory Health Survey (n = 47). The burden/impact of CRD was reported in 33 articles (most commonly activity limitation). CONCLUSION: Surveys remain the most practical approach for estimating prevalence of CRD but there is a need to identify the most predictive questions for diagnosing asthma and to standardise diagnostic criteria.


Asunto(s)
Enfermedad Crónica , Enfermedad Pulmonar Obstructiva Crónica , Enfermedades Respiratorias , Adulto , Países en Desarrollo , Humanos , Encuestas y Cuestionarios
20.
NPJ Prim Care Respir Med ; 31(1): 38, 2021 07 07.
Artículo en Inglés | MEDLINE | ID: mdl-34234145

RESUMEN

Asthma self-management is a crucial component of asthma management. We sought to explore healthcare professionals' (HCPs') perceptions on barriers to asthma self-management implementation in primary care. We recruited 26 HCPs from six public primary care clinics in a semi-urban district of Malaysia in 2019. The analysis was done inductively. HCPs described barriers that resonated with the "COM-B" behaviour change framework. Capability-related issues stemmed from a need for specific self-management skills training. Opportunity-related barriers included the need to balance competing tasks and limited, poorly tailored resources. Motivation-related barriers included lack of awareness about self-management benefits, which was not prioritised in consultations with perceived lack of receptiveness from patients. These were compounded by contextual barriers of the healthcare organisation and multilingual society. The approach to implementation of asthma self-management needs to be comprehensive, addressing systemic, professional, and patient barriers and tailored to the local language, health literacy, and societal context.


Asunto(s)
Asma , Automanejo , Asma/terapia , Actitud del Personal de Salud , Personal de Salud , Humanos , Atención Primaria de Salud , Investigación Cualitativa
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