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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

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

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 con

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 con

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.

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.

Family history has long been recognised as a non-invasive and inexpensive tool to identify individuals at risk of genetic conditions. Even in the era of evolving genetic and genomic technology, the role of family history in predicting individual risk for genetic testing and guiding in preventive interventions is still relevant, especially in low-resource countries. The aim of this study was to explore primary care doctors' views and experiences in family history taking and how they utilised family history in day-to-day clinical consultations in Malaysia. Four focus group discussions and six in-depth interviews involving 25 primary care doctors were conducted. Three themes emerged from the analysis: (1) primary care doctors considered family history as an important part of clinical assessment, (2) proactive versus reactive approach in collecting family history and (3) family history collection was variable and challenging. Family history was documented in either free text or pedigree depending on the perception of its appropriateness during the consultation. This study highlighted the need to improve the approach, documentation and the implementation of family history in the Malaysian primary care settings. Integrating family filing concept with built-in clinical decision support into electronic medical records is a potential solution in ensuring effective family history taking in primary care.

Objective We aimed to explore the views of Malaysian children with asthma and their parents to enhance understanding of early influences on development of self-management skills. Design This is a qualitative study conducted among children with asthma and their parents. We used purposive sampling and conducted focus groups and interviews using a semi-structured topic guide in the participants’ preferred language. All interviews were audio-recorded, transcribed verbatim, entered into NVivo and analysed using a grounded theory approach. Settings We identified children aged 7–12 years with parent-reported, physician-diagnosed asthma from seven suburban primary schools in Malaysia. Focus groups and interviews were conducted either at schools or a health centre. Results Ninety-nine participants (46 caregivers, 53 children) contributed to 24 focus groups and 6 individual interviews. Children mirrored their parents’ management of asthma but, in parallel, learnt and gained confidence to independently self-manage asthma from their own experiences and self-experimentation. Increasing independence was more apparent in children aged 10 years and above. Cultural norms and beliefs influenced children’s independence to self-manage asthma either directly or indirectly through their social network. External influences, for example, support from school and healthcare, also played a role in the transition. Conclusion Children learnt the skills to self manage asthma as early as 7 years old with growing independence from the age of 10 years. Healthcare professionals should use child-centred approach and involve schools to facilitate asthma self-management and support a smooth transition to independent self management.

Introduction: Pregnancy planning varies among women with diabetes. Observing that the literature examining the factors affecting diabetic women’s pregnancy intentions in multi-ethnic Asian populations is limited, we sought to explore these factors to give a better perspective on these women’s pregnancy planning. Methods: This qualitative study used individual in-depth interviews to capture the views and experiences of non-pregnant diabetic women of reproductive age in four public health clinics in a southwestern state of peninsular Malaysia from May 2016 to February 2017. The participants were purposively sampled according to ethnicity and were interviewed using a semi-structured topic guide. Interviews were audio-recorded, and transcripts were analysed using thematic analysis. Results: From the 33 interviews that were analysed, four important factors influencing participants’ decisions regarding pregnancy planning were identified. Participants’ perception of poor pregnancy outcomes due to advanced age and medical condition was found to have an impact. However, despite these fears and negative relationships with doctors, personal, family and cultural influences supported by religious ‘up to God’ beliefs took centre stage in the pregnancy intention of some participants. Participants demonstrated a variety of understandings of pregnancy planning. They outlined some activities for pregnancy preparation, although many also reported limited engagement with pre-pregnancy care. Conclusions: This study emphasised the known dilemma experienced by diabetic women considering their desire for an ideal family structure against their perceived pregnancy risks, heterogeneous religious beliefs and the impact of cultural demands on pregnancy intention. This study urges healthcare providers to increase their engagement with the women in pregnancy planning in a more personalised approach.

Family history has long been recognised as a non-invasive and inexpensive tool to identify individuals at risk of genetic conditions. Even in the era of evolving genetic and genomic technology, the role of family history in predicting individual risk for genetic testing and guiding in preventive interventions is still relevant, especially in low-resource countries. The aim of this study was to explore primary care doctors' views and experiences in family history taking and how they utilised family history in day-to-day clinical consultations in Malaysia. Four focus group discussions and six in-depth interviews involving 25 primary care doctors were conducted. Three themes emerged from the analysis: (1) primary care doctors considered family history as an important part of clinical assessment, (2) proactive versus reactive approach in collecting family history and (3) family history collection was variable and challenging. Family history was documented in either free text or pedigree depending on the perception of its appropriateness during the consultation. This study highlighted the need to improve the approach, documentation and the implementation of family history in the Malaysian primary care settings. Integrating family filing concept with built-in clinical decision support into electronic medical records is a potential solution in ensuring effective family history taking in primary care.

Objective We aimed to explore the views of Malaysian children with asthma and their parents to enhance understanding of early influences on development of self-management skills. Design This is a qualitative study conducted among children with asthma and their parents. We used purposive sampling and conducted focus groups and interviews using a semi-structured topic guide in the participants’ preferred language. All interviews were audio-recorded, transcribed verbatim, entered into NVivo and analysed using a grounded theory approach. Settings We identified children aged 7–12 years with parent-reported, physician-diagnosed asthma from seven suburban primary schools in Malaysia. Focus groups and interviews were conducted either at schools or a health centre. Results Ninety-nine participants (46 caregivers, 53 children) contributed to 24 focus groups and 6 individual interviews. Children mirrored their parents’ management of asthma but, in parallel, learnt and gained confidence to independently self-manage asthma from their own experiences and self-experimentation. Increasing independence was more apparent in children aged 10 years and above. Cultural norms and beliefs influenced children’s independence to self-manage asthma either directly or indirectly through their social network. External influences, for example, support from school and healthcare, also played a role in the transition. Conclusion Children learnt the skills to self manage asthma as early as 7 years old with growing independence from the age of 10 years. Healthcare professionals should use child-centred approach and involve schools to facilitate asthma self-management and support a smooth transition to independent self management.

Introduction: Pregnancy planning varies among women with diabetes. Observing that the literature examining the factors affecting diabetic women’s pregnancy intentions in multi-ethnic Asian populations is limited, we sought to explore these factors to give a better perspective on these women’s pregnancy planning. Methods: This qualitative study used individual in-depth interviews to capture the views and experiences of non-pregnant diabetic women of reproductive age in four public health clinics in a southwestern state of peninsular Malaysia from May 2016 to February 2017. The participants were purposively sampled according to ethnicity and were interviewed using a semi-structured topic guide. Interviews were audio-recorded, and transcripts were analysed using thematic analysis. Results: From the 33 interviews that were analysed, four important factors influencing participants’ decisions regarding pregnancy planning were identified. Participants’ perception of poor pregnancy outcomes due to advanced age and medical condition was found to have an impact. However, despite these fears and negative relationships with doctors, personal, family and cultural influences supported by religious ‘up to God’ beliefs took centre stage in the pregnancy intention of some participants. Participants demonstrated a variety of understandings of pregnancy planning. They outlined some activities for pregnancy preparation, although many also reported limited engagement with pre-pregnancy care. Conclusions: This study emphasised the known dilemma experienced by diabetic women considering their desire for an ideal family structure against their perceived pregnancy risks, heterogeneous religious beliefs and the impact of cultural demands on pregnancy intention. This study urges healthcare providers to increase their engagement with the women in pregnancy planning in a more personalised approach.

Background: Hyperlipidaemia is a significant risk factor for cardiovascular disease. However, adherence to lipid-lowering therapy is often unsatisfactory due to a combination of patient factors, therapy, socio-economic and health system-related factors. Aims: to identify the prevalence of adherence to lipid-lowering therapy, the factors contributing to non-adherence and knowledge regarding hyperlipidaemia and its’ treatment among Malaysian patients with hyperlipidemia. Methods: A quantitative study using a cross-sectional survey was carried out in an urban primary care clinic in August 2015. Patients on lipid-lowering therapy for ≥ 1 year aged ≥ 18 years were selected using simple random sampling. consenting patients answered a self-administered questionnaire (in Malay/English) which included socio-demographic profile, hyperlipidaemia profile, adherence to lipid-lowering therapy (using the Morisky Medication Adherence scale-8; score ≥ 6 taken as adherent), reasons leading to non-adherence, knowledge regarding hyperlipidaemia and its’ treatment, and use of non-allopathic medicine. Results: the response rate was 90.7%. the prevalence of adherence to lipid-lowering therapy was 82.4%. “the most common reasons for non-adherence was being worried about side effect of lipid-lowering agent (71.4%), followed by the need to take too many drugs in a day (61.4%) and negative influences by friends, relative and mass media (60%)”. Factors associated with non-adherence include male gender, on longer duration of therapy, less frequency of follow-up, less number of follow-up clinics, taking medication at night/random timing and having lower knowledge scores. Conclusion: Overall the prevalence of adherence was high in patients with hyperlipidaemia. Interventions to boost adherence should target those who were identified as non-adherent.

Background: Hyperlipidaemia is a significant risk factor for cardiovascular disease. However, adherence to lipid-lowering therapy is often unsatisfactory due to a combination of patient factors, therapy, socio-economic and health system-related factors. Aims: to identify the prevalence of adherence to lipid-lowering therapy, the factors contributing to non-adherence and knowledge regarding hyperlipidaemia and its’ treatment among Malaysian patients with hyperlipidemia. Methods: A quantitative study using a cross-sectional survey was carried out in an urban primary care clinic in August 2015. Patients on lipid-lowering therapy for ≥ 1 year aged ≥ 18 years were selected using simple random sampling. consenting patients answered a self-administered questionnaire (in Malay/English) which included socio-demographic profile, hyperlipidaemia profile, adherence to lipid-lowering therapy (using the Morisky Medication Adherence scale-8; score ≥ 6 taken as adherent), reasons leading to non-adherence, knowledge regarding hyperlipidaemia and its’ treatment, and use of non-allopathic medicine. Results: the response rate was 90.7%. the prevalence of adherence to lipid-lowering therapy was 82.4%. “the most common reasons for non-adherence was being worried about side effect of lipid-lowering agent (71.4%), followed by the need to take too many drugs in a day (61.4%) and negative influences by friends, relative and mass media (60%)”. Factors associated with non-adherence include male gender, on longer duration of therapy, less frequency of follow-up, less number of follow-up clinics, taking medication at night/random timing and having lower knowledge scores. Conclusion: Overall the prevalence of adherence was high in patients with hyperlipidaemia. Interventions to boost adherence should target those who were identified as non-adherent.

Background: Globally, about five per cent of children are born with congenital or genetic disorders. The most common autosomal recessive conditions are thalassaemia, sickle cell disease, cystic fibrosis and Tay-Sachs disease, with higher carrier rates in specific patient populations. 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 genetic counselling is only offered in an antenatal setting. Objectives: To assess the effectiveness of systematic preconception genetic risk assessment to improve reproductive outcomes in women and their partners who are 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. 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 the registers: 25 June 2015. Date of latest search of all other sources: 10 December 2014. Selection criteria: Any randomised or quasi-randomised control trials (published or unpublished) comparing reproductive outcomes of systematic preconception genetic risk assessment for thalassaemia

Background: Globally, about five per cent of children are born with congenital or genetic disorders. The most common autosomal recessive conditions are thalassaemia, sickle cell disease, cystic fibrosis and Tay-Sachs disease, with higher carrier rates in specific patient populations. 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 genetic counselling 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 improve reproductive outcomes in women and their partners who are 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. 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 the registers: 20 June 2017. Date of latest search of all other sources: 16 November 2017. Selection criteria: Any randomised or quasi-randomised controlled trials (published or unpublished) comparing reproductive outcomes of systematic p

Background: Globally, about five per cent of children are born with congenital or genetic disorders. The most common autosomal recessive conditions are thalassaemia, sickle cell disease, cystic fibrosis and Tay-Sachs disease, with higher carrier rates in specific patient populations. 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 genetic counselling 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 improve reproductive outcomes in women and their partners who are 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. 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 the registers: 20 June 2017. Date of latest search of all other sources: 16 November 2017. Selection criteria: Any randomised or quasi-randomised controlled trials (published or unpublished) comparing reproductive outcomes of systematic p

Background: Globally, about five per cent of children are born with congenital or genetic disorders. The most common autosomal recessive conditions are thalassaemia, sickle cell disease, cystic fibrosis and Tay-Sachs disease, with higher carrier rates in specific patient populations. 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 genetic counselling 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 improve reproductive outcomes in women and their partners who are 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. 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 the registers: 20 June 2017. Date of latest search of all other sources: 16 November 2017. Selection criteria: Any randomised or quasi-randomised controlled trials (published or unpublished) comparing reproductive outcomes of systematic p

Background: Globally, about five per cent of children are born with congenital or genetic disorders. The most common autosomal recessive conditions are thalassaemia, sickle cell disease, cystic fibrosis and Tay-Sachs disease, with higher carrier rates in specific patient populations. 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 genetic counselling is only offered in an antenatal setting. Objectives: To assess the effectiveness of systematic preconception genetic risk assessment to improve reproductive outcomes in women and their partners who are 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. 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 the registers: 25 June 2015. Date of latest search of all other sources: 10 December 2014. Selection criteria: Any randomised or quasi-randomised control trials (published or unpublished) comparing reproductive outcomes of systematic preconception genetic risk assessment for thalassaemia

Background: Globally, about five per cent of children are born with congenital or genetic disorders. The most common autosomal recessive conditions are thalassaemia, sickle cell disease, cystic fibrosis and Tay-Sachs disease, with higher carrier rates in specific patient populations. 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 genetic counselling 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 improve reproductive outcomes in women and their partners who are 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. 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 the registers: 20 June 2017. Date of latest search of all other sources: 16 November 2017. Selection criteria: Any randomised or quasi-randomised controlled trials (published or unpublished) comparing reproductive outcomes of systematic p

Background: Globally, about five per cent of children are born with congenital or genetic disorders. The most common autosomal recessive conditions are thalassaemia, sickle cell disease, cystic fibrosis and Tay-Sachs disease, with higher carrier rates in specific patient populations. 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 genetic counselling is only offered in an antenatal setting. Objectives: To assess the effectiveness of systematic preconception genetic risk assessment to improve reproductive outcomes in women and their partners who are 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. 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 the registers: 25 June 2015. Date of latest search of all other sources: 10 December 2014. Selection criteria: Any randomised or quasi-randomised control trials (published or unpublished) comparing reproductive outcomes of systematic preconception genetic risk assessment for thalassaemia

Background: Globally, about five per cent of children are born with congenital or genetic disorders. The most common autosomal recessive conditions are thalassaemia, sickle cell disease, cystic fibrosis and Tay-Sachs disease, with higher carrier rates in specific patient populations. 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 genetic counselling 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 improve reproductive outcomes in women and their partners who are 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. 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 the registers: 20 June 2017. Date of latest search of all other sources: 16 November 2017. Selection criteria: Any randomised or quasi-randomised controlled trials (published or unpublished) comparing reproductive outcomes of systematic p

Background: Globally, about five per cent of children are born with congenital or genetic disorders. The most common autosomal recessive conditions are thalassaemia, sickle cell disease, cystic fibrosis and Tay-Sachs disease, with higher carrier rates in specific patient populations. 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 genetic counselling is only offered in an antenatal setting. Objectives: To assess the effectiveness of systematic preconception genetic risk assessment to improve reproductive outcomes in women and their partners who are 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. 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 the registers: 25 June 2015. Date of latest search of all other sources: 10 December 2014. Selection criteria: Any randomised or quasi-randomised control trials (published or unpublished) comparing reproductive outcomes of systematic preconception genetic risk assessment for thalassaemia

Optimizing maternal health and improving reproductive outcomes are widely acknowledged as major challenges in the health care system. Care during the antenatal period has been the focus of improving maternal health and reproductive outcomes. Yet, evidences have shown that antenatal care alone is not enough. Initiating care before conception or preconception care could be potentially effective to further improve maternal health and reproductive outcomes. Preconception care encompasses a range of health promotion, risk assessment, preventative and curative interventions for women of reproductive age to reduce risks that potentially affect reproductive outcomes. It aims to provide prospective parents information and support with regards to preconception interventions that are beneficial for the parents and future children. Primary care providers are often being urged to provide preconception care as part of primary care services. In support of preconception interventions, there has been increasing evidences for such interventions. However, existing reviews or studies of preconception interventions have been limited by being risk specific, for example; focussing on folate supplementation or women with diabetes. Adding to this, interventions were reported mainly carried out in the secondary care settings. There is still paucity of evidence that comprehensively evaluate the impact of providing preconception care as a systematic approach involving multifactorial risk factors and, in particular, in primary care. Preconception care involved a range of risk assessment; assessment of genetic risk is no exception. The aim of preconception care for genetic risks is to allow women or prospective parents the opportunity to have informed reproductive decisions of future pregnancies. However, experience of offering preconception care in addressing genetic risks is yet less explored. This thesis specifically sought to evaluate the potential impact of preconception care involving asse