scholarly journals Newborn bloodspot screening in the time of COVID-19

2021 ◽  
Author(s):  
Ronda F. Greaves ◽  
James Pitt ◽  
Candice McGregor ◽  
Meaghan Wall ◽  
John Christodoulou
Keyword(s):  
Newborn Bloodspot Screening

scholarly journals Successful Implementation of Newborn Screening for Hemoglobin Disorders in the Philippines

2021 ◽  
Vol 7 (2) ◽  
pp. 30
Author(s):  
Carmencita D. Padilla ◽  
Bradford L. Therrell ◽  
Maria Melanie Liberty B. Alcausin ◽  
Reynaldo C. de Castro ◽  
Maria Beatriz P. Gepte ◽  
...  
Keyword(s):  
Newborn Screening ◽  
High Performance ◽  
Population Data ◽  
The Philippines ◽  
Successful Implementation ◽  
Clinical Experiences ◽  
Term Care ◽  
Confirmatory Testing ◽  
Newborn Bloodspot Screening

The Philippine newborn bloodspot screening (NBS) program began in 1996 with 24 hospitals and was formalized by legislation in 2004. The NBS panel was recently expanded to include a number of additional hereditary congenital conditions. Expertise and experiences from other NBS programs already screening for hemoglobinopathies were essential to its successful integration into the ongoing dried bloodspot NBS program in the Philippines. Building on clinical experiences and population data from Filipinos born in California, USA, hemoglobinopathies (including thalassemias) were selected for inclusion in the expanded screening panel. Hemoglobinopathy NBS, using high performance liquid chromatography, was implemented in a stepwise manner into the seven regional NBS screening laboratories. A central university laboratory provides confirmatory testing using both capillary electrophoresis and molecular methodologies. NBS results indicating carriers are followed up with educational fact sheets, while results of presumptive disease are referred for confirmatory testing and follow-up with a hematologist. Long-term care is provided through newborn screening continuity clinics across the country. Hemoglobinopathy NBS is now included in the national insurance package and screening uptake continues to increase nationally, exceeding 90% of all newborns in 7400+ hospitals and birthing centers nationwide prior to the COVID-19 pandemic.

scholarly journals Qualitative exploration of health professionals’ experiences of communicating positive newborn bloodspot screening results for nine conditions in England

BMJ Open ◽  
2020 ◽  
Vol 10 (10) ◽  
pp. e037081 ◽  
Author(s):  
Jane Chudleigh ◽  
Holly Chinnery ◽  
Jim R Bonham ◽  
Ellinor Olander ◽  
Louise Moody ◽  
...  
Keyword(s):  
Health Professionals ◽  
Good Practice ◽  
Future Research ◽  
Structured Interviews ◽  
Health Service Provider ◽  
Registration Number ◽  
Insufficient Time ◽  
Newborn Bloodspot Screening ◽  
Qualitative Exploration ◽  
Time And Energy

ObjectiveTo explore health professionals’ experiences of communicating positive newborn bloodspot screening (NBS) results, highlight differences, share good practice and make recommendations for future research.DesignQualitative exploratory design was employed using semi-structured interviewsSettingThree National Health Service provider organisations in EnglandParticipantsSeventeen health professionals involved in communicating positive newborn bloodspot screening results to parents for all nine conditions currently included in the newborn bloodspot screening programme in England.ResultsFindings indicated variation in approaches to communicating positive newborn bloodspot screening results to parents, largely influenced by resources available and the lack of clear guidance. Health professionals emphasised the importance of communicating results to families in a way that is sensitive to their needs. However, many challenges hindered communication including logistical considerations; difficulty contacting the family and other health professionals; language barriers; parental reactions; resource considerations; lack of training; and insufficient time.ConclusionHealth professionals invest a lot of time and energy trying to ensure communication of positive newborn bloodspot screening results to families is done well. However, there continues to be great variation in the way these results are communicated to parents and this is largely influenced by resources available but also the lack of concrete guidance. How best to support health professionals undertaking this challenging and emotive task requires further exploration. We recommend evaluation of a more cohesive approach that meets the needs of parents and staff while being sensitive to the subtleties of each condition.Trial registration numberISRCTN15330120

scholarly journals Understanding Midwives’ Preferences for Providing Information About Newborn Bloodspot Screening

2018 ◽  
Vol 3 (1) ◽  
pp. 238146831774617 ◽  
Author(s):  
Stuart James Wright ◽  
Fiona Ulph ◽  
Tina Lavender ◽  
Nimarta Dharni ◽  
Katherine Payne
Keyword(s):  
Conjoint Analysis ◽  
Discrete Choice Experiment ◽  
Discrete Choice ◽  
Choice Experiment ◽  
Screening Program ◽  
Stated Preference ◽  
Information Provision ◽  
Stated Preference Survey ◽  
Newborn Bloodspot Screening ◽  
Types Of Information

Background: Understanding preferences for information provision in the context of health care service provision is challenging because of the number of potential attributes that may influence preferences. This study aimed to identify midwives’ preferences for the process and outcomes of information provision in an expanded national newborn bloodspot screening program. Design: A sample of practicing midwives completed a hybrid-stated preference survey including a conjoint analysis (CA) and discrete choice experiment to quantify preferences for the types of, and way in which, information should be provided in a newborn bloodspot screening program. Six conjoint analysis questions captured the impact of different types of information on parents’ ability to make a decision, and 10 discrete choice experiment questions identified preferences for four process attributes (including parents’ ability to make a decision). Results: Midwives employed by the UK National Health Service (n = 134) completed the survey. All types of information content were perceived to improve parents’ ability to make a decision except for the possibility of false-positive results. Late pregnancy was seen to be the best time to provide information, followed by day 3 postbirth. Information before 20 weeks of pregnancy was viewed as reducing parents’ ability to make a decision. Midwives preferred information to be provided by an individual discussion and did not think parents should receive information on the Internet. Conclusion: A hybrid stated preference survey design identified that a wide variety of information should be provided to maximize parents’ ability to make a decision ideally provided late in pregnancy or on day 3 postbirth.

scholarly journals Eliciting Preferences for Information Provision in Newborn Bloodspot Screening Programs

2017 ◽  
Vol 20 (4) ◽  
pp. 651-661 ◽  
Author(s):  
Stuart J. Wright ◽  
Fiona Ulph ◽  
Nimarta Dharni ◽  
Katherine Payne
Keyword(s):  
Information Provision ◽  
Screening Programs ◽  
Newborn Bloodspot Screening

scholarly journals Stakeholder attitudes towards the role and application of informed consent for newborn bloodspot screening: a study protocol

BMJ Open ◽  
2014 ◽  
Vol 4 (11) ◽  
pp. e006782 ◽  
Author(s):  
S G Nicholls ◽  
L Tessier ◽  
H Etchegary ◽  
J C Brehaut ◽  
B K Potter ◽  
...  
Keyword(s):  
Informed Consent ◽  
Study Protocol ◽  
Newborn Bloodspot Screening ◽  
Stakeholder Attitudes

scholarly journals Process evaluation of co-designed interventions to improve communication of positive newborn bloodspot screening results

BMJ Open ◽  
2021 ◽  
Vol 11 (8) ◽  
pp. e050773
Author(s):  
Jane Chudleigh ◽  
Pru Holder ◽  
Louise Moody ◽  
Alan Simpson ◽  
Kevin Southern ◽  
...  
Keyword(s):  
Newborn Screening ◽  
Process Evaluation ◽  
Healthcare Professionals ◽  
Normalisation Process Theory ◽  
Future Research ◽  
Health Service Provider ◽  
Laboratory Staff ◽  
Newborn Bloodspot Screening ◽  
Screening Result ◽  
Contextual Barriers

ObjectiveTo implement and evaluate co-designed interventions to improve communication of positive newborn bloodspot screening results and make recommendations for future research and practice.DesignA process evaluation underpinned by Normalisation Process Theory.SettingThree National Health Service provider organisations in England.ParticipantsTwenty-four healthcare professionals (7 newborn screening laboratory staff and 24 clinicians) and 18 parents were interviewed.InterventionsThree co-designed interventions were implemented in practice: standardised laboratory proformas, communication checklists and an email/letter template.Primary outcome measuresAcceptability and feasibility of the co-designed interventions.ResultsAuditing the implementation of these interventions revealed between 58%–76% of the items on the laboratory proforma and 43%–80% of items on the communication checklists were completed. Interviews with healthcare professionals who had used the interventions in practice provided positive feedback in relation to the purpose of the interventions and the ease of completion both of which were viewed as enhancing communication of positive newborn bloodspot screening results. Interviews with parents highlighted the perceived benefit of the co-designed interventions in terms of consistency, pacing and tailoring of information as well as providing reliable information to families following communication of the positive newborn bloodspot screening result. The process evaluation illuminated organisational and contextual barriers during implementation of the co-designed interventions in practice.ConclusionVariations in communication practices for positive newborn bloodspot screening results continue to exist. The co-designed interventions could help to standardise communication of positive newborn screening results from laboratories to clinicians and from clinicians to parents which in turn could improve parents’ experience of receiving a positive newborn bloodspot screening result. Implementation highlighted some organisational and contextual barriers to effective adoption of the co-designed interventions in practice.Trial registration numberISRCTN15330120.

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