Research questions were informed by consultation with many Every Newborn stakeholders [9 ,17 (link)] including WHO-led Measurement Improvement Roadmap meeting [15 ] and EN-BIRTH Expert Advisory Group (listed as author group). More than 60 participants in an EN-BIRTH study design workshop [49 ] provided representation from country partners, national stakeholders, UN agencies, leading academic and professional experts in the field, governmental and non-governmental organisations, clinicians, program managers, other key experts and donors (see Appendix S1 in
Incontinentia Pigmenti Achromians
The condition is caused by genetic mutations in the IKBKG gene, which plays a crucial role in the regulation of inflammatory and apoptotic pathways.
Incontinentia Pigmenti Achromians typically manifests in early childhood, with a characteristic progression through several stages, including inflammatory, verrucous, and hyper- and hypopigmented phases.
While the skin manifestations are the most prominent feature, the disorder can also affect other organ systems, including the central nervous system, teeth, and eyes.
Accurate diagnosis and management of Incontinentia Pigmenti Achromians requires a multidisciplinary approach, involving dermatologists, geneticists, and other healthcare professionals.
Reserach on this condition is ongoing to better understand its pathogenesis and develop more effective treatments.
Most cited protocols related to «Incontinentia Pigmenti Achromians»
Research questions were informed by consultation with many Every Newborn stakeholders [9 ,17 (link)] including WHO-led Measurement Improvement Roadmap meeting [15 ] and EN-BIRTH Expert Advisory Group (listed as author group). More than 60 participants in an EN-BIRTH study design workshop [49 ] provided representation from country partners, national stakeholders, UN agencies, leading academic and professional experts in the field, governmental and non-governmental organisations, clinicians, program managers, other key experts and donors (see Appendix S1 in
In developing the PCAT, initial priorities included 1) introduction of the steps specific to the pMTCT cascade; 2) adaptation of the interface for data entry by frontline health managers using a broadly available program such as Excel®; 3) creation of versions in English, French and Portuguese; 4) ensuring the tool uses only data available through the routine HMIS; and 5) an output design that clearly indicates which individual improvement step would lead to the largest overall efficiency gains across the pMTCT cascade.
Process mapping techniques were used to chart PMTCT cascade steps in five facilities, including ANC attendance, HIV testing and counseling, provision of prophylactic ARVs, safe delivery, safe infant feeding, infant follow-up including HIV testing, and family planning, in order to obtain site-specific knowledge of service delivery [4 (link), 27 ]. Women’s linkages into long-term HIV care and treatment services, including eligibility assessment for cART and cART initiation, were also considered as part of the pMTCT cascade. Study teams worked with staff from the ANC, maternity, postpartum, and at-risk child care settings over a number of days to draw maps of the flow of mother-infant pairs across these services. By working with facility staff to explicitly describe the sequential, linked processes of care delivery at their facility, key steps in the pMTCT cascade were highlighted [28 (link)].
After mapping the pMTCT cascade, study staff conducted discussions with health facility staff to refine the objectives of the PCAT, identify users and beneficiaries, and reach consensus on which steps of the pMTCT cascade should be included based on data availability, data quality, and their importance for achieving effective pMTCT service delivery.
Initial versions of the PCAT (designed in Excel®) were shared and discussed with 27 additional pMTCT managers and frontline nurses, including at the provincial (4 people), district (5 people from 3 districts), and facility levels (18 people from 10 health facilities). The tool was presented in a series of 1–2 hour meetings in which its understandability, usability, and appropriateness were discussed. Over the following six months the PCAT was redesigned based on continued stakeholder feedback, and pilot tested in five health facilities with pMTCT services before its introduction. The iterative development process is described in Table
Activity | Month | |||||
---|---|---|---|---|---|---|
1 | 2 | 3 | 4 | 5 | 6 | |
Initial planning meetings-researchers/program managers | X | |||||
Tool adaptation & development | X | |||||
Feedback meetings with program managers & frontline health workers | X | |||||
Tool revisions | X | |||||
Feedback meetings with program managers & frontline health workers | X | |||||
Tool revision | X | |||||
Feedback with program managers & frontline health workers | X | |||||
Tool introduction | X |
The health worker survey tool aims to measure the effects of P4P on health workers’ working conditions and attitudes towards work at the selected facilities.
The exit interview survey primarily intends to measure the effect of the P4P initiative on a range of subjective and objective indicators of quality of care for targeted and selected non-targeted services. The survey will also examine the effect of P4P on the cost of these services. Respondents eligible for interview include women of reproductive age (aged between 16 to 49 years) attending antenatal or postnatal care, or women with children under-one year of age coming for a preventive check up or an immunisation for the baby. These patients will respond to questions linked to the services targeted by P4P. Patients attending care for non-targeted services will also be interviewed. Non-targeted service users will include: women of reproductive age who are not pregnant, or children under five years of age accompanied by a woman of reproductive age, reporting with fever and no cough (as a proxy for malaria), or fever and cough (as a proxy for acute respiratory infection – ARI), or diarrhoea. These conditions were chosen as they were the three most significant conditions reported at outpatient departments in Tanzania in 2009.
A survey of women who had delivered within the previous 12 months will also be carried out. The women’s survey addresses the effects of P4P on service use during pregnancy, place of delivery, birth weight and postpartum care and care for the newborn as well as related costs and service satisfaction. Household socioeconomic status is also measured in this survey. The core indicators for each of the surveys are shown in Table
Most recents protocols related to «Incontinentia Pigmenti Achromians»
The percentage of the total population registered in the PMCI: the numerator is all individuals registered until censor date and the denominator is total population in the PMCI area as per the 2012 census of Sri Lanka;
The monthly trend in percentage of the total registered per PMCI from June 2019 to June 2021: The total percentage registered at the end of each month is calculated with the total number of individuals registered until the end of each month as the numerator and the total population in the PMCI area as per the 2012 census of Sri Lanka as the denominator. Assuming a similar trend (linear) we projected the percentage of the total that would be registered by December 2021, December 2022, and December 2023 (end of project). For this analysis only eight PMCIs which initiated registration since June 2019 were included;
The percentage of the individuals aged ≥35 years registered in the PMCI: The numerator is individuals aged ≥35 years registered until censor date and the denominator is the total number of individuals aged ≥35 years in the PMCI area as per the 2012 census of Sri Lanka. The age cut off of 35 years was chosen as the PSSP had a mandate for screening individuals aged ≥35 years for NCD risk factors;
The percentage of males among all the individuals registered in the PMCI: the percentage was calculated with the total number of males registered in the PMCI as the numerator and the total number of individuals registered in the PMCI as the denominator;
The median (IQR) percentage of the total population registered in the GN divisions of the selected PMCIs: The percentage was calculated with individuals registered from each GN division as numerator and the total population in the respective GN division as per the 2012 census of Sri Lanka as denominator. The median (IQR) of the percentages calculated for each GN division was deduced.
First, public awareness campaigns were conducted involving GNs, members of friends of facility committees (hospital management committee with community members for community engagement) and other community leaders, and the people were mobilized to the PMCIs for registration. People visiting the PMCIs were registered (passive registration). To improve the coverage, the PMCIs were encouraged to adopt opportunistic (registration of people visiting PMCI for treatment) registration, conduct outreach registration camps in the GN divisions, establish night/evening clinics for registration of the employed population, and also try active registration through house-to-house visits by healthcare workers (HCWs) or volunteers. The medical officer in-charge of the PMCI and staff nurse trained on the PSSP activities are primarily responsible for ensuring registration in the catchment area. Data entry operators (DEOs), if present in the facility, help with registration through the online HMIS.
The aggregate data on the total population (as per 2012 census of Sri Lanka) in the allotted PMCIs, stratified by assigned GN divisions and age (less than 35 years and ≥35 years), were obtained from the PMU of the PSSP. The number of individuals registered (stratified by GN divisions, age groups, and gender) was extracted from the electronic database of the registration module of HMIS. During July 2021, we extracted the data on registration from April 2019 to June 2021.
Registration included collection and documentation of demographic details in the registration module of HMIS, auto-generation of the PHN through HMIS, screening for NCD risk (in those ≥35 years or increased risk of NCD) and issuing of paper-based PHR to the registered individual. We collected information from the medical officer/staff nurse on the extent of issuing PHR to those registered (not issued/partially issued/issued to all registered).
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More about "Incontinentia Pigmenti Achromians"
This condition is caused by genetic mutations in the IKBKG gene, which plays a crucial role in regulating inflammatory and apoptotic pathways.
IPA typically manifests in early childhood, with a characteristic progression through several stages, including inflammatory, verrucous, and hyper- and hypopigmented phases.
While the skin manifestations are the most prominent feature, IPA can also affect other organ systems, such as the central nervous system, teeth, and eyes.
Accurate diagnosis and management of IPA requires a multidisciplinary approach, involving dermatologists, geneticists, and other healthcare professionals.
Ongoing research on this condition aims to better understand its pathogenesis and develop more effective treatments.
IPA is sometimes referred to as Incontinentia Pigmenti Achromians, Incontinentia Pigmenti Acromians, or IP Achromians.
IPA can be associated with other medical conditions, such as those related to the Zn2+ signaling pathway (e.g., Stata 14, SU8010, Stata 13, ZnCl2, Stata/MP v15.1) or the use of certain dyes and stains (e.g., Brilliant Blue FCF, CoCl2·6H2O, SPSS v24, SPSS version 17.0, Sulforhodamine B).
A multidisciplinary approach, including collaboration with specialists in these areas, may be beneficial for comprehensive patient care and research on IPA.