Loss to follow-up in maternal and newborn care; my experience with communities and way forward
Loss to follow-up (LTFU) has been widely known to be a problem of clinical settings most especially in HIV/AIDS interventions such as Prevention of Mother to Child Transmission and other related treatment programmes. However it is also becoming a serious concern in maternal and newborn healthcare (MNH). Reducing maternal and newborn mortality requires focusing on interventions at both health facility and community level. This necessitates following up mothers and newborns after hospital. But this requires knowledge of their locations, an effort that has met various challenges. Having been involved in designing follow-up protocols for various maternal and newborn studies in eastern Uganda, I have noticed that LTFU challenges cut across rural and urban areas. These can be grouped into two categories including: information system and socioeconomic challenges.
Follow-up in maternal and newborn care begin with knowing who to follow up and so necessitates capturing of vital identification details. However the Hospital Management Information System (HMIS) registers as primary tools of data collection limit this to Village, Person names and Telephone contacts. This information system allows one-time data capture and will capture details of mother-newborn pair as at time of birth. However, people change locations after delivery. This has been very common among teenage mothers and urban populations. We have observed teenagers moving to be nursed by their mothers and moving back to their husbands in 2-3 weeks after delivery, Women moving from rural areas for short stay near hospitals for delivery and moving back shortly after birth.
All these changes in location are never captured in the system to facilitate possible follow-up during outreaches. Where newborn follow-up clinics are established at facilities, the HMIS has no protocol for updating previous records captured at delivery instead a new set of records is captured. This makes data linkage a problem with a lot of duplication and un-matching patient identification numbers. The would be chance to update the system is during the postnatal care (PNC) visit but this important visit is rarely honored by both urban and rural women. This causes a big drop from retrospectively generated sample lists thereby causing a big gap of LTFU. This further affects the outreaches as women are untraceable in the wider village. Where more identifiers like next of kin, physical location descriptions and more than one telephone number are captured for prospective follow-up, these efforts have often been affected by a wider range of socioeconomic differences;
In rural areas a big proportion of telephone contacts become irrelevant as they are never on due to lack of electricity to charge the batteries. Solar systems as source of electricity is far from reach while it sounds like a dream for most rural poor. Mobile telephone coverage is still low in rural areas and sometimes the given numbers are for relatives living far in different geographic locations. The names of mothers add to the big challenge. Mothers in the community are commonly referred to by their firstborns like “Mama X” and real names are never known in the community. Where paternity of the baby is doubtable, real names of are often hidden. Lack of real names makes the information system irrelevant for follow-up.
Also given high poverty levels among urban poor, struggling for shelter leads to rampant migrations due to various reasons ranging from high rental dues and moving nearer to better job opportunities. To some extent domestic violence has also contributed to migrations among rural and urban households thus making follow-up of mothers and newborns in community a big challenge.
That said, more precise approaches have been tested to reduce LTFU challenges. The commonest one is attaching a village health team (VHT) member or also known as community health worker (CHW) to each mother/s in that village. CHWs have been found to be more in-touch with mothers. Designs that have used this approach have reported less gaps in follow-up. Relatedly, some maternal – newborn cohorts have gone advanced and invested in Geographic Information Systems (GIS) to map out geographic locations of women and newborns, roads and physical infrastructure surrounding locations to be followed-up. Some have added a “Notice-to migrate” where a mother leaves a notice at the current location detailing her new location. This helps with the capture of new location into the GIS. Geographic visualization provides a precise and quick display of spatial orientation of populations by location, name, and routes to those locations/homes.
Location of mother and newborn is an important factor in delivering maternal and newborn healthcare. Government should take interest in this by improving and investing into more precise information systems at national scale that enable short and long term location and follow-up of mothers and newborns after hospital. We should start thinking of National Street coding, household numbering and geo-referencing of all households. Loss to follow-up will become easier if all women have a house reference number that can be captured during antenatal care and referenced at delivery and discharge. This will facilitate smooth follow-up and enable bringing care much more closely to mothers and newborns after delivery thereby reducing mortality.
*** The writer Mr. Darious Kajjo is a GIS specialist working as a Field data coordinator with Preterm Birth Initiative East Africa (PTBi) in Uganda.