Communication of carrier status information following universal newborn screening for sickle cell disorders and cystic fibrosis: qualitative study of experience and practice.

OBJECTIVES: To describe and explore current practice, methods and experience of communicating carrier status information following newborn screening for cystic fibrosis (CF) and sickle cell (SC) disorders, to inform practice and further research. DESIGN: Three linked qualitative studies. SETTING: All nine health regions in England. PARTICIPANTS: Child health screening coordinators in all English health regions, health professionals communicating results to parents and parents of newborn carriers. METHODS: A preliminary phase of semi-structured telephone interviews with child health screening coordinators in all nine English health regions, and thematic analysis of data; semi-structured face-to-face interviews with purposeful samples of 67 family members of 51 infants identified by universal newborn screening as carriers of CF or SC with data analysis by constant comparison; and semi-structured telephone interviews, and focus groups, with a key informant sample of 16 differing health professionals currently tasked with communicating results to parents in a range of ways, with thematic analysis of data. RESULTS: Methods for and respondents' experiences of communication of carrier results varied considerably within and between regions, and within and between SC and CF contexts. Approaches ranged from letter or telephone call alone, to in-person communication in the clinic or at home, with health professionals from haemoglobinopathy, CF, screening and genetics backgrounds, or from community and primary care, such as health visitors with SC carrier results. Health professionals identified pros and cons of different methods, preferring opportunity for face-to-face communication with parents where possible, particularly for CF carrier results. They were concerned by regional variations in protocols, the lack of availability of translated information on SC carrier results, and the feasibility of sustaining more 'specialist' involvement at current levels, particularly for SC carriers. Parents were often poorly prepared for the possibility of a newborn carrier result. Some had felt overloaded by screening information received during pregnancy or prior to newborn screening, or found this information failed to meet their needs. Opportunity for face-to-face communication of results was valued by parents of SC carriers and appeared particularly necessary for those without prior knowledge of SC carrier status or where English was not their first language. Indirect communication of results by letter appeared effective and feasible for parents more aware of SC carrier status from antenatal or earlier experience, and where this communication contained an unambiguous opening statement emphasising 'your child is not ill'. Face-to-face communication of CF carrier results by professionals with screening, CF or genetics backgrounds worked well for parents, but communication and information was crucially lacking at the earlier stage of repeat blood spot testing, creating considerable distress among half of respondents. Respondents had no particular preference for the type of health professional who communicated results to them, as long as they were well informed and could answer their queries. Parents regarded carrier results as valuable information gained fortuitously. CONCLUSIONS: Methods of communication of newborn carrier results vary considerably across England. Parents' needs for timely and appropriate information may not be met consistently or adequately. Respondents' experiences suggest a need for greater recognition of communication with individuals occurring across a screening pathway, rather than as a discrete event.

Reproductive health in rural Malawi: a population-based survey.

OBJECTIVES: To assess pregnancy outcome, maternal mortality and health-seeking behaviour in a rural African population and to assess the effects on these of women's education, distance from a health centre and household type. DESIGN: Descriptive population-based study. SETTING: A rural community in southern Malawi. POPULATION: All women living in the catchment area of a rural health centre. METHODS: Interviews with women in 20,649 households using structured questionnaires. MAIN OUTCOME MEASURES: Pregnancy outcome, the effect of women's education, distance from a health centre and household type on pregnancy outcome, maternal morbidity and estimates of maternal and perinatal mortality. RESULTS: Educational level was lower for women than for men. A significant association was found between educational level and fertility. Women aged 45-49 reported an average of six pregnancies with four resulting in currently living children. Successful pregnancy outcome was more likely with increased education and if the woman lived closer to the health centre. Despite living an average of 5 km from the health centre, over 90% of women attended antenatal clinic with a mean of five visits. Assistance at delivery by a trained health care worker was more likely as education increased and was less likely as distance from the health centre increased. Maternal mortality was reported at 413 per 100,000 deliveries (95% CI 144-682). The perinatal mortality rate in this population was estimated at 30 per 1000. An increased perinatal mortality was noted for women who were delivered by a female relative. Perinatal mortality rates were similar for delivery by a traditional birth attendant or a trained nurse-midwife. Education and proximity to the health centre were both associated with improved outcome. CONCLUSIONS: Many women in this rural community suffer the consequences of high pregnancy loss. Maternal and perinatal mortality are high. Improved education and skilled assistance at delivery can result in improved pregnancy outcome. Proximity of any household to a health centre has an effect on outcomes.

Determinants of linear growth and predictors of severe stunting during infancy in rural Malawi.

UNLABELLED: Stunting is common among children under 5 y of age in sub-Saharan Africa. Several risk factors have been associated with poor growth but few studies have prospectively addressed the development of linear growth faltering and stunting during the first year of life. The present study was designed to analyse typical growth among rural Malawian infants, focusing particularly on the impact of birth size, adherence to feeding guidelines and morbidity in the development of severe stunting during infancy. A community-based cohort of 613 singleton newborns was prospectively followed by monthly home visits. Data were collected on the children's socioeconomic background, maternal size and weight gain during pregnancy, birth events, morbidity, breastfeeding and complementary feeding, growth and mortality. Univariate and multivariate analyses were used to determine associations between predictor variables and poor linear growth. The proportions of stunted infants (Height-for-age Z-score < -2) at 3, 6 and 9 mo of age were 27%, 51%, and 63%, respectively. At I y of age, over two-thirds (71%) of the infants were at least moderately (HAZ < -2) and 31% severely stunted (HAZ < -3). CONCLUSION: The strongest predictor of severe stunting at 12 mo of age was small birth size. Other variables independently associated with this outcome included inappropriate complementary feeding, high morbidity, maternal short stature, male gender, and home delivery. Faltering of linear growth started soon after birth and continued throughout infancy. Interventions increasing birth size could have a significant role in the prevention of early childhood stunting. The ideal strategy should also emphasize the importance of appropriate infant feeding and decreasing the number of illness episodes amongst the infants.

Breastfeeding and complementary feeding practices in rural Malawi.

UNLABELLED: To facilitate optimal growth of newborns, many countries have developed infant feeding recommendations, usually suggesting 4-6 mo of exclusive breastfeeding and then the gradual introduction of complementary foods. We prospectively studied the changes in infant diets and predictors of adherence to national infant feeding recommendations in a cohort of 720 newborn babies in rural Malawi, Sub-Saharan Africa. Monthly interviews of the main guardians indicated that breastfeeding was universal for 18 mo. As most babies were given water or other supplemental foods soon after birth, the exclusive breastfeeding rates were only 19%, 8%, 2% and 0% at ages 1, 2, 3 and 4 mo, respectively. Complementary foods and family foods were introduced at median ages of 2.5 and 6.3 mo, i.e. much earlier than recommended. Better adherence to recommendations was associated with smaller number of children in the family, increased maternal education and some other socio-economic or environmental variables. CONCLUSION: Exclusive breastfeeding is uncommon and complementary foods were introduced early to newborns among these rural families. Education and family planning may improve adherence to infant feeding recommendations and reduce the incidence of early childhood malnutrition in Malawi.

Gestational health and predictors of newborn weight amongst pregnant women in rural Malawi.

This study was conducted to provide community-based data on maternal health and predictors of newborn weight in rural Malawi. Data were obtained prospectively from a community-based cohort of 581 pregnant women who attended an antenatal clinic and delivered a term, live-born, singleton infant in Lungwena, rural Malawi. Morbidity from infectious diseases and anaemia was common. Maternal weight gain in rural Malawi was slower but fundal height gain was comparable to that of an affluent western population. The mean +/- SD weight of term newborns was 3.2 +/- 0.5 kilograms. A regression model including data from all routine investigations explained only 24% of the variance in newborn weights, suggesting that routine antenatal measurements had a limited power to predict the size of term live-born babies. Maternal parity, initial weight, the duration of pregnancy and gestational weight gain were associated with newborn weights and should, therefore, be systematically recorded in rural Malawian antenatal clinics.

Epidemiology and predictors of infant morbidity in rural Malawi.

In rural Malawi, 703 newborns were visited monthly for 1 year to describe the epidemiology and health-seeking behaviour during acute episodes of diarrhoea, respiratory infections (ARI) and malaria. On average, the infants suffered from 1.3 annual episodes (11.0 illness days) of diarrhoea, 1.1 episodes (9.4 days) of ARI and 0.7 episodes (4.8 days) of malaria. Multivariate analysis with polychotomous logistic regression indicated that the amount of morbidity was associated with the child's area of residence, weight in early life, number of siblings, father's marital status and the source of drinking water. Diarrhoea and malaria were most common at 6-12 months of age and during the rainy months whereas respiratory infections peaked at 1-3 months of age and in the cold season. Ten per cent of diarrhoea, 9% of ARI and 7% of malaria episodes lasted for more than 14 days. Fifty-eight infants died, giving case fatality rates of 1% for diarrhoea, 2% for ARI and 4% for malaria. One-third (37%) of the illness episodes were managed at home without external advice. A traditional healer was consulted in 16% of episodes and a medical professional in 55% of episodes. If consulted, traditional healers were seen earlier than medical professionals (median duration after the onset of symptoms 0.7 vs. 1.8 days, P < 0.001). Traditional healers were significantly more commonly used by those families whose infants died than by those whose infants did not die (odds ratio 1.8, 95% CI 1.1, 3.0). Our results emphasise the influence of seasonality, care and living conditions on the morbidity of infants in rural Malawi. Case fatality for diarrhoea, ARI and malaria was high and associated with health-seeking behaviour among the guardians. Future interventions must aim at early and appropriate management of common childhood illnesses during infancy.

The relationship between antenatal risk characteristics, place of delivery and adverse delivery outcome in rural Malawi.

OBJECTIVE: To describe and compare the frequency of antenatally identified maternal 'risk' characteristics, place of delivery and occurrence of delivery complications. METHODS: A prospective cohort study of 780 pregnant women completing antenatal follow-up at a rural health center in Malawi. RESULTS: Three-quarters of the subjects had at least one commonly accepted risk characteristic. Only 30% of these women, and 22% of those with no risk characteristics, delivered in a modern health facility. Four women died, 127 experienced other delivery complications and there were 52 perinatal deaths. The 'at-risk' classification had over 80% sensitivity but less than 30% specificity to predict delivery complications or perinatal deaths. The positive predictive values were as low as 20% for delivery complications and 7% for perinatal mortality. Most individual 'risk' characteristics were not associated with adverse delivery outcomes, even when adjusted for the place of delivery. CONCLUSIONS: Antenatal risk identification failed to promote safe deliveries because of a poor predictive value of the 'risk' variables and the failure of the identified 'at-risk' individuals to deliver in modern health facilities.

The importance of preterm births for peri- and neonatal mortality in rural Malawi.

Peri- and neonatal mortality remain high in developing countries, especially in sub-Saharan Africa. In the present study, we quantified and identified the most important predictors of early mortality in rural Malawi. Data were obtained from a community-based cohort of 795 pregnant women and their 813 fetuses, followed prospectively from mid-pregnancy. In this group, peri- and neonatal mortality rates were 65.3 deaths per 1000 births and 37.0 deaths per 1000 live births respectively. When controlled for month of birth, maternal age and selected socio-economic variables, preterm birth was the strongest independent predictor of both peri- and neonatal mortality (adjusted odds ratios 9.6 for perinatal and 11.0 for neonatal mortality; 95% confidence intervals: [4.4, 21.0] and [3.7, 32.7] respectively). Weaker risk factors for mortality included a maternal history of stillbirth and abnormal delivery. Preterm delivery was associated with primiparity and peripheral malaria parasitaemia of the mother, and it accounted for 65% of the population-attributable risk for perinatal and 68% of the neonatal mortality. Successful intervention programmes to reduce peri- and neonatal mortality in Malawi have to include strategies to predict and prevent prematurity.

Placental haemozoin and malaria in pregnancy.

Malaria infections in pregnant women cause poor birth outcomes. Malaria pigment (haemozoin) accumulates in the placenta within macrophages and extracellularly, but its pathological significance is not understood. In order to study the potential role of haemozoin in malaria pathogenesis, we enrolled primigravid women at a Malawian government antenatal clinic and followed them through delivery. One hundred and thirteen women (71 per cent) out of 159 women followed through delivery were parasitaemic at least once. Mean placental haemozoin concentrations were significantly higher in women with delivery parasitaemias (223 ng/mg protein) than in women who never had a detectable parasitaemia (43 ng/mg protein; P<0.05), but were not significantly higher in women who were parasitaemic only during the antenatal period (67 ng/mg protein). Haemozoin was not associated with preterm delivery (PTD) or intrauterine growth retardation (IUGR) (P -values, 0.307-0.787). Thus, placental haemozoin is associated with malaria infection at the time of delivery and does not seem to be associated with poor birth outcome.

Antenatal and perinatal predictors of infant mortality in rural Malawi.

BACKGROUND: The slow pace in the reduction of infant mortality in sub-Saharan Africa has partially been attributed to the epidemic of human immunodeficiency virus (HIV) infection. To facilitate early interventions, antenatal and perinatal predictors of 1st year mortality were identified in a rural community in southern Malawi. METHODS: A cohort of 733 live born infants was studied prospectively from approximately 24 gestation weeks onwards. Univariate analysis was used to determine relative risks for infant mortality after selected antenatal and perinatal exposures. Multivariate modelling was used to control for potential confounders. FINDINGS: The infant mortality rate was 136 deaths/1000 live births. Among singleton newborns, the strongest antenatal and perinatal predictors of mortality were birth between May and July, maternal primiparity, birth before 38th gestation week, and maternal HIV infection. Theoretically, exposure to these variables accounted for 22%, 22%, 17%, and 15% of the population attributable risk for infant mortality, respectively. INTERPRETATION: The HIV epidemic was an important but not the main determinant of infant mortality. Interventions targetting the offspring of primiparous women or infants born between May and July or prevention of prematurity would all have considerable impact on infant survival.

Socio-economic support for good health in rural Malawi.

OBJECTIVE: To study the socio-economic support for good health among subsistence farmers in rural Malawi. DESIGN: A cross-sectional survey. SETTING: Lungwena, a rural area with 17,000 inhabitants in southern Malawi. PARTICIPANTS: Seven hundred and ninety five pregnant women who attended the antenatal clinic at Lungwena Health Centre between June 1995 and September 1996. INTERVENTIONS: Interviews about socio-economic conditions. Measurements of cultivated land areas and distances between home and the local health centre. MAIN OUTCOME MEASURES: Proportion of households lacking literate adults, adequate water source and sanitation, easy access to modern health care or food security. RESULTS: Only 14% of the interviewed women could read and write and half of the households had no literate members. Every fifth household was lacking both an access to safe drinking water and a proper sanitary facility. The distance to the health centre was more than 5 km among half of the households and only 37% had enough land to grow food for all family members. When other potential means of obtaining food were taken into account, 27% of the households had no food security. Numerous households were lacking more than one socio-economic prerequisites of good health: three or more were missing from a quarter of the families. CONCLUSIONS: Socio-economic prerequisites of health were commonly missing in Lungwena. Subsequent health interventions should strengthen the investments into general poverty alleviation.

Childhood immunization in rural Malawi: time of administration and predictors of non-compliance.

A cohort of 760 newborns was followed prospectively for 2 years to ascertain the time of administration of childhood vaccinations in rural Malawi and to study predictors of non-compliance with national vaccination recommendations. At 1 year of age, 99% of the infants were fully vaccinated against tuberculosis, 91% against polio, 90% against diphtheria, pertussis and tetanus and 64% against measles. At 2 years, the corresponding vaccination coverages were 99%, 93%, 93% and 84%. On average, all vaccinations were given 1-3 months later than recommended. Many of the delayed measles vaccinations were given during a separate vertical campaign, during which 25% of previously unvaccinated 21-23-month-old children were identified and immunized. Non-compliance with vaccination recommendations was associated with living in villages with no access to mobile vaccination teams, birth between April and June and birth at home. In this rural Malawian area, most vaccination services were functioning well. To increase measles vaccination coverage, regular outreach activities should be encouraged.

The impact of malarial infection and diet on the anaemia status of rural pregnant Malawian women.

OBJECTIVE: To investigate haematological and biochemical iron indices in relation to malaria, gravida, and dietary iron status in rural pregnant Malawian women. DESIGN: In this self-selected sample, haemoglobin, haematocrit, red cell indices, serum ferritin, serum iron, serum transferrin, and serum transferrin receptor (TfR) were measured. Infection was assessed by a malaria slide, serum C-reactive protein, and white blood cell count. Dietary iron variables were measured by three 24-h interactive recalls. SETTING AND SUBJECTS: 152 rural pregnant women recruited at 24 weeks gestation while attending a rural antenatal clinic in Southern Malawi; 36% were primagravid; 43% were gravida 2-4; 26% were gravida >5. RESULTS: Of the women, 69% (n=105) were anaemic (haemoglobin <110 g/l); 37% (n=39) had anaemia and malarial parasitaemia on the test day; 17% (n=26) with malaria were also classified with iron deficiency (ID) anaemia (based on serum ferritin < or = 50 microg/l and Hb <110 g/l) while an additional seven with malaria were classified with ID without anaemia. In malarial-free subjects, 32% were classified with IDA (serum ferritin <12 microg/l and Hb <110 g/l) and 17% with ID (serum ferritin <12 microg/l; Hb > or = 110 g/l). Serum TfR concentrations were elevated in anaemic women (P<0.01). In non-malarial parasitaemic subjects, serum TfR correlated negatively with haemoglobin (r=-0.313; P<0.001) but not serum ferritin. Of the women, 49% were at risk for inadequate iron intakes. Most dietary iron was non-haem; plant foods provided 89%; flesh foods (mainly fish) only 9%. Malarial parasitaemia and intakes of available iron impacted significantly on iron status. CONCLUSION: Anaemia prevalence from all causes was high (that is, 69%); three factors were implicated: malaria, and deficiencies of iron and possibly folate, induced partly by an inadequate dietary supply and/or secondary to malarial parasitaemia. SPONSORSHIP: International Development Research Centre (IDRC) of Canada. Opportunities for Micronutrient Interventions (OMNI) Project. Natural Sciences and Engineering Research Council of Canada.

Malaria infection during pregnancy: intrauterine growth retardation and preterm delivery in Malawi.

In sub-Saharan Africa, malaria infection in pregnancy contributes to low birth weight through intrauterine growth retardation (IUGR) and preterm delivery (PTD). It was hypothesized that malaria-associated PTD and IUGR have differing etiologies due to timing of infection. In a prospective cohort of primigravid women enrolled at the antenatal clinic of Mangochi District Hospital in Malawi, the associations were investigated between antenatal or delivery parasitemias and IUGR or PTD. Among 178 singleton deliveries, 35% of infants were preterm or had IUGR. Cord blood parasitemia (odds ratio [OR]=3.34; 95% confidence interval [CI], 1.3-8.8], placental parasitemia (OR=2.43; 95% CI, 1.2-5.1), and postdelivery maternal peripheral parasitemia (OR=2.78; 95% CI, 1.3-6.1) were associated with PTD. Parasitemia and/or clinically diagnosed malaria in the antenatal period was associated with IUGR (OR=5.13; 95% CI, 1.4-19.4). Delivery parasitemias had borderline associations with IUGR. The risk patterns observed suggest that the timing and severity of infection influences the occurrence of IUGR or PTD.

Packaged treatment for first-line care in cerebral malaria and meningitis.

Described are the results of a trial carried out from January to June 1996 in southern Malawi to determine the effectiveness of a treatment pack for infants and children under the age of 6 years, who presented as emergencies to rural health centres with presumptive diagnoses of severe/cerebral malaria or meningitis. Each complete treatment pack (approximate cost, US$ 6) contained, inter alia, intramuscular quinine, intramuscular choloramphenicol, dextrose, paraldehyde, a nasogastric tube, prepacked syringes, and sterile water. A modified coma score and drug dosage nomogram were also included in the package. Despite a considerable drop in overall mortality, problems arose with regard to the incomplete treatment of possible meningitis and in the development of a rational referral policy.

PIP: The majority of infants and young children in Malawi receive their medical care from rural health centers that are minimally equipped for emergencies and lack laboratory facilities. A pilot project conducted in southern Malawi's Mangochi District in December-June 1996 assessed the effectiveness of a treatment pack for children under 6 years of age who presented to rural health centers with presumptive diagnoses of severe/cerebral malaria or meningitis. Each pack (cost, US$6) contained intramuscular quinine and chloramphenicol, dextrose, paraldehyde, a nasogastric tube, prepackaged syringes, sterile water, a modified coma score, and a drug dosage nomogram. Records for 64 infants and children admitted to 10 health centers with malaria or meningitis in the 6 months preceding the trial (July-December 1995) were compared with those for 96 infants and children who presented to 19 centers during the study period with these diagnoses. Only 63% of children in the latter group received the full treatment outlined in the study protocol. 52% of children in the pretrial group and 31% of those in the intervention group were completely treated in the health center; the remainder were referred for hospital care. The case fatality rate was 51% in the pretrial period and 23% in the trial phase--a rate comparable to that obtained in hospital settings. Most children died awaiting transport to the hospital. Of concern are difficulties differentiating between meningitis and severe or cerebral malaria at the health center level. The estimated cost of each life saved at the health center was $29 compared with $30 when cases were transferred by ambulance to the hospital. Further controlled studies are needed to determine whether these treatment packs can be used routinely at the periphery.

Dietary interventions to prevent zinc deficiency.

This review describes household dietary strategies to improve the content and bioavailability of zinc in predominantly plant-based diets and the implementation of these strategies in a community-based dietary intervention study in rural southern Malawi. The strategies involve increasing intakes of foods with high bioavailable-zinc contents, absorption enhancers, or both and using germination, fermentation, and soaking to reduce intake of phytic acid, a potent inhibitor of zinc absorption. The strategies were implemented at the household level in Malawi through a participatory research process that focused on building relationships with the community and involving them in the design, implementation, and monitoring and evaluation processes. In this way, community participation and awareness of zinc deficiency might be enhanced and the dietary strategies planned will be appropriate and sustainable.

Is zinc a limiting nutrient in the diets of rural pregnant Malawian women?

Pregnant women consuming plant-based diets are at risk of Zn deficiency; Zn requirements for fetal growth and maternal tissue accretion are high. Therefore we have studied, at 24 and 33 weeks gestation, the Zn status of eighty-seven pregnant rural Malawian women (mean age 22.7 years) who consume maize-based diets, using anthropometry, dietary intake data, plasma and hair Zn concentrations, and infection status via serum C-reactive protein, leucocyte count, and malaria blood smear. Of the women, 12% were stunted (height-for-age Z score < -2 SD) and 20% lost weight over the 9-week period; weight gain averaged 0.13 kg/week. Mean plasma Zn concentration declined significantly from 24 to 33 weeks (7.9 (SD 2.2) v. 6.6 (SD 2.0) mumol/l; P < 0.0003). Both plasma and hair Zn values were very low; nearly 50% of the women had both plasma and hair Zn values below acceptable cut-off values. No significant differences in biochemical Zn indices existed between those who tested positive and negative for infection. Cereals (mainly maize) provided more than two-thirds of mean energy intake compared with less than 5% from flesh foods. As a result about 60% of the subjects had dietary phytate:Zn molar ratios greater than 15, and more than 35% had inadequate Zn intakes based on probability estimates and WHO basal requirements. Biochemical evidence of Zn deficiency was attributed in part to low intakes of poorly available Zn. The anthropometric, biochemical, and dietary data together indicate that Zn deficiency may be a factor limiting pregnancy outcome in rural Malawian women.