Factors Associated with Steroid Phobia in Caregivers of Children with Atopic Dermatitis

Abstract: Topical corticosteroids (TCS) are first‐line therapeutic agents for atopic dermatitis (AD). Some patients express irrational fear and anxiety about using TCS, which leads to poor outcomes for AD. Although it is important to understand the factors underlying steroid phobia so that its effects can be minimized, few studies have addressed this subject. Here, we used a questionnaire to investigate predictive factors for steroid phobia in the caregivers (usually mothers) of children with AD. We studied 436 children with AD (mean age 47.6 mos, range 2–236 mos) who newly visited our AD outpatient unit. The caregivers were asked to complete a medical history questionnaire regarding AD. Steroid phobia was analyzed for correlations with other patient and caregiver variables. Overall, 38.3% of the caregivers were reluctant to use TCS on their children’s skin. Patient characteristics female sex (odds ratio [OR] = 1.85 vs male; p = 0.005), child’s paternal history of AD (OR = 1.94; p = 0.03), and frequent changing of clinics (OR = 1.25; p = 0.03) were predictive factors for steroid phobia. AD severity did not correlate with steroid phobia. Our findings suggest that greater attention to the patient’s sex and clinical background of patients with AD is important to the success of AD therapy, regardless of AD severity.     

Measuring the impact of dermatological conditions on family and caregivers: a review of dermatology‐specific instruments

The patient is the centre of a web of relationships, and the impact of his/her disease on family members and caregivers must be taken into account. The aim of this study was to identify the specific instruments that measure the impact of a dermatological disease on the quality of life (QoL) of family members, by performing a systematic search of the literature. Fifteen papers were identified, describing the creation and validation of nine instruments. Four of them concerned atopic dermatitis (Dermatitis Family Index, DFI; Parents’ Index QoL Atopic Dermatitis, PiQoL‐AD; QoL in primary caregivers of children with atopic dermatitis, QPCAD; Childhood Atopic Dermatitis Impact Scale, CADIS), two measured the impact of psoriasis in family members (Psoriasis Family Index, PFI; FamilyPso), one the impact of epidermolysis bullosa (Epidermolysis Bullosa Burden of Disease, EB‐BoD), one of ichthyosis (Family Burden Ichthyosis, FBI), and one was generic for dermatological conditions (Family Dermatology Life Quality Index, FDLQI). The European Academy of Dermatology and Venereology quality of life taskforce recommends that the impact of a skin disease on family and caregivers should be measured as part of any thorough evaluation of the burden of a disease. Guidelines are given to choose the most appropriate instruments.     

A survey of traditional Chinese medicine use in children with atopic dermatitis attending a paediatric dermatology clinic

Use of traditional Chinese medicine (TCM) for various paediatric diseases has been popular. Often, parents or caregivers believe that herbs possess therapeutic effects without any harmful consequence. This fallacy is especially prevalent in the caregivers of children with chronic diseases such as atopic dermatitis (AD). We interviewed 227 consecutive children with AD to assess the attitudes of the caregivers to TCM use, based on a 14-item questionnaire. Of these respondents, 67 (30%) admitted that the child had been given TCM in the past 12 months, one-third of these were currently taking TCM and one-quarter had used TCM for 6 months or more. TCM was prescribed by a Chinese medicine practitioner in 63 patients (94%), and herbal tea/soup was the commonest TCM taken. The majority (94%) had not been told of any possible side effects of TCM. Nearly 60% thought that TCM helped to improve their child's AD. Respondents for children with severe eczema were less likely to think that TCM helped to improve their child's eczema than those with mild or moderate eczema. TCM use was not associated with parental ages or 'grandparent as caregiver' but 'severe AD' was an independent factor for TCM use (OR 3.24, 95% CI 1.67-6.31; p = 0.0003).     

Impairment quality of life in families of children with atopic dermatitis

Atopic dermatitis (AD) not only changes the life of the affected child but also affects the physical, social and emotional functioning of parents. The aim of the study was to assess the quality of life of parents of children with AD and to correlate it with the disease severity. It was a cross sectional, self-administered questionnaire study performed in parents of children with AD attending dermatology clinics affiliated to the College of Medicine, Qassim University, Saudi Arabia. The parents were asked to complete the validated Arabic version of the Dermatitis Family Impact (DFI) questionnaire. The severity of AD was evaluated by using the objective SCORAD index. Atopic dermatitis was considered mild when the score was <15, moderate at 15-40 and severe at >40. Out of a total of 774 children, 283 (36.6%) had mild, 259 (33.4%) moderate and 232 (30%) severe AD. The mean DFI score was 13.86±4.23. The DFI score of parents of children with severe AD (18.13±1.97) was significantly higher (P<0.001) as compared to mild (9.62±2.76) and moderate (14.68±2.26) AD. Family history of atopy in children and social class of parents had significant effect on the mean DFI scores. The highest scoring DFI domains were expenditure (mean score 1.74), sleep disturbance (mean score 1.73), food preparation (mean score 1.67) and emotional distress in parents (mean score 1.6). Tiredness and exhaustion in parents and housework were moderately affected, while the least affected areas were family leisure activity, treatment difficulties, time for shopping and relationship between family members. The severity of child's AD directly affects the quality of life of parents. The DFI is of value to guide appropriate management of children with AD and can be used as an added parameter in clinical trials concerning the management of children with AD.     

Gender differences in health-related and family quality of life in young children with atopic dermatitis

Background Atopic dermatitis (AD) has an established impact on health‐related quality of life (HRQoL) and family QoL. Objectives This study was designed to investigate gender differences in health‐related and family QoL in children with AD. Methods Cohorts of 25 girls and 25 boys with AD aged <4 years were selected from 102 children with AD. Children in the girls’ and boys’ groups were individually matched across groups for age and severity of AD according to their scores on the SCORAD Index (SCORing of Atopic Dermatitis). The children’s parents filled in the Infants’ Dermatitis Quality of Life (IDQoL) Index and the Dermatitis Family Impact (DFI) questionnaires. Results The impact of AD on QoL (P < 0.05) and family QoL (P < 0.05) was more severe in girls. The severity of AD as assessed by the parents was equal in both groups. More parents of girls reported that AD impacted on the “child’s mood” (P < 0.05) and “enjoying family activity” (P < 0.05). “Child’s mood” and “sleep disturbance” were highly scored by parents of girls (P = 0.01 and P < 0.05, respectively). Severity of AD as assessed by parents and IDQoL Index scores correlated with SCORAD scores in both groups. Scores on the DFI correlated with patient age in boys. The child’s age correlated with the emotional distress of parents in both groups and had an impact on “relationships in the family” in girls only. Several DFI items and overall family QoL correlated with patient age in boys. Conclusions The impact of AD on QoL and family QoL was more severe for girls. Relationships between parents progressively worsen with patient age in girls. Reported gender differences should be further investigated and may influence educational programs and advice given to parents of children with AD.     

Are quality of family life and disease severity related in childhood atopic dermatitis?

BACKGROUND: Atopic dermatitis (AD) can be traumatizing to family life. Little is known about the relationship between quality of life in AD and disease severity. OBJECTIVE: To document family quality of life and relate this to severity of AD in children, for a 6-month period from a given point in time. STUDY DESIGN: These data are part of a longitudinal study conducted in two parts of the UK to investigate risk factors for AD severity and its impact on quality of life. SUBJECTS: and methods Thetargetedpopulation comprised children with AD aged 5-10 years in a primary-care setting. The general practitioners identified potential subjects and the UK diagnostic criteria for AD were used to verify the diagnosis. Both the children and their parents were interviewed. Eczema severity was assessed using a modified form of the SCORAD (SCORe Atopic Dermatitis) Index (SCORAD-D) from which parents' score of itching and sleep loss were excluded. The quality of family life was quantified by the Dermatitis Family Impact (DFI) questionnaire. These two parameters were evaluated on two occasions 6 months apart. ANALYSIS: Multiple regression analysis was used to investigate the relationship between the quality of family life and the severity of the AD in the children, at a specific point in time and over the following 6-month period. RESULTS: Of the 116 children attending the first visit, mean age 8 years, 106 attended the second visit (91%) and were included in the analysis. Quality of family life was shown to be significantly affected in 48 (45%) cases at the first visit and 38 (36%) cases at the second visit. The initial means of the DFI and SCORAD-D were 2.4 and 8.2, respectively. Six months later the mean final DFI and SCORAD-D were 1.9 and 7.7, respectively. Using multiple regression on the first and second visits, each unit increase in SCORAD-D was associated with 0.21 [95% confidence interval (CI) 0.06-0.37 P = 0.008] and 0.37 (95% CI 0.15-0.59, P = 0.001) units increase in quality of family life, respectively. This relationship remained significant even after adjustment for potential confounders (black skin, social class, sex, child's age, family size and location) each unit increase in SCORAD-D led to a 0.25 unit (95% CI 0.11-0.4, P = 0.001) and 0.23 unit (95% CI 0.05-0.42, P = 0.014) increase in DFI on the first and second visits, respectively. Changes in the DFI scores were significantly related to changes in the SCORAD-D scores (regression coefficient; 0.17 (95% CI 0.06-0.29, P = 0.002). CONCLUSIONS: We show that quality of family life is related to the severity of AD in children. This confirms the importance of parental assessment of the impact of the disease in the management of AD, because the disease affects the entire family. Also, these results show the response of DFI to change predictably with disease severity. This may imply that the DFI questionnaire could be used as an extra measure of outcome in everyday clinical practice as well as in research studies.     

Family burden in epidermolysis bullosa is high independent of disease type/subtype

Epidermolysis bullosa is a rare, inherited group of disorders characterized by blistering of the skin following friction or mechanical trauma. The aim of this study was to assess the family burden of epidermolysis bullosa in children aged 0-7 years. A postal survey was conducted. The perceived severity of the disease was evaluated by the caregivers, using the Patient Global Assessment 5-point scale. The caregiver received the Family Strain Questionnaire and the 12-item General Health Questionnaire to assess the probable presence of depression/anxiety. A single-item analysis was also performed for questions related to the burden of disease. Forty-two families were invited to participate. Data from 28 young patients and their caregivers were analysed (response rate 66.7%). The family burden increased with increasing caregiver's perceived disease severity, with increasing patient's body surface involved, and if parents had depression/anxiety, reaching statistical significance in several Family Strain Questionnaire scales. The family burden due to epidermolysis bullosa is very high independent of disease type/subtype.     

Use of the Self-Administered Eczema Area and Severity Index by parent caregivers: results of a validation study

BACKGROUND: The Eczema Area and Severity Index (EASI) is used by dermatological investigators world-wide to assess eczema disease severity. EASI measures are, however, time-consuming and require trained personnel, thereby limiting its application to large-scale epidemiological studies. Additionally, the use of self-assessed severity indices in dermatology is restricted to adult subjects and conditions, thereby not addressing the needs of paediatric patients. OBJECTIVES: To develop and validate an instrument for a caregiver's self-assessment of the severity of his/her child's atopic dermatitis (AD), the Self-Administered EASI (SA-EASI). METHODS: Trained investigators performed a modified EASI assessment on the same day as an SA-EASI was obtained from 47 caregivers of children with AD. RESULTS: The SA-EASI was found to be a valid measure of the severity of AD. Total, acute and chronic SA-EASI scores predicted total, acute and chronic modified EASI scores (P < 0.0001). SA-EASI body surface area (BSA) scores predicted EASI BSA scores (P < 0.0001). SA-EASI pruritus scores correlated with the acute, chronic and total EASI scores (P = 0.0001). CONCLUSIONS: The SA-EASI may provide caregivers the means to report the severity of their child's skin disease objectively. The high correlation with the EASI score observed in this sample implies that statistical inferences with the SA-EASI will be valid for large populations. In future studies, this will permit analysis of the relationship of skin disease severity to such measures as quality of life, disability, patient satisfaction and the costs of various therapies. Moreover, this SA-EASI instrument may allow older children, over 12 years old, to assess the severity of their AD.     

The evaluation of family impact of recessive dystrophic epidermolysis bullosa using the Italian version of the Family Dermatology Life Quality Index

Background Severe skin diseases, such as epidermolysis bullosa (EB), may have a strong impact not only on patients but also on caregivers. A specific questionnaire evaluating the family impact of dermatological conditions has been created, the Family Dermatology Life Quality Index (FDLQI), but it has not yet been translated in Italian and validated. Objective To evaluate the burden of recessive dystrophic EB on family caregivers, using for the first time the Italian version of the FDLQI, and to validate the instrument. Methods Patients with recessive dystrophic EB participated in a postal survey enquiring about the burden of EB on family caregivers. They completed the Family Strain Questionnaire and the FDLQI and they marked on a silhouette of the human body the skin lesion distribution. Results Data on 62 family caregivers were collected. The overall mean FDLQI score was 9.8. The most frequently reported problems were the time spent on looking after the patient, emotional distress, physical well‐being, and increased household expenditure. FDLQI scores were higher in family caregivers of patients between 10 and 20 years. The Italian FDLQI showed high internal consistency, construct and convergent validity. Factor analysis revealed the presence of one factor structure underlying the items of the FDLQI, which explained 51.5% of the total variance, very similar to the original questionnaire (55.8%). Conclusion The Italian version of the FDLQI seems to be a useful tool to evaluate the impact of EB on family caregivers. Further studies are necessary to test this instrument in other dermatological conditions.     

Do socioeconomic factors impact atopic dermatitis outcome? A single-center study

Background

Race and socioeconomic status are thought to influence the severity of atopic dermatitis (AD), but findings differ between countries and measures used. The role of social determinants of health versus biologic factors in causing these differences is poorly understood.

Objective

We hypothesized that spatially-derived factors correlate with AD severity and patient-reported outcome (PRO) in a pediatric cohort from Chicago, USA.

Methods

Children with AD and caregivers were enrolled from February 2018 to April 2019 in this single-site cross-sectional study. Severity was self- and physician-assessed using validated measures. Patient addresses were geocoded and linked to census tract IDs. Deprivation index (DI) was calculated using variables of the 2018 American Community Survey.

Results

Among 216 children aged 5–17 years old, 111 (51.4%) lived in urban, 104 (48.1%) suburban, and one (0.5%) in rural areas. Race was self-classified as White in 31.0%, Black 24.5%, other or mixed 25.0%, and Asian 19.4%; 24.5% were Hispanic. Median DI was 0.32 (range 0.03–0.72), with higher scores indicating more deprivation. DI correlated with insurance type, family income, ethnicity, race, and parental education, and weakly with selected PRO T-scores. However, no correlations between any AD severity score and DI, race, ethnicity, income, education, or insurance type were found.

Conclusion

The impact of socioeconomic factors on AD severity in our study population was less pronounced than expected. This could be because of regional differences, including access to high-quality care. The role of access as a deciding factor in the impact of socioeconomic status on AD outcome deserves further investigation.     

A comparative study of the impairment of quality of life in Czech children with atopic dermatitis of different age groups and their families

Background Atopic dermatitis (AD) still remains one of the most common childhood inflammatory skin diseases. As a chronic disease, it can have a physical and psychological effect on social functioning of the affected child as well as their family. The objective of this study was to evaluate the quality of life of children with AD of different age groups and their families. Methods A total of 203 children with a diagnosis of AD from newborn to 18 years of age and 202 of their parents took part in our study (as one parent did not return the questionnaire). All participants, according to their age, completed the following questionnaires: Infants’ Dermatitis Quality of Life Index (IDQOL); Children’s Dermatology Life Quality Index (CDLQI) – text and cartoon version; and Dermatitis Family Impact questionnaire (DFI). Results The mean total IDQOL score in our study was 8.18 (SD = 5.84, n = 120). The mean total CDLQI scores in the groups of children from 7 to 13 and from 14 to 18 years were 8.58 (SD = 4.98, n = 48) and 9.89 (SD = 5.26, n = 35). There was also a proven influence of the child’s AD on the quality of life of his parents with the mean score: 7.98 (SD = 6.41, n = 202). Conclusions The study demonstrated and confirmed that AD significantly impairs the children’s quality of life in all age groups and also quality of life of their families. Such data give us patient‐oriented information that is of great importance for understanding the situation of individuals with AD and its influence on members of their family.     

May the Gender of a Parent Influence Assessment of Health‐Related Quality of Life,Family Impact and Severity of Atopic Dermatitis in Children?

Abstract:   Despite it is well known that atopic dermatitis has severe negative impact on child's and family life there is little information concerning gender influence on health-related quality of life assessment. We did not find any statistically significant gender differences in assessment of the Infant's Dermatitis Quality of Life Index and the Dermatitis Family Impact and its separate items. Our results showed that choice of parent who should fill in the Infant's Dermatitis Quality of Life Index and the Dermatitis Family Impact cannot significantly influence the results of clinical studies, but inside couples spouses could have alternative view, which is not associated with gender.     

Factors contributing to poor treatment outcomes in childhood atopic dermatitis

Atopic dermatitis (AD) is a chronic relapsing inflammatory disease of the skin and is the most common paediatric dermatological condition. While no cure is available, it can be treated effectively if adherence to a therapeutic plan is maintained. Poor adherence to treatment is common in AD and can lead to treatment failure, which has significant impacts on the patient, family and society. A comprehensive literature search was conducted to identify factors that contribute to poor treatment adherence in childhood AD and to identify possible strategies to remedy these. Identified factors leading to poor treatment adherence include: complexity of treatment regimen, lack of knowledge, impaired quality of life, dissatisfaction with treatment strategies, infrequent follow up, corticosteroid phobia and the use of complementary and alternative medicine. Effective strategies to increase treatment adherence include: caregiver education and utilisation of education adjuncts, optimisation of the patient/caregiver–clinician relationship, early and frequent follow up and improvement of patient and caregiver quality of life.     

Mental health comorbidity in youth with atopic dermatitis: A narrative review of possible mechanisms

The presence of atopic dermatitis (AD) in youth has been linked to a variety of mental health concerns including disruptive behavior, symptoms of anxiety and depression, and diagnoses of attention deficit/hyperactivity disorder and autism spectrum disorder. However, the factors accounting for these relationships are not well understood. The current review summarizes possible mechanisms identified in previous research and highlights areas for future investigation. Among the primary mechanisms studied to date, child sleep is the only factor that has been characterized in relative detail, with findings generally supporting the mediating role of sleep problems in the relationship between AD and psychological symptoms. There is substantial evidence suggesting a negative impact of child AD on parent mental health and the impact of parent mental health on child psychological functioning, although the latter has not been assessed specifically in populations of children with AD. There is also preliminary support for other mechanisms, including pruritus and pain, atopic comorbidities, social functioning, and systemic antihistamine use, in the development of mental health concerns in pediatric AD. Furthermore, research suggests the presence of bidirectional relationships between AD and psychological functioning via inflammatory responses to stress and impaired treatment adherence. Overall, significant additional research is needed to better characterize the nature and magnitude of the relationships among these multiple mechanisms and various psychosocial outcomes. Nevertheless, the findings to date support routine screening of psychological health in patients with AD as well as screening for potential risk factors, which may also serve as targets of therapeutic intervention.     

Escuela de dermatitis atópica: importancia de la formación de cuidadores

IntroductionThe aim of this study was to determine the perception of knowledge about atopic dermatitis (AD) in caregivers of children with this disease, and the impact of therapeutic patient education (TPE) on improving this knowledge.MethodologyA non-validated questionnaire was used on parents of children suffering from AD that attended to Atopic School (AS) of Pontevedra. It consisted of 9 questions about: repercussion of AD in different life spheres, time taken up with topical treatments, and knowledge about AD before and after TPE.ResultsA total of 61 questionnaires were collected from 5 sessions in the AS. The large majority (83.6%) of the respondents perceived that AD had a moderate or severe influence on their children's quality of life. Just 6.6% of respondents mentioned that they had a lot of information before attending the AS, and in all cases the respondents thought the information given in the AS increased their knowledge.ConclusionOur data support that TPE increases the knowledge about AD. Since AD has a negative impact on the quality of life of children, TPE sessions are of utmost importance.     

Stress and Family Satisfaction in Parents of Children with Facial Port-Wine Stains

A cross-sectional survey was employed to assess parenting stress, family satisfaction, and parental concerns and to determine predictors of stress in parents of children with port-wine stains (PWSs). The participants were 46 parents of 24 children receiving treatment with pulsed dye laser photocoagulation for facial PWS at an outpatient dermatology clinic based at a university medical center. Outcome measures used were self-report instruments assessing psychosocial adjustment (Parenting Stress Index, Family Satisfaction Scale, and Parental Concerns Questionnaire). As a group, parents scored in the average range on the stress and family satisfaction measures when compared with a normative sample; five parents (11%) scored in the clinical range for stress. Forty-nine percent of the variance in parenting stress was accounted for by four variables: the child's age (beta = 0.34; p = 0.031), the parents' degree of family satisfaction (beta = -0.27; p = 0.077), the level of parental concern regarding the child's facial PWS (beta = 0.45; p = 0.005), and the parents' satisfaction with staff communication (beta = -0. 51; p = 0.002). The data suggest that while, as a group, parents of children with a facial PWS report to be in the average range for psychological stress, some do not fare as well as others. Factors associated with lower stress include younger children, more family cohesion and adaptation, fewer parental concerns, and greater satisfaction with parent-staff communication. The potential for the development of medical complications and psychological problems over time suggests the need for treatment of the PWS at an early age. Health care providers should be prepared to screen for clinical levels of distress and to refer parents for psychological intervention when needed.     

The disease burden of pediatric patients with atopic dermatitis in Japan

Background

Atopic dermatitis (AD) is a chronic skin condition that is associated with significant patient burden and decreased health-related quality of life (HRQoL). We report results of the real-world Epidemiology of Children with Atopic Dermatitis Reporting on their Experience study in Japanese pediatric patients, focusing on the impact of AD severity on disease burden.

Methods

Children and adolescents aged 6 months to 17 years (or their caregivers/parents) completed an online survey between September 26, 2018, and March 5, 2019. Patients with diagnosed AD (i.e., met International Study of Asthma and Allergies in Childhood criteria and had a self-reported AD diagnosis) were evaluated for disease severity using the Patient-Oriented Eczema Measure (POEM). Impact of AD severity on AD symptoms (itching, pain, and sleep disturbance), disease flares, atopic comorbidities, healthcare resource utilization, school days missed, and HRQoL were assessed.

Results

Of 5702 Japanese pediatric patients, 547 had diagnosed AD and were included in this analysis. Based on POEM scores, AD severity was clear/mild in 346 patients (63.3%), moderate in 177 (32.5%), and severe in 24 (4.4%). Across all age groups (i.e., less than 6, 6–11, and 12–17 years), increased AD severity was associated with increased AD symptom severity, number of flares, atopic comorbidities, healthcare resource utilization, and school absences, as well as worsened HRQoL.

Conclusions

This population-based study of Japanese children and adolescents showed that greater AD severity had a high impact on disease burden.     

Quality of Life of Parents Living with a Child Suffering from Atopic Dermatitis Before and After a 3‐Month Treatment with an Emollient

Abstract: Atopic dermatitis (AD) can be extremely disabling and may cause psychological problems for affected children and their families. Moisturizers and emollients are important in the baseline daily skin care of patients with AD. To assess the effect of a 3‐month, twice‐daily treatment with an emollient on the quality of life (QoL) of parents with a child with mild to moderate AD (SCORing Atopic Dermatitis [SCORAD] ≤30, a multicenter open trial was performed by eight dermatologists on 191 volunteers. Evaluation by the dermatologist of the child’s clinical condition (SCORAD) and of the efficacy and overall safety of the treatment was associated with a QoL questionnaire completed by one parent of the atopic child. A self‐assessment of the global QoL and of the efficacy and overall safety was also performed. During the study, mean SCORAD dropped from 28 to 12 (p < 0.001), with good improvement in skin dryness and pruritus criteria. At the same time, the self‐assessment of the global parent QoL scores dropped from 4.4 to 2.1 (p < 0.001) with 60%, 48% and 79% favorable parent opinions regarding wellbeing or improvement of the health condition, quality of sleep, and efficacy of the emollient, respectively. This trial revealed the efficacy of the product in improving parent QoL (85% of parents noted improvement in QoL), and its global safety was considered to be very good or good, with 80% favorable opinions in parents’ declarative judgements and dermatologists’ assessments. The emollient evaluated improves the course of AD and can improve the QoL of patients and their families.     

Predictors of atopic dermatitis severity over time

BACKGROUND: Atopic dermatitis (AD) is a chronic relapsing disease that has increased in prevalence during the last 4 decades. However, little is known about factors that affect disease severity. METHODS: We carried out a longitudinal observational study that included children aged 5 to 10 years recruited from general practices in the United Kingdom. General practitioners identified potential patients and the United Kingdom diagnostic criteria for AD were used to verify the diagnosis in children. The scoring AD index was used to assess disease severity. In addition, information was obtained from parents at the first interview as to age of onset, social class, ethnic group, child's atopy, family history of atopy, and other potential risk factors using a 5-page piloted questionnaire. The aim was to document risk factors for AD severity over time by sequential repeated interview and clinical examination during a 2-year period. The scoring AD index was skewed to the right so nonparametric tests were used for statistical significance. RESULTS: In all, 137 children (65 boys [47%] and 72 girls) with AD were recruited and seen up to 4 times; 40 in March 1998, 104 in October 1998, 116 in March 1999, and 120 at the final visit in October 1999, giving our study an 88% follow-up rate. The severity scores were ranked into 3 categories (80% mild, 18% moderate, and 2% severe) according to suggested guidelines. From this population we were able to show that those with eczema that commenced during the first year of life, which was accompanied by asthma, hay fever, or both, and associated with living in an urban area, had more severe disease independent of other potential risk factors. CONCLUSION: This study has systematically studied AD severity in a community-based design. Researchers and clinicians should be aware of those factors reported in our study as patients exposed to these factors may have a different disease outcome. Further studies on disease severity are needed.     

Community perceptions and experiences on the events leading to facility maternal death; a verbal autopsy qualitative study

BackgroundTanzania Maternal Death Surveillance and Response (MDSR) system introduced in 2015 emphasizes review of facility maternal deaths with little community involvement. Involving the community in deaths enquiry can help to make better strategies to prevent future deaths. We aimed to explore family members (caregivers) perceptions and experiences on the events leading to facility maternal deaths to inform future community involvement in MDSR.MethodsNarrative interviews were conducted with 20 caregivers who cared for women who died in childbirth to investigate into delays and health care seeking experience. The unstructured questions on perceptions and experiences of events leading to death were administered together with standard verbal autopsy questionnaire. Two regions, Lindi and Mtwara of Southern Tanzania were selected for the study in 2018. Narrative thematic analysis was used for data analysis.ResultsThree main themes evolved: ‘Prepared for birth but not ready for complications’, ‘Disconnect between caregivers and providers’ and ‘The bitter impact of maternal deaths. Caregivers made efforts to prepare for birth but their preparation were severely inadequate when complications that necessitated referral occurred. Decision to seek care was made jointly between the pregnant woman, husband and other family members. Caregivers tried with little success in communicating with heathcare providers regarding their admitted patients. They also experienced emotions of grief such as denial, anger, depression, bargaining and acceptance once maternal deaths occurred. Caregivers (mostly old women) were left with the burden of caring for the newborns and other children left by the deceased mother.ConclusionCaregivers‘ perceptions and experiences of maternal deaths events provide valuable information for community interventions on birth preparedness, decision making, communication and providers‘ accountability. Maternal deaths bring far reaching mental, social and economic consequences to the family and society.