Patient-Reported Outcomes after Monitoring, Surgery, or Radiotherapy for Prostate Cancer.

BACKGROUND: Robust data on patient-reported outcome measures comparing treatments for clinically localized prostate cancer are lacking. We investigated the effects of active monitoring, radical prostatectomy, and radical radiotherapy with hormones on patient-reported outcomes. METHODS: We compared patient-reported outcomes among 1643 men in the Prostate Testing for Cancer and Treatment (ProtecT) trial who completed questionnaires before diagnosis, at 6 and 12 months after randomization, and annually thereafter. Patients completed validated measures that assessed urinary, bowel, and sexual function and specific effects on quality of life, anxiety and depression, and general health. Cancer-related quality of life was assessed at 5 years. Complete 6-year data were analyzed according to the intention-to-treat principle. RESULTS: The rate of questionnaire completion during follow-up was higher than 85% for most measures. Of the three treatments, prostatectomy had the greatest negative effect on sexual function and urinary continence, and although there was some recovery, these outcomes remained worse in the prostatectomy group than in the other groups throughout the trial. The negative effect of radiotherapy on sexual function was greatest at 6 months, but sexual function then recovered somewhat and was stable thereafter; radiotherapy had little effect on urinary continence. Sexual and urinary function declined gradually in the active-monitoring group. Bowel function was worse in the radiotherapy group at 6 months than in the other groups but then recovered somewhat, except for the increasing frequency of bloody stools; bowel function was unchanged in the other groups. Urinary voiding and nocturia were worse in the radiotherapy group at 6 months but then mostly recovered and were similar to the other groups after 12 months. Effects on quality of life mirrored the reported changes in function. No significant differences were observed among the groups in measures of anxiety, depression, or general health-related or cancer-related quality of life. CONCLUSIONS: In this analysis of patient-reported outcomes after treatment for localized prostate cancer, patterns of severity, recovery, and decline in urinary, bowel, and sexual function and associated quality of life differed among the three groups. (Funded by the U.K. National Institute for Health Research Health Technology Assessment Program; ProtecT Current Controlled Trials number, ISRCTN20141297 ; ClinicalTrials.gov number, NCT02044172 .).

Developmental inventories using illiterate parents as informants: Communicative Development Inventory (CDI) adaptation for two Kenyan languages.

Communicative Development Inventories (CDIs, parent-completed language development checklists) are a helpful tool to assess language in children who are unused to interaction with unfamiliar adults. Generally, CDIs are completed in written form, but in developing country settings parents may have insufficient literacy to complete them alone. We designed CDIs to assess language development in children aged 0;8 to 2;4 in two languages used in Coastal communities in Kenya. Measures of vocabulary, gestures, and grammatical constructions were developed using both interviews with parents from varying backgrounds, and vocabulary as well as grammatical constructions from recordings of children's spontaneous speech. The CDIs were then administered in interview format to over 300 families. Reliability and validity ranged from acceptable to excellent, supporting the use of CDIs when direct language testing is impractical, even when children have multiple caregivers and where respondents have low literacy levels.

Maternal perceptions of factors contributing to severe under-nutrition among children in a rural African setting.

INTRODUCTION: In developing countries, severe undernutrition in early childhood is associated with increased mortality and morbidity, and 10-40% of hospital admissions. The current study aimed to elicit maternal perceptions of factors that contribute to severe undernutrition among children in a rural Kenyan community in order to identify appropriate and acceptable targeted interventions. METHODS: The study consisted of 10 focus group discussions (FGDs) of between eight and ten mothers each, in a rural coastal community in Kenya. A grounded theory approach was used to analyse the FGD data. RESULTS: In all FGDs 'financial constraints' was the main reason given for severe undernutrition of children. The mothers reported the additional factors of inadequate food intake, ill health, inadequate care of children, heavy workload for mothers, inadequate control of family resources by women and a lack of resources for generating income for the family. The mothers also reported their local cultural belief that severe malnutrition was due to witchcraft and the violation of sexual taboos. CONCLUSIONS: The mothers in the study community recognised multiple aetiologies for severe undernutrition. A multidisciplinary approach is needed address the range of issues raised and so combat severe undernutrition. Suggested interventions include poverty alleviation, medical education and psychosocial strategies. The content and approach of any program must address the need for variability, determined by individual and local needs, concerns, attitudes and beliefs.

Cementing Partnerships: Applying a Network-Mapping Tool in Tajikistan.

Background: This article describes the integration of an innovative network-mapping tool within a monitoring, evaluation and learning system. We describe how it serves to strengthen vulnerable families to care for their children. We discuss the use of this tool as part of the process of measurement for change in the preparation for the sustainable scaling of programme implementation. Tajikistan has a legacy of Soviet-style institutional care of children. Traditionally, very young children separated from their families have been cared for in institutional baby homes. This research is part of a wider project to transform these baby homes into community-oriented Family and Child Support Centres. Methods: We mapped the networks of child support experienced by parents and service providers. We used interactive, semi-structured interviews, and the tool evolved through an iterative process. We generated data to describe the connexions between children, families, professionals and supporting organisations. The resulting information revealed strengths and weaknesses in support provided, attitudes and perceptions towards the quality of the support as well as identifying processes through which changes strengthening the system can be stimulated. Results: The data showed that the main support for children comes from within their immediate household, but, over time, more distal support gained value. Variation in the networks of support related to gender, specific subgroups of need and location. Gender was the most influential determinant of patterns of support. Mothers' knowledge of service provision, represented by a greater number and variety of contacts on their network-maps, was more diverse than fathers'. In contrast, fathers' more limited networks showed connexions to individuals and organisations with potentially more powerful decision-making roles. Participation in the discussions around the network-mapping contributed towards a change in the use of data and evidence in the implementation team. Conclusions: Network-mapping is a valuable and adaptable tool that feeds into monitoring and evaluation at multiple levels. The process reveals the nature and extent of relationships of support for childcare and protection. It exposes the changes in these networks over time. Both the information provided and the process of collection can enrich care plans, create links within the network and inform decision-making that improves efficacy of delivery as we move to scale.

Developmental monitoring using caregiver reports in a resource-limited setting: the case of Kilifi, Kenya.

AIM: The main aim of the current study was to evaluate the reliability, validity and acceptability of developmental monitoring using caregiver reports among mothers in a rural African setting. METHODS: A structured interview for parents of children aged 24 months and less was developed through both participant consultation and a review of literature. The reliability and validity of the schedule was evaluated through a 10-month monitoring programme of 95 children, aged 2-10 months. The acceptability of the process was evaluated by studying retention rates and by organizing focus group discussions with participating mothers. RESULTS: The structured interview 'Developmental Milestones Checklist' consisted of 66 items covering three broad domains of child functioning: motor, language and personal-social development. The interview yielded scores of developmental achievements that showed high internal consistency and excellent test-retest reliability. The results were sensitive to maturational changes and nutritional deficiencies. In addition, acceptable retention rates of approximately 80% were found. Participating mothers reported that they found the procedures both acceptable and beneficial. CONCLUSION: Developmental monitoring using caregiver report is a viable method to identify and monitor at-risk children in Sub-Saharan Africa.

Impact of Plasmodium falciparum malaria on performance and learning: review of the evidence.

Despite the growing recognition that Plasmodium falciparum malaria constitutes a major threat to child survival, the indirect consequences of disease and infection on general human development have been less well described. This review suggests that malaria in childhood is likely to have effects on general cognitive and behavioral development, which range from subtle to profound. Nevertheless, our understanding of the numbers of affected children, and the persistence of and recovery from impairment remains ill defined. Only through large long-term studies will we be able to establish the wider consequences of malaria on communities in areas of the world where malaria is endemic.

Cognitive sequelae of severe malaria with impaired consciousness.

Although cerebral malaria is the most common acute encephalopathy arising in children in Africa little is known of its effect upon the longer-term cognitive development of survivors. In Kenya, we compared the performance of 87 survivors of severe malaria with impaired consciousness to matched community controls on a wide range of tasks, not less than 42 months post illness episode. The presence of cognitive impairment was then related to both the pattern of symptoms at the time of the acute illness and the presence of gross neurological impairment on discharge. Significant group differences were found in areas of cognitive functioning suggestive of widespread impairment in the development of the ability to initiate, plan and carry out tasks (the executive functions). On tasks of more discrete cognitive skills (information processing) there were no significant group differences, although impaired performance was found more frequently in the severe malaria group. The odds ratio associated with the development of cognitive impairment following severe malaria with impaired consciousness was found to be 4.48 (95% CI 1.22, 16.47). A combination of 4 signs (coma, hypoglycaemia, seizures, and absence of hyperpyrexia) proved to have greater accuracy than the presence of gross neurological sequelae in predicting cognitive impairment (95% vs 93% specificity, 67% vs 58% sensitivity).

Monitoring psychomotor development in a resource-limited setting: an evaluation of the Kilifi Developmental Inventory.

BACKGROUND: Modifications made to the Kilifi Developmental Checklist and the psychometric characteristics of the new measure (The Kilifi Developmental Inventory) which assess the psychomotor functioning of children aged 6-35 months are described. METHODS: Two groups of community children (319 rural and 104 urban dwellers) and nine children with neurodevelopmental disorders were recruited for a cross-sectional study. RESULTS: In both a rural and urban reference population, the inventory showed excellent internal consistency, interobserver agreement, test-retest reliability and sensitivity to maturational changes. Children with neurodevelopmental impairment and those who were underweight had significantly lower scores than the community sample, attesting to the sensitivity of the measure. Mothers found the assessment procedures acceptable and informative. CONCLUSIONS: The Kilifi Developmental Inventory is a culturally appropriate measure that can be used to monitor and describe the development of at-risk children in resource-limited settings in Kenya.