Measurement of the major ignored burden of multiple myeloma, pernicious anaemia and of other haematological conditions on partners and family members: A cross-sectional study.

BACKGROUND: Having a haematological condition can adversely affect the quality of life (QoL) of family members/partners of patients. It is important to measure this often ignored burden in order to implement appropriate supportive interventions. OBJECTIVE: To measure current impact of haematological conditions on the QoL of family members/partners of patients, using the Family Reported Outcome Measure-16 (FROM-16). METHODS: A cross-sectional study, recruited online through patient support groups, involved UK family members/partners of people with haematological conditions completing the FROM-16. RESULTS: 183 family members/partners (mean age = 60.5 years, SD = 13.2; females = 62.8%) of patients (mean age = 64.1, SD = 12.8; females = 46.4%) with 12 haematological conditions completed the FROM-16. The FROM-16 mean total score was 14.0 (SD = 7.2), meaning 'a moderate effect on QoL'. The mean FROM-16 scores of family members of people with multiple myeloma (mean = 15.8, SD = 6.3, n = 99) and other haematological malignancies (mean = 13.9, SD = 7.8, n = 29) were higher than of people with pernicious anaemia (mean = 10.7, SD = 7.5, n = 47) and other non-malignant conditions (mean = 11, SD = 7.4, n = 56, p < .01). Over one third (36.1%, n = 183) of family members experienced a 'very large effect' (FROM-16 score>16) on their quality of life. CONCLUSIONS: Haematological conditions, in particular those of malignant type, impact the QoL of family members/partners of patients. Healthcare professionals can now, using FROM-16, identify those most affected and should consider how to provide appropriate holistic support within routine practice.

Mapping of Family Reported Outcome Measure (FROM-16) scores to EQ-5D: algorithm to calculate utility values.

OBJECTIVE: Although decision scientists and health economists encourage inclusion of family member/informal carer utility in health economic evaluation, there is a lack of suitable utility measures comparable to patient utility measures such those based on the EQ-5D. This study aims to predict EQ-5D-3L utility values from Family Reported Outcome Measure (FROM-16) scores, to allow the use of FROM-16 data in health economic evaluation when EQ-5D data is not available. METHODS: Data from 4228 family members/partners of patients recruited to an online cross-sectional study through 58 UK-based patient support groups, three research support platforms and Welsh social services departments were randomly divided five times into two groups, to derive and test a mapping model. Split-half cross-validation was employed, resulting in a total of ten multinomial logistic regression models. The Monte Carlo simulation procedure was used to generate predicted EQ-5D-3L responses, and utility scores were calculated and compared against observed values. Mean error and mean absolute error were calculated for all ten validation models. The final model algorithm was derived using the entire sample. RESULTS: The model was highly predictive, and its repeated fitting using multinomial logistic regression demonstrated a stable model. The mean differences between predicted and observed health utility estimates ranged from 0.005 to 0.029 across the ten modelling exercises, with an average overall difference of 0.015 (a 2.2% overestimate, not of clinical importance). CONCLUSIONS: The algorithm developed will enable researchers and decision scientists to calculate EQ-5D health utility estimates from FROM-16 scores, thus allowing the inclusion of the family impact of disease in health economic evaluation of medical interventions when EQ-5D data is not available.

Challenges experienced by service providers in the delivery of medico-legal services to survivors of sexual violence in Kenya.

While much discussion has been devoted to defining the standards of care required when offering services to survivors of sexual violence, much less attention has been given to procedures for evidence collection to allow the successful prosecution of perpetrators. In Kenya there are no comprehensive guidelines that outline the roles of the survivor, the community, health care workers, and the police with regard to the handling of forensic evidence, a deficit that contributes to delays in prosecuting, or even a failure to prosecute sex offenders. This study examines some of the obstacles in Kenya to the adequate handling of forensic evidence in sexual violence cases. It was based on in-depth interviews with respondents drawn from health facilities, police stations, civil society organizations and with the Government Chemist in three Kenyan provinces. The study's objective was to examine the existing policy requirements regarding the maintenance of an evidence chain by the health and criminal justice systems, and how effectively they are being implemented. The findings indicate that the quality of the evidence obtained by the health care workers was often deficient, depending on the time elapsed before the rape survivor reports to the health facility; the equipment available at the health facility; the age of the survivor; and the level of knowledge of the service provider regarding the types of evidence to be collected from survivors of sexual violence.

Using VCT statistics from Kenya in understanding the association between gender and HIV.

This paper demonstrates the importance of utilising official statistics from the voluntary counselling and testing centres (VCT) to determine the association between gender and HIV infection rates in Kenya.The study design adopted was a record based survey of data collected from VCT sites in Kenya between the second quarter of 2001 and the second quarter of 2004. Of those who were tested, significantly more females tested positive (P<0.0001) and had twice as high a chance of being infected by HIV (Odds ratio 2.27 with CI 2.23 to 2.31) than males.We conclude that VCT statistics may lead to better planning of services and gender sensitive interventions if utilised well.