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.

Is Intranet technology the low cost, quick fix solution for Scotland's clinical information technology chaos? Results of a pilot study.

For health care professional staff immediate access to recent clinical documents is seen as the first priority for developments in Information Technology. Large amounts of clinical data are held on computer systems to which staff have little or no access. A pilot study has been undertaken to evaluate the use of Intranet technology, electronically extracting large volumes of data from various feeder systems in real time and allowing access via standard Internet browsers. Over 700,000 reports have been successfully transferred from three differing sources with more than 2000 new records added per week. Intranet technology would seem to be a low cost solution, capable of rapid implementation, that could overcome the most important bottleneck in clinical computing.

Predictors of post-traumatic stress symptoms in Oklahoma City: exposure, social support, peri-traumatic responses.

Eighty-five adults seeking mental health assistance six months after the Oklahoma City bombing were assessed to determine which of three groups of variables (exposure, peri-traumatic responses, and social support) predicted development of post-traumatic stress disorder (PTSD) symptoms. Variables most highly associated with subsequent PTSD symptoms included having been injured (among exposure variables), feeling nervous or afraid (peri-traumatic responses), and responding that counseling helped (support variables). Combining primary predictors in the three areas, PTSD symptoms were more likely to occur in those reporting counseling to help and those feeling nervous or afraid at the time of the bombing. Implications of these findings are discussed for behavioral health administrators and clinicians planning service delivery to groups of victims seeking mental health intervention after terrorist attacks and other disasters.

Clinical needs assessment of middle and high school students following the 1995 Oklahoma City bombing.

OBJECTIVE: This clinical assessment was designed to identify middle and high school students in need of formal evaluation for posttraumatic response symptoms following the 1995 bombing of the Alfred P. Murrah Federal Building in Oklahoma City. METHOD: A clinical needs assessment instrument was developed and administered to grade 6 through 12 students 7 weeks after the bombing (N = 3,218). RESULTS: More than 40% of the students reported knowing someone injured, and more than one-third reported knowing someone killed in the blast. Posttraumatic stress symptoms at 7 weeks significantly correlated with gender, exposure through knowing someone injured or killed, and bomb-related television viewing. CONCLUSIONS: This study documents the intensity of community exposure to the bombing and the lingering symptoms of stress. The assessment was used in planning for clinical service delivery, training professional responders, and supporting funding requests.

Consultant supervision of surgical trainees: an objective assessment of how much actually occurs.

Consultant-supervised operative experience must be at the core of any training programme. The level of consultant supervision of United Kingdom trainees is largely unknown. In this study, the unique Lothian Surgical Audit database was used to assess consultant supervised training.

Oklahoma City: disaster challenges mental health and medical administrators.

Mental health and medical administrators responded to the Oklahoma City bombing with cooperative and overlapping efforts to meet community needs in the wake of terrorism. The major agencies assisted in the immediate rescue response, organized crisis hotlines, prepared mental health professionals to counsel bereaved families and victims, organized debriefing of rescuers, assessed mental health needs of local school children, planned for longer term treatment, and coordinated research efforts to learn from the disaster. Implications to mental health administrators responding to significant acts of terrorism are discussed.

Report on consensus conference on colorectal cancer: Royal College of Surgeons of Edinburgh 1993.

Colorectal cancer is the second commonest cause of death from cancer in Scotland. Recent developments in molecular biology, pre-symptomatic diagnosis, surgery and adjuvant treatment suggest that a substantial reduction in mortality is achievable. Some fear that major changes to the organisation of the NHS could undermine future attempts to coordinate major cancer screening studies or multicentre adjuvant trials. In contrast, others argue that a sharp focus on cost and benefits could encourage the development of clear guidelines based on a consensus of good practice. Thus, the time seems right for a consensus conference and this article summarises the outcome of such a recent conference held in Scotland. A group of 80 surgeons, radiation oncologists and medical oncologists were invited as a representative cross-section of clinicians with an interest in colorectal cancer. Seventy per cent of those attending were surgeons. A series of expert presentations were used to lead discussion in four sessions devoted respectively to epidemiology and screening, influence of surgical factors and outcome, the role of adjuvant therapy and planning for the future. Full discussion from delegates was encouraged and computer-collated, key-pad responses allowed documentation of the opinions of the audience in respect of pre-defined questions. For statistical purposes we have assumed that a consensus had been reached when there was a statistically significant difference (Chi-square) between the observed response from clinicians and the null hypothesis, i.e. a 50/50 split.