Examination of the psychometric properties of the FORensic oUtcome Measure (FORUM): a new outcome measure for forensic mental health services

INTRODUCTION: Forensic mental health services provide care to people in secure psychiatric hospitals and specialised community teams. Measuring outcomes is important to ensure such services perform optimally, however existing measures are not sufficiently comprehensive and are rarely patient reported. OBJECTIVES: To examine a novel instrument for measuring outcomes in forensic mental health services, the FORensic oUtsome Measure (FORUM), which consists of a complementary patient reported questionnaire (FORUM-P) and clinician reported questionnaire (FORUM-C). METHODS: Inpatients at a forensic psychiatric service based in a regional healthcare organization in the UK completed the FORUM-P, while members of their clinical teams completed the FORUM-C. Patients and clinicians also provided feedback on the questionnaires. RESULTS: Sixty-two patients participated with a mean age of 41.0 years (standard deviation 11.3). For internal consistency, Cronbach’s alpha for the FORUM-P was 0.87 (95% confidence interval (CI) 0.80-0.93) and for the FORUM-C was 0.93 (95% CI 0.91-0.96). For test-retest reliability the weighted kappa for the FORUM-P was 0.44 (95% CI 0.24-0.63) and for the FORUM-C was 0.78 (95% CI 0.73-0.85). For interrater reliability of the FORUM-C the Spearman correlation coefficient was 0.47 (95% CI 0.18-0.69). The FORUM-P received an average rating of 4.0 out of 5 for comprehensiveness, 4.6 for ease of use and 3.9 for relevance, while the FORUM-C received 4.1 for comprehensiveness, 4.5 for ease of use and 4.3 for relevance. CONCLUSIONS: Outcome measures in forensic mental health can be developed with good measures of reliability and validity, and can be introduced into services to monitor patient progress. DISCLOSURE: No significant relationships

Conceptual, methodological and policy issues in patient satisfaction research

This thesis is concerned with current debates as to the value of patient satisfaction research. The thesis reports two surveys by means of which the scope of patient satisfaction research is considered. Conceptual and methodological problems in this field of research and alternative theories of the social process whereby patients evaluate health care are reviewed. The two surveys are presented in terms of an introduction to the particular field of medicine involved, the methods of enquiry used, survey responses and discussion of results. The first survey is of patients attending outpatient neurological clinics presenting with headache. This study was conducted with intensive interviews, one before the neurological consultation and a second at home, one month later. The problems of making sense of patients' accounts in terms of 'expectations' and 'satisfaction' are outlined. Instead different perceptions of the value of clinic visits are related to four different concerns felt by patients in relation to their headaches, concerns for reassurance, explanation, prevention and symptomatic treatment. The second survey is of patient satisfaction with outpatient care in a department of genito-urinary medicine. This survey was conducted with two questionnaires: one completed whilst patients waited in the clinic for theirconsultation, and a second which was mailed to patients one month later. Survey results are used to examine an interactionist model of patient satisfaction developed by Ben Sira. The data is examined by various methods to suggest limitations of and modifications to the original model. Finally the thesis assesses the contribution of the two surveys to an understanding of how patients evaluate medical care. Alternative models of patient satisfaction are reexamined. It is argued that some perspectives have too restricted a view of patients' abilities. The implications of the two surveys are reviewed in terms of the different interests researchers may have in surveying patients' views.<p

Treatment outcomes in schizophrenia: qualitative study of the views of family carers

Abstract Background Schizophrenia is a complex, heterogeneous disorder, with highly variable treatment outcomes, and relatively little is known about what is important to patients. The aim of the study was to understand treatment outcomes informal carers perceive to be important to people with schizophrenia. Method Qualitative interview study with 34 individuals and 8 couples who care for a person with schizophrenia/schizoaffective disorder. Interviews were transcribed verbatim and analysed by a thematic framework based approach. Results Carers described well-recognised outcomes of importance, alongside more novel outcomes relating to: Safety (of the patient/others); insight (e.g. into non-reality of psychotic phenomena); respite from fear, distress or pain; socially acceptable behaviour; getting out of the house; attainment of life milestones; changes in personality and/or temperament; reduction of vulnerability to stress; and several aspects of physical health. Conclusions These findings have the potential to inform the development of patient- or carer- focused outcome measures that take into account the full range of domains that carers feel are important for patients. Keywords Schizophrenia Treatment Patient Carer Outcom

Forms of benefit sharing in global health research undertaken in resource poor settings: a qualitative study of stakeholders' views in Kenya

BACKGROUND: Increase in global health research undertaken in resource poor settings in the last decade though a positive development has raised ethical concerns relating to potential for exploitation. Some of the suggested strategies to address these concerns include calls for providing universal standards of care, reasonable availability of proven interventions and more recently, promoting the overall social value of research especially in clinical research. Promoting the social value of research has been closely associated with providing fair benefits to various stakeholders involved in research. The debate over what constitutes fair benefits; whether those that addresses micro level issues of justice or those focusing on the key determinants of health at the macro level has continued. This debate has however not benefited from empirical work on what stakeholders consider fair benefits. This study explores practical experiences of stakeholders involved in global health research in Kenya, over what benefits are fair within a developing world context. METHODS AND RESULTS: We conducted in-depth interviews with key informants drawn from within the broader health research system in Kenya including researchers from the mainstream health research institutions, networks and universities, teaching hospitals, policy makers, institutional review boards, civil society organisations and community representative groups.The range of benefits articulated by stakeholders addresses both micro and macro level concerns for justice by for instance, seeking to engage with interests of those facilitating research, and the broader systemic issues that make resource poor settings vulnerable to exploitation. We interpret these views to suggest a need for global health research to engage with current crises that face people in these settings as well as the broader systemic issues that produce them. CONCLUSION: Global health research should provide benefits that address both the micro and macro level issues of justice in order to forestall exploitation. Embracing the two is however challenging in terms of how the various competing interests/needs should be balanced ethically, especially in the absence of structures to guide the process. This challenge should point to the need for greater dialogue to facilitate value clarification among stakeholders

Ethics in practice: the state of the debate on promoting the social value of global health research in resource poor settings particularly Africa

<p>Abstract</p> <p>Background</p> <p>Promoting the social value of global health research undertaken in resource poor settings has become a key concern in global research ethics. The consideration for benefit sharing, which concerns the elucidation of what if anything, is owed to participants, their communities and host nations that take part in such research, and the obligations of researchers involved, is one of the main strategies used for promoting social value of research. In the last decade however, there has been intense debate within academic bioethics literature seeking to define the benefits, the beneficiaries, and the scope of obligations for providing these benefits. Although this debate may be indicative of willingness at the international level to engage with the responsibilities of researchers involved in global health research, it remains unclear which forms of benefits or beneficiaries should be considered. International and local research ethics guidelines are reviewed here to delineate the guidance they provide.</p> <p>Methods</p> <p>We reviewed documents selected from the international compilation of research ethics guidelines by the Office for Human Research Protections under the US Department of Health and Human Services.</p> <p>Results</p> <p>Access to interventions being researched, the provision of unavailable health care, capacity building for individuals and institutions, support to health care systems and access to medical and public health interventions proven effective, are the commonly recommended forms of benefits. The beneficiaries are volunteers, disease or illness affected communities and the population in general. Interestingly however, there is a divide between "global opinion" and the views of particular countries within resource poor settings as made explicit by differences in emphasis regarding the potential benefits and the beneficiaries.</p> <p>Conclusion</p> <p>Although in theory benefit sharing is widely accepted as one of the means for promoting the social value of international collaborative health research, there is less agreement amongst major guidelines on the specific responsibilities of researchers over what is ethical in promoting the social value of research. Lack of consensus might have practical implications for efforts aimed at enhancing the social value of global health research undertaken in resource poor settings. Further developments in global research ethics require more reflection, paying attention to the practical realities of implementing the ethical principles in real world context.</p

Developing approaches to the collection and use of evidence of patient experience below the level of national surveys

National approaches to collecting patient feedback provide trust level information which although can provide a benchmark for trusts often doesn’t provide information about specific services or patients experiences of pathways of care. This more granular level of data could be more informative for local service development and improvement. This research explored the feasibility and usefulness of such approaches. A conceptual model and standard questionnaire of patient experience was developed that might work across a range of services and pathways of care. Seven trusts were recruited as collaborating sites in which the model and survey instrument was tested. These were from different geographical locations and settings. The impact of the pilot and survey results on the improvement and development of services was evaluated. The service- line approach to capturing patient feedback was generally more feasible and considered of value for service improvement. The collection of patients’ experiences across pathways of care was more challenging in terms of the development of the survey and interpretation of results. However, many sites identified specific actionable areas for improvement. This study has shown that it is possible to develop and apply a standardised survey in a range of services and provides evidence that a consistent unified approach to monitoring patient experiences is feasible. However several methodological problems are acknowledged such as the availability of resources and capacity for improvements to services and care. Evidence is now particularly needed to establish how best to produce positive impact from patient feedback

Near-infrared/optical identification of five low-luminosity X-ray pulsators

We present the identification of the most likely near-infrared/optical counterparts of five low-luminosity X-ray pulsators (AX J1700.1-4157, AX 1740.1-2847, AX J1749.2-2725, AX J1820.5-1434 and AX J1832.3-0840) which have long pulse periods (> 150 s). The X-ray properties of these systems suggest that they are likely members of persistent high mass X-ray binaries or intermediate polars. Using our Chandra observations, we detected the most likely counterparts of three sources (excluding AX J1820.5-1434 and AX J1832.3-0840) in their ESO - NTT near-infrared observations, and a possible counterpart for AX J1820.5-1434 and AX J1832.3-0840 in the 2MASS and DSS observations respectively. We also performed the X-ray timing and spectral analysis for all the sources using our XMM-Newton observations, which further helped us to constrain the nature of these systems. Our multiwavelength observations suggest that AX J1749.2-2725 and AX J1820.5-1434 most likely harbor accreting neutron stars while AX J1700.1-4157, AX J1740.1-2847 and AX J1832.3-0840 could be intermediate polars.Comment: 11 pages, 5 figures, Submitted to MNRA