Psychometric validation of a multi-dimensional capability instrument for outcome measurement in mental health research (OxCAP-MH)

Background Patient reported outcome measures (PROMs) are widely used in mental healthcare research for quality of life assessment but most fail to capture the breadth of health and non-health domains that can be impacted. We report the psychometric validation of a novel, multi-dimensional instrument based on Amartya Sen’s capability approach intended for use as an outcome measure in mental health research. Methods The Oxford Capabilities Questionnaire for Mental Health (OxCAP-MH) is a 16-item self-complete capability measure that covers multiple domains of functioning and welfare. Data for validation of the instrument were collected through a national randomised controlled trial of community treatment orders for patients with psychosis. Complete OxCAP-MH data were available for 172 participants. Internal consistency was established with Cronbach’s alpha; an interclass correlation coefficient was used to assess test-retest reliability in a sub-sample (N = 50) tested one week apart. Construct validity was established by comparing OxCAP-MH total scores with established instruments of illness severity and functioning: EuroQol (EQ-5D), Brief Psychiatric Rating Scale (BPRS), Global Assessment of Functioning (GAF) and Objective Social Outcomes Index (SIX). Sensitivity was established by calculating standard error of measurement using distributional methods. Results The OxCAP-MH showed good internal consistency (Cronbach’s alpha 0.79) and test-retest reliability (ICC = 0.86). Convergent validity was evidenced by strong correlations with the EQ-5D (VAS 0.52, p < .001) (Utility 0.45, p < .001), and divergent validity through more modest associations with the BPRS (−0.41, p < .001), GAF (0.24, p < .001) and SIX (0.12, p = ns). A change of 9.2 points on a 0–100 scale was found to be meaningful on statistical grounds. Conclusions The OxCAP-MH has demonstrable reliability and construct validity and represents a promising multi-dimensional alternative to existing patient-reported outcome measures for quality of life used in mental health research

Community treatment orders for patients with psychosis (OCTET): a randomised controlled trial

The trial is funded by a Programme Grant for Applied Research from the National Institute of Health Research (RP-PG-0606–1006

Carer involvement in compulsory out-patient psychiatric care in England

Background: There is an expectation in current heath care policy that family carers are involved in service delivery. This is also the case with compulsory outpatient mental health care, Community Treatment Orders (CTOs) that were introduced in England in 2008. No study has systematically investigated family involvement through the CTO process. Method: We conducted qualitative interviews with 24 family carers to ascertain their views and experiences of involvement in CTOs. The transcripts were subjected to thematic analysis that incorporated both deductive and inductive elements. Results: We found significant variation in both the type and extent of family carer involvement throughout the CTO process (initiation, recall to hospital, renewal, tribunal hearings, discharge). Some were satisfied with their level of involvement while others felt (at least partly) excluded or that they wanted to be more involved. Some wanted less involvement than what they had. From the interviews we identified key factors shaping carers' involvement. These included: perceptions of patient preference; concern over the relationship to the patient; carers’ knowledge of the CTO and of the potential for carer involvement; access to and relationships with health professionals; issues of patient confidentiality; opportunities for private discussions, and; health professionals limiting involvement. These factors show that health professionals have many opportunities to facilitate, or hinder, carer involvement. The various roles attributed to carers, such ‘proxy’ for patient decision, ‘gatekeeper’ to services, ‘mother’ or ‘expert carer’, however, conflict with one another and make the overall role unclear. Conclusions: There is a need for clarification of the expectations of carers in individual care situations, for carers to be equipped with the information they need to in order to be involved, and for services to find flexible and innovative ways of ensuring continuous, open communication. The introduction of CTOs in England has not been successful in its ambition for carer involvement

A prospective, quantitative study of mental health act assessments in England following the 2007 amendments to the 1983 act: did the changes fulfill their promise?

BACKGROUND: In 2008, the Mental Health Act (MHA) 2007 amendments to the MHA 1983 were implemented in England and Wales. The amendments were intended to remove perceived obstacles to the detention of high risk patients with personality disorders (PDs), sexual deviance and learning disabilities (LDs). The AMEND study aimed to test the hypothesis that the implementation of these changes would lead to an increase in numbers or proportions of patients with these conditions who would be assessed and detained under the MHA 2007. METHOD: A prospective, quantitative study of MHA assessments undertaken between July-October 2008-11 at three English sites. Data were collected from local forms used for MHA assessment documentation and patient electronic databases. RESULTS: The total number of assessments in each four month period of data collection varied: 1034 in 2008, 1042 in 2009, 1242 in 2010 and 1010 in 2011 (n = 4415). Of the assessments 65.6% resulted in detention in 2008, 71.3% in 2009, 64.7% in 2010 and 63.5% in 2011. There was no significant change in the odds ratio of detention when comparing the 2008 assessments against the combined 2009, 2010 and 2011 data (OR = 1.025, Fisher's exact Χ 2 p = 0.735). Only patients with LD and 'any other disorder or disability of the mind' were significantly more likely to be assessed under the MHA post implementation (Χ2 = 5.485, P = 0.018; Χ2 = 24.962, P > 0.001 respectively). There was no significant change post implementation in terms of the diagnostic category of detained patients. CONCLUSIONS: In the first three years post implementation, the 2007 Act did not facilitate the compulsory care of patients with PDs, sexual deviance and LDs

Long term outcomes and causal modelling of compulsory inpatient and outpatient mental health care using Norwegian registry data: protocol for a controversies in psychiatry research project

Objectives: Compulsory mental health care includes compulsory hospitalisation and outpatient commitment with medication treatment without consent. Uncertain evidence of the effects of compulsory care contributes to large geographical variations and a controversy on its use. Some argue that compulsion can rarely be justified and should be reduced to an absolute minimum, while others claim compulsion can more frequently be justified. The limited evidence base has contributed to variations in care that raise issues about the quality/appropriateness of care as well as ethical concerns. To address the question whether compulsory mental health care results in superior, worse or equivalent outcomes for patients, this project will utilise registry‐ based longitudinal data to examine the effect of compulsory inpatient and outpatient care on multiple outcomes, including suicide and overall mortality; emergency care/injuries; crime and victimisation; and participation in the labour force and welfare dependency. Methods: By using the natural variation in health providers' preference for compulsory care as a source of quasi‐randomisation we will estimate causal effects of compulsory care on short‐ and long‐term trajectories. Conclusions: This project will provide valuable insights for service providers and policy makers in facilitating high quality clinical care pathways for a high risk population group

Dementia and patient safety in the community: a qualitative study of family carers’ protective practices and implications for services

Background Dementia is a cause of disability and dependency associated with high demands for health services and expected to have a significant impact on resources. Care policies worldwide increasingly rely on family caregivers to contribute to service delivery for older people, and the general direction of health care policy internationally is to provide care in the community, meaning most people will receive services there. Patient safety in primary care is therefore important for future care, but not yet investigated sufficiently when services are carried out in patients’ homes. In particular, we know little about how family carers experience patient safety of older people with dementia in the community. Methods This was an explorative study, with qualitative in-depth interviews of 23 family carers of older people with suspected or diagnosed dementia. Family carers participated after receiving information primarily through health professionals working in dementia care. A semi-structured topic guide was used in a flexible way to capture participants’ experiences. A four-step inductive analysis of the transcripts was informed by hermeneutic-phenomenological analysis. Results The ways our participants sought to address risk and safety issues can be understood to constitute protective practices that aimed to prevent or reduce the risk of harm and/or alleviate damage from harm that occurs. The protective practices relate to four areas: physical harm, economic harm, emotional harm, and relational harm. The protective practices are interlinked, and family carers sometimes prioritize one over another, and as they form part of family practice, they are not always visible to service providers. As a result, the practices may complicate interactions with health professionals and even inadvertently conceal symptoms or care needs.Conclusions When family caregivers prevent harm and meet needs, some needs may be concealed or invisible to health professionals. To recognize all needs and provide effective, safe and person-centered care, health professionals need to recognize these preventive practices and seek to build a solid partnership with family carers

Family carers’ involvement strategies in response to sub-optimal health services to older adults living with dementia – a qualitative study

Background: While dementia policy strategies emphasize the importance of partnerships between families and formal carers to provide tailored care and effectively allocate community resources, family carers often feel left out or excluded. Poor communication has been identified as one reason for the lack of good partnerships. Few studies have investigated how family carers seek to involve themselves when they experience sub-optimal services, and how their strategies may depend on different considerations and personal abilities. Methods: Qualitative in-depth interviews were conducted with 23 family carers to explore their experiences with, perspectives on, contributions to, and interactions with healthcare services provided to older adults living with dementia. To capture nuances and variations, a semi-structured interview guide was used. Interviews were audio-recorded and transcribed verbatim. A four-step analysis of the transcripts was conducted, informed by hermeneutic and phenomenological methodology. Results: Two main involvement strategies were identified: 1) being “the hub in the wheel” and 2) getting the wheel rolling. The first strategy was used to support and complement health services, while the second was used to add momentum and leverage to arguments or processes. The two main strategies were used differently among participants, in part due to differences in personal resources and the ability to utilize these, but also in light of family carers’ weighing conflicting concerns and perceived costs and benefits. Conclusions: Awareness and acknowledgment of family carers’ strategies, personal resources, and considerations may help policymakers and healthcare personnel when they build or maintain good partnerships together with family carers. A better understanding of family carers’ own perspectives on carer involvement is a necessary precursor to developing good care partnerships

Is health literacy of family carers associated with carer burden, quality of life, and time spent on informal care for older persons living with dementia?

Introduction: Family carers are cornerstones in the care of older people living with dementia. Family carers report extensive carer burden, reduced health-related quality of life (HRQoL), and extensive time spent on informal care (Time). Health literacy (HL) is a concept associated with people’s ability to access health services, and navigate the healthcare system. This study’s aim was to investigate HL among family carers, and investigate the associations between HL and carer burden, HRQoL, and Time spent on informal care. Method: We designed a self-administered survey comprising validated instruments, including the Health Literacy Scale (HLS-N-Q12) to measure HL, Relative Stress Scale (RSS) to measure carer burden, the EQ-5D-5L instrument to measure HRQoL, and some modified questions from the Resource Utilization in Dementia (RUD) questionnaire to measure time spent on informal care (Time). Descriptive analysis in addition to bivariate and multiple linear regressions were undertaken. In multiple linear regression analysis, we used HL as the independent variable to predict the outcomes (carer burden, HRQoL, Time). Analyses were adjusted for the effects of explanatory independent variables: age, gender, education levels, urban residency, having worked as health personnel, caring for someone with severe/mild dementia, and being born abroad. Findings: In a non-probability sample of 188 family carers from across Norway, most of them female and over the age of 60, we found high levels of HL. In the bivariate analysis, carer burden and HRQoL (EQvalue) showed significant associations with HL. In the multiple regression analyses, HL was statistically significantly associated with carer burden (B = -0.18 CI:-0.33,-0.02 p = 0.02), HRQoL (EQvalue: B = 0.003 with 95% CI: 0.001, 0.006 p = 0.04), and Time (B = -0.03 with 95% CI: -0.06, 0.000, p = 0.046), after adjusting for the effect of independent variables. Conclusion: This is one of the first studies to investigate the associations between HL and different outcomes for family carers of older people living with dementia. Additional research into the associations identified here is needed to further develop our understanding of how to support family carers in their roles. Targeted support that increases family carers’ HL may have potential to enhance their ability to provide sustainable care over time

Is health literacy of family carers associated with carer burden, quality of life, and time spent on informal care for older persons living with dementia?

Introduction: Family carers are cornerstones in the care of older people living with dementia. Family carers report extensive carer burden, reduced health-related quality of life (HRQoL), and extensive time spent on informal care (Time). Health literacy (HL) is a concept associated with people’s ability to access health services, and navigate the healthcare system. This study’s aim was to investigate HL among family carers, and investigate the associations between HL and carer burden, HRQoL, and Time spent on informal care. Method: We designed a self-administered survey comprising validated instruments, including the Health Literacy Scale (HLS-N-Q12) to measure HL, Relative Stress Scale (RSS) to measure carer burden, the EQ-5D-5L instrument to measure HRQoL, and some modified questions from the Resource Utilization in Dementia (RUD) questionnaire to measure time spent on informal care (Time). Descriptive analysis in addition to bivariate and multiple linear regressions were undertaken. In multiple linear regression analysis, we used HL as the independent variable to predict the outcomes (carer burden, HRQoL, Time). Analyses were adjusted for the effects of explanatory independent variables: age, gender, education levels, urban residency, having worked as health personnel, caring for someone with severe/mild dementia, and being born abroad. Findings: In a non-probability sample of 188 family carers from across Norway, most of them female and over the age of 60, we found high levels of HL. In the bivariate analysis, carer burden and HRQoL (EQvalue) showed significant associations with HL. In the multiple regression analyses, HL was statistically significantly associated with carer burden (B = -0.18 CI:-0.33,-0.02 p = 0.02), HRQoL (EQvalue: B = 0.003 with 95% CI: 0.001, 0.006 p = 0.04), and Time (B = -0.03 with 95% CI: -0.06, 0.000, p = 0.046), after adjusting for the effect of independent variables. Conclusion: This is one of the first studies to investigate the associations between HL and different outcomes for family carers of older people living with dementia. Additional research into the associations identified here is needed to further develop our understanding of how to support family carers in their roles. Targeted support that increases family carers’ HL may have potential to enhance their ability to provide sustainable care over time