Automatic indexing and retrieval of encounter-specific evidence for point-of-care support

Evidence-based medicine relies on repositories of empirical research evidence that can be used to support clinical decision making for improved patient care. However, retrieving evidence from such repositories at local sites presents many challenges. This paper describes a methodological framework for automatically indexing and retrieving empirical research evidence in the form of the systematic reviews and associated studies from The Cochrane Library, where retrieved documents are specific to a patient-physician encounter and thus can be used to support evidence-based decision making at the point of care. Such an encounter is defined by three pertinent groups of concepts - diagnosis, treatment, and patient, and the framework relies on these three groups to steer indexing and retrieval of reviews and associated studies. An evaluation of the indexing and retrieval components of the proposed framework was performed using documents relevant for the pediatric asthma domain. Precision and recall values for automatic indexing of systematic reviews and associated studies were 0.93 and 0.87, and 0.81 and 0.56, respectively. Moreover, precision and recall for the retrieval of relevant systematic reviews and associated studies were 0.89 and 0.81, and 0.92 and 0.89, respectively. With minor modifications, the proposed methodological framework can be customized for other evidence repositories. © 2010 Elsevier Inc.

Quality of life, stress and mental health in parents of children with parentally diagnosed food allergy compared to medically diagnosed and healthy controls

Background. Food allergy is related to poorer quality of life (QoL) and mental health of caregivers. Many parents diagnose food allergy in their child without seeking medical care and there is limited research on this group. This study investigated parental QoL and mental health in parents of children with parent-diagnosed food allergy (PA), medically diagnosed food allergy (MA), and a control group with no allergy (NA). Methods. One hundred and fifty parents from a general population completed validated measures of QoL, anxiety, depression, and stress. Results. Parents of children with food allergy (PA or MA) reported higher stress, anxiety, and depression than the control group (all ). Parents of children with MA reported poorer food allergy related QoL compared to parents of children with PA (); parents of children with PA reported poorer general QoL compared to parents of children with MA (). Conclusion. Parents of children with food allergy have significantly poorer mental health compared to healthy controls, irrespective of whether food allergy is medically diagnosed or not. It is important to encourage parents to have their child medically tested for food allergy and to recognise and refer for psychological support where needed.

Optimising primary care for people with dementia

This review considers key areas in primary care regarding the diagnosis of dementia. Issues surrounding assessment, policy and incentives are considered. In addition, the relevance of non-medication approaches for dementia in primary care, which aim to enhance or maintain quality of life by maximising psychological and social function in the context of existing disabilities, is deliberated. Finally, key issues about primary care medication management are considered, and relevant therapeutic strategies with recommendation for a collaborative approach that improve outcomes by linking primary and secondary healthcare services - including general practice and pharmacy - with social care needs are weighed up. A key aspect of such a collaborative approach is to support informal carers in optimising medication.

Investigating mental health risk assessment in primary care and the potential role of a structured decision support tool, GRiST

Aim: To explore current risk assessment processes in general practice and Improving Access to Psychological Therapies (IAPT) services, and to consider whether the Galatean Risk and Safety Tool (GRiST) can help support improved patient care. Background: Much has been written about risk assessment practice in secondary mental health care, but little is known about how it is undertaken at the beginning of patients' care pathways, within general practice and IAPT services. Methods: Interviews with eight general practice and eight IAPT clinicians from two primary care trusts in the West Midlands, UK, and eight service users from the same region. Interviews explored current practice and participants' views and experiences of mental health risk assessment. Two focus groups were also carried out, one with general practice and one with IAPT clinicians, to review interview findings and to elicit views about GRiST from a demonstration of its functionality. Data were analysed using thematic analysis. Findings Variable approaches to mental health risk assessment were observed. Clinicians were anxious that important risk information was being missed, and risk communication was undermined. Patients felt uninvolved in the process, and both clinicians and patients expressed anxiety about risk assessment skills. Clinicians were positive about the potential for GRiST to provide solutions to these problems. Conclusions: A more structured and systematic approach to risk assessment in general practice and IAPT services is needed, to ensure important risk information is captured and communicated across the care pathway. GRiST has the functionality to support this aspect of practice.

Assessing the motivation of MDs to use computer-based support at the point-of-care in the emergency department

A significant body of research investigates the acceptance of computer-based support (including devices and applications ranging from e-mail to specialized clinical systems, like PACS) among clinicians. Much of this research has focused on measuring the usability of systems using characteristics related to the clarity of interactions and ease of use. We propose that an important attribute of any clinical computer-based support tool is the intrinsic motivation of the end-user (i.e. a clinician) to use the system in practice. In this paper we present the results of a study that investigated factors motivating medical doctors (MDs) to use computer-based support. Our results demonstrate that MDs value computer-based support, find it useful and easy to use, however, uptake is hindered by perceived incompetence, and pressure and tension associated with using technology.

Exploring care relations in later life: disentangling notions of care and choice

The experience of later life varies widely and is often framed in terms of the active lifestyles of the Third Age and the frailty and abjection of the Fourth Age. This thesis sought to understand how the concepts of care and choice are enacted, experienced and interrelated in the context of both informal and formal care in later life and how older people themselves, their families and significant others understand and experience these concepts. The discourse of personalisation that dominates care services has led to an emphasis on individual choice, control and independence so that those in need of care are faced with what has been described as the ‘logic of choice’, a focus on individual responsibility rather than care. Adopting a Feminist Foucauldian theoretical approach and drawing on Tronto’s (1993) ethic of care, this thesis explores the experiences of older people and their informal carers through dialogical narrative analysis. The stories begin with the recognition by individuals that there is a need for care and how this need is met through negotiations with families and significant others. As needs increase the physical and logistical limits of informal care by individuals are reached, often leading to a need to ‘choose’ formal care. Rather than impacting solely on the care recipient, formal care is shown as being an experience that is shared with informal carers. Indeed, the participants depict how informal care continues alongside formal care and how the boundaries between them become blurred. I argue that a binary division between actively making choices and being a passive recipient are not appropriate to understandings of care. By disentangling the notions of care and choice this thesis explores the extent to which these concepts are relevant to the experience of older people in specific care situations.

Enjoying the third age! Discourse, identity and liminality in extra-care communities

Extra-care housing has been an important and growing element of housing and care for older people in the United Kingdom since the 1990s. Previous studies have examined specific features and programmes within extra-care locations, but few have studied how residents negotiate social life and identity. Those that have, have noted that while extra care brings many health-related and social benefits, extra-care communities can also be difficult affective terrain. Given that many residents are now ‘ageing in place’ in extra care, it is timely to revisit these questions of identity and affect. Here we draw on the qualitative element of a three-year, mixed-method study of 14 extra-care villages and schemes run by the ExtraCare Charitable Trust. We follow Alemàn in regarding residents' ambivalent accounts of life in ExtraCare as important windows on the way in which liminal residents negotiate the dialectics of dependence and independence. However, we suggest that the dialectic of interest here is that of the third and fourth age, as described by Gilleard and Higgs. We set that dialectic within a post-structuralist/Lacanian framework in order to examine the different modes of enjoyment that liminal residents procure in ExtraCare's third age public spaces and ideals, and suggest that their complaints can be read in three ways: as statements about altered material conditions; as inter-subjective bolstering of group identity; and as fantasmatic support for liminal identities. Finally, we examine the implications that this latter psycho-social reading of residents' complaints has for enhancing and supporting residents' wellbeing.

The effect of a breakfast program on nutritional status, quality of life, and health care use among frail homebound older adults

The population of older adults is rapidly increasing, creating a need for community services that assist vulnerable older adults in maintaining independence and quality of life. Recent evidence confirms the importance of food and nutrition in reaching this objective. The Elderly Nutrition Program (ENP) is part of a system of federally funded community based programs, authorized through the Older Americans Act. ENP services include the home-delivered meals program, which targets frail homebound older adults at nutritional risk. Traditionally, ENP services provide a noon meal 5 days/week. This study evaluated the impact of expanding the home-delivered meals service to include breakfast + lunch, on the nutritional status, quality of life and health care utilization of program participants. ^ This cross-sectional study compared 2 groups. The Breakfast group (n = 167) received a home-delivered breakfast + lunch, 5 days/week. The Comparison group (n = 214) received lunch 5 days/week. Participants, recruited from 5 ENP programs, formed a geographically, racially/ethnically diverse sample. Participants ranged in age from 60–100 years, they were functionally limited, at high nutritional risk, low income, and they lived alone and had difficulty shopping or preparing food. Participant data were collected through in-home interviews and program records. A 24-hour food recall and information on participant demographics, malnutrition risk, functional status, health care use, and applicable quality of life factors were obtained. Service and cost data were collected from program administrators. ^ Breakfast group participants had greater energy/nutrient intakes (p < .05), fewer health care contacts (p < .05), and greater quality of life measured as food security (p < .05) and fewer depressive symptoms (p < .05), than comparison group participants. These benefits were achieved for $1.30/person/day. ^ The study identified links from improvements in nutritional status to enhanced quality of life to diminished health care utilization and expenditures. A model of health, loneliness, food enjoyment, food insecurity, and depression as factors contributing to quality of life for this population, was proposed and tested (p < .01). ^ The breakfast service is an inexpensive addition to traditional home-delivered meals services and can improve the lives of frail homebound older adults. Agencies should be encouraged to expand meals programs to include a breakfast service. ^

An evaluation of depression, self-efficacy, satisfaction with life and perceived access to medical care across stages of HIV infection

This survey was designed to identify the incidence and scope of depression, satisfaction with life, self-efficacy and perceived access to medical care for those who are infected with the HIV virus. It also determined whether or not factors such as sexual orientation, ethnicity and socioeconomic status are intervening variables with respect to mental health issues. Subjects were recruited through a purposive sample from South Florida. A total of 871 surveys were used in the analysis. The overall response rate was nearly 90%. The incidence of depression was found to be higher than 75% across all stages of HIV infection. Furthermore, the incidence of depression increased as HIV disease progressed. Satisfaction with life and for the most part, self efficacy were found to decrease slightly as HIV disease progressed. Significant variance in depression, life satisfaction and self efficacy were found across stages of HIV infection. No significant differences between groups that were HIV infected were found for depression, life satisfaction and self efficacy. The severity of depression was found to vary significantly with self efficacy, life satisfaction and access to medical care but not with socioeconomic status. Life satisfaction was found to vary significantly with socioeconomic status, depression and self efficacy but not with access to medical care. Self-efficacy was found to vary significantly with socioeconomic status, depression and life satisfaction but not with access to medical care. Gender and ethnicity were not found to be significant precedent variables in depression for HIV infected individuals. Sexual orientation was found to be a significant precedent variable for depression, life satisfaction and self efficacy.

Influence of gender and life stressors on longitudinal depression treatment outcomes among older primary care patients

Purpose: Depression in older females is a significant and growing problem. Females who experience life stressors across the life span are at higher risk for developing problems with depression than their male counterparts. The primary aim of this study was (a) to examine gender-specific differences in the correlates of depression in older primary care patients based on baseline and longitudinal analyses; and (b) to examine the longitudinal effect of biopsychosocial risk factors on depression treatment outcomes in different models of behavioral healthcare (i.e., integrated care and enhanced referral). Method: This study used a quantitative secondary data analysis with longitudinal data from the Primary Care Research in Substance Abuse and Mental Health for Elderly (PRISM-E) study. A linear mixed model approach to hierarchical linear modeling was used for analysis using baseline assessment, and follow-up from three-month and six-month. Results: For participants diagnosed with major depressive disorder female gender was associated with increased depression severity at six-month compared to males at six-month. Further, the interaction between gender and life stressors found that females who reported loss of family and friends, family issues, money issues, medical illness was related to higher depression severity compared to males whereas lack of activities was related to lower depression severity among females compared to males. Conclusion: These findings suggest that gender moderated the relationship between specific life stressors and depression severity similar to how a protective factor can impact a person's response to a problem and reduce the negative impact of a risk factor on a problem outcome. Therefore, life stressors may be a reliable predictor of depression for both females and males in either behavioral health treatment model. This study concluded that life stressors influence males basic comfort, stability, and survival whereas life stressors influence females' development, personal growth, and happiness; therefore, life stressors may be a useful component to include in gender-based screening and assessment tools for depression. ^

End-of-life care in Ireland: ethical challenges and solutions. Opening Statement to the Houses of the Oireachtas Joint Committee on Health and Children, 24 October 2013.

Children Report on End of Life and Palliative Care in Ireland, Volume 1.

The Relationship Between Support Systems and Disease Burden for Families Coping with Sickle Cell Disease in South Africa and Cameroon

Background: Sickle cell disease (SCD) is a debilitating genetic blood disorder that seriously impacts the quality of life of affected individuals and their families. With 85% of cases occurring in sub-Saharan Africa, it is essential to identify the barriers and facilitators of optimal outcomes for people with SCD in this setting. This study focuses on understanding the relationship between support systems and disease outcomes for SCD patients and their families in Cameroon and South Africa.

Methods: This mixed-methods study utilizes surveys and semi-structured interviews to assess the experiences of 29 SCD patients and 28 caregivers of people with SCD across three cities in two African countries: Cape Town, South Africa; Yaoundé, Cameroon; and Limbe, Cameroon.

Results: Patients in Cameroon had less treatment options, a higher frequency of pain crises, and a higher incidence of malaria than patients in South Africa. Social support networks in Cameroon consisted of both family and friends and provided emotional, financial, and physical assistance during pain crises and hospital admissions. In South Africa, patients relied on a strong medical support system and social support primarily from close family members; they were also diagnosed later in life than those in Cameroon.

Conclusions: The strength of medical support systems influences the reliance of SCD patients and their caregivers on social support systems. In Cameroon the health care system does not adequately address all factors of SCD treatment and social networks of family and friends are used to complement the care received. In South Africa, strong medical and social support systems positively affect SCD disease burden for patients and their caregivers. SCD awareness campaigns are necessary to reduce the incidence of SCD and create stronger social support networks through increased community understanding and decreased stigma.

End-of-life care: identifying an appropriate legal framework for specialist palliative care in Ireland

This thesis argues that the legal framework in Ireland for specialist palliative care is inadequate and consequently a more appropriate legal framework must be identified. This research is guided by three central research questions. The first central research question examines the legitimacy of the distinction between specialist palliative care and euthanasia. The second central research question asks what legal framework currently exists in Ireland for specialist palliative care. The third central research question examines an alternative legal framework for specialist palliative. This thesis is composed of seven chapters. The first Chapter is an introduction to the thesis and defines the terminology and the central research questions. Chapter Two explores the development and practice of palliative care in Ireland. Chapter Three examines the distinction in criminal law between specialist palliative care practices and euthanasia. Chapter Four examines the human rights framework for specialist palliative care. Chapter Five critiques the regulatory framework in Ireland for specialist palliative care. Having gained a thorough understanding of palliative care and the related legal framework, this thesis then engages in comparative analysis of the Netherlands which is used as a source of ideas for reform in Ireland. Chapter Seven is the concluding chapter and, in it, the main findings of this thesis are summarised. The main findings being that: the distinction between specialist palliative care and euthanasia is not sufficiently supported by justifications such as a double effect or the acts and omissions distinction, there is no clear decision-making framework in Ireland for specialist palliative care, and the current legal framework lacks clarity and does not promote consistency between providers of specialist palliative care. This Chapter also proposes that detailed professional standards and guidelines are likely to be the most appropriate way to effect individual and institutional change in the provision of specialist palliative care.

A Framework to Support the Sharing and Reuse of Computable Phenotype Definitions Across Health Care Delivery and Clinical Research Applications.

INTRODUCTION: The ability to reproducibly identify clinically equivalent patient populations is critical to the vision of learning health care systems that implement and evaluate evidence-based treatments. The use of common or semantically equivalent phenotype definitions across research and health care use cases will support this aim. Currently, there is no single consolidated repository for computable phenotype definitions, making it difficult to find all definitions that already exist, and also hindering the sharing of definitions between user groups. METHOD: Drawing from our experience in an academic medical center that supports a number of multisite research projects and quality improvement studies, we articulate a framework that will support the sharing of phenotype definitions across research and health care use cases, and highlight gaps and areas that need attention and collaborative solutions. FRAMEWORK: An infrastructure for re-using computable phenotype definitions and sharing experience across health care delivery and clinical research applications includes: access to a collection of existing phenotype definitions, information to evaluate their appropriateness for particular applications, a knowledge base of implementation guidance, supporting tools that are user-friendly and intuitive, and a willingness to use them. NEXT STEPS: We encourage prospective researchers and health administrators to re-use existing EHR-based condition definitions where appropriate and share their results with others to support a national culture of learning health care. There are a number of federally funded resources to support these activities, and research sponsors should encourage their use.