Launching a Virtual Decision Lab: Development and Field-Testing of a Web-Based Patient Decision Support Research Platform

Over 100 trials show that patient decision aids effectively improve patients’ information comprehension and values-based decision making. However, gaps remain in our understanding of several fundamental and applied questions, particularly related to the design of interactive, personalized decision aids. This paper describes an interdisciplinary development process for, and early field testing of, a web-based patient decision support research platform, or virtual decision lab, to address these questions

Depression, anxiety, pain and quality of life in people living with chronic hepatitis C: A systematic review and meta-analysis

Objectives: Individuals infected with hepatitis C virus (HCV) can develop extrahepatic conditions which may have a significant impact on life expectancy and quality of life. We conducted a systematic review to assess the causal relationship between HCV and extrahepatic conditions and the impact of HCV upon health-related quality of life of people in the UK. / Methods: HCV advocacy groups identified conditions that they thought most important to research, and the perspectives of various stakeholders informed the scope of the review. A comprehensive literature search of a range of electronic databases and websites was undertaken. Screening, quality assessment and data extraction were conducted using specialist software. The key criterion for inclusion in a synthesis was a study’s testing of the association between HCV and either quality of life or conditions specified as important by advocacy groups: depression, anxiety or painful conditions. Other criteria relating to study populations, measures and matching of study groups were also applied. Two reviewers assessed included studies, with disagreements resolved by a third reviewer where necessary. Studies were assessed for methodological quality using standardised appraisal tools. Metaanalyses were performed. Based on the consistency and sufficiency of research evidence, the findings were graded as strong, promising, tentative or inconclusive. / Results: 71 studies were included in the review’s syntheses. All studies were judged to be at a moderate or high risk of bias. Only two UK studies met our inclusion criteria. / Quality of life: Evidence from 22 studies indicates that people with HCV have worse quality of life than ‘general’ or ‘healthy’ populations; meta-analysis of nine studies indicated\ud that the physical (PCS) and mental health (MCS) domains of quality of life on the Health-Related Quality of Life Scale were both statistically and clinically worse among HCV-infected people (PCS: MD 5.54, 95% CI 3.73-7.35, MCS: MD 3.81, 95% CI 1.97-5.64). Evidence from seven included studies suggests that people co-infected with HCV and HIV have worse quality of life than individuals with HIV only; metaanalysis of five studies indicated that both the physical and mental health domains of quality of life were significantly worse among people who were co-infected (PCS: MD 2.57, 95% CI 1.08-4.06, MCS: MD 1.88, 95% CI 0.06-3.69). / Depression and anxiety: Evidence from 22 studies indicates that depression and anxiety are more severe, and depression is more common among people with HCV compared to those without it. Meta-analysis of 12 studies identified the severity of depression in people with HCV to be significantly greater than in those without HCV (Mean difference 0.98, 95% CI 0.43-1.53). Meta-analysis of nine studies identified the severity of clinical anxiety to be significantly greater among people with HCV (Mean difference 0.47, 95% CI 0.09-0.86). Meta-analysis of seven studies identified participants with HCV to be approximately three times more likely to be depressed compared to those without HCV (OR 2.77, 95% CI 1.62-4.74). No statistically significant evidence that anxiety is more common among people with HCV was found. / Pain: Evidence was appraised from 26 studies on painful conditions. A meta-analysis of four studies indicates that people with HCV are 17% more likely to suffer from arthralgia than those without HCV (RR 1.17, 95% CI 1.04-1.31). A meta-analysis of five studies suggested that people with HCV are significantly more likely to suffer from fibromyalgia; key differences across the studies in terms of the health status (co-morbidities) of HCV patients and comparison groups mean it is not possible to quantify the increased risk attributable to HCV. Other studies, including those on arthritis, were not amenable to meta-analysis. / Conclusions: Evidence suggests an association between HCV infection and depression, anxiety, fibromyalgia, arthralgia and health-related quality of life. However, the evidence was graded as ‘promising’ or ‘tentative’ rather than ‘strong’. More high-quality research on the association between HCV and these conditions is needed

Delivering Patient Decision Aids on the Internet: Definitions, Theories, Current Evidence, and Emerging Research Areas

Background: In 2005, the International Patient Decision Aids Standards Collaboration identified twelve quality dimensions to guide assessment of patient decision aids. One dimension — the delivery of patient decision aids on the Internet — is relevant when the Internet is used to provide some or all components of a patient decision aid. Building on the original background chapter, this paper provides an updated definition for this dimension, outlines a theoretical rationale, describes current evidence, and discusses emerging research areas. Methods: An international, multidisciplinary panel of authors examined the relevant theoretical literature and empirical evidence through 2012. Results: The updated definition distinguishes Internet-delivery of patient decision aids from online health information and clinical practice guidelines. Theories in cognitive psychology, decision psychology, communication, and education support the value of Internet features for providing interactive information and deliberative support. Dissemination and implementation theories support Internet-delivery for providing the right information (rapidly updated), to the right person (tailored), at the right time (the appropriate point in the decision making process). Additional efforts are needed to integrate the theoretical rationale and empirical evidence from health technology perspectives, such as consumer health informatics, user experience design, and human-computer interaction. Despite Internet usage ranging from 74% to 85% in developed countries and 80% of users searching for health information, it is unknown how many individuals specifically seek patient decision aids on the Internet. Among the 86 randomized controlled trials in the 2011 Cochrane Collaboration ’ s review of patient decision aids, only four studies focused on Internet-delivery. Given the limited number of published studies, this paper particularly focused on identifying gaps in the empirical evidence base and identifying emerging areas of research. Conclusions: As of 2012, the updated theoretical rationale and emerging evidence suggest potential benefits to delivering patient decision aids on the Internet. However, additional research is needed to identify best practices and quality metrics for Internet-based development, evaluation, and dissemination, particularly in the areas of interactivity, multimedia components, socially-generated information, and implementation strategies

The mechanisms and processes of connection: developing a causal chain model capturing impacts of receiving recorded mental health recovery narratives.

BACKGROUND: Mental health recovery narratives are a core component of recovery-oriented interventions such as peer support and anti-stigma campaigns. A substantial number of recorded recovery narratives are now publicly available online in different modalities and in published books. Whilst the benefits of telling one's story have been investigated, much less is known about how recorded narratives of differing modalities impact on recipients. A previous qualitative study identified connection to the narrator and/or to events in the narrative to be a core mechanism of change. The factors that influence how individuals connect with a recorded narrative are unknown. The aim of the current study was to characterise the immediate effects of receiving recovery narratives presented in a range of modalities (text, video and audio), by establishing the mechanisms of connection and the processes by which connection leads to outcomes. METHOD: A study involving 40 mental health service users in England was conducted. Participants were presented with up to 10 randomly-selected recovery narratives and were interviewed on the immediate impact of each narrative. Thematic analysis was used to identify the mechanisms of connection and how connection leads to outcome. RESULTS: Receiving a recovery narrative led participants to reflect upon their own experiences or those of others, which then led to connection through three mechanisms: comparing oneself with the narrative and narrator; learning about other's experiences; and experiencing empathy. These mechanisms led to outcomes through three processes: the identification of change (through attending to narrative structure); the interpretation of change (through attending to narrative content); and the internalisation of interpretations. CONCLUSIONS: This is the first study to identify mechanisms and processes of connection with recorded recovery narratives. The empirically-based causal chain model developed in this study describes the immediate effects on recipients. This model can inform selection of narratives for use in interventions, and be used to support peer support workers in recounting their own recovery narratives in ways which are maximally beneficial to others

The impact of mental health recovery narratives on recipients experiencing mental health problems: Qualitative analysis and change model.

BACKGROUND: Mental health recovery narratives are stories of recovery from mental health problems. Narratives may impact in helpful and harmful ways on those who receive them. The objective of this paper is to develop a change model identifying the range of possible impacts and how they occur. METHOD: Semi-structured interviews were conducted with adults with experience of mental health problems and recovery (n = 77). Participants were asked to share a mental health recovery narrative and to describe the impact of other people's recovery narratives on their own recovery. A change model was generated through iterative thematic analysis of transcripts. RESULTS: Change is initiated when a recipient develops a connection to a narrator or to the events descripted in their narrative. Change is mediated by the recipient recognising experiences shared with the narrator, noticing the achievements or difficulties of the narrator, learning how recovery happens, or experiencing emotional release. Helpful outcomes of receiving recovery narratives are connectedness, validation, hope, empowerment, appreciation, reference shift and stigma reduction. Harmful outcomes are a sense of inadequacy, disconnection, pessimism and burden. Impact is positively moderated by the perceived authenticity of the narrative, and can be reduced if the recipient is experiencing a crisis. CONCLUSIONS: Interventions that incorporate the use of recovery narratives, such as peer support, anti-stigma campaigns and bibliotherapy, can use the change model to maximise benefit and minimise harms from narratives. Interventions should incorporate a diverse range of narratives available through different mediums to enable a range of recipients to connect with and benefit from this material. Service providers using recovery narratives should preserve authenticity so as to maximise impact, for example by avoiding excessive editing

Beliefs and practices of patients with advanced cancer: implications for communication

The aim of this study was to investigate the beliefs that patients with advanced cancer held about the curability of their cancer, their use of alternatives to conventional medical treatment, and their need to have control over decisions about treatment. Of 149 patients who fulfilled the criteria for participation and completed a self-administered questionnaire, 45 patients (31%) believed their cancer was incurable, 61 (42%) were uncertain and 39 (27%) believed their cancer was curable. The index of need for control over treatment decisions was low in 53 patients (35.6%) and high in only 17 patients (11.4%). Committed users of alternatives to conventional medical treatments were more likely to believe that their cancer was curable (