Patients or volunteers? The impact of motivation for trial participation on the efficacy of patient decision Aids: a secondary analysis of a Cochrane systematic review.

BACKGROUND: Efficacy of patient decision aids (PtDAs) may be influenced by trial participants' identity either as patients seeking to benefit personally from involvement or as volunteers supporting the research effort. AIM: To determine if study characteristics indicative of participants' trial identity might influence PtDA efficacy. METHODS: We undertook exploratory subgroup meta-analysis of the 2011 Cochrane review of PtDAs, including trials that compared PtDA with usual care for treatment decisions. We extracted data on whether participants initiated the care pathway, setting, practitioner interactions, and 6 outcome variables (knowledge, risk perception, decisional conflict, feeling informed, feeling clear about values, and participation). The main subgroup analysis categorized trials as "volunteerism" or "patienthood" on the basis of whether participants initiated the care pathway. A supplementary subgroup analysis categorized trials on the basis of whether any volunteerism factors were present (participants had not initiated the care pathway, had attended a research setting, or had a face-to-face interaction with a researcher). RESULTS: Twenty-nine trials were included. Compared with volunteerism trials, pooled effect sizes were higher in patienthood trials (where participants initiated the care pathway) for knowledge, decisional conflict, feeling informed, feeling clear, and participation. The subgroup difference was statistically significant for knowledge only (P = 0.03). When trials were compared on the basis of whether volunteerism factors were present, knowledge was significantly greater in patienthood trials (P < 0.001), but there was otherwise no consistent pattern of differences in effects across outcomes. CONCLUSIONS: There is a tendency toward greater PtDA efficacy in trials in which participants initiate the pathway of care. Knowledge acquisition appears to be greater in trials where participants are predominantly patients rather than volunteers.

A systematic review of the effectiveness of treatments in altering the natural history of intermittent exotropia.

Evidence of effectiveness of interventions for treatment of childhood intermittent exotropia, X(T), is unclear. We conducted a systematic review to locate, appraise and synthesise evidence of effectiveness, including twelve electronic databases, supplemented with hand searches and expert contact. We included randomised controlled trials, quasi-experimental and cohort studies with a comparison group examining interventions for divergence excess, simulated divergence excess or basic type X(T) in children, up to and including 18 years of age, followed for at least 6 months. Dual data extraction and critical appraisal were conducted and a narrative synthesis undertaken. Eleven studies satisfied the eligibility criteria. Seven examined the comparative effectiveness of two surgical procedures; four compared surgery with other interventions, including botulinum toxin A therapy, orthoptic exercises, occlusion, binocular vision training and watchful waiting. The evidence retrieved was of limited extent and quality with differences across studies in terms of outcome assessment and most appropriate time-point for measuring long-term outcomes. There were mixed outcomes when comparing unilateral recession/resection (R&R) with bilateral lateral rectus recession (BLR) on improving angle of deviation, which makes it difficult to recommend either surgical option with confidence. While non-surgical interventions appear less effective in terms of improving angle of deviation, they are rarely associated with adverse outcomes. Given the limited evidence base, better designed studies are required to address the question of the most effective management for treatment of childhood X(T). Importantly, consensus is required on what constitutes a successful outcome as well as agreement on how this should be measured.

Incorporating the patient perspective: a critical review of clinical practice guidelines for implantable cardioverter defibrillator therapy.

PURPOSE: Implantable cardioverter defibrillators (ICDs) are recommended for patients with heart failure and/or ventricular arrhythmias at risk of sudden cardiac death. Guidelines for ICD implantation are derived from robust clinical data. However, critical factors which might influence treatment decisions include patient preferences. We set out to determine how clinical practice guidelines (CPGs) incorporate the patient perspective into supporting decision making about ICDs. METHODS: CPGs on ICD implantation were purposively selected from national and professional bodies in Europe, North America and Australasia. CPGs were then appraised according to three key domains of shared decision making: (a) informing patients about the risks, benefits and consequences known to be important to patients; (b) personalising risks and benefits and (c) involvement of patient (plus family/significant others if desired) in decision making. RESULTS: Appraisal of six current CPGs found major deficiencies or inconsistencies in guidance. CPGs tended to focus on evidence of device effectiveness, with sparse consideration of other outcomes important to patients such as impacts on quality of life and psychosocial well-being. Little reference was made to involvement of the patient in decision making. CONCLUSIONS: This suggests that embedding shared decision in CPGs will improve the patient-centeredness of ICD treatment by enabling patients to make informed, value-based decisions. Specific recommendations for CPG development include the need for signposting to preference sensitive decision points as well as inclusion of a broader range of outcomes which are known to be important to patients when deciding whether or not to have a device fitted.

Reducing health inequalities in priority public health conditions: using rapid review to develop proposals for evidence-based policy.

BACKGROUND: In November 2008, the Secretary of State for Health (England) commissioned an independent review to propose effective strategies for reducing health inequalities. Review task groups were given just 3 months to make preliminary evidence-based recommendations. In this paper, we describe the methodology used, and the recommendations made, by the group tasked with inequalities in priority public health conditions. METHODS: A series of rapid literature reviews of the policy-relevant international evidence base was undertaken. Quantitative studies of any design, which looked at the effects on health inequalities, the social gradient or overall population health effects, of interventions designed to address the social determinants of selected public health priority conditions were examined. Recommendations were distilled using a Delphi approach. RESULTS: Five key policy proposals were made: reduce smoking in the most deprived groups; improve availability of and access to healthier food choices amongst low income groups; improve the early detection and treatment of diseases; introduce a minimum price per unit for alcohol and improve the links between physical and mental health care. CONCLUSION: The combination of rapid review and Delphi distillation produced a shortlist of evidence-based recommendations within the allocated time frame. There was a dearth of robust evidence on the effectiveness and cost-effectiveness of the interventions we examined: our proposals had to be based on extrapolation from general population health effects. Extensive, specific and robust evidence is urgently needed to guide policy and programmes. In the meantime, our methodology provides a reasonably sound and pragmatic basis for evidence-based policy-making.

The place and practices of well-being in local governance.

The concept of well-being has become prominent within national policy goals in the UK since the end of the 1990s. However, the concept of well-being remains ill defined, an instability that is increasingly understood as problematic to policy making. We engage with this terminological instability through an exploration of how the concept of well-being is practised discursively in local governance and critically examine the place of the concept in local policy making. In contrast to the current enthusiasm to define and measure well-being, we argue that the conceptual instability has inherent value for local governance. The concept of well-being is practised through a number of potentially conflicting discourses, but it is exactly this conceptual instability that enables a local negotiation and combination of alternative policy frameworks for local place-shaping strategies. As such, well-being not only is an overarching goal of governance but also contributes to the dynamics of the policy process.

Risk factors for pediatric invasive pneumococcal disease in the Intermountain West, 1996-2002.

PURPOSE: In response to concerns that the epidemiology of pediatric invasive pneumococcal disease (IPD) in the Intermountain West (i.e., Utah, Idaho, Wyoming, Montana, and parts of Arizona and Nevada) was poorly understood and might differ from elsewhere in the United States, a case-control study was undertaken to determine factors associated with IPD during 1996-2002. METHODS: A telephone questionnaire was administered to parents of children comprising 120 cases identified through hospital records and to parents of 156 age-matched controls located by random-digit dialing. The unit of analysis was each matched case-control set. RESULTS: Underlying chronic illness was reported for 32 (27%) of the cases. For previously healthy children, breastfeeding had a protective benefit (adjusted odds ratio: 0.2; 95% confidence interval [CI], 0.1-0.6), while a history of tympanostomy tube surgery was a risk factor (adjusted odds ratio: 12.6; 95% CI, 1.5-107.3). CONCLUSIONS: The presence of an underlying chronic illness was the strongest risk factor for IPD. Except for a history of tympanostomy tube surgery, the factors associated with IPD in this investigation were similar to those reported from other geographic regions. Tympanostomy surgery might serve as a surrogate indicator for predisposition to recurrent otitis media or decreased ability to clear pneumococcal infection, raising risk for invasive disease. Pediatric clinicians should continue to encourage breastfeeding, and continued emphasis on pneumococcal vaccination should help prevent IPD.