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Objective: To shorten the Patient Engagement In Research Scale (PEIRS) to its most essential items and evaluate its measurement properties for assessing the degree of patients' and family caregivers' meaningful engagement as partners in research projects. Methods: A prospective cross‐sectional web‐based survey in Canada and the USA, and also paper‐based in Canada. Participants were patients or family caregivers who had engaged in research projects within the last 3 years, were ≥17 years old, and communicated in English. Extensive psychometric analyses were conducted. Results: 119 participants: 99 from Canada, 74 female, 51 aged 17‐35 years and 50 aged 36‐65 years, 60 had post‐secondary education, and 74 were Caucasian/white. The original 37‐item PEIRS was shortened to 22 items (PEIRS‐22), mainly because of low inter‐item correlations. PEIRS‐22 had a single dominant construct that accounted for 55% of explained variance. Analysis of PEIRS‐22 scores revealed the following: (1) acceptable floor and ceiling effects (<15%), (2) internal consistency (ordinal alpha = 0.96), (3) structural validity by fit to a Rasch measurement model, (4) construct validity by moderate correlations with the Public and Patient Engagement Evaluation Tool, (5) good test‐retest reliability (ICC2,1 = 0.86) and (6) interpretability demonstrated by significant differences among PEIRS‐22 scores across three levels of global meaningful engagement in research. Conclusions: The shortened PEIRS is valid and reliable for assessing the degree of meaningful patient and family caregiver engagement in research. It enables standardized assessment of engagement in research across various contexts. Patient or public contribution: A researcher‐initiated collaboration, patient partners contributed from study conception to manuscript write‐up. [ABSTRACT FROM AUTHOR]

Background: Lone parents and their children experience higher than average levels of adverse health and social outcomes, much of which are explained by high rates of poverty. Many high income countries have attempted to address high poverty rates by introducing employment requirements for lone parents in receipt of welfare benefits. However, there is evidence that employment may not reduce poverty or improve the health of lone parents and their children.Methods: We conducted a systematic review of qualitative studies reporting lone parents' accounts of participation in welfare to work (WtW), to identify explanations and possible mechanisms for the impacts of WtW on health and wellbeing. Twenty one bibliographic databases were searched. Two reviewers independently screened references and assessed study quality. Studies from any high income country that met the criteria of focussing on lone parents, mandatory WtW interventions, and health or wellbeing were included. Thematic synthesis was used to investigate analytic themes between studies.Results: Screening of the 4703 identified papers and quality assessment resulted in the inclusion of 16 qualitative studies of WtW in five high income countries, USA, Canada, UK, Australia, and New Zealand, covering a variety of welfare regimes. Our synthesis found that WtW requirements often conflicted with child care responsibilities. Available employment was often poorly paid and precarious. Adverse health impacts, such as increased stress, fatigue, and depression were commonly reported, though employment and appropriate training was linked to increased self-worth for some. WtW appeared to influence health through the pathways of conflict and control, analytical themes which emerged during synthesis. WtW reduced control over the nature of employment and care of children. Access to social support allowed some lone parents to manage the conflict associated with employment, and to increase control over their circumstances, with potentially beneficial health impacts.Conclusion: WtW can result in increased conflict and reduced control, which may lead to negative impacts on mental health. Availability of social support may mediate the negative health impacts of WtW. [ABSTRACT FROM AUTHOR]

Adolescent anhedonia is a multidimensional construct defined as the loss of enjoyment or pleasure across multiple domains of life. Anhedonia is concurrently associated with substantial impairment and distress, and it prospectively predicts the onset, severity, and treatment of depression. Despite its demonstrated importance, a limited number of anhedonia measures are validated for adolescents. The current study assessed the psychometric properties of the Dimensional Anhedonia Rating Scale (DARS) in 400 English-speaking, 12- to 19-year-old adolescents. Overall, the DARS demonstrated good convergent and discriminant validity, but sub-optimal concurrent validity. The strengths and limitations of the DARS and its utility as a measure of adolescent anhedonia are discussed. Furthermore, future directions for the construction of measures of adolescent anhedonia are outlined. [ABSTRACT FROM AUTHOR]

Background: Immunological responses to metal ions can occur in people with metal implantable devices. Nevertheless, patients are not routinely asked about metal hypersensitivity nor tested for it prior to surgical procedures. Moreover, we have not identified any published literature on patients' experiences with this condition. We undertook this study to better understand the experiences of patients with metal hypersensitivity and to determine what information would help them make an informed decision about implantable medical devices with metal compositions. Methods: This is a patient-oriented research using an interpretative phenomenological methodology. We enrolled 16 people from five countries (Canada, New Zealand, Spain, the UK, and the USA) who experienced metal hypersensitivity following implantable medical device. We collected data from in-depth, semi-structured interviews focused on pre-procedural patient education and postoperative experiences to elucidate the barriers and opportunities related to metal hypersensitivity. We analyzed the data using interpretative phenomenological analysis. Results: The majority were white biological women between the ages of 34 and 65. None of the participants were informed about immunological responses to metals in implants during the consenting process. They encountered many challenges when symptoms of metal hypersensitivity occurred. The outcomes for the few who had the implants removed were mixed. Conclusion: Hypersensitivity reactions to metal need to be discussed as part of the consenting process, and additional strategies are needed to mitigate this issue in the health system. [ABSTRACT FROM AUTHOR]

This article presents emerging findings from the first year of a two-year study, which employed ethnographic methods to explore the culture of interprofessional collaboration (IPC) and family member involvement in eight North American intensive care units (ICUs). The study utilized a comparative ethnographic approach - gathering observation, interview and documentary data relating to the behaviors and attitudes of healthcare providers and family members across several sites. In total, 504 hours of ICU-based observational data were gathered over a 12-month period in four ICUs based in two US cities. In addition, 56 semi-structured interviews were undertaken with a range of ICU staff (e.g. nurses, doctors and pharmacists) and family members. Documentary data (e.g. clinical guidelines and unit policies) were also collected to help develop an insight into how the different sites engaged organizationally with IPC and family member involvement. Directed content analysis enabled the identification and categorization of major themes within the data. An interprofessional conceptual framework was utilized to help frame the coding for the analysis. The preliminary findings presented in this paper illuminate a number of issues related to the nature of IPC and family member involvement within an ICU context. These findings are discussed in relation to the wider interprofessional and health services literature. [ABSTRACT FROM AUTHOR]

Introduction: Culture-sensitive (CS) and patient-centered (PC) care are considered essential to achieve high-quality equitable care. The purpose of this study was to determine how expert nurses incorporate CS/PC care into their assessment and care planning practices, especially for culturally diverse and marginalized patients. Methodology: Using a qualitative, descriptive design, we conducted a focus group at the October 2019 Transcultural Nursing Society Conference. Participants (n = 9) discussed how they instilled cultural sensitivity and patient-centeredness into their assessment and care planning skills. Results: Participants revealed attitudes, knowledge, and skills associated with CS/PC assessment and care planning. They also identified specific strategies for translating CS/PC theory into assessment and care planning practices. Discussion: Three principles and many pragmatic strategies for incorporating CS/PC care into daily practice emerged from the data. Nurses may find these principles and strategies helpful in integrating CS/PC care into their daily care of patients in busy clinical settings. [ABSTRACT FROM AUTHOR]

Aim: The purpose of this study was to understand the experiences of nurse managers during the COVID‐19 pandemic. Background: There is a growing body of knowledge about the experiences of clinical nurses during COVID‐19. However, there is less evidence about the experiences of nurse managers during the pandemic. Methods: Eight nurse managers, from acute care and outpatient settings, completed semistructured interviews about how their roles had changed during the pandemic, how they felt about these changes, and what had gone well or been difficult. Each participant was interviewed once, for 20–60 min. We used thematic analysis methods to analyse the interview transcripts. Findings Nurse managers had to coordinate care in a context of uncertainty and guidance that changed frequently. Participants found that their roles and responsibilities either expanded to include more duties, or they were asked to take on a completely new role, with no orientation or training. Nurse managers were expected to provide support to their staff and patients, but did not necessarily receive support themselves. Participants were expected to plan simultaneously for care during the pandemic and for a return to normal working conditions. These factors contributed to challenging and difficult participant experiences of managing during COVID‐19. Conclusion: Nurse managers' experiences during COVID‐19 are influenced by changes to their roles and the support they received. Nurse managers continue to support high‐quality care despite working a difficult context. Implications for nursing management: Where possible, nurse managers can be supported to extend their roles or receive additional education and support if they are required to take on new responsibilities. Nurse managers require support in order to be a resource for their staff. [ABSTRACT FROM AUTHOR]

Survival for hypoplastic left heart syndrome (HLHS) has improved dramatically. Little is known about early family function, quality of life (QOL), or well-being/adjustment for parents of infants with HLHS. Parent/family outcomes over time, predictors, and differences in 143 mothers and 72 fathers were examined. Parents reported better family function compared with published norms, but 26% experienced family dysfunction. QOL and well-being were significantly lower than adult norms. QOL scores generally declined over time, whereas self-reported well-being improved. Responses from mothers and fathers showed different trends, with mothers having worse scores on most measures and at most time points. Being a single parent was a risk factor for poorer family function, but not for lower individual QOL or well-being. Family characteristics, stress, and coping skills were predictive of outcomes. Parents' psychosocial responses to the challenges of life with infants with HLHS change over time. Individually tailored psychosocial support is needed. [ABSTRACT FROM AUTHOR]

Background: Lower limb deformities include conditions such as leg length discrepancy, lower limb deficiency and associated angular and rotational deformities of the hips, knees, ankles and feet. Children with lower limb deformities often have physical limitations due to gait irregularities and pain. The differences in the appearance and function of their lower limbs can discourage participation in social, recreational and leisure activities, which may result in behavioural, emotional, psychological and social adjustment problems. The health-related quality of life (HRQL) of these children is often impacted due to the factors discussed above, as well as by the complex surgical procedures. Surgical treatment options for limb deformities in children vary from limb lengthening and reconstruction to amputation. The lack of evidence demonstrating superiority of either treatment options and their effect on HRQL limits the ability of healthcare providers to counsel families on the best evidence-based treatment option for them. This manuscript describes the international qualitative study which guided the development of a new patient-reported outcome measure (PROM). Individual semi-structured face-to-face interviews with children with lower limb deformities and their parents were conducted at five sites: Canada (2 sites), Ethiopia, India and the USA. Results: Seventy-nine interviews were conducted at five international sites. Five main themes emerged from the qualitative interviews and formed the basis of the conceptual framework. These themes were: 1) appearance, 2) physical health, 3) psychological health 4) school and 5) social health. Conclusions: Lower limb deformities have a substantial impact on the HRQL of children. The concepts of interest identified in our study were similar across children from all countries. The conceptual framework guided the development of outcome scales specific to these patients. The information about the impact of various treatment options on the HRQL of children with lower limb deformities, collected using this new PROM, could be used to inform parents and children about outcomes (physical, social, psychological) associated with specific treatment options. This information could supplement other objective outcome information (e.g., complication rates, how the leg will look, etc.) to help families to come to a more informed decision on a child's course of treatment. [ABSTRACT FROM AUTHOR]

Adolescent suicide is a preventable health problem; however, warning signs are often missed. In this study we developed a grounded theory to explore the process of how adolescent girl suicide attempters escape suicide in a sample of 12 young female adults ages 18-25. Using grounded theory methods of constant comparison, memo-writing, axial, and theoretical coding, searching for a sense of place emerged as the core process encompassing social process stages of: (1) existing in a toxic environment; (2) seeing suicide as the only way out; (3) seeing new ways to escape. Implications for nursing practice, education, and research are discussed. [ABSTRACT FROM AUTHOR]

Purpose: To explore participants' experiences in a group-based yoga with psychoeducation intervention designed to facilitate community integration for people with traumatic brain injury and their caregivers. Materials and methods: We conducted semi-structured interviews with 13 people with traumatic brain injury and three caregivers who had completed LoveYourBrain Yoga, a 6-session, manualized, group-based yoga intervention that incorporates breathing exercises, yoga, meditation, and psychoeducation. Interviews were analyzed using content analysis. Results: We identified seven themes: ease of participation, belonging, sustaining community connection, physical health, self-regulation, self-efficacy, and resilience. All participants valued the community-based yoga studio environment and multifaceted structure of the program. Participants reported improvements in strength, balance, flexibility, and attention control, and a greater sense of belonging, community connection, and ability to move forward with their lives. Participants reported ongoing use of tools (e.g., breathing exercises) to cope with negative emotions and stress. About half of participants sustained relationships built during LoveYourBrain Yoga and felt more capable of accessing other activities in their community. Conclusions: LoveYourBrain Yoga successfully promoted community integration for people with traumatic brain injury. It also facilitated diverse and meaningful physical, psychological, and social health benefits, which suggest that it may be an effective mode of community-based rehabilitation. Traumatic brain injury survivors often struggle to participate in their community, the ultimate goal of rehabilitation Yoga is a holistic therapy with many benefits, yet is not accessible to the traumatic brain injury population at the community level Participants in a community-based yoga with psychoeducation intervention in six states experienced diverse and meaningful physical, psychological, and social health benefits Group-based yoga with psychoeducation may be an effective mode of community integration and community-based rehabilitation for traumatic brain injury survivors [ABSTRACT FROM AUTHOR]

LGBTQ+ (lesbian, gay, bisexual, transgender, queer, etc.) youth are at increased risk for negative outcomes. Yet little is known about their engagement with communities and resources that may ameliorate risk, particularly online. Oriented by a uses and gratifications approach, this secondary analysis (n = 4,009) of LGBTQ+ youth (aged 14–29) compares online versus offline experiences. Respondents were significantly more likely to participate in LGBTQ+ communities online. Youth were also more active, and felt safer and more supported, when participating in online LGBTQ + communities. Additionally, respondents sought online information, support, and resources at higher rates than offline. Increased attention toward online programming and resource development is warranted. [ABSTRACT FROM AUTHOR]

Rates of medication nonadherence in youth with multiple sclerosis (MS) range from 10% to 60%. Qualitative studies of adherence can provide insight into children's own perspectives about barriers and facilitators to their adherence and inform future interventions. This qualitative longitudinal descriptive study included children with MS (n = 28) participating in a randomized controlled trial focused on medication adherence (clinicaltrials.gov: NCT02234713). Following established methods, three independent reviewers coded transcripts of motivational interviewing (MI) sessions (three interviews per subject, performed monthly over a 3-month period) for relevant themes. They were subsequently categorized using inductive content analysis. Youth described medication adherence as being dependent on the ability to build and maintain healthy habits related to medication use, including embodiment of these habits. Barriers and facilitators included remembering/forgetting, experiences with fatigue, and experiences with medication. These themes were maintained through the second and third interviews. Future research focus on barriers and facilitators to habit maintenance in this population. [ABSTRACT FROM AUTHOR]

Objective: The purpose of this study was to better understand the benefits of self-help group involvement by adults with hearing loss. Design: A secondary content analysis of interview transcripts of participants from a previous study on the impact of stigma on help-seeking was carried out. Study sample: Ten members (aged 55-76 years) of self-help groups for persons with hearing loss in the United States of America and Canada participated in the interviews. Results: Three themes describing the benefits of self-help group participation emerged: (1) Practical and accessible information about hearing loss; (2) Social belonging leading to personal transformation; and (3) A new and mutually beneficial direction. Conclusions: The findings are discussed in relation to the "helper therapy principle", as well as group audiological rehabilitation. [ABSTRACT FROM AUTHOR]

Public debates about both immigration policy and social safety net programs are increasingly contentious. However, little research has explored differences in health within America's diverse population of foreign-born workers, and the effect of these workers on public benefit programs is not well understood. We investigate differences in work disability by nativity and origins and describe the mix of health problems associated with receiving Social Security Disability Insurance benefits. Our analysis draws on two large national data sources-the American Community Survey and comprehensive administrative records from the Social Security Administration-to determine the prevalence and incidence of work disability between 2001 and 2010. In sharp contrast to prior research, we find that foreign-born adults are substantially less likely than native-born Americans to report work disability, to be insured for work disability benefits, and to apply for those benefits. Overall and across origins, the foreign-born also have a lower incidence of disability benefit award. Persons from Africa, Northern Europe, Canada, and parts of Asia have the lowest work disability benefit prevalence rates among the foreign-born; persons from Southern Europe, Western Europe, the former Soviet Union, and the Caribbean have the highest rates. [ABSTRACT FROM AUTHOR]

Background: Large-scale implementation of evidence-based psychotherapies (EBPs) such as cognitive processing therapy (CPT) for posttraumatic stress disorder can have a tremendous impact on mental and physical health, healthcare utilization, and quality of life. While many mental health systems (MHS) have invested heavily in programs to implement EBPs, few eligible patients receive EBPs in routine care settings, and clinicians do not appear to deliver the full treatment protocol to many of their patients. Emerging evidence suggests that when CPT and other EBPs are delivered at low levels of fidelity, clinical outcomes are negatively impacted. Thus, identifying strategies to improve and sustain the delivery of CPT and other EBPs is critical. Existing literature has suggested two competing strategies to promote sustainability. One emphasizes fidelity to the treatment protocol through ongoing consultation and fidelity monitoring. The other focuses on improving the fit and effectiveness of these treatments through appropriate adaptations to the treatment or the clinical setting through a process of data-driven, continuous quality improvement. Neither has been evaluated in terms of impact on sustained implementation.Methods: To compare these approaches on the key sustainability outcomes and provide initial guidance on sustainability strategies, we propose a cluster randomized trial with mental health clinics (n = 32) in three diverse MHSs that have implemented CPT. Cohorts of clinicians and clinical managers will participate in 1 year of a fidelity oriented learning collaborative or 1 year of a continuous quality improvement-oriented learning collaborative. Patient-level PTSD symptom change, CPT fidelity and adaptation, penetration, and clinics' capacity to deliver EBP will be examined. Survey and interview data will also be collected to investigate multilevel influences on the success of the two learning collaborative strategies. This research will be conducted by a team of investigators with expertise in CPT implementation, mixed method research strategies, quality improvement, and implementation science, with input from stakeholders in each participating MHS.Discussion: It will have broad implications for supporting ongoing delivery of EBPs in mental health and healthcare systems and settings. The resulting products have the potential to significantly improve efforts to ensure ongoing high quality implementation and consumer access to EBPs.Trial Registration: NCT02449421 . Registered 02/09/2015. [ABSTRACT FROM AUTHOR]

Data from the Patients and Families Psychological Response to the Home Automated External Defibrillator Trial were used to examine the relationship between biopsychosocial variables and patients' coping strategies postmyocardial infarction. This study is the secondary data analysis of longitudinal observational study. A total of 460 patient-spouse pairs were recruited in January 2003 to October 2005. Hierarchical linear regression analysis examined biological/demographic, psychological and social variables regarding patients' coping scores using the Family Crisis Oriented Personal Evaluation Scale. Lower social support and social support satisfaction predicted lower total coping scores. Being younger, male gender and time since the myocardial infarction predicted lower positive coping strategy use. Higher anxiety and lower social support were related to fewer positive coping methods. Lower educational levels were related to increased use of negative coping strategies. Reduced social support predicted lower total coping scores and positive coping strategy use and greater passive coping style use. Social support from a broad network assisted with better coping; those living alone may need additional support. Social support and coping strategies should be taken into consideration for patients who have experienced a cardiac event. [ABSTRACT FROM AUTHOR]

The purpose of this study was to estimate and examine ways to improve the reliability of change scores on the Alzheimer’s Disease Assessment Scale, Cognitive Subtest (ADAS-Cog). The sample, provided by the Alzheimer’s Disease Neuroimaging Initiative, included individuals with Alzheimer’s disease (AD) (n = 153) and individuals with mild cognitive impairment (MCI) (n = 352). All participants were administered the ADAS-Cog at baseline and 1 year, and change scores were calculated as the difference in scores over the 1-year period. Three types of change score reliabilities were estimated using multivariate generalizability. Two methods to increase change score reliability were evaluated: reweighting the subtests of the scale and adding more subtests. Reliability of ADAS-Cog change scores over 1 year was low for both the AD sample (ranging from .53 to .64) and the MCI sample (.39 to .61). Reweighting the change scores from the AD sample improved reliability (.68 to .76), but lengthening provided no useful improvement for either sample. The MCI change scores had low reliability, even with reweighting and adding additional subtests. The ADAS-Cog scores had low reliability for measuring change. Researchers using the ADAS-Cog should estimate and report reliability for their use of the change scores. The ADAS-Cog change scores are not recommended for assessment of meaningful clinical change. [ABSTRACT FROM PUBLISHER]

Importance: Differences in utilization and costs of end-of-life care among developed countries are of considerable policy interest.Objective: To compare site of death, health care utilization, and hospital expenditures in 7 countries: Belgium, Canada, England, Germany, the Netherlands, Norway, and the United States.Design, Setting, and Participants: Retrospective cohort study using administrative and registry data from 2010. Participants were decedents older than 65 years who died with cancer. Secondary analyses included decedents of any age, decedents older than 65 years with lung cancer, and decedents older than 65 years in the United States and Germany from 2012.Main Outcomes and Measures: Deaths in acute care hospitals, 3 inpatient measures (hospitalizations in acute care hospitals, admissions to intensive care units, and emergency department visits), 1 outpatient measure (chemotherapy episodes), and hospital expenditures paid by insurers (commercial or governmental) during the 180-day and 30-day periods before death. Expenditures were derived from country-specific methods for costing inpatient services.Results: The United States (cohort of decedents aged >65 years, N = 211,816) and the Netherlands (N = 7216) had the lowest proportion of decedents die in acute care hospitals (22.2.% and 29.4%, respectively). A higher proportion of decedents died in acute care hospitals in Belgium (N = 21,054; 51.2%), Canada (N = 20,818; 52.1%), England (N = 97,099; 41.7%), Germany (N = 24,434; 38.3%), and Norway (N = 6636; 44.7%). In the last 180 days of life, 40.3% of US decedents had an intensive care unit admission compared with less than 18% in other reporting nations. In the last 180 days of life, mean per capita hospital expenditures were higher in Canada (US $21,840), Norway (US $19,783), and the United States (US $18,500), intermediate in Germany (US $16,221) and Belgium (US $15,699), and lower in the Netherlands (US $10,936) and England (US $9342). Secondary analyses showed similar results.Conclusions and Relevance: Among patients older than 65 years who died with cancer in 7 developed countries in 2010, end-of-life care was more hospital-centric in Belgium, Canada, England, Germany, and Norway than in the Netherlands or the United States. Hospital expenditures near the end of life were higher in the United States, Norway, and Canada, intermediate in Germany and Belgium, and lower in the Netherlands and England. However, intensive care unit admissions were more than twice as common in the United States as in other countries. [ABSTRACT FROM AUTHOR]

Background: The Seven Countries Study in the 1960s showed very low mortality from coronary heart disease (CHD) in Japan, which was attributed to very low levels of total cholesterol. Studies of migrant Japanese to the USA in the 1970s documented increase in CHD rates, thus CHD mortality in Japan was expected to increase as their lifestyle became Westernized, yet CHD mortality has continued to decline since 1970. This study describes trends in CHD mortality and its risk factors since 1980 in Japan, contrasting those in other selected developed countries.Methods: We selected Australia, Canada, France, Japan, Spain, Sweden, the UK and the USA. CHD mortality between 1980 and 2007 was obtained from WHO Statistical Information System. National data on traditional risk factors during the same period were obtained from literature and national surveys.Results: Age-adjusted CHD mortality continuously declined between 1980 and 2007 in all these countries. The decline was accompanied by a constant fall in total cholesterol except Japan where total cholesterol continuously rose. In the birth cohort of individuals currently aged 50-69 years, levels of total cholesterol have been higher in Japan than in the USA, yet CHD mortality in Japan remained the lowest: >67% lower in men and > 75% lower in women compared with the USA. The direction and magnitude of changes in other risk factors were generally similar between Japan and the other countries.Conclusions: Decline in CHD mortality despite a continuous rise in total cholesterol is unique. The observation may suggest some protective factors unique to Japanese. [ABSTRACT FROM AUTHOR]

Few youth with autism spectrum disorder (ASD) nationally report receiving services to help them transition from the pediatric health care system to the adult health care system. For example, only one-fifth (21.1%) of youth with ASD receive any transition planning services. To better understand why the transition from pediatric to adult health care is so difficult, we interviewed pediatric health care providers with extensive experience serving youth with ASD. We gathered information about the strategies and interventions they use to transition their patients with ASD to an adult provider. Five interventions or strategies are currently being used. These include providing families with written medical summaries to give to adult providers, compiling lists of available adult providers or community resources, coordinating care and communication between individual pediatric and adult providers, making transition-specific appointments, and using checklists to track transition progress. Other interventions or strategies were identified as needed but not currently in practice, and these focused on education and training. For example, informational workshops were suggested to train families and youth about transition. Training adult providers and medical students was also seen as important. Several respondents additionally identified the need for a transition center where all services could be coordinated in one place. With large numbers of youth with ASD becoming young adults, it seems that pediatric practices might want to consider some of the activities described here. Some of these activities, such as family educational seminars and written medical summaries, are likely relatively easy for a practice to implement. [ABSTRACT FROM PUBLISHER]

Background Public involvement in health-care policy has been advocated as a means to enhance health system responsiveness, yet evidence for its impact has been difficult to ascertain. Objectives To review the peer-reviewed empirical evidence on outcomes of public involvement in health-care policy. Methods We systematically searched Psych INFO and PubMed from November 2000 to April 2010 for empirical studies that reported on original research only; studies in languages other than English, German or French were excluded. Data were extracted using a standardized evidence table with a priori determined headings. Main results Nineteen studies were identified as eligible for inclusion in our review. We found that sound empirical evidence of the outcomes of public involvement activities in health care remains underdeveloped. The concept and the indicators used to examine and determine outcomes remain poorly specified and inconsistent, as does the reporting of the evidence. There was some evidence for the developmental role of public involvement, such as enhancing awareness, understanding and competencies among lay participants. Evidence for instrumental benefits of public involvement initiatives was less well documented. Conclusions Despite the growing body of work on public involvement in health-care policy, evidence of its impact remains scarce; thus, firm conclusions about involvement activities that are appropriate and effective for policy development are difficult to draw. However, focus on outcomes risks missing the normative argument that involving the public in the health-care policy process may be seen to be of intrinsic value. [ABSTRACT FROM AUTHOR]