Psychological Distress and Behavioural Changes in Pregnant and Postpartum Individuals During the COVID-19 Pandemic.

OBJECTIVES: To determine the psychological and behavioural effects of the COVID-19 pandemic on a Canadian cohort of individuals during pregnancy and the postpartum period. METHODS: In 2020, individuals between 20 weeks gestation and 3 months postpartum receiving maternity care from an urban Canadian clinic were invited to complete a questionnaire. The purpose-built questionnaire used validated scales including the Medical Outcomes Study Social Support Survey (MOS), Depression, Anxiety, and Stress Scale (DASS-21), Edinburgh Postnatal Depression Scale (EPDS), and questions from a SARS study. RESULTS: One hundred nine people completed the questionnaire (response rate, 55%) of whom 57% (n = 62) were postpartum. Most respondents (107, 98%) were married and had completed post-secondary education (104, 95%). Despite these protective factors, moderate to severe levels of depression (22%), anxiety (19%) and stress (27%), were recorded using the DASS-21, and 25% of participants (26) had depression (score ≥11) using the EPDS. Despite high social support in all MOS domains (median scores 84-100), a majority of participants reported loneliness (69, 67%) and were nearly or totally housebound (65, 64%). About half of participants worried about themselves (50, 46.3%) or their baby (59, 54%) contracting COVID-19, while the majority postponed (80, 74.1%) and cancelled (79, 73.2%) prenatal appointments. Being homebound or feeling lonely / lacking support were significant risk factors for psychological distress (P = 0.02) whereas exercise and strong social support were protective (P < 0.05). CONCLUSION: Pregnant and postpartum individuals experienced moderate to severe depression, anxiety, and stress during the COVID-19 pandemic. Exercise and strong social support were protective. Health care provider enquiry of home circumstances and activity may identify individuals needing enhanced supports.

Pregnant during the COVID-19 pandemic: an exploration of patients' lived experiences.

BACKGROUND: Infectious outbreaks are known to cause fear and panic. Exploration of pregnant individuals' psychosocial condition using a qualitative lens during an infectious outbreak is limited. In this study we explore pregnant individuals' lived experiences as well as their psychological and behavioural responses during COVID-19 with the goal of providing useful strategies from the patient's perspective to enable health care providers to help pregnant patients navigate this and future pandemics. METHODS: Pregnant individuals between 20-weeks gestation and 3 months postpartum who received maternity care from an urban academic interprofessional teaching unit in Toronto, Canada were invited to participate. Semi-structured 60 min interviews were audio-recorded, transcribed and analyzed using descriptive thematic analysis. Interview questions probed psychological responses to the pandemic, behavioural and lifestyle changes, strategies to mitigate distress while pregnant during COVID-19 and advice for other patients and the healthcare team. RESULTS: There were 12 participants, mean age 35 years (range 30-43 years), all 1 to 6 months postpartum. Six main themes emerged: 1) Childbearing-related challenges to everyday life; 2) Increased worry, uncertainty and fear; 3) Pervasive sense of loss; 4) Challenges accessing care; 5) Strategies for coping with pandemic stress; 6) Reflections and advice to other pregnant people and health care professionals. Pregnant individuals described lack of social support due to COVID-19 pandemic restrictions and a profound sense of loss of what they thought their pregnancy and postpartum period should have been. Advice to healthcare providers included providing mental health support, clear and up to date communication as well as more postpartum and breastfeeding support. CONCLUSIONS: These participants described experiencing psychosocial distress during their pregnancies and postpartum. In a stressful situation such as a global pandemic, health care providers need to play a pivotal role to ensure pregnant individuals feel supported and receive consistent care throughout the pregnancy and postpartum period. The health care provider should ensure that mental health concerns are addressed and provide postpartum and breastfeeding support. Without addressing this need for support, parental mental health, relationships, parent-infant bonding, and infant development may be negatively impacted.

Primary care providers' role in newborn screening result notification for cystic fibrosis.

OBJECTIVE: To explore primary care providers' (PCPs') role in result notification for newborn screening (NBS) for cystic fibrosis (CF), given that expanded NBS has increased the number of positive screening test results, drawing attention to the role of PCPs in supporting families. DESIGN: Cross-sectional survey and qualitative interviews. SETTING: Ontario. PARTICIPANTS: Primary care providers (FPs, pediatricians, and midwives) who received a positive CF NBS result for an infant in their practice in the 6 months before the study. MAIN OUTCOME MEASURES: Whether the PCP notified the family of the initial positive CF screening result. RESULTS: Data from 321 PCP surveys (response rate of 51%) are reported, including 208 FPs, 68 pediatricians, and 45 midwives. Interviews were completed with 34 PCPs. Most (65%) surveyed PCPs reported notifying the infant's family of the initial positive screening result; 81% agreed that they have an important role to play in NBS; and 88% said it was important for PCPs, rather than the NBS centre, to notify families of initial positive results. With support and information from NBS centres, 68% would be extremely or very confident in doing so; this dropped to 54% when reflecting on their recent reporting experience. More than half (58%) of all PCPs said written point-of-care information from the NBS centre was the most helpful format. Adjusted for relevant factors, written educational information was associated with a lower rate of notifying families than written plus verbal information (risk ratio of 0.79; 95% CI 0.69 to 0.92). In the interviews, PCPs emphasized the challenge of balancing required content knowledge with the desire for the news to come from a familiar provider. CONCLUSION: Most PCPs notify families of NBS results and value this role. These data are relevant as NBS programs and other genomic services expand and consider ways of keeping PCPs confident and actively involved.

Newborn screening for cystic fibrosis: Role of primary care providers in caring for infants with positive screening results.

OBJECTIVE: To explore primary care providers' (PCPs') preferred roles and confidence in caring for infants receiving a positive cystic fibrosis (CF) newborn screening (NBS) result, as well as management of CF family planning issues, given that expanded NBS has resulted in an increase in positive results. DESIGN: Mailed questionnaire. SETTING: Ontario. PARTICIPANTS: Ontario FPs, pediatricians, and midwives identified by Newborn Screening Ontario as having had an infant with a positive CF NBS result in their practice in the previous 6 months. MAIN OUTCOME MEASURE: Primary care providers' preferred roles in providing well-baby care for infants with positive CF screening results. RESULTS: Overall, 321 of 628 (51%) completed surveys (208 FPs, 68 pediatricians, 45 midwives). For well-baby care for infants confirmed to have CF, 77% of PCPs indicated they would not provide total care (ie, 68% would share care with other specialists and 9% would refer to specialists completely); for infants with an inconclusive CF diagnosis, 50% of PCPs would provide total care, 45% would provide shared care, and 5% would refer to a specialist; for CF carriers, 89% of PCPs would provide total care, 9% would provide shared care, and 2% would refer. Half (54%) of PCPs were extremely or very confident in providing reassurance about CF carriers' health. Only 25% knew how to order parents' CF carrier testing; 67% knew how to refer for prenatal diagnosis. Confidence in reassuring parents about the health of CF carrier children was associated with providing total well-baby care for CF carriers (risk ratio of 1.50; 95% CI 1.14 to 1.97) and infants with an inconclusive diagnosis (risk ratio of 3.30; 95% CI 1.34 to 8.16). CONCLUSION: Most PCPs indicated willingness to treat infants with a range of CF NBS results in some capacity. It is concerning that some indicated CF carriers should have specialist involvement and only half were extremely or very confident about reassuring families about carrier status. This raises issues about possible medicalization of those with carrier status, prompting the need for PCP education about genetic disorders and the meaning of genetic test results.

How Procurement Judges The Value of Medical Technologies: A Review of Healthcare Tenders.

OBJECTIVES: Procurement's important role in healthcare decision making has encouraged criticism and calls for greater collaboration with health technology assessment (HTA), and necessitates detailed analysis of how procurement approaches the decision task. METHODS: We reviewed tender documents that solicit medical technologies for patient care in Canada, focusing on request for proposal (RFP) tenders that assess quality and cost, supplemented by a census of all tender types. We extracted data to assess (i) use of group purchasing organizations (GPOs) as buyers, (ii) evaluation criteria and rubrics, and (iii) contract terms, as indicators of supplier type and market conditions. RESULTS: GPOs were dominant buyers for RFPs (54/97) and all tender types (120/226), and RFPs were the most common tender (92/226), with few price-only tenders (11/226). Evaluation criteria for quality were technical, including clinical or material specifications, as well as vendor experience and qualifications; "total cost" was frequently referenced (83/97), but inconsistently used. The most common (47/97) evaluative rubric was summed scores, or summed scores after excluding those below a mandatory minimum (22/97), with majority weight (64.1 percent, 62.9 percent) assigned to quality criteria. Where specified, expected contract lengths with successful suppliers were high (mean, 3.93 years; average renewal, 2.14 years), and most buyers (37/42) expected to award to a single supplier. CONCLUSIONS: Procurement's evaluative approach is distinctive. While aiming to go beyond price in the acquisition of most medical technologies, it adopts a narrow approach to assessing quality and costs, but also attends to factors little considered by HTA, suggesting opportunities for mutual lesson learning.

Psychosocial Response to Uncertain Newborn Screening Results for Cystic Fibrosis.

OBJECTIVE: To explore the psychosocial implications of diagnostic uncertainty that result from inconclusive results generated by newborn bloodspot screening (NBS) for cystic fibrosis (CF). STUDY DESIGN: Using a mixed methods prospective cohort study of children who received NBS for CF, we compared psychosocial outcomes of parents whose children who received persistently inconclusive results with those whose children received true positive or screen-negative results. RESULTS: Mothers of infants who received inconclusive results (n = 17), diagnoses of CF (n = 15), and screen-negative results (n = 411) were surveyed; 23 parent interviews were completed. Compared with mothers of infants with true positive/screen-negative results, mothers of infants with inconclusive results reported greater perceived uncertainty (P < .006) but no differences in anxiety or vulnerability (P > .05). Qualitatively, parents valued being connected to experts but struggled with the meaning of an uncertain diagnosis, worried about their infant's health-related vulnerability, and had mixed views about surveillance. CONCLUSION: Inconclusive CF NBS results were not associated with anxiety or vulnerability but led to health-related uncertainty and qualitative concerns. Findings should be considered alongside efforts to optimize protocols for CF screening and surveillance. Educational and psychosocial supports are warranted for these families.

Expectations and values about expanded newborn screening: a public engagement study.

OBJECTIVES: Newborn bloodspot screening (NBS) panels have expanded to include conditions for which treatment effects are less certain, creating debate about population-based screening criteria. We investigated Canadian public expectations and values regarding the types of conditions that should be included in NBS and whether parents should provide consent. METHODS: Eight focus groups (FG; n = 60) included education, deliberative discussion and pre-/post-questionnaires. Data were analysed quantitatively and qualitatively. RESULTS: Quantitatively, the majority supported NBS for serious disorders for which treatment is not available (95-98, 82%). A majority endorsed screening without explicit consent (77-88%) for treatable disorders, but 62% supported unpressured choice for screening for untreatable disorders. Qualitatively, participants valued treatment-related benefits for infants and informational benefits for families. Concern for anxiety, stigma and unwanted knowledge depended upon disease context and strength of countervailing benefits. CONCLUSIONS: Anticipated benefits of expanded infant screening were prioritized over harms, with information provision perceived as a mechanism for mitigating harms and enabling choice. However, we urge caution around the potential for public enthusiasm to foster unlimited uptake of infant screening technologies.

A scoping review of medical education research in family medicine.

BACKGROUND: Little is known about the state of education research within family medicine. As family medicine education models develop, it is important to develop an understanding of the current state of this research and develop ways to advance the field. METHODS: We conducted a scoping review of family medicine education research to describe 1) research topic areas and 2) the methodologies and methods used to study these topics. MEDLINE, Social Sciences Abstracts and ERIC electronic databases were searched. 817 full text articles from 2002 to 2012 were screened; 624 articles were included in the review. RESULTS: The following research topic areas were identified: continuing education, curriculum development, undergraduate education, teaching methods, assessment techniques, selection of entrants, non-clinical skills, professional and faculty development, clinical decision-making and resident well-being. Quantitative studies comprised the large majority of research approaches; overall minimal methodological details were provided. CONCLUSIONS: Our review highlights an overall need for increased sophisticated in methodological approaches to education research in family medicine, a problem that could be ameliorated by multiple strategies including better engagement of methodologists throughout the research process. The results provide guidance for future family medicine education research programs.

Genomic testing in cancer: patient knowledge, attitudes, and expectations.

BACKGROUND: Genomic testing in cancer (GTC) characterizes genes that play an important role in the development and growth of a patient's cancer. This form of DNA testing is currently being studied for its ability to guide cancer therapy. The objective of the current study was to describe patients' knowledge, attitudes, and expectations toward GTC. METHODS: A 42-item self-administered GTC questionnaire was developed by a multidisciplinary group and patient pretesting. The questionnaire was distributed to patients with advanced cancer who were referred to the Princess Margaret Cancer Center for a phase 1 clinical trial or GTC testing. RESULTS: Results were reported from 98 patients with advanced cancer, representing 66% of the patients surveyed. Seventy-six percent of patients were interested in learning more about GTC, and 64% reported that GTC would significantly improve their cancer care. The median score on a 12-item questionnaire to assess knowledge of cancer genomics was 8 of 12 items correct (67%; interquartile range, 7-9 of 12 items correct [58%-75%]). Scores were associated significantly with patients' education level (P < .0001). Sixty-six percent of patients would consent to a needle biopsy, and 39% would consent to an invasive surgical biopsy if required for GTC. Only 48% of patients reported having sufficient knowledge to make an informed decision to pursue GTC whereas 34% of patients indicated a need for formal genetic counseling. CONCLUSIONS: Patients with advanced cancer are motivated to participate in GTC. Patients require further education to understand the difference between somatic and germline mutations in the context of GTC. Educational programs are needed to support patients interested in pursuing GTC.

Conversation for change: engaging older adults as partners in research on gerotechnology.

There is increasing research and public policy investment in the development of technologies to support healthy aging and age-friendly services in Canada. Yet adoption and use of technologies by older adults is limited and rates of abandonment remain high. In response to this, there is growing interest within the field of gerotechnology in fostering greater participation of older adults in research and design. The nature of participation ranges from passive information gathering to more active involvement in research activities, such as those informed by participatory design or participatory action research (PAR). However, participatory approaches are rare with identified barriers including ageism and ableism. This stigma contributes to the limited involvement of older adults in gerotechnology research and design, which in turn reinforces negative stereotypes, such as lack of ability and interest in technology. While the full involvement of older adults in gerotechnology remains rare, the Older Adults' Active Involvement in Ageing & Technology Research and Development (OA-INVOLVE) project aims to develop models of best practice for engaging older adults in these research projects. In this comment paper, we employ an unconventional, conversational-style format between academic researchers and older adult research contributors to provide new perspectives, understandings, and insights into: (i) motivations to engage in participatory research; (ii) understandings of roles and expectations as research contributors; (iii) challenges encountered in contributing to gerotechnology research; (iv) perceived benefits of participation; and (v) advice for academic researchers.

More investments are being made to develop technologies that support healthy aging and age-friendly services in Canada. However, not many older adults use these technologies and those who do tend to stop using them after some time. Gerotechnology is a field of study that combines an interest in gerontology and technology. Within gerotechnology, researchers are learning more about how to encourage older adults to participate in research and the design of new technologies. There are different ways that older adults participate in gerotechnology research, with some approaches being more passive than others. In participatory design and participatory action research projects older adults are encouraged to engage more actively as co-researchers. However, researchers have found that there are some limitations to engaging older adults actively in research, including ageism and ableism, meaning that older adults are perceived to be capable of contributing based on their age and cognitive or physical abilities. These stereotypes have limited how often and how much older adults actually contribute to technology research and design. The Older Adults' Active Involvement in Aging & Technology Research and Development (OA-INVOLVE) project aims to address these gaps. In this comment paper, we present a conversation between academic and older adult researchers who have contributed to OA-INVOLVE. The goal of this conversation is to explore together: (i) motivations to engage in participatory research; (ii) understandings of roles and expectations as research contributors; (iii) challenges encountered in contributing to gerotechnology research; (iv) perceived benefits of participation; and (v) advice for academic researchers.

Does a duty of disclosure foster special treatment of genetic research participants?

The principle that research participants not receive enhanced care compared to non-participants may be challenged by a duty to disclose genetic research results, especially where care is otherwise inaccessible. Autism researchers' attitudes toward providing enhanced care to study participants were analyzed quantitatively using descriptive and multivariate analyses of survey data and qualitatively through thematic analysis of interview data. Approximately half of survey respondents (n = 168, RR = 44 %) agreed they should provide additional knowledge (52 %) or services (48 %) to study participants that may not be available to non-participants. Qualitatively (n = 23), respondents were motivated by the notion of reciprocity but highlighted tensions when research enables access to expertise and therapeutic resources that are otherwise difficult to obtain. For researchers, feeling obliged to report research results may be in conflict with the obligation to avoid special treatment of research participants; this may in turn threaten principles of voluntariness, autonomy, and justice.

Primary care role in expanded newborn screening: After the heel prick test.

OBJECTIVE: To examine the role of primary care providers in informing and supporting families who receive positive screening results. DESIGN: Cross-sectional survey. SETTING: Ontario. PARTICIPANTS: Family physicians, pediatricians, and midwives involved in newborn care. MAIN OUTCOME MEASURES: Beliefs, practices, and barriers related to providing information to families who receive positive screening results for their newborns. RESULTS: A total of 819 providers participated (adjusted response rate of 60.9%). Of the respondents, 67.4% to 81.0% agreed that it was their responsibility to provide care to families of newborns who received positive screening results, and 64.2% to 84.8% agreed they should provide brochures or engage in general discussions about the identified conditions. Of the pediatricians, 67.3% endorsed having detailed discussions with families, but only 24.1% of family physicians and 27.6% of midwives endorsed this practice. All provider groups reported less involvement in information provision than they believed they should have. This discrepancy was most evident for family physicians: most stated that they should provide brochures (64.2%) or engage in general discussions (73.5%), but only a minority did so (15.3% and 27.7%, respectively). Family physicians reported insufficient time (42.2%), compensation (52.2%), and training (72.3%) to play this role, and only a minority agreed they were up to date (18.5%) or confident (16.5%) regarding newborn screening. CONCLUSION: Providers of primary newborn care see an information-provision role for themselves in caring for families who receive positive newborn screening results. Efforts to further define the scope of this role combined with efforts to mitigate existing barriers are warranted.

Grief and bereavement of family and friends around medical assistance in dying: scoping review.

OBJECTIVES: The increase in the number of jurisdictions legalising medical assistance in dying (MAiD) has contributed to a growth in the number of family and friends who may face unique elements of grief and bereavement. The aim of this study was to review the literature of grief and bereavement of family and friends following MAiD, and to summarise findings for the development of community resources and programming. METHODS: We performed a scoping review with workshop consultation of stakeholders. Six electronic databases and the grey literature were searched for qualitative, quantitative and review articles. Content-analytical techniques and multidisciplinary discussions led to the development of concepts and a conceptual framework. RESULTS: Twenty-eight articles met the inclusion criteria. We identified five concepts that impact the grief and bereavement of family/friends: relationships between family/friends and the patient as well as healthcare providers; aspects of MAiD grief which can include secrecy and/or anticipatory grief; preparations which may include family/friends and should be centralised and harmonised; end of life as an opportunity for ceremony; and the aftereffects during which mental health outcomes are studied. CONCLUSION: This multidisciplinary scoping review incorporates stakeholder consultation to find that support is needed to address the complicated and changing emotions of family/friends before, during and after a MAiD death. Furthermore, additional societal normalisation of MAiD is necessary to reduce secrecy and stigma and improve the accessibility of resources for family/friends.

What does 'respect for persons' require? Attitudes and reported practices of genetics researchers in informing research participants about research.

BACKGROUND: It has been suggested that researchers are obliged to offer summary findings to research participants to demonstrate respect for persons, and that this may increase public trust in, and awareness of, the research enterprise. Yet little research explores researchers' attitudes and practices regarding the range of initiatives that might serve these ends. METHODS: Results of an international survey of 785 eligible authors of genetics research studies in autism or cystic fibrosis are reported. RESULTS: Of 343 researchers who completed the survey (44% response rate), the majority agreed that their team should (i) inform participants of summary findings (90.7%) and (ii) ensure they gain an awareness of developments in the field (86.9%). Additionally, the majority reported that in practice, their team (i) informs participants of summary findings (69.4%) and (ii) provides other types of relevant non-results information (eg, state of science in the field, opportunities for research participation) (67.9%). CONCLUSION: Researchers endorsed the obligation of communicating with research participants by providing summary findings and other research-related information in equal measure. In light of these findings, it is suggested that while the provision of summary results may contribute to efforts to discharge the obligation of respect for persons, it may be neither a necessary nor a sufficient means to this end.

Differing Conceptualizations of the Goals of Care Discussion: A Critical Discourse Analysis.

CONTEXT: The goals of care discussion (GOCD) has been positioned as an improvement strategy to address discordance between care decisions made by seriously ill patients and care received. Interventions aimed at improving GOCDs however have had limited success. This may in part be due to the considerable variation in views on the essential components and expected outcomes of a GOCD. This variability, and consequently clinical approaches to GOCDs, may reflect fundamental differences in how the GOCD is conceptualized. OBJECTIVE: To identify and characterize differing conceptualizations of the GOCD. METHODS: Critical discourse analysis was used to qualitatively examine GOCDs documented for inpatients of 35 Canadian palliative medicine (PM), critical care medicine (CCM) and general internal medicine (GIM) physicians. Patterns in the ways the GOCD had been constructed were characterized by identifying different aspects of the approaches used by clinicians. RESULTS: GOCD notes varied in the predominant style and tone (from narrative to biomedical), predominant information source (patient/family to physician), and contribution of the patient's perspective. Notably binary differences were also found in the locus of goals and located either with the patient or with the broad concept of treatments. Although not exclusively, locus of goals tended to be with the patient among PM physicians and with treatments among CCM and GIM physicians. CONCLUSION: These findings offer clinical evidence for differing conceptualizations of the GOCD and orientations to goals as either person-centered or treatment-centered. This phenomenon may be in part discipline-based and has important implications for both clinical practice and training experiences.

The primary care physician role in cancer genetics: a qualitative study of patient experience.

BACKGROUND: Increased availability of genetic testing is changing the primary care role in cancer genetics. The perspective of primary care physicians (PCPs) regarding their role in support of genetic testing has been explored, but little is known about the expectations of patients or the PCP role once genetic test results are received. METHODS: Two sets of open-ended semi-structured interviews were completed with patients (N=25) in a cancer genetic programme in Ontario, Canada, within 4 months of receiving genetic test results and 1 year later; written reports of test results were collected. RESULTS: Patients expected PCPs to play a role in referral for genetic testing; they hoped that PCPs would have sufficient knowledge to appreciate familial risk and supportive attitudes towards genetic testing. Patients had more difficulty in identifying a PCP role following receipt of genetic test results; cancer patients in particular emphasized this as a role for cancer specialists. Still, some patients anticipated an ongoing PCP role comprising risk-appropriate surveillance or reassurance, especially as specialist care diminished. These expectations were complicated by occasional confusion regarding the ongoing care appropriate to genetic test results. CONCLUSIONS: The potential PCP role in cancer genetics is quite broad. Patients expect PCPs to play a role in risk identification and genetics referral. In addition, some patients anticipated an ongoing role for their PCPs after receiving genetic test results. Sustained efforts will be needed to support PCPs in this expansive role if best use is to be made of investments in cancer genetic services.

Modes of coordination for health technology adoption: Health Technology Assessment agencies and Group Procurement Organizations in a polycentric regulatory regime.

The challenge of novel and high cost health technologies has encouraged the growth of regulatory agencies such as Health Technology Assessment (HTA) organizations and Group Procurement Organizations (GPO). Yet the existence of several agencies in the same polycentric regulatory regime raises questions about whether and how their work can be coordinated. Drawing on a case study of GPOs and HTA agencies across four provinces in Canada, involving document review and key informant interviews (n = 44) conducted between 2013 and 2016, we explore the separate evolution of these agencies, emerging connections between them for non-drug technologies, and the organizational processes and evaluative judgments that underpin coordination efforts. HTA agencies and GPOs developed separately; connections emerged recently in three provinces and suggest four modes of coordination. One mode aligns most closely with that recommended by health economists and HTA practitioners, whereby HTA precedes procurement, with coverage decisions informing technology acquisition. The second mode is a version of the first, where procurement refers cases to HTA for coverage or technology management support; unlike the first, it recognizes procurement's evaluative strengths. Yet both the first and second modes focus on exceptional cases and will be infrequent. The third mode is more systemic, reflecting a generalized complementary of purpose as public agencies. HTA could support GPOs in contested technology acquisition efforts through timely and responsive input, while procurement could expand HTA's impact and inform HTA's growing interest in responsible innovation and environmental sustainability. The final mode is non-coordination, reflecting the potential for agencies to occupy quite distinct regulatory niches within the same regime. We conclude that consistency and convergence around a single model of resource allocation is not inevitable; nor is it necessary for coordinated effort. Thus, where differences in regulatory practice and epistemology persist, mutual accommodation and shared learning may prove most productive.

Interoperable Electronic Health Records and Health Information Exchanges: Systematic Review.

BACKGROUND: As the availability of interoperable electronic health records (iEHRs) or health information exchanges (HIEs) continues to increase, there is greater need and opportunity to assess the current evidence base on what works and what does not regarding the adoption, use, and impact of iEHRs. OBJECTIVE: The purpose of this project is to assess the international evidence base on the adoption, use, and impact of iEHRs. METHODS: We conducted a systematic review, searching multiple databases-MEDLINE, Embase, and the Cumulative Index to Nursing and Allied Health Literature (CINAHL)-with supplemental searches conducted in Google Scholar and grey literature sources (ie, Google, Grey Literature Report, and OpenGrey). All searches were conducted in January and February 2017. Articles were eligible for inclusion if they were published in English, were published from 2006 to 2017, and were either an original research study or a literature review. In order to be included, articles needed to focus on iEHRs and HIEs across multiple health care settings, as well as on the impact and effectiveness of iEHR adoption and use. RESULTS: We included 130 articles in the synthesis (113 primary studies, 86.9%; 17 reviews, 13.1%), with the majority focused on the United States (88/130, 67.7%). The primary studies focused on a wide range of health care settings; the three most prevalent settings studied included acute care (59/113, 52.2%), primary care (44/113, 38.9%), and emergency departments (34/113, 30.1%). We identified 29 distinct measurement items in the 113 primary studies that were linked to 522 specific measurement outcomes. Productivity and quality were the two evaluation dimensions that received the most attention, accounting for 14 of 29 (48%) measurement items and 306 of 522 (58.6%) measurement outcomes identified. Overall, the majority of the 522 measurement outcomes were positive (298/522, 57.1%). We also identified 17 reviews on iEHR use and impact, 6 (35%) that focused on barriers and facilitators to adoption and implementation and 11 (65%) that focused on benefits and impacts, with the more recent reviews finding little generalizable evidence of benefit and impact. CONCLUSIONS: This review captures the status of an evolving and active field focused on the use and impact of iEHRs. While the overall findings suggest many positive impacts, the quality of the primary studies were not evaluated systematically. When broken down by specific measurement item, the results directed attention both to measurement outcomes that were consistently positive and others that were mostly negative or equivocal.

A scoping review of online repositories of quality improvement projects, interventions and initiatives in healthcare.

BACKGROUND: Quality improvement (QI) is becoming an important focal point for health systems. There is increasing interest among health system stakeholders to learn from and share experiences on the use of QI methods and approaches in their work. Yet there are few easily accessible, online repositories dedicated to documenting QI activity. METHODS: We conducted a scoping review of publicly available, web-based QI repositories to (i) identify current approaches to sharing information on QI practices; (ii) categorise these approaches based on hosting, scope and size, content acquisition and eligibility, content format and search, and evaluation and engagement characteristics; and (iii) review evaluations of the design, usefulness and impact of their online QI practice repositories. The search strategy consisted of traditional database and grey literature searches, as well as expert consultation, with the ultimate aim of identifying and describing QI repositories of practices undertaken in a healthcare context. RESULTS: We identified 13 QI repositories and found substantial variation across the five categories. The QI repositories used different terminology (eg, practices vs case studies) and approaches to content acquisition, and varied in terms of primary areas of focus. All provided some means for organising content according to categories or themes and most provided at least rudimentary keyword search functionality. Notably, none of the QI repositories included evaluations of their impact. DISCUSSION: With growing interest in sharing and spreading best practices and increasing reliance on QI as a key contributor to health system performance, the role of QI repositories is likely to expand. Designing future QI repositories based on knowledge of the range and type of features available is an important starting point for improving their usefulness and impact.

Parent Experience With False-Positive Newborn Screening Results for Cystic Fibrosis.

BACKGROUND: The risk of psychosocial harm in families of infants with false-positive (FP) newborn bloodspot screening (NBS) results for cystic fibrosis (CF) is a longstanding concern. Whether well designed retrieval and confirmatory testing systems can mitigate risks remains unknown. METHODS: Using a mixed-methods cohort design, we obtained prospective self-report data from mothers of infants with FP CF NBS results 2 to 3 months after confirmatory testing at Ontario's largest follow-up center, and from a randomly selected control sample of mothers of screen negative infants from the same region. Mothers completed a questionnaire assessing experience and psychosocial response. A sample of mothers of FP infants completed qualitative interviews. RESULTS: One hundred thirty-four mothers of FP infants (response rate, 55%) and 411 controls (response rate, 47%) completed questionnaires; 54 mothers of FP infants were interviewed. Selected psychosocial response measures did not detect psychosocial distress in newborns or 1 year later (P > .05). Mothers recalled distress during notification of the positive result and in the follow-up testing period related to fear of chronic illness, but valued the screening system of care in mitigating concerns. CONCLUSIONS: Although immediate distress was reported among mothers of FP infants, selected psychometric tools did not detect these concerns. The NBS center from which mothers were recruited minimizes delay between notification and confirmatory testing and ensures trained professionals are communicating results and facilitating follow-up. These factors may explain the presence of minimal psychosocial burden. The screening system reflected herein may be a model for NBS programs working to minimize FP-related psychosocial harm.