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Objective: To use patient-guided tours to gain insight into the experiences of patients with disabilities receiving primary care, with the goal of suggesting improvements., Design: A qualitative experience-based design study, using patient-guided tours., Setting: Multidisciplinary academic urban primary care practice., Participants: Patients with disabilities identified by their health care providers., Methods: Patients walked through the clinic as they would on a "typical visit" describing their feelings and experiences. The investigator used a semistructured interview guide to prompt the patient. The tour was audiorecorded and transcribed. Thematic content analysis was used., Main Findings: Participants included 18 patients with various disabilities (physical disability, sensory disability, chronic illness, mental illness, learning disability, developmental disability). Strong positive relationships, particularly with the team and administrative staff, profoundly affected perceived access and experience of care. Multidirectional, clear, and respectful communication independently improved patients' experiences dramatically. Participants said that many access, coordination, and physical barriers were eased by team relationships and communication. Physical space and building issues were troublesome for those with physical and mental disabilities alike. Each participant's disability itself played a role in their experience but was not described as prominently as their relationship, communication, and spatial challenges. Participants described the patient-guided tour method as valuable to elicit experiences and feelings., Conclusion: Some health care teams are unaware of how relationships and communication affect every aspect of health care for people with disabilities. Highlighting these findings with providers and organizations might prompt a more patient-centred model of care. Our experience-based design consisting of patient-guided tours was effective in assessing how those with disabilities experienced care., (Copyright © the College of Family Physicians of Canada.)

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., (Copyright © the College of Family Physicians of Canada.)

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., (Copyright © the College of Family Physicians of Canada.)

Objective: To assess the proportion of primary care patients who report a family history (FH) of type 2 diabetes, coronary artery disease, breast cancer, or colorectal cancer (CRC); assess concordance of FH information derived from the electronic medical record (EMR) compared with patient-completed health questionnaires; and assess whether appropriate screening was informed by risk based solely on FH., Design: Data from the BETTER (Building on Existing Tools to Improve Chronic Disease Prevention and Screening in Primary Care) trial were used. Patients were mailed questionnaires. Baseline FH and screening data were obtained for enrolled patients from the EMR and health questionnaires., Setting: Ontario and Alberta., Participants: Randomly selected patients from 8 family practices., Main Outcome Measures: Agreement on FH between the EMR and questionnaire was determined; logistic regression was used to assess significant predictors of screening., Results: In total, 775 of 789 (98%) patients completed the health questionnaire. The mean age of participants was 52.5 years and 72% were female. A minimum of 12% of patients (range 12% to 36%) had a reported FH of 1 of 4 chronic diseases. Among patients with positive FH, the following proportions of patients had that FH recorded in the EMR compared with the questionnaire: diabetes, 24% in the EMR versus 36% on the questionnaire, κ = 0.466; coronary artery disease, 35% in the EMR versus 22% on the questionnaire, κ = 0.225; breast cancer, 21% in the EMR versus 22% on the questionnaire, κ = 0.241; and CRC, 12% in the EMR versus 14% on the questionnaire, κ = 0.510. There was moderate agreement for diabetes and CRC. The presence of FH was a significant predictor of CRC screening (odds ratio 1.9, 95% CI 1.1 to 3.1)., Conclusion: A moderate prevalence of FH was found for 4 conditions for which screening recommendations vary with risk based on FH. Having patients self-complete an FH was thought to be feasible; however, questions about FH accuracy and completeness from both self-report and EMR remain. Work is needed to determine how to facilitate the adoption of FH tools into practice as well as strategies linking familial risk to appropriate screening.Trial registration number ISRCTN07170460 (ISRCTN Registry)., (Copyright© the College of Family Physicians of Canada.)

Objective: To explore health care provider (HCP) perspectives on the coordination of cancer care between FPs and cancer specialists., Design: Qualitative study using semistructured telephone interviews., Setting: Canada., Participants: A total of 58 HCPs, comprising 21 FPs, 15 surgeons, 12 medical oncologists, 6 radiation oncologists, and 4 GPs in oncology., Methods: This qualitative study is nested within a larger mixed-methods program of research, CanIMPACT (Canadian Team to Improve Community-Based Cancer Care along the Continuum), focused on improving the coordination of cancer care between FPs and cancer specialists. Using a constructivist grounded theory approach, telephone interviews were conducted with HCPs involved in cancer care. Invitations to participate were sent to a purposive sample of HCPs based on medical specialty, sex, province or territory, and geographic location (urban or rural). A coding schema was developed by 4 team members; subsequently, 1 team member coded the remaining transcripts. The resulting themes were reviewed by the entire team and a summary of results was mailed to participants for review., Main Findings: Communication challenges emerged as the most prominent theme. Five key related subthemes were identified around this core concept that occurred at both system and individual levels. System-level issues included delays in medical transcription, difficulties accessing patient information, and physicians not being copied on all reports. Individual-level issues included the lack of rapport between FPs and cancer specialists, and the lack of clearly defined and broadly communicated roles., Conclusion: Effective and timely communication of medical information, as well as clearly defined roles for each provider, are essential to good coordination of care along the cancer care trajectory, particularly during transitions of care between cancer specialist and FP care. Despite advances in technology, substantial communication challenges still exist. This can lead to serious consequences that affect clinical decision making., (Copyright© the College of Family Physicians of Canada.)

Objective: To summarize the best evidence on strategies to identify and manage women with a family history of breast cancer., Sources of Information: A PubMed search was conducted using the search terms breast cancer, guidelines, risk, family history, management, and magnetic resonance imaging screening from 2000 to 2016. Most evidence is level II., Main Message: Taking a good family history is essential when assessing breast cancer risk in order to identify women suitable for referral to a genetic counselor for possible genetic testing. Offering risk-reducing surgery (bilateral prophylactic mastectomy, bilateral salpingo-oophorectomy) to women with BRCA genetic mutations can save lives. All women with a family history of breast cancer should be encouraged to stay active and limit alcohol intake to less than 1 drink per day; some will qualify for chemoprevention. Women with a 20% to 25% or greater lifetime risk of breast cancer should be offered enhanced screening with annual magnetic resonance imaging in addition to mammography., Conclusion: Healthy living and chemoprevention (for suitable women) could reduce breast cancer incidence; enhanced screening could result in earlier detection. Referring women who carry BRCA mutations for risk-reducing surgery will save lives., (Copyright© the College of Family Physicians of Canada.)

Objective: To assess primary care providers' (PCPs') experiences with, perceptions of, and desired role in personalized medicine, with a focus on cancer., Design: Qualitative study involving focus groups., Setting: Urban and rural interprofessional primary care team practices in Alberta and Ontario., Participants: Fifty-one PCPs., Methods: Semistructured focus groups were conducted and audiorecorded. Recordings were transcribed and analyzed using techniques informed by grounded theory including coding, interpretations of patterns in the data, and constant comparison., Main Findings: Five focus groups with the 51 participants were conducted; 2 took place in Alberta and 3 in Ontario. Primary care providers described limited experience with personalized medicine, citing breast cancer and prenatal care as main areas of involvement. They expressed concern over their lack of knowledge, in some circumstances relying on personal experiences to inform their attitudes and practice. Participants anticipated an inevitable role in personalized medicine primarily because patients seek and trust their advice; however, there was underlying concern about the magnitude of information and pace of discovery in this area, particularly in direct-to-consumer personal genomic testing. Increased knowledge, closer ties to genetics specialists, and relevant, reliable personalized medicine resources accessible at the point of care were reported as important for successful implementation of personalized medicine., Conclusion: Primary care providers are prepared to discuss personalized medicine, but they require better resources. Models of care that support a more meaningful relationship between PCPs and genetics specialists should be pursued. Continuing education strategies need to address knowledge gaps including direct-to-consumer genetic testing, a relatively new area provoking PCP concern. Primary care providers should be mindful of using personal experiences to guide care., (Copyright© the College of Family Physicians of Canada.)

Objective: To explore patient perspectives on and experiences with the coordination and continuity of cancer care., Design: Qualitative study using semistructured telephone interviews., Setting: Canada., Participants: Thirty-eight breast and colorectal cancer survivors 1 to 4 years after diagnosis., Methods: Using a constructivist grounded theory approach, semistructured telephone interviews were conducted with the participants. The interviews were digitally recorded, transcribed verbatim, and proofread. Transcripts were reviewed to create a focused coding scheme that was used to develop categories for participants' experiences., Main Findings: Although this study focused on the continuity of cancer care, patients described their experiences with cancer care in general, concentrating predominantly on their relationships with individual health care providers (HCPs). Based on patients' experiences, several themes were identified as the core components of providing good continuity and well coordinated care. The most important overarching theme was communication, which overlapped with 4 other themes: patient-HCP relationships, the role of HCPs, lack of access to care, and timely and tailored information., Conclusion: Patients believed that good communication between HCPs and patients was key to improving the overall continuity of cancer care. Continuity of care is an important theoretical concept in cancer care, but it is not easily recognized by patients. They perceive the cancer care continuum and continuity of care as cancer care in general, which is typically framed by the individual relationships with their HCPs. Future research and interventions need to focus on finding and testing ways to improve communication to enhance continuity of cancer care., (Copyright© the College of Family Physicians of Canada.)

Objective: To explore patients' perceptions of primary care (PC) in the early development of academic family health teams (aFHTs)--interprofessional PC teams delivering care where family medicine and other health professional learners are trained--focusing on the 4 core domains of PC., Design: Self-administered survey using the Primary Care Assessment Tool Adult Expanded Version (PCAT), which addresses 4 core domains of PC (first contact, continuity, comprehensiveness, and coordination). The PCAT uses a 4-point Likert scale (from definitely not to definitely) to capture patients' responses about the occurrence of components of care., Setting: Six aFHTs in Ontario., Participants: Adult patients attending appointments and administrators at each of the aFHTs., Main Outcome Measures: Mean PCAT domain scores, with a score of 3 chosen as the minimum expected level of care. Multivariate log binomial regression models were used to estimate the adjusted relative risks of PCAT score levels as functions of patient- and clinic-level characteristics., Results: The response rate was 47.3% (1026 of 2167). The mean age of respondents was 49.6 years, and most respondents were female (71.6%). The overall PC score (2.92) was just below the minimum expected care level. Scores for first contact (2.28 [accessibility]), coordination of information systems (2.67), and comprehensiveness of care (2.83 [service available] and 2.36 [service provided]) were below the minimum. Findings suggest some patient groups might not be optimally served by aFHTs, particularly recent immigrants. Characteristics of aFHTs, including a large number of physicians, were not associated with high performance on PC domains. Distributed practices across multiple sites were negatively associated with high performance for some domains. The presence of electronic medical records was not associated with improved performance on coordination of information systems., Conclusion: Patients of these aFHTs rated several core domains of PC highly, but results indicate room for improvement in several domains, particularly first-contact accessibility. A future study will determine what changes were implemented in these aFHTs and if patient ratings have improved. This reflective process is essential to ensuring that aFHTs provide effective models of PC to learners of all disciplines.

Objective: To explore patients' perceptions of primary care (PC) in the early development of academic family health teams (aFHTs)--interprofessional PC teams delivering care where family medicine and other health professional learners are trained--focusing on patients' perceptions of access and patients' satisfaction with services., Design: Self-administered survey., Setting: Six aFHTs in Ontario., Participants: Adult patients attending appointments and administrators at each of the aFHTs., Main Outcome Measures: Answers to questions about access from the Primary Care Assessment Tool Adult Expanded Version, the Primary Care Assessment Survey, and research team questions., Results: The response rate was 47.3% (1026 of 2167). The mean (SD) Primary Care Assessment Tool first-contact accessibility score was 2.28 (0.36) out of 4, with 96.5% of patients rating access less than 3, which was the minimum expected level of care. Two-thirds (66.6%) indicated someone from their aFHTs would definitely or probably see them the same day if they were sick, 56.8% could definitely or probably get advice quickly by telephone, and 14.5% indicated it was definitely or probably difficult to be seen by their primary health care provider (HCP). Additionally, 46.9% indicated they would like to get medical advice by e-mail. For a routine or follow-up visit, 73.4% would be willing to see another aFHT physician if their regular provider were unavailable, while only 48.3% would see a nonphysician HCP. If sick, 88.2% would see another aFHT physician and 55.2% would see a nonphysician HCP. Most (75.3%) were satisfied with access to their regular HCP., Conclusion: Although patients are generally satisfied with care, there is room for improvement in access. Strategies are needed to enhance access to care, including addressing appropriate roles and scopes of practice for nonphysician HCPs. The accessibility challenges for aFHTs will likely affect new family physicians and other HCPs training in these practices and their approach to future practice.

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.

Objective: To explore views of women and health care providers (HCPs) about the changing recommendations regarding maternal age-based prenatal screening., Design: Mixed-methods design., Setting: Ontario., Participants: A sample of women who had given birth within the previous 2 years and who had attended a family medicine centre, midwifery practice, or baby and mother wellness program (n = 42); and a random sample of family physicians (n = 1600), and all Ontario obstetricians (n = 694) and midwives (n = 334) who provided prenatal care., Methods: We used focus groups (FGs) to explore women's views. Content analysis was used to uncover themes and delineate meaning. To explore HCPs' views, we conducted a cross-sectional self-completion survey., Main Findings: All FG participants (42 women in 6 FGs) expressed the importance of individual choice of prenatal screening modality, regardless of age. They described their perception that society considers women older than 35 to be at high obstetric risk and raised concerns that change in the maternal age-related screening policy would require education. The HCP survey response rate was 40%. Results showed 24% of HCPs agreed that women of any age should be eligible for invasive diagnostic testing regardless of prenatal screening results; 15% agreed that the age for diagnostic testing should be increased to 40 years, 14% agreed that diagnostic testing should be reserved for women with positive prenatal screening results, and 45% agreed that prenatal screening should remain unchanged., Conclusion: Maternity care organizations have recommended that maternal age-based prenatal screening is no longer appropriate. Informed choice is of paramount importance to women and should be part of any change. Health care providers need to be engaged in and educated about any change to screening guidelines to offer women informed choices.

Objective: To increase primary care providers' awareness and use of genetic services; increase their knowledge of genetic issues; increase their confidence in core genetic competencies; change their attitudes toward genetic testing for hereditary diseases; and increase their confidence as primary care genetic resources., Design: Participants completed a workshop and 3 questionnaires: a baseline questionnaire, a survey that provided immediate feedback on the workshop itself, and a follow-up questionnaire 6 months later., Setting: Ontario., Participants: Primary care providers suggested by deans of nursing, midwifery, family medicine, and obstetric programs, as well as coordinators of nurse practitioner programs, in Ontario and by the Ontario College of Family Physicians., Intervention: A complex educational intervention was developed, including an interactive workshop and PowerPoint educational modules on genetic topics for participants' use (available at www.mtsinai.on.ca/FamMedGen/)., Main Outcome Measures: Awareness and use of genetic services, knowledge of genetics, confidence in core clinical genetic skills, attitudes toward genetic testing, and teaching activities related to genetics., Results: The workshop was attended by 29 participants; of those, 21 completed the baseline questionnaire and the 6-month follow-up questionnaire. There was no significant change found in awareness or reported use of genetic services. There was significant improvement in self-assessed knowledge of (P = .001) and confidence in (P = .005) skills related to adult-onset genetic disorders. There were significant increases in confidence in many core genetic competencies, including assessing risk of hereditary disorders (P = .033), deciding who should be offered referral for genetic counseling (P = .003), discussing prenatal testing options (P = .034), discussing benefits, risks, and limitations of genetic testing (P = .033), and describing what to expect at a genetic counseling session (P = .022). There was a significant increase in the number of primary care providers agreeing that genetic testing was beneficial in the management of adult-onset diseases (P = .031) and in their confidence in being primary care genetic resources for adult-onset genetic disorders (P = .006)., Conclusion: Educational interventions that include interactive peer resource workshops and educational modules can increase knowledge of and confidence in the core competencies needed for the delivery of genetic services in primary care.

Objective: To explore family physicians' experiences in dealing with genetic susceptibility to cancer., Design: Qualitative study using focus groups., Setting: Four Ontario sites: northern, rural, urban, and inner city., Participants: Forty rural and urban FPs participated in four focus groups: 28 were male; average age was 41., Method: Focus groups using a semistructured interview guide were audiotaped and transcribed. The constant comparative method of data analysis was used. Key words and concepts were identified. Data were sorted using NUD*IST software., Main Findings: Participants realized the escalating expectations for genetic testing and its effect on family practice. They explored an expanded role for themselves in genetic testing. Possible activities included risk assessment, gatekeeping, and ordering genetic tests. They were concerned about the complexity of genetic testing, the lack of evidence regarding management, and the implications for families., Conclusion: We must help FPs struggling to integrate genetics into their practices, by addressing their concerns, enhancing the way they communicate information on genetics, and developing appropriate educational tools.

Objective: To evaluate an "information aid" for women with a family history of breast cancer., Design: Before-after descriptive study., Setting: Family practices in Ontario., Participants: Of 405 randomly selected Ontario physician members of the College of Family Physician's of Canada's National Research System, 97 agreed to participate and to recruit three consecutive female patients with any family history of breast cancer., Interventions: Patients completed a baseline questionnaire and, after reviewing the information aid, a satisfaction questionnaire. Four weeks later, they completed a third questionnaire., Main Outcome Measures: Patient satisfaction, knowledge, worries related to breast cancer, risk perception, and attitudes toward screening., Results: Of 203 patients recruited, 160 (79%) completed all three questionnaires. The information aid was rated excellent or very good by 91% of the women; 99% would recommend it to other women. Knowledge improved significantly; worry about breast cancer did not increase., Conclusion: The information aid is a useful resource for women and primary care physicians and could facilitate appropriate risk assessment and management of women with a family history of breast cancer.