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  1. Article ; Online: Experiences of patients with a disability in receiving primary health care: Using experience-based design for quality improvement.

    Walji, Sakina / Carroll, June C / Haber, Cleo

    Canadian family physician Medecin de famille canadien

    2021  Volume 67, Issue 7, Page(s) 517–524

    Abstract: 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 ... ...

    Abstract 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.
    MeSH term(s) Disabled Persons ; Health Personnel ; Humans ; Primary Health Care ; Qualitative Research ; Quality Improvement ; Quality of Health Care
    Language English
    Publishing date 2021-07-14
    Publishing country Canada
    Document type Journal Article
    ZDB-ID 603565-6
    ISSN 1715-5258 ; 0008-350X
    ISSN (online) 1715-5258
    ISSN 0008-350X
    DOI 10.46747/cfp.6707517
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  2. Article ; Online: [No title information]

    Heisey, Ruth / Carroll, June C

    Canadian family physician Medecin de famille canadien

    2016  Volume 62, Issue 10, Page(s) e572–e577

    Title translation Identification et prise en charge des femmes ayant des antécédents familiaux de cancer du sein: Guide pratique à l’intention des médecins.
    Language French
    Publishing date 2016-09-01
    Publishing country Canada
    Document type Review ; Journal Article
    ZDB-ID 603565-6
    ISSN 1715-5258 ; 0008-350X
    ISSN (online) 1715-5258
    ISSN 0008-350X
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  3. Article ; Online: Identification and management of women with a family history of breast cancer: Practical guide for clinicians.

    Heisey, Ruth / Carroll, June C

    Canadian family physician Medecin de famille canadien

    2016  Volume 62, Issue 10, Page(s) 799–803

    Abstract: 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, ...

    Abstract 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.
    MeSH term(s) BRCA1 Protein/genetics ; Breast Neoplasms/diagnostic imaging ; Breast Neoplasms/genetics ; Canada ; Early Detection of Cancer/methods ; Female ; Genetic Testing ; Heterozygote ; Humans ; Magnetic Resonance Imaging ; Mammography ; Mass Screening/methods ; Middle Aged ; Mutation ; Practice Guidelines as Topic ; Risk Factors ; Societies, Medical ; United States
    Chemical Substances BRCA1 Protein ; BRCA1 protein, human
    Language English
    Publishing date 2016-10-13
    Publishing country Canada
    Document type Case Reports ; Journal Article ; Review
    ZDB-ID 603565-6
    ISSN 1715-5258 ; 0008-350X
    ISSN (online) 1715-5258
    ISSN 0008-350X
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  4. Article: Anticipating the primary care role in genomic medicine: expectations of genetics health professionals.

    Carroll, June C / Morrison, Shawna / Miller, Fiona A / Wilson, Brenda J / Permaul, Joanne A / Allanson, Judith

    Journal of community genetics

    2021  Volume 12, Issue 4, Page(s) 559–568

    Abstract: Our purpose was to explore genetics health professionals' (GHPs) expectations of primary care providers' (PCPs) role in genomic medicine now and in the future. Focus groups/interviews were conducted with GHPs in Ontario, Canada. Recordings were ... ...

    Abstract Our purpose was to explore genetics health professionals' (GHPs) expectations of primary care providers' (PCPs) role in genomic medicine now and in the future. Focus groups/interviews were conducted with GHPs in Ontario, Canada. Recordings were transcribed and analysed using qualitative descriptive analysis. Five focus groups (6 clinical geneticists, 24 genetic counselors, 1 nurse, 4 laboratory staff, 3 genetics program administrators) and 3 interviews (nurses) were conducted. GHPs described a key role for PCPs in genomic medicine that could be enhanced if GHPs and PCPs worked together more effectively, making better use of GHPs as a scarce specialist resource, improving PCP knowledge and awareness of genomics, and increasing GHPs' understanding of primary care practice and how to provide PCPs meaningful education and support. Health system change is needed to facilitate the GHP/PCP relationship and improve care. This might include: PCPs ordering more genetic tests independently or with GHP guidance prior to GHP consultations, genomic expertise in primary care clinics or GHPs being accessible through buddy systems or virtually through telemedicine or electronic consultation, and developing educational materials and electronic decision support for PCPs. Our findings highlight need for change in delivering genomic medicine, which requires building the relationship between GHPs and PCPs, and creating new service delivery models to meet future needs.
    Language English
    Publishing date 2021-08-11
    Publishing country Germany
    Document type Journal Article
    ZDB-ID 2543127-4
    ISSN 1868-6001 ; 1868-310X
    ISSN (online) 1868-6001
    ISSN 1868-310X
    DOI 10.1007/s12687-021-00544-1
    Database MEDical Literature Analysis and Retrieval System OnLINE

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

    Kolker, Sabrina / Biringer, Anne / Bytautas, Jessica / Blumenfeld, Haley / Kukan, Sahana / Carroll, June C

    BMC pregnancy and childbirth

    2021  Volume 21, Issue 1, Page(s) 851

    Abstract: 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 ... ...

    Abstract 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.
    MeSH term(s) Adaptation, Psychological ; Adult ; COVID-19/psychology ; Canada/epidemiology ; Female ; Humans ; Maternal Health Services/standards ; Mental Health ; Postpartum Period/psychology ; Pregnancy/psychology ; Psychological Distress ; Qualitative Research ; SARS-CoV-2 ; Social Support
    Language English
    Publishing date 2021-12-31
    Publishing country England
    Document type Journal Article
    ZDB-ID 2059869-5
    ISSN 1471-2393 ; 1471-2393
    ISSN (online) 1471-2393
    ISSN 1471-2393
    DOI 10.1186/s12884-021-04337-9
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  6. Article ; Online: A Master Class in Family Doctor Leadership: Evaluating an Innovative Program.

    White, David / Carroll, June C / Crann, Sara / Shapiro, Marla / Whitehead, Cynthia / Freeman, Risa / Glazier, Richard H / Martin, Danielle / Kidd, Michael

    Family medicine

    2021  Volume 53, Issue 8, Page(s) 701–707

    Abstract: Background and objectives: In family medicine, leadership is critical for health care delivery, advancing curricula, research, and quality improvement. Systematic reviews of leadership development programs in health care identify limitations, calling ... ...

    Abstract Background and objectives: In family medicine, leadership is critical for health care delivery, advancing curricula, research, and quality improvement. Systematic reviews of leadership development programs in health care identify limitations, calling for innovative designs and rigorous assessment. Our objective was to evaluate the impact of applying master class principles to leadership development in academic family medicine.
    Methods: We used mixed methods to assess the impact of an innovative master class program on 15 emerging leaders in a large academic department of family medicine. The program consisted of five sessions where family physician masters shared their wisdom, techniques, and feedback with promising leaders. Quantitative evaluation involved participants' ratings of each session's content and delivery using a 5-point Likert scale. We assessed postcourse semistructured interviews with participants qualitatively using descriptive thematic content analysis.
    Results: Individual sessions were highly evaluated, with a combined mean of 4.82/5. Qualitative thematic analysis identified self-perceived increased effectiveness in leadership activities; increased confidence as a leader; increased motivation to be a leader; and perceptions of value from the program, contributing to what participants described as unexpected potential change within themselves. Themes related to effectiveness of the program were practical advice; networking; diverse topics; accessible speakers sharing personal stories; and small-group, informal, early-evening format.
    Conclusions: Master class concepts can be adapted to leadership development in academic family medicine, with evidence of early positive impact on participants' self-perception of leadership skills and confidence. Further research is warranted to assess organizational impact and applicability to other settings.
    MeSH term(s) Curriculum ; Humans ; Leadership ; Motivation ; Physicians, Family ; Program Evaluation
    Language English
    Publishing date 2021-09-29
    Publishing country United States
    Document type Journal Article
    ZDB-ID 639374-3
    ISSN 1938-3800 ; 0742-3225
    ISSN (online) 1938-3800
    ISSN 0742-3225
    DOI 10.22454/FamMed.2021.512946
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  7. Article ; Online: Effect of genetics clinical decision support tools on health-care providers' decision making: a mixed-methods systematic review.

    Sebastian, Agnes / Carroll, June C / Oldfield, Leslie E / Mighton, Chloe / Shickh, Salma / Uleryk, Elizabeth / Bombard, Yvonne

    Genetics in medicine : official journal of the American College of Medical Genetics

    2021  Volume 23, Issue 4, Page(s) 593–602

    Abstract: Purpose: Patient care involving genetics is challenging for nongenetics health-care providers. Clinical decision support (CDS) tools are a potential solution because they provide patient-specific risk assessments and/or management recommendations. This ... ...

    Abstract Purpose: Patient care involving genetics is challenging for nongenetics health-care providers. Clinical decision support (CDS) tools are a potential solution because they provide patient-specific risk assessments and/or management recommendations. This systematic review synthesized evidence on whether using CDS tools resulted in appropriate changes in genetics-related patient management made by nongenetics health-care providers.
    Methods: A comprehensive search in MEDLINE, Embase, and CINAHL yielded 2,239 unique articles. Two independent reviewers screened abstracts and full texts for quantitative, qualitative, and mixed-methods articles on management changes by nongenetics clinicians using a CDS tool as part of patient care. Effect sizes were calculated for quantitative studies and all articles were analyzed together using narrative synthesis. Twenty articles were included.
    Results: In 12/16 quantitative studies, CDS tools slightly increased appropriate changes in management, but study design appeared to affect the statistical significance of the effect. The qualitative data in the four remaining studies reaffirmed that CDS tools facilitated management decisions but raised questions about their effect on patient outcomes.
    Conclusion: Our review assessed clinical utility of CDS tools, finding that they slightly increase appropriate management changes by nongenetics providers. Future studies on CDS tools should explicitly evaluate decision making and patient outcomes.
    MeSH term(s) Decision Making ; Decision Support Systems, Clinical ; Health Personnel ; Humans
    Language English
    Publishing date 2021-01-08
    Publishing country United States
    Document type Research Support, Non-U.S. Gov't ; Systematic Review
    ZDB-ID 1455352-1
    ISSN 1530-0366 ; 1098-3600
    ISSN (online) 1530-0366
    ISSN 1098-3600
    DOI 10.1038/s41436-020-01045-1
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  8. Article ; Online: Great expectations: patients' preferences for clinically significant results from genomic sequencing.

    Shickh, Salma / Sebastian, Agnes / Clausen, Marc / Mighton, Chloe / Elser, Christine / Eisen, Andrea / Waldman, Larissa / Panchal, Seema / Ward, Thomas / Carroll, June C / Glogowski, Emily / Schrader, Kasmintan A / Lerner-Ellis, Jordan / Kim, Raymond H / Thorpe, Kevin E / Bombard, Yvonne

    Human genetics

    2023  Volume 142, Issue 4, Page(s) 553–562

    Abstract: We aimed to describe patient preferences for a broad range of secondary findings (SF) from genomic sequencing (GS) and factors driving preferences. We assessed preference data within a trial of the Genomics ADvISER, (SF decision aid) among adult cancer ... ...

    Abstract We aimed to describe patient preferences for a broad range of secondary findings (SF) from genomic sequencing (GS) and factors driving preferences. We assessed preference data within a trial of the Genomics ADvISER, (SF decision aid) among adult cancer patients. Participants could choose from five categories of SF: (1) medically actionable; (2) polygenic risks; (3) rare diseases; (4) early-onset neurological diseases; and (5) carrier status. We analyzed preferences using descriptive statistics and drivers of preferences using multivariable logistic regression models. The 133 participants were predominantly European (74%) or East Asian or mixed ancestry (13%), female (90%), and aged > 50 years old (60%). The majority chose to receive SF. 97% (129/133) chose actionable findings with 36% (48/133) choosing all 5 categories. Despite the lack of medical actionability, participants were interested in receiving SF of polygenic risks (74%), carrier status (75%), rare diseases (59%), and early-onset neurologic diseases (53%). Older participants were more likely to be interested in receiving results for early-onset neurological diseases, while those exhibiting lower decisional conflict were more likely to select all categories. Our results highlight a disconnect between cancer patient preferences and professional guidelines on SF, such as ACMG's recommendations to only return medically actionable secondary findings. In addition to clinical evidence, future guidelines should incorporate patient preferences.
    MeSH term(s) Adult ; Humans ; Female ; Middle Aged ; Patient Preference ; Motivation ; Rare Diseases ; Genomics ; Neoplasms/genetics
    Language English
    Publishing date 2023-03-21
    Publishing country Germany
    Document type Journal Article
    ZDB-ID 223009-4
    ISSN 1432-1203 ; 0340-6717
    ISSN (online) 1432-1203
    ISSN 0340-6717
    DOI 10.1007/s00439-023-02543-3
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  9. Article ; Online: Use of eConsult to enhance genetics service delivery in primary care: A multimethod study.

    Carroll, June C / Liddy, Clare / Afkham, Amir / Keely, Erin / Goh, Elaine S / Graham, Gail E / Permaul, Joanne A / Allanson, Judith / Heisey, Ruth / Makuwaza, Tutsirai / Manca, Donna P / O'Brien, Mary Ann / Grunfeld, Eva

    Genetics in medicine : official journal of the American College of Medical Genetics

    2022  Volume 24, Issue 10, Page(s) 2034–2041

    Abstract: ... from January 2019 to June 2020, there were 305 genetics eConsults. For 169 (55%), PCPs indicated receiving good ...

    Abstract Purpose: Electronic consultation (eConsult) is a freely-available secure online platform connecting primary care providers (PCPs) to geneticists. Our purpose was to determine whether eConsult is effective in improving genetics service delivery in primary care.
    Methods: PCP questionnaires regarding eConsult's utility, geneticists' tracking form assessments of eConsult type and appropriateness, and geneticists' interviews on implementing eConsult were carried out.
    Results: In 2 regions of Ontario, Canada, from January 2019 to June 2020, there were 305 genetics eConsults. For 169 (55%), PCPs indicated receiving good advice for a new course of action; for 110 (36%), referral was now avoided; and for 261 (86%), eConsult was perceived valuable for patient management. Of the 131 geneticist-completed tracking forms, cancer questions were most common (68, 52%). For 63 (48%), geneticists disagreed/strongly disagreed PCPs should know the answer to the referral question. From the interview data, it was observed that geneticists described eConsult positively and suggested how it might improve access and efficiencies if integrated into genetic service delivery. Dealing with eConsults virtually could reduce waitlists, and suggesting appropriate investigations for PCPs could improve efficiencies.
    Conclusion: eConsult offers a potential solution for receiving timely genetics advice and avoiding unnecessary patient referrals, however, greater effect on access and wait times will need systematic integration into PCP and geneticist practice.
    MeSH term(s) Genetic Services ; Health Services Accessibility ; Humans ; Ontario ; Primary Health Care/methods ; Referral and Consultation ; Telemedicine/methods
    Language English
    Publishing date 2022-08-10
    Publishing country United States
    Document type Journal Article ; Research Support, Non-U.S. Gov't
    ZDB-ID 1455352-1
    ISSN 1530-0366 ; 1098-3600
    ISSN (online) 1530-0366
    ISSN 1098-3600
    DOI 10.1016/j.gim.2022.07.003
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  10. Article ; Online: Family History Taking in Pediatric Practice: A Qualitative Interview Study.

    Tessier, Laure / Brehaut, Jamie C / Potter, Beth K / Chakraborty, Pranesh / Carroll, June C / Wilson, Brenda J

    Public health genomics

    2019  Volume 22, Issue 3-4, Page(s) 110–118

    Abstract: Background: Family history (FH) is a risk factor for many conditions in pediatric practice. There is no standard of care regarding FH taking, and only a few published studies about current practice.: Objectives: To explore in depth pediatricians' ... ...

    Abstract Background: Family history (FH) is a risk factor for many conditions in pediatric practice. There is no standard of care regarding FH taking, and only a few published studies about current practice.
    Objectives: To explore in depth pediatricians' perceptions, attitudes, beliefs, and practices regarding FH taking.
    Methods: The Theoretical Domains Framework (TDF) was used to develop a comprehensive interview scheme. Semi-structured interviews were conducted with community pediatricians. Interviews were audio-recorded, transcribed, and analyzed using a thematic approach and the constant comparison method.
    Results: Eleven pediatricians were interviewed. FH was found to be a firmly embedded, complex, and important aspect of pediatric practice. Participants described FH as part of regular holistic care. FH and social history were linked and often appeared to be part of the same concept to participants. FH was used for a range of purposes. In addition to risk assessment, FH information helped clarify diagnosis and select medication, tailor overall patient management based on family circumstance, and provide psychosocial support for parents. Participants expressed confidence in their FH skills and reported tailoring their approach with experience. Most were not concerned about formal evidence for FH and would not change their practice except for "good reason."
    Conclusions: The use of the TDF helped ensure a comprehensive approach to FH taking in pediatric practice. The findings suggest that FH taking in this setting is a complex activity, embedded in routine care. Efforts to make FH taking more systematic may founder if they fail to take into account pediatricians' attitudes, perspectives, and practices.
    MeSH term(s) Adolescent ; Attitude of Health Personnel ; Attitude to Health ; Child ; Clinical Competence/standards ; Data Collection ; Female ; Holistic Health ; Humans ; Male ; Medical History Taking/standards ; Ontario ; Pediatricians/psychology ; Pediatricians/standards ; Pedigree ; Practice Patterns, Physicians'/standards ; Qualitative Research
    Language English
    Publishing date 2019-10-29
    Publishing country Switzerland
    Document type Journal Article ; Multicenter Study ; Research Support, Non-U.S. Gov't
    ZDB-ID 2457023-0
    ISSN 1662-8063 ; 1662-4246
    ISSN (online) 1662-8063
    ISSN 1662-4246
    DOI 10.1159/000503729
    Database MEDical Literature Analysis and Retrieval System OnLINE

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