Clinician Focus Groups Research Articles

A Web-Based Social Network Tool (GENIE) for Supporting Self-management Among High Users of the Health Care System: Feasibility and Usability Study.

BackgroundPrimary care providers are well positioned to foster self-management through linking patients to community-based health and social services (HSSs). This study evaluated a web-based tool—GENIE (Generating Engagement in Network Involvement)—to support the self-management of adults. GENIE empowers patients to leverage their personal social networks and increase their access to HSSs. GENIE maps patients’ personal social networks, elicits preferences, and filters local HSSs from a community service directory based on patient’s interests. Trained volunteers (an extension of the primary care team) conducted home visits and conducted surveys related to life and health goals in the context of the Health TAPESTRY (Teams Advancing Patient Experience: Strengthening Quality) program, in which the GENIE tool was implemented. GENIE reports were uploaded to an electronic medical record for care planning by the team.ObjectiveThis study aims to explore patients’, volunteers’, and clinicians’ perceptions of the feasibility, usability, and perceived outcomes of GENIE—a tool for community-dwelling adults who are high users of the health care system.MethodsThis study involved 2 primary care clinician focus groups and 1 clinician interview (n=15), 1 volunteer focus group (n=3), patient telephone interviews (n=8), field observations that captured goal-action sequences to complete GENIE, and GENIE utilization statistics. The patients were enrolled in a primary care program—Health TAPESTRY—and Ontario’s Health Links Program, which coordinates care for the highest users of the health care system. NVivo 11 (QSR International) was used to support qualitative data analyses related to feasibility and perceived outcomes, and descriptive statistics were used for quantitative data.ResultsMost participants reported positive overall perceptions of GENIE. However, feasibility testing showed that participants had a partial understanding of the tool; volunteer facilitation was critical to support the implementation of GENIE; clinicians perceived their navigation ability as superior to that of GENIE supported by volunteers; and tool completion took 39 minutes, which made the home visit too long for some. Usability challenges included difficulties completing some sections of the tool related to medical terminology and unclear instructions, limitations in the quality and quantity of HSSs results, and minor technological challenges. Almost all patients identified a community program or activity of interest. Half of the patients (4/8, 50%) followed up on HSSs and added new members to their network, whereas 1 participant lost a member. Clinicians’ strengthened their understanding of patients’ personal social networks and needs, and patients felt less social isolation.ConclusionsThis study demonstrated the potential of GENIE, when supported by volunteers, to expand patients’ social networks and link them to relevant HSSs. Volunteers require training to implement GENIE for self-management support, which may help overcome the time limitations faced by primary care clinicians. Refining the filtering capability of GENIE to address adults’ needs may improve primary care providers’ confidence in using such tools.

Survivorship Care Focus Group Discussions for Breast Cancer Survivors and Primary Care Clinicians

Purpose: This is the first pilot study to examine survivors’ experiences and primary care physicians and nurse practitioners’ knowledge and behaviour practices with respect to late effects (e.g., fatigue, chemobrain, lymphodema, cardiac problems, reproductive, infertility and sexual health issues, bone problems, and pain). Methods: Two separate focus groups consisting of 5 breast cancer survivors and 5 primary care physicians and nurse practitioners recruited from a local hospital in Central Illinois answered predetermined questions about cancer survivorship care. We intentionally limited the sample in order to conduct a detailed discussion (90 minutes) to gain every participant’s perspective. Results: Breast cancer survivors expressed a void in discussion and lack of knowledge among their primary care physicians regarding late effects as well as psychological consequences, referrals to support groups, and availability of resources (e.g., finances), thereby negatively affecting survivors’ quality of life. A primary care clinician (PCC) focus group revealed a service gap for mental health services for all patients, knowledge deficit about late effects, and lack of awareness of patient resources. Both cancer survivors and PCCs were extremely supportive about a shared care survivorship model between oncology and primary care. All focus group participants were unequivocally receptive about enhancing survivorship care throughout a cancer survivor’s lifetime. Conclusion: Complementing cancer survivorship care with primary care clinicians in the areas of late effects, in addition to psychological consequences, screening, and lifestyle habits will enhance a cancer survivor’s health-related quality of life.

Addressing Smoking Cessation among Women in Substance Use Treatment: A Qualitative Approach to Guiding Tailored Interventions.

Intersecting socially marginalized identities and unique biopsychosocial factors place women with substance use disorders (SUDs) experiencing myriad disadvantages at higher risk for smoking and stigmatization. Here, based on our work with women receiving care for SUDs in four participating treatment/women-serving centers (N = 6 individual clinics), we: (1) describe the functions of smoking for women with SUDs; and (2) explore participants’ experiences of a comprehensive tobacco-free workplace (TFW) program, Taking Texas Tobacco-Free (TTTF), that was implemented during their SUD treatment. Ultimately, information gleaned was intended to inform the development of women-tailored tobacco interventions. Data collection occurred pre- and post-TTTF implementation and entailed conducting client (7) and clinician (5) focus groups. Using thematic analysis, we identified four main themes: “the social context of smoking,” “challenges to finding support and better coping methods,” “addressing underlying conditions: building inner and outer supportive environments,” and “sustaining support: TFW program experiences.” Women reported that: smoking served as a “coping mechanism” for stress and facilitated socialization; stigmatization hindered quitting; non-stigmatizing counseling cessation support provided alternative coping strategies; and, with clinicians, the cessation opportunities TTTF presented are valuable. Clinicians reported organizational support, or lack thereof, and tobacco-related misconceptions as the main facilitator/barriers to treating tobacco addiction. Effective tobacco cessation interventions for women with SUDs should be informed by, and tailored to, their gendered experiences, needs, and recommendations. Participants recommended replacing smoking with healthy stress alleviating strategies; the importance of adopting non-judgmental, supportive, cessation interventions; and the support of TFW programs and nicotine replacement therapy to aid in quitting.

1 Development of the School-Aged Life Impact Burn Recovery Evaluation (SA-LIBRE: 5–12) Profile: A Conceptual Model Framework

Abstract Introduction Pediatric burn injuries can alter the trajectory of the survivor’s entire life. Patient-centered outcome measures are helpful to capture and assess their unique physical and psychosocial needs and long-term recovery. This study aimed to develop a conceptual model framework to measure outcomes most important to pediatric burn survivors aged 5 to 12 years as a part of the SA-LIBRE5-12 Computer Adaptive Test (CAT) development. Methods This study used a systematic literature review guided by the WHO International Classification of Functioning – Child and Youth. Previously established domains in the American Burn Association/Shriners Hospitals for Children Burn Outcomes Questionnaire5-18 further guided framework development. Individual interviews with parents and clinicians were conducted to obtain perspectives on domains most important to assess following a burn injury in children aged 5 to 12 years. One clinician focus group was completed to identify gaps in the preliminary framework, and semi-weekly expert consensus meetings were conducted to solidify the framework. Qualitative data were analyzed by grounded theory methodology in NVivo 12 software. Results The literature review identified 82 articles. Eight parents and seven clinicians participated in individual interviews, four clinicians participated in one focus group, and three consultants were included in the expert consensus meetings. The consultants included a burn surgeon, psychiatrist, and health services researcher. Three major domains emerged from the grounded theory approach, including: 1) Physical Functioning: fine motor and upper extremity, gross motor and lower extremity, pain, skin sensitivity, sleep and fatigue, and physical resilience; 2) Psychological Functioning: cognitive, behavioral, emotional, resilience, and body image; and 3) Family and Social Functioning: school, peer relations, community participation, family relationships, and parental satisfaction. Conclusions The comprehensive literature review, clinician and parent individual interviews, clinician focus group, and expert consensus meetings resulted in a conceptual model framework for parent-reported health outcomes after a burn injury in school-aged children aged 5 to 12 years. The framework will be used to develop item banks for a CAT-based assessment of school-aged children’s health and developmental outcomes.

EP555 - Implementing early exome sequencing to shorten the diagnostic odyssey: identifying barriers and facilitators through clinician focus groups

eP555 - Implementing early exome sequencing to shorten the diagnostic odyssey: identifying barriers and facilitators through clinician focus groups

A qualitative study of clinicians' perspectives on independent rights advice for involuntary psychiatric patients in British Columbia, Canada.

In British Columbia (BC), Canada, clinicians are responsible for giving involuntary psychiatric patients rights information upon admission. Yet an investigation by the BC Office of the Ombudsperson found that clinicians are not always fulfilling this responsibility. The Ombudsperson recommended that the provincial government fund an independent body to give rights advice to patients. To understand how clinicians feel about this recommendation, focus groups of clinicians who may give psychiatric patients rights information (n = 81) were conducted in Vancouver, BC, to probe their attitudes toward independent rights advisors. The focus group transcripts were thematically analyzed. Most clinicians believe that giving rights information is within their scope of practice, although some acknowledge that it poses a conflict of interest when the patient wishes to challenge the treatment team's decisions. Participants' chief concerns about an independent rights-advice service were that (a) patients may experience a delay in receiving their rights information, (b) integrating rights advisors into the workflow would complicate an already chaotic admission process, and (c) more patients would be counselled to challenge their hospitalization, leading to an increased administrative workload for clinical staff. However, many participants believed that independent rights advisors would be a positive addition to the admission process, both allowing clinicians to focus on treatment and serving as a source of rights-related information. Participants were generally amenable to an independent rights-advice service, suggesting that the introduction of rights advisors need not result in an adversarial relationship between treatment team and patient, as opponents of the proposal fear. Clearly distinguishing between basic rights information and in-depth rights advice could address several of the clinicians' concerns about the role that independent rights advisors would play in the involuntary admission process. Clinicians' and other stakeholders' concerns should be considered as the province develops its rights-advice service.

Improving Knowledge of Long-Acting Reversible Contraception in an Adolescent and Young Adult Female Population

ObjectiveTo improve adolescent and young adult clients’ knowledge of long-acting reversible contraception (LARC) methods by standardizing the education they received at an outpatient clinic. DesignThe Plan-Do-Study-Act was used as a framework to implement and evaluate a practice change aimed at improving the contraceptive education provided to adolescent and young women. Setting/Local ProblemThis single-center quality improvement project took place at a community-based clinic in the Northeastern United States where clinicians’ practice for contraceptive counseling lacked use of a standardized educational tool. ParticipantsThirty female participants between the ages of 14 and 25. Intervention/MeasurementsA pre- and postintervention survey was used to assess participants’ knowledge of LARC methods after viewing an online video. A focus group of clinicians was held to assess their thoughts on the use of the video education. ResultsSurvey results indicated improved knowledge of participants on all six knowledge points assessed in the survey. Focus group feedback indicated the video education was considered sustainable and desired by clinicians for an additional year and Plan-Do-Study-Act cycle. ConclusionOnline, video-based education may be an effective and sustainable way to provide adolescent and young adult clinic clients with evidence-based information on LARC methods to help them make informed decisions about contraception.

Patient and clinician experiences and opinions of the use of a novel home use medical device in the treatment of peripheral vascular disease - a qualitative study

BackgroundPeripheral vascular diseases have a significant impact on functional quality of life. Previous research has demonstrated the complex, limiting and costly economic implications of these conditions such as lower limb ulceration chronicity and ischaemic amputation. These complex, limb and life threatening conditions demand the development of novel interventions with objective research as part of that development. Hence, a novel intermittent negative pressure medical device in the form of a wearable boot (FlowOx™) was developed. As part of the development process, this study aimed to explore patient and clinician opinions of the boot.MethodsA qualitative approach was used to collect patient and clinician experiences in Norway. An advisory group informed the semi-structured questions used in seven patient interviews and one clinician focus group (n = 5). The data were recorded digitally and transcribed verbatim. Patient and clinician data were analysed as distinct groups using a thematic process.ResultsData analysis resulted in five themes from the patients which gave insight into; the impact of the disease process; practicalities of using the boot, positive experiences of use; perceived outcomes; reflecting on use. Six themes were created from the clinicians. These gave insight into; ideal outcomes and how to measure them; ways to potentially use the boot; using research in healthcare; positives of the device; observed effects and next steps; potential improvements to the device.ConclusionThis study provides insight into the experiences and opinions of FlowOx™. Patients and clinicians were positive about the device due to its ease of use. Those patients with peripheral arterial disease experienced significantly more benefit, especially for ischaemic ulceration than those with a chronic venous condition. Clinicians placed value on the patient reported outcomes in the treatment decision-making process. This preliminary study into experiences of FlowOx™ use provides valuable feedback that will inform design modification and ongoing research into implementation points and prospective user groups. FlowOx™ demonstrates potential as a conservative therapy offering users a convenient, home use, self-care management solution for improving symptomatic peripheral arterial disease and quality of life.

Engaging End Users in Designing Systems and Hardware for a Socially Assistive Robot

Development of low-cost robots to assist older adults requires the input of end users: older adults, paid caregivers and clinicians. This study builds on prior work focused on the task investigation and deployment of mobile robots in a Program of All-inclusive Care for the Elderly. We identified hydration, walking and reaching as tasks appropriate for the robot and helpful to the older adults. In this study we investigated the design specifications for a socially assistive robot to perform the above tasks. Through focus groups of clinicians, older adults and paid caregivers we sought preferences on the design specifications. Using conventional content analysis, the following four themes emerged: the robot must be polite and personable; science fiction or alien like; depends on the need of the older adult; and multifaceted to meet the needs of older adults. These themes were used in the design and deployment of the Quori robot.

2020 Focused Updates to the Asthma Management Guidelines: A Report from the National Asthma Education and Prevention Program Coordinating Committee Expert Panel Working Group

The 2020 Focused Updates to the Asthma Management Guidelines: A Report from the National Asthma Education and Prevention Program Coordinating Committee Expert Panel Working Group was coordinated and supported by the National Heart, Lung, and Blood Institute (NHLBI) of the National Institutes of Health. It is designed to improve patient care and support informed decision making about asthma management in the clinical setting. This update addresses six priority topic areas as determined by the state of the science at the time of a needs assessment, and input from multiple stakeholders: Fractional Exhaled Nitric Oxide TestingIndoor Allergen MitigationIntermittent Inhaled CorticosteroidsLong-Acting Muscarinic AntagonistsImmunotherapy in the Treatment of Allergic AsthmaBronchial ThermoplastyA rigorous process was undertaken to develop these evidence-based guidelines. The Agency for Healthcare Research and Quality’s (AHRQ) Evidence-Based Practice Centers conducted systematic reviews on these topics, which were used by the Expert Panel Working Group as a basis for developing recommendations and guidance. The Expert Panel used GRADE (Grading of Recommendations, Assessment, Development and Evaluation), an internationally accepted framework, in consultation with an experienced methodology team for determining the certainty of evidence and the direction and strength of recommendations based on the evidence. Practical implementation guidance for each recommendation incorporates findings from NHLBI-led patient, caregiver, and clinician focus groups. To assist clincians in implementing these recommendations into patient care, the new recommendations have been integrated into the existing Expert Panel Report-3 (EPR-3) asthma management step diagram format.

The feasibility of delivering first suspected seizure care using telehealth: A mixed methods controlled study

PurposePrompt access to specialist assessment is critical after a first suspected seizure. We aimed to test the feasibility of providing this service via telehealth, compared with usual care (face-to-face appointment) in patients referred to a first seizure clinic. MethodThis feasibility study was a prospective mixed-methods non-randomised controlled design in a single centre. Patients referred to the first seizure clinic chose to receive their consultation by telehealth (intervention group) or face-to-face (usual care). Demand, practicality, acceptability and limited-efficacy testing were assessed using recruitment and routinely collected clinic data, participant surveys and a clinician focus group. ResultsTelehealth in the first seizure clinic was feasible; however, internet connection, computer hardware and software, patient confidence and organisational support impacted on practicality. Of patients who were eligible for telehealth, 25 % chose to use telehealth for their appointment, with more women taking up the opportunity. Geography and age were not factors in likelihood of uptake. There was no significant between-group difference found in acceptability and limited efficacy measures conducted. ConclusionTelehealth is a responsive and convenient way to reach some patients who face barriers in access to specialist neurology assessment following a first suspected seizure.

Identifying user-centered content, design, and features for mobile health apps to support long-term assessment, behavioral intervention, and transitions of care in neurological rehabilitation: An exploratory study

Introduction The use of mobile health technology has the potential to increase healthcare accessibility, promote self-management, provide education materials, and support self-monitoring of biometrics. This may be of particular benefit to those living in the community with chronic neurological conditions. The purpose of this research was to characterize perspectives of individuals with brain injury or stroke, their care partners, and neuro-rehabilitation clinicians to inform the design of mobile health app-based interventions that address the need for ongoing community-based health-related professional support. Methods Individuals with stroke or traumatic brain injury, their care partners, and clinicians were recruited from a large university hospital with a specialized neuro-rehabilitation program. Data were collected via semi-structured focus groups and were examined using descriptive statistics and content analysis. Results Five consistent themes emerged: (a) all-in-one app with customized features; (b) communication with healthcare providers; (c) cognitive strategies; (d) app accessibility; and (e) user education. The clinician focus group reiterated these consumer focus group themes, with one additional theme: (f) logistics of clinician time and effort to provide effective app-based services to patients. Conclusions Results have directly informed the ongoing development of a community-based mobile health app intervention, and may also inform the content and design of future mHealth technological development in this population.

Pediatric hospital screening for suicide risk in adolescents referred for maltreatment

• Adolescents who experience maltreatment are at increased risk for suicide. • One-third of maltreated adolescents screened positive of suicide risk. • Systematic suicide risk screening in pediatric hospitals is important. • Screening protocols using a brief and valid tool can improve identification of risk. • There are protocol adherence facilitators to promote and barriers to overcome. Adolescents who have experienced the trauma of physical or sexual abuse are at increased risk for suicidal ideation and attempt, underscoring the importance of effective screening to detect and mitigate risk. This quality improvement study aimed to develop, implement, and monitor a suicide risk screening protocol to improve consistency and efficacy in identifying and preventing suicidality among maltreated adolescents referred to a pediatric hospital for medical evaluation. Mixed methods design using (1) retrospective patient chart review ( N = 132) to examine case characteristics, rates of protocol adherence, and screening outcomes; and (2) clinician focus group interview ( N = 7) to explore multilevel facilitators and barriers to protocol uptake. The frequency and uniformity of screening for suicide risk improved following execution of a standardized protocol administering a brief and valid instrument. The extent of clinician adherence to the protocol was promoted and inhibited by a range of personal and organizational factors. Acute risk for suicide was identified in one-third of the adolescents screened, and suicidal thoughts or behaviors were reported by more than one-quarter. Findings demonstrate the utility of routine suicide risk screening with adolescents who have experienced maltreatment and are thus at elevated risk for suicide. The sequential process outlined for establishing an evidence-informed screening protocol offers a practical resource for pediatric healthcare providers concerned with prioritizing patient safety and well-being.

Development of a validated short-form of the Childhood Atopic Dermatitis Impact Scale, the CADIS-SF15.

The Childhood Atopic Dermatitis Impact Scale (CADIS) with 45 items may be burdensome to complete. We therefore aimed to develop a CADIS short-form. Parents of 300 children completed the prototype CADIS. Exploratory factor analysis was conducted on the 45-item CADIS version. The most representative items were chosen. Confirmatory factor analysis was used to confirm the a priori factor structure. Content validity was assessed in a focus group of patients, parents, clinicians, methodologists and industry delegates. Internal consistency, 48-h test-retest reliability, construct validity and responsiveness of the newly developed short-form were assessed. A total of 270 families provided data at baseline, 34 after 48h and 228 after 4weeks. Fourteen items of three different factors fulfilled the proposed eligibility criteria and were included in the draft short-form. After the content validity rating, one item relating to the child's sleep was added to further improve content validity. The confirmatory factor analyses showed good model fit, and a 15-item short-form was initiated, the CADIS-SF15. The total scale and the three domains showed good internal consistency and test-retest reliability. The correlation between SCORAD and other subjective measures was consistent with our hypotheses. Differences in scores between mild, moderate and severe AD patients were significant, and the CADIS-SF15 was able to detect changes in 'improving' patients over time. The CADIS-SF15 with 15 items in three domains is an internally consistent, reliable, valid, responsive and brief measure of QoL in children affected with AD and their parents. Further evaluation of clinical applicability is required.

Engaging Patients in Precision Oncology: Development and Usability of a Web-Based Patient-Facing Genomic Sequencing Report

Evidence-based somatic and germline sequencing has transformed cancer care and improves patient outcomes. However, patients' low genetic literacy and misunderstanding of their own genomic results poses a threat to the realization of precision oncology. To optimize patient genomic comprehension, we developed a Web-based, patient-directed, genomic sequencing education and return-of-results tool, HOPE-Genomics. The HOPE-Genomics prototype included somatic and germline sequencing results, embedded multimedia genomic education, and interactive features (eg, request for genetic counseling). Between January and April 2018, we elicited feedback on tool usability and comprehensiveness through participant surveys, 4 focus groups of patients with cancer and their family members, and 3 provider focus groups (comprising 8 patients, 5 family members, and 19 providers). We identified themes in patient/family tool-related responses, including the desire to view a patient-friendly report, a desire to receive multiple types of genomic information (eg, prognostic and uncertain), high acceptability of report content, and interest in tool-enabled access to genetic counseling. Major themes from the clinician focus groups included believing the tool could help patients formulate questions and facilitate patients' communication of results to family members. However, there were diverse responses from all participants in terms of tool implementation (ie, timing and nature of report release). Some participants preferred report release before meeting with the provider, and others preferred it during the appointment. Additionally, some clinicians were concerned about providing prognostic and treatment information through the tool. There was high acceptability and interest from patients, family members, and providers in a patient-directed genomics report. Future work will determine whether direct-to-patient reporting of genomic results improves patient knowledge, care engagement, and compliance with genomically guided interventions.

Feasibility trial of the school‐based STRONG intervention to promote resilience among newcomer youth

AbstractThere are thousands of refugee students in Canadian schools and many struggle with distress and trauma symptoms. Even those not demonstrating overt distress may face adjustment challenges. This paper describes the pilot of the Supporting Transition Resilience of Newcomer Groups (STRONG) program in ten schools. STRONG is a 10‐session, manualized program focused on building skills and helping students process their migration journey. This pilot used a pragmatic mixed‐methods approach to evaluate the feasibility of STRONG, with a focus on acceptability, implementation, and perceived utility of the intervention. Clinicians (n = 16) provided data at the training, throughout the intervention and at the end through clinician surveys and focus groups. Clinicians reported high levels of acceptability for the training and program. Implementation challenges included time constraints, external influences, and some challenges with language. Overall STRONG was seen to provide significant positive benefits for students in increasing connectedness, stress management, and coping strategies. Clinicians felt that students developed more positive self‐image and had improved optimism. This feasibility trial of the STRONG program indicated the potential utility for promoting resilience and reducing distress among refugee students through a structured, school‐based group intervention.

A237 SHARED DECISION MAKING: DESIGN OF A PREGNANCY IN IBD DECISION AID (PIDA)

Abstract Background Given a significant proportion of women with inflammatory bowel disease (IBD) are of child-bearing age, the development of a pregnancy IBD decision aid would benefit patients and clinicians. Lack of IBD-specific reproductive knowledge has been associated with increased “voluntary childlessness” and may contribute to inappropriate medication changes during or after pregnancy. Decision aids support decision making in pregnancy in general, as well as in multiple other chronic diseases. However existing literature has not identified such a resource for women with IBD. Aims To develop a decision aid to improve decision making regarding preconception and pregnancy in IBD among women with IBD. Methods We followed the International Patient Decision Aids Standards (IPDAS). A steering committee of Canadian and Australian health care professionals with an interest in IBD management in pregnancy, in addition to patient representatives, was established. Themes chosen for discussion included inheritance, fertility, nutrition, medications, mode of delivery, breastfeeding, infant health. Initial patient and clinician focus groups were conducted and responses recorded with written/audio mediums. We developed an electronic PIDA draft that incorporates individualised information (type of IBD, pre-conception or pregnant, surgical history, medications) in personalized decision making. Further patient focus groups and interviews were conducted to obtain user opinion of the PIDA draft. Results In July 2017, patient and clinician focus groups were conducted at a Canadian site. Three patients (pre-conception) attended the focus group. Patient concerns - impact of disease and surgery on fertility and preterm delivery; impact of drug therapies on the fetus/ infant; impact of active disease on maternal and fetal/infant health. The clinician focus group included 3 IBD specialists, 2 IBD fellows, 2 IBD nurses, an obstetrician and a neonatal intensivist. Clinician concerns - absence of pre-conception counselling and lack of patient understanding about the impact of disease activity and IBD medication use in pregnancy. Additional patient feedback obtained through interviews (n=15) at two Canadian sites since March 2019 regarding the current electronic PIDA was positive, with comments about content, personalization, readability and unbiased presentation. Suggestions were made for inclusion of additional content such as impact of IBD on sexual function, laboratory changes during pregnancy, and timing of medications post-partum. Conclusions The pre and post PIDA design patient and clinician focus groups and interviews affirmed the role for PIDA. Main decisions considered necessary to address included ideal timing of conception pending disease activity, management of medications, and delivery methods. Ongoing user feedback will be obtained at Australian and Canadian sites during planned alpha testing. Funding Agencies WCHRI, Sinai Health System, UBC

Clinicians and patients perspectives on follow-up care and eHealth support after allogeneic hematopoietic stem cell transplantation: A mixed-methods contextual analysis as part of the SMILe study.

We report on our contextual analysis's methodology, as a first step of an implementation science project aiming to develop, implement, and test the effectiveness of an integrated model of care in SteM-cell transplantatIon faciLitated by eHealth (SMILe). We applied an explanatory sequential mixed-methods design including clinicians and patients of the University Hospital Freiburg, Germany. Data were collected from 3/2017 to 1/2018 via surveys in 5 clinicians and 60 adult allogeneic stem-cell transplantation patients. Subsequently, we conducted 3 clinician focus groups and 10 patient interviews. Data analysis followed a 3-step process: (1) creating narrative descriptions, tables, and maps; (2) mapping key observational findings per dimension of the eHealth-enhanced Chronic-Care Model; (3) reflecting on how findings affect our choice of implementation strategies. Current clinical practice is mostly acute care driven, with no interdisciplinarity and weak chronic illness management. Gaps were apparent in the dimensions of self-management support and delivery-system design. Health behaviors that would profit from support include medication adherence, physical activity and infection prevention. The theme "being alone and becoming an expert" underpinned patients need to increase support in hospital-to-home transitions. Patients reported insecurity about recognizing, judging and acting upon symptoms. The theme "eHealth as connection not replacement" underscores the importance of eHealth augmenting, not supplanting human contact. Synthesis of our key observational findings informed eight implementation strategies. Stakeholders are willing towards a chronic care-focused approach and open for eHealth support. The contextual information provides a basis for the SMILe model's development and implementation.

P563 Shared decision-making in pregnancy in inflammatory bowel disease: Design of a pregnancy in IBD decision aid (PIDA)

Abstract Background A lack of IBD-specific reproductive knowledge has been associated with increased ‘voluntary childlessness’.Furthermore, a lack of patient and clinician knowledge may contribute to inappropriate medication changes during or after pregnancy that may lead to a flare of disease. Evidence exists for the benefit of decision aids to support decision-making in pregnancy in general, as well as in multiple other chronic disease; however, such a resource for pregnancy in IBD has not been identified. Methods Using International Patient Decision Aids Standards, we have commenced design of our Pregnancy in IBD Decision Aid (PIDA). A steering committee consisting of Canadian and Australian Healthcare professionals with an interest in IBD management in pregnancy, in addition to a patient representative was established. Initial patient and clinician focus groups were conducted. Themes prospectively chosen for discussion included inheritance, fertility, nutrition, medications, mode of delivery, breastfeeding, infant infections and vaccinations. We designed an electronic PIDA draft that incorporates individualised information (for example, type of IBD, pre-conception or pregnant, surgical history and current medications) in personalised decision-making. Further patient focus groups and interviews were conducted to obtain user opinion of the PIDA draft. Results In July 2017, patient and clinician focus groups were conducted at a Canadian site. Patient concerns regarding pregnancy included the impact of disease, previous surgical history on fertility, preterm delivery; the potential impact of current and past drug therapies on the fetus/ infant; and the negative impact of active disease on both maternal and fetal/infant health. Clinician concerns included the absence of pre-conception counselling and potential for lack of patient understanding about the impact of disease activity and IBD medication use in pregnancy. Patient feedback (n = 15) obtained through interviews at two Canadian and one Australian site regarding the current electronic PIDA draft was predominantly positive, with comments pertaining to the adequacy of content coverage, personalisation, readability and unbiased information presentation. Suggestions were made for inclusion of further content such as the impact of IBD on sexual function, expected laboratory changes and the timing of recommencement of medications post-partum. Conclusion The completion of pre and post-PIDA design focus groups and interviews affirmed the role for PIDA. Main decisions that were considered necessary to address included ideal timing of conception pending disease activity, management of medications and delivery methods. Ongoing user feedback is being obtained at Australian and Canadian sites currently.

Development of a clinician–parent home care education intervention

To examine the strengths and opportunities for improvement of current home care education practices to inform the development of the Home Care for Heart Health intervention, and to develop a web-based intervention for parents and clinicians with complimentary print materials that could provide the right education at the right time to foster a safer transition from hospital to home. An inter-professional focus group of parents, clinicians, and designers was formed to co-create a home care education intervention for parents of children with congenital heart disease (CHD) and their care team. We used the Integrated New Product Development process model created by Jonathon Cagan and Craig Vogel at Carnegie Mellon University to develop the intervention. This process model is a way of thinking that combines horizontal and inter-disciplinary teams, stakeholder-centric focus, and a system of qualitative discovery and development evolving towards quantitative methods of refinement. Our team developed the Home Care for Heart Health intervention. The evidenced-based intervention includes a quick reference guide for parents of children with CHD, an accompanying app, family-friendly pathways, and clinician education. Using an inter-professional approach, our team of clinicians, parents, and design experts were able to co-create a clinician-parent home care education intervention with broad application and lifelong relevance to the Congenital Heart Disease Community. Our intervention has the potential to be used as a model for other home care education interventions for parents of children with chronic illnesses.