Qualitative Analysis of Patient Decisional Needs for Medications to Treat Heart Failure.

BACKGROUND: The development of tools to support shared decision-making should be informed by patients' decisional needs and treatment preferences, which are largely unknown for heart failure (HF) with reduced ejection fraction (HFrEF) pharmacotherapy decisions. We aimed to identify patients' decisional needs when considering HFrEF medication options. METHODS: This was a qualitative study using semi-structured interviews. We recruited patients with HFrEF from 2 Canadian ambulatory HF clinics and clinicians from Canadian HF guideline panels, HF clinics, and Canadian HF Society membership. We identified themes through inductive thematic analysis. RESULTS: Participants included 15 patients and 12 clinicians. Six themes and associated subthemes emerged related to HFrEF pharmacotherapy decision-making: (1) patient decisional needs included lack of awareness of a choice or options, difficult decision timing and stage, information overload, and inadequate motivation, support and resources; (2) patients' decisional conflict varied substantially, driven by unclear trade-offs; (3) treatment attribute preferences-patients focused on both benefits and downsides of treatment, whereas clinicians centered discussion on benefits; (4) quality of life-patients' definition of quality of life depended on pre-HF activity, though most patients demonstrated adaptability in adjusting their daily activities to manage HF; (5) shared decision-making process-clinicians' described a process more akin to informed consent; (6) decision support-multimedia decision aids, virtual appointments, and primary-care comanagement emerged as potential enablers of shared decision-making. CONCLUSIONS: Patients with HFrEF have several decisional needs, which are consistent with those that may respond to decision aids. These findings can inform the development of HFrEF pharmacotherapy decision aids to address these decisional needs and facilitate shared decision-making.

Validation of machine learning models for estimation of left ventricular ejection fraction on point-of-care ultrasound: insights on features that impact performance.

BACKGROUND: Machine learning (ML) algorithms can accurately estimate left ventricular ejection fraction (LVEF) from echocardiography, but their performance on cardiac point-of-care ultrasound (POCUS) is not well understood. OBJECTIVES: We evaluate the performance of an ML model for estimation of LVEF on cardiac POCUS compared with Level III echocardiographers' interpretation and formal echo reported LVEF. METHODS: Clinicians at a tertiary care heart failure clinic prospectively scanned 138 participants using hand-carried devices. Video data were analyzed offline by an ML model for LVEF. We compared the ML model's performance with Level III echocardiographers' interpretation and echo reported LVEF. RESULTS: There were 138 participants scanned, yielding 1257 videos. The ML model generated LVEF predictions on 341 videos. We observed a good intraclass correlation (ICC) between the ML model's predictions and the reference standards (ICC = 0.77-0.84). When comparing LVEF estimates for randomized single POCUS videos, the ICC between the ML model and Level III echocardiographers' estimates was 0.772, and it was 0.778 for videos where quantitative LVEF was feasible. When the Level III echocardiographer reviewed all POCUS videos for a participant, the ICC improved to 0.794 and 0.843 when only accounting for studies that could be segmented. The ML model's LVEF estimates also correlated well with LVEF derived from formal echocardiogram reports (ICC = 0.798). CONCLUSION: Our results suggest that clinician-driven cardiac POCUS produces ML model LVEF estimates that correlate well with expert interpretation and echo reported LVEF.

"I may be essential but someone has to look after my kids": women physicians and COVID-19.

OBJECTIVES: This paper analyzes results from focus groups held with women physicians in British Columbia which explored questions around how gender norms and roles influenced their experiences during COVID-19. METHODS: Four virtual focus groups were organized between July and September 2020. Participants (n = 27) were voluntarily recruited. Data were analyzed using applied thematic analysis. RESULTS: In addition to the COVID-19-related changes experienced across the profession, women physicians faced distinct challenges related to an increase in unpaid care responsibilities, and often felt excluded from, and occasionally dismissed by, leadership. Women leaders often felt their contributions were unrecognized and undervalued. Participants drew strength from other women leaders, peer networks, and professional support, but these strategies were limited by unpaid care and emotional labour demands, which were identified as increasing risk of burnout. DISCUSSION: Even though women physicians hold a degree of relative privilege, unpaid care work and gender norms contribute to distinct secondary effects of COVID-19. Women physicians link these to pre-pandemic assumptions (within families and communities) that women would absorb care deficits at their own cost. Health system leadership continues to reflect a masculine normative experience wherein the personal and professional are separated, and which devalues the emotional labour often associated with feminine leadership. The strategies participants employed to address negative impacts, while demonstrating resourcefulness and peer support, reflect individualistic responses to social-structural challenges. There is a need for greater recognition of women's contributions at home and work, increased representation in decision-making, and practical supports such as childcare and counselling.

RéSUMé: OBJECTIFS: Dans cet article, nous analysons les résultats de groupes thématiques tenus avec des femmes médecins en Colombie-Britannique pour explorer des questions sur l'influence des normes et des rôles liés au genre sur les expériences vécues durant la COVID-19. MéTHODE: Quatre groupes thématiques virtuels ont été organisés entre juillet et septembre 2020. Les participantes (n = 27) ont été recrutées parmi des volontaires. Les données ont fait l'objet d'une analyse thématique appliquée. RéSULTATS: En plus des changements liés à la COVID-19 vécus dans toute la profession, les femmes médecins ont connu des difficultés particulières liées à l'augmentation de leurs responsabilités domestiques non rémunérées et se sont souvent senties exclues, et parfois rejetées, par la haute direction. Les dirigeantes ont souvent senti que leurs contributions étaient non reconnues et sous-estimées. Les participantes se sont appuyées sur d'autres dirigeantes et sur leurs réseaux de pairs et de soutien professionnel, mais ces stratégies ont été limitées par les exigences de leur travail domestique non rémunéré et de leur labeur émotionnel, qui sont reconnues comme faisant augmenter le risque d'épuisement professionnel. DISCUSSION: Bien que les femmes médecins soient relativement privilégiées, le travail domestique non rémunéré et les normes liées au genre ont contribué à des effets secondaires de la COVID-19 qui leur sont particuliers. Les femmes médecins expliquent ces effets par l'hypothèse, qui prévalait déjà avant la pandémie (au sein des familles et des communautés), que les femmes combleraient les lacunes dans les soins à leurs propres dépens. Les dirigeants des systèmes de santé continuent de refléter une expérience masculine normative selon laquelle la vie personnelle et la vie professionnelle sont séparées, et qui dévalorise le labeur émotionnel souvent associé au leadership féminin. Bien qu'elles fassent preuve d'ingéniosité et d'entraide, les stratégies employées par les participantes pour aborder les impacts négatifs reflètent des réponses individualistes à des difficultés sociostructurelles. Il est nécessaire de mieux reconnaître les contributions des femmes à la maison et au travail, d'accroître leur représentation dans la prise de décisions et de renforcer les mesures d'aide pratiques comme les services de garde et le counseling.

Physician engagement: the Vancouver Medical Staff Association engagement charter.

Engagement of physicians with their healthcare community or institution should be a central issue in healthcare because it can be translated into improved patient care, enhanced well-being for physicians as well as safer, more effective and less costly healthcare. To accomplish the mission/goal of meaningful physician engagement, we set about to establish a 'charter' for physician engagement. We defined our concept of meaningful physician engagement and customised the engagement spectrum construct for physician relationship with their healthcare community or institution. While recognising the importance of physician leaders within the hierarchical system for efficacy of organisational management, relying only on physicians in formal executive positions is insufficient for developing physician engagement. There is a need for widespread physician engagement across the organisation. The objective is both an improvement in patient care and in physician well-being.

Outcomes indicators and processes in transitional care in adolescents with haemophilia: A Delphi survey of Canadian haemophilia care providers.

INTRODUCTION: It is unclear which outcome indicators should be used to measure the success of haemophilia transition programs, and what are key elements of a haemophilia transition program to ensure success. AIM: To establish by expert consensus a list of important and feasible outcome indicators of successful haemophilia transition, and a list of key elements of transition planning. METHODS: A modified two-stage Delphi survey was developed and disseminated among a panel of Canadian interdisciplinary haemophilia care providers. Participants were asked to rate the importance and feasibility of outcome indicators of effective haemophilia transition and elements of haemophilia transition program. In the second round, participants were asked to choose the top five outcomes suitable for inclusion in a core outcome set of transition effectiveness, and the top five elements that are important and feasible for implementation within the next 5 years. RESULTS: In total, 34/73 (47%) of participants completed the first round and 33 completed the second round, representing a variety of disciplines. Top outcome indicators recommended for a core outcome set include measurement of adherence, change in bleeding rate, self-efficacy skills, haemophilia knowledge, patient and caregiver satisfaction, time gap between last paediatric and first adult clinic, and number of emergency room or hospital admissions. Fourteen elements of transition achieved consensus in importance ratings, while eight were felt to be feasible for implementation within next 5 years. CONCLUSIONS: Results will contribute towards the development of a haemophilia transition outcome instrument and provide guidance for future studies of the effectiveness of transition programs.

Canadian Cardiovascular Society Guidelines for Evaluation and Management of Cardiovascular Complications of Cancer Therapy.

Modern treatment strategies have led to improvements in cancer survival, however, these gains might be offset by the potential negative effect of cancer therapy on cardiovascular health. Cardiotoxicity is now recognized as a leading cause of long-term morbidity and mortality among cancer survivors. This guideline, authored by a pan-Canadian expert group of health care providers and commissioned by the Canadian Cardiovascular Society, is intended to guide the care of cancer patients with established cardiovascular disease or those at risk of experiencing toxicities related to cancer treatment. It includes recommendations and important management considerations with a focus on 4 main areas: identification of the high-risk population for cardiotoxicity, detection and prevention of cardiotoxicity, treatment of cardiotoxicity, and a multidisciplinary approach to cardio-oncology. All recommendations align with the Grading of Recommendations Assessment, Development, and Evaluation (GRADE) system. Key recommendations for which the panel provides a strong level of evidence include: (1) that routine evaluation of traditional cardiovascular risk factors and optimal treatment of preexisting cardiovascular disease be performed in all patients before, during, and after receiving cancer therapy; (2) that initiation, maintenance, and/or augmentation of antihypertensive therapy be instituted per the Canadian Hypertension Educational Program guidelines for patients with preexisting hypertension or for those who experience hypertension related to cancer therapy; and (3) that investigation and management follow current Canadian Cardiovascular Society heart failure guidelines for cancer patients who develop clinical heart failure or an asymptomatic decline in left ventricular ejection fraction during or after cancer treatment. This guideline provides guidance to clinicians on contemporary best practices for the cardiovascular care of cancer patients.

Posttraumatic growth in parents caring for a child with a life-limiting illness: A structural equation model.

When parents first meet their child, they take on the entwined joys and burdens of caring for another person. Providing care for their child becomes the basic expectation, during health and illness, through the developmental milestones, into adulthood and beyond. For those parents who have a child who is born with or is later diagnosed with a life-limiting illness, parents also become caregivers in ways that parents of predominantly well children do not. While the circumstances are undisputedly stressful, for some parents benefits can co-occur along with the negative outcomes. This article tests two structural equation models of possible factors that allow these parent caregivers to experience growth in the circumstances. The diagnosis and illness of a child in the context of pediatric palliative care is a very complex experience for parents. The stresses are numerous and life-changing and yet the parents in this research demonstrated growth as measured by the Post Traumatic Growth Inventory. It appears that particular personal resources reflected in personal well-being are a precursor to the process of positive meaning making, which then, in turn, contributes to growth. The path to posttraumatic growth is not a simple one, but this research contributes to further elucidating it.

Paediatric palliative care: a survey of paediatricians and family practitioners.

BACKGROUND: Paediatric palliative care focuses on the enhancement of the quality of life for a child and family through a combination of active and compassionate therapies intended to comfort and support the child and family who are living with a life-threatening illness. The purpose of this study was to assess the experience with and confidence in providing paediatric palliative care of practicing family/general practitioners (GPs) and paediatricians. In addition, the learning needs, modes of learning and their methods of coping/self-care were questioned. METHODS: Two hundred paediatricians and GPs in the province of British Columbia were randomly selected to participate in a mailed survey. The survey consisted of three categories: demographic information, experience and knowledge of paediatric palliative care, educational needs and preferences for learning and provision of their own self-care. RESULTS: The response rate of completed surveys was 56.5%. Only 40.1% of respondents felt their knowledge and experience were adequate. Overall, 73.5% of the respondents reported that they would like to learn more about paediatric palliative care. Over 53% of those surveyed preferred that learning be offered remotely through either internet or correspondence. Seventy-four per cent of respondents expressed they had adequate or very adequate self-care strategies to meet their own needs of well-being. CONCLUSIONS: The results of the survey will guide the paediatric palliative care community to design programmes that will better educate practicing physicians and future physicians about paediatric palliative and end of life care, healthcare services and family communication and support.

A review of pediatric palliative care service utilization in children with a progressive neuromuscular disease who died on a palliative care program.

Recent studies and consensus statements have expressed the need to involve palliative care services in the care of children with progressive neuromuscular diseases (PMD), yet there have been no reviews of the utilization of palliative care services by children who died on a palliative care program. We conducted a retrospective chart review of all children who had a PMD who died on a single-center palliative care program. Twenty cases were identified. Services utilized by these patients included respite care, transition services, pain and symptom management, and end-of-life care. Prominent symptoms in the last 24 hours of life included respiratory distress, pain, nausea/vomiting, and anxiety; however, symptom management was very good. Utilization of services differed depending on the disease trajectory, with respite playing a critical role in the care of children with PMD. Good symptom management can be achieved.

Designing and implementing a longitudinal study of children with neurological, genetic or metabolic conditions: charting the territory.

BACKGROUND: Children with progressive metabolic, neurological, or chromosomal conditions and their families anticipate an unknown lifespan, endure unstable and often painful symptoms, and cope with erratic emotional and spiritual crises as the condition progresses along an uncertain trajectory towards death. Much is known about the genetics and pathophysiology of these diseases, but very little has been documented about the trajectory of symptoms for children with these conditions or the associated experience of their families. A longitudinal study design will help to close this gap in knowledge. METHODS/DESIGN: Charting the Territory is a longitudinal descriptive, correlational study currently underway with children 0-19 years who are diagnosed with progressive neurological, metabolic, or chromosomal conditions and their families. The purpose of the study is to determine and document the clinical progression of the condition and the associated bio-psychosocial-spiritual experiences of the parents and siblings age 7-18 years. Approximately 300 families, both newly diagnosed children and those with established conditions, are being recruited in six Canadian cities. Children and their families are being followed for a minimum of 18 months, depending on when they enroll in the study. Family data collection will continue after the child's death if the child dies during the study period. Data collection includes monthly parental assessment of the child's symptoms; an annual functional assessment of the child; and completion of established instruments every 6 months by parents to assess family functioning, marital satisfaction, health status, anxiety, depression, stress, burden, grief, spirituality, and growth, and by siblings to assess coping and health. Impact of participation on parents is assessed after 1 year and at the end of the study. Chart reviews are conducted at enrollment and at the conclusion of the study or at the time of the child's death. DISCUSSION: Knowledge developed from this study will provide some of the first-ever detailed descriptions of the clinical symptom trajectory of these non-curable progressive conditions and the bio-psychosocial-spiritual aspects for families, from diagnosis through bereavement. Information about developing and implementing this study may be useful to other researchers who are interested in designing a longitudinal study.

The Madison Clinic: Evaluation of a collaborative outpatient paediatric palliative care clinic.

BACKGROUND: A multidisciplinary outpatient clinic at a tertiary care children's hospital supported and staffed by a children's hospice was created to enhance and expand the inpatient palliative care services available to families of children with life-limiting conditions. This clinic was created with input from clinicians, program leaders and families in developing the goals and format. METHOD: The clinic was evaluated with indicators that included program data from palliative care consultations. This information was collected and recorded on a prospective basis. RESULTS: In the first 29 months of operation, 43 clinics were held, 39 individual patients were seen and there were 59 visits. The majority of visits were for pain and symptom management (75%), while 20% were for assessment for the hospice program. The hospice-palliative care team also provided telephone support, videoconference support and inpatient consultations. Patients reported overall satisfaction with their experiences at the clinic. DISCUSSION: A major benefit of this outpatient palliative care clinic is its ability to offer continuity of care for patients and their families. It also serves as a preliminary introduction to palliative care, particularly significant for families who are not yet ready to learn about or engage in the full hospice program.

Families' transition to a Canadian paediatric hospice. Part two: results of a pilot study.

The results from a pilot study are reported in this article, part two of a two-part paper. The experiences of parents (six mothers and two fathers) are described as their families transitioned to the Canuck Place Children's Hospice (CPHC) in Canada. The perspectives of non-hospice health care professionals (n=4) involved in the child's care are explored. Data were gathered through audio-taped, semi-structured interviews. Initially, parents and health professionals were unaware that the hospice provided more than just end-of-life services. Parents began to consider hospice care when something changed in their lives that forced them to see things differently. This became the impetus for recognizing that CPCH might be a resource for their family. The prospect of respite care was usually the deciding factor in applying to the hospice. Parents reported benefits of hospice respite for themselves and the whole family. Recommendations for practice and future research are offered, including discussion about the feasibility of the study procedures.

The volunteer program in a Children's Hospice.

BACKGROUND: Canuck Place Children's Hospice (CPCH) is regarded as one of the leading pediatric palliative care systems in the world. Since 1995, it has been providing hospice care free of charge to children and their families living with life-threatening conditions. The pediatric palliative hospice is a relatively new practice in health care, in comparison to the longstanding adult model. As a result, development and implementation of volunteer programs in pediatric hospices is not currently represented in literature. With over 300 volunteers at present, CPCH has built a successful program that can serve as a model in pediatric volunteer services. OBJECTIVE: To present the unique volunteer roles and experience at CPCH, and share ways volunteers work to support the efforts of the clinical team. Strategies to address current challenges in the volunteer program are also addressed. DESIGN: Descriptive design. SETTING/SUBJECTS: A current CPCH volunteer discusses the volunteer program. Interviews were conducted with the founding volunteer director of CPCH and current volunteers. CONCLUSIONS: The volunteer program at CPCH fully embraces the life of each child and family. Volunteer selection is the groundwork for ensuring a cohesive work force, while training equips volunteers with the knowledge to carry out their role with confidence. Areas of improvement that have been recognized include offering effective feedback to volunteers and delivering adequate level of training for non-direct care roles. The talents of volunteers at CPCH are diverse, and CPCH aims to recognize and thank volunteers for their continuous contributions.

Families' transition to a Canadian paediatric hospice. Part one: planning a pilot study.

This article describes the rationale for planning and conducting a qualitative pilot study about families' transition to a Canadian paediatric hospice. Discussion includes: background information and a literature review pertinent to the study; debate around the term 'hospice' versus 'palliative care'; the different and unique needs of children requiring a palliative approach compared with adult hospice patients; and information about planning and beginning the study, including the rationale for a pilot, details about the study site, recruitment and procedures, and data collection and analysis. The results from the pilot study, as well as implications for practice and research are reported in part two.

Benefit of Neoral C2 monitoring in de novo cardiac transplant recipients receiving basiliximab induction.

BACKGROUND: For cyclosporine (CsA), 2-hr postdose level (C2) is the best single time point predictor of the area under the curve and a critical measure for effective dosing. The therapeutic CsA microemulsion (Neoral) C2 range in de novo heart transplant patients remains to be determined. PURPOSE: The purpose of this study was to determine the efficacy of CsA C2 monitoring in de novo heart transplant patients receiving basiliximab induction. METHODS: This prospective, multicenter, randomized study enrolled 87 adult heart transplant recipients stratified according to 4 to 6 hrs posttransplant serum creatinine less than or equal to 170 micromol/L (cohort A) or more than 170 micromol/L (cohort B). Patients in cohort A were randomized into three C2 ranges (A1: "high" n=25, 1600-1800 ng/mL; A2: "intermediate" n=27, 1400-1600 ng/mL; and A3: "low" n=24, 1200-1400 ng/mL). Patients in cohort B were randomized into intermediate (n=5) and low C2 (n=6). Target ranges were progressively lowered after 1 month. Immunosuppression included basiliximab, Neoral, mycophenolate mofetil, and corticosteroids. Endpoints were acute rejection and renal function. RESULTS: The incidence of acute rejection at 12 months was 44% in group A1, 41% in group A2, 33% in group A3, and 27% in cohort B. Pretransplant and 12-month creatinine clearance (mL/min) were group A1, 72+/-25 and 64+/-24; group A2, 81+/-32 and 68+/-25; group A3, 91+/-28 and 86+/-26; and cohort B, 62+/-28 and 79+/-37. CONCLUSION: These results suggest that C2 monitoring is safe in de novo heart transplant patients. A low Neoral C2 range in combination with basiliximab induction resulted in preserved renal function without increased risk of acute rejection.

Research priorities in pediatric palliative care: a Delphi study.

BACKGROUND: Pediatric palliative care is increasingly recognized to be a specialized type of care requiring specific skills and knowledge, yet, as found in several countries, there is little available research evidence on which to base care. OBJECTIVES: The goal of the project was to achieve consensus among palliative care practitioners and researchers regarding the identification of pertinent lines of research. METHOD: A Delphi technique was used with an interdisciplinary panel (n = 14-16) of researchers and frontline clinicians in pediatric palliative care in Canada. RESULTS: Four priority research questions were identified: What matters most for patients and parents receiving pediatric palliative services? What are the bereavement needs of families in pediatric palliative care? What are the best practice standards in pain and symptom management? What are effective strategies to alleviate suffering at the end of life? CONCLUSIONS: These identified priorities will provide guidance and direction for research efforts in Canada, and may prove useful in providing optimal care to patients and families in pediatric palliative care.