Search Results (30)

Introduction: Racial and ethnic disparities in end-of-life (EOL) cancer care persist, leading to lower rates of advance care planning (ACP), reduced access to palliative care, and poorer patient outcomes for minority populations. While previous research has documented these inequities, less is known about the specific interventions developed to address them, necessitating a comprehensive review of existing strategies aimed at improving EOL care for racial and ethnic populations. The objective of this scoping review is to examine the extent and characteristics of interventions and their outcomes designed to address racial and ethnic disparities in EOL cancer care in the United States. Methods: A comprehensive search of EOL cancer care interventions for minority populations was conducted in Ovid MEDLINE, CINAHL with Full Text (EBSCOhost), and Scopus (Elsevier) in September 2024. Two independent reviewers screened titles, abstracts, and full texts following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) guidelines, with inclusion limited to studies conducted in the US and published in English. Results: Of 3104 screened studies, 10 met the inclusion criteria. Participants enrolled were only from Latino (n = 6 studies) or Black (n = 4 studies) populations. We identified four types of interventions, including communication skills for patients, caregivers, researchers, and clinicians (n = 2), education programs for patients (n = 1), navigation and support programs for patients and caregivers (n = 3), and training programs for health workers and community leaders (n = 4). The most effective interventions were those that addressed linguistic barriers, integrated cultural values, and involved trusted community figures. Faith-based models were particularly successful among African American patients, while bilingual navigation and family-centered ACP interventions had the greatest impact in Latino populations. Conclusions: This review highlights (1) the importance of culturally tailored interventions for specific minority populations and (2) the limited number of such interventions, which primarily target only the largest minority groups. Full article

On behalf of the Canadian Association of Psychosocial Oncology, we are pleased to present the Abstracts from the 2025 Annual Conference, titled “Responding to the Human Experience of Cancer and Caring for the Soul: Building on 40 years of global leadership in psychosocial oncology”. The 40th Annual CAPO Conference was held in Toronto from 23 April 2025 to 25 April 2025. In an era marked by the rapid advancement of biologically focused precision medicine, it is imperative to redirect our attention towards the human experience of illness and the soul of medicine. Biomedicine has conceptualized illness in ways that have proved profoundly productive from a curative and biological point of view. But it cannot—and it does not pretend to—illuminate the experience of living with it. (Hurwitz 2009). This conference aims to delve into the intricate interplay between cutting-edge biomedical technologies inclusive of artificial intelligence and big data and the deeply personal narratives of individuals navigating illness. By shifting the focus from mere disease pathology to encompassing the holistic human experience, we aspire to foster a more compassionate and patient-centered approach to healthcare with psychosocial support at the core of humanistic care that can improve survival and well-being in all aspects of a whole-person approach to illness. Through interdisciplinary dialogue and introspection, we endeavor to illuminate the profound connection between mind, body, and spirit in the practice of medicine, reaffirming the timeless significance of empathy, understanding, and human connection in healing and psychosocial aspects of care as fundamental to living well with cancer. This conference brought together key stakeholders including multidisciplinary professionals from nursing, psychology, psychiatry, social work, spiritual care, nutrition, medicine, rehabilitation medicine, occupational health and radiation therapy for both adult and pediatric populations. Participants included clinicians, researchers, educators in cancer care, community-based organizations and patient representatives. Patients, caregivers and family members presented abstracts that speak to their role in managing cancer experiences and care. Over two hundred (200) abstracts were submitted for presentation as symposia, 20-minute oral presentations, 10-minute oral presentations, 90-minute workshops and poster presentations. We congratulate all the presenters on their research work and contribution. Full article

Solid organ transplantation entails numerous complex medical and ethical decisions. Shared decision-making (SDM) has been advocated as the optimal model for navigating these decisions, providing a collaborative framework that enhances person-centered care. This approach involves patients, caregivers, and healthcare professionals in the decision-making process, ensuring that clinical decisions align with patient preferences, values, and individual circumstances alongside clinical indications. This paper reviews the implementation of SDM throughout the transplantation journey, from diagnosis and transplant referral, pre-transplant assessments, waiting lists, to the organ offer, perioperative period, and long-term follow-up. Barriers to SDM include factors at the patient, provider, and system levels, including inadequate patient–provider communication. Effective SDM requires tailored educational resources, prognostic tools, clinician training, collaborative care models, and supportive policies. Additionally, leveraging technology, such as artificial intelligence and mobile applications, can enhance patient engagement and decision quality. SDM promotes equity by involving all patients—including those from more vulnerable groups—in meaningful conversations about their treatment options, thereby mitigating disparities in access and outcomes. Future research should focus on the long-term impacts of SDM interventions, the development of comprehensive prognostic tools incorporating patient-reported outcomes, and systemic changes to integrate SDM into clinical practice, aiming to improve patient outcomes and person-centered care. Full article

Background: Since 2023, ChatGPT-4 has been impactful across several sectors including healthcare, where it aids in medical information analysis and education. Electronic patient-reported outcomes (ePROs) play a crucial role in monitoring cancer patients’ post-treatment symptoms, enabling early interventions. However, managing the voluminous ePRO data presents significant challenges. This study assesses the feasibility of utilizing ChatGPT-4 for analyzing side effect data from ePROs. Methods: Thirty cancer patients were consecutively collected via a web-based ePRO platform, reporting side effects over 4 weeks. ChatGPT-4, simulating oncologists, dietitians, and nurses, analyzed this data and offered improvement suggestions, which were then reviewed by professionals in those fields. Results: Two oncologists, two dieticians, and two nurses evaluated the AI’s performance across roles with 540 reviews. ChatGPT-4 excelled in data accuracy and completeness and was noted for its empathy and support, enhancing communication and reducing caregiver stress. It was potentially effective as a dietician. Discussion: This study offers preliminary insights into the feasibility of integrating AI tools like ChatGPT-4 into ePRO cancer care, highlighting its potential to reduce healthcare provider workload. Key directions for future research include enhancing AI’s capabilities in cancer care knowledge validation, emotional support, improving doctor-patient communication, increasing patient health literacy, and minimizing errors in AI-driven clinical processes. As technology advances, AI holds promise for playing a more significant role in ePRO cancer care and supporting shared decision-making between clinicians and patients. Full article

(1) Background: Despite the recognized importance of the patient–doctor relationship (PDR) for pediatric diabetes management, the literature presents diverse and emerging findings regarding its impact on treatment outcomes for children with type 1 diabetes (T1D). (2) Methods: Using a meta-analytic approach, a comprehensive search for relevant studies was conducted across major databases, from the earliest study to June 2024. Inclusion criteria were studies on PDR and T1D outcomes in underaged individuals, providing quantitative results. (3) Results: Fifteen reports were included, showing a small but significant overall effect size (r = 0.165, p < 0.05) of PDR on T1D outcomes. Moderator analyses revealed significant associations from elements of PDR, duration of diagnosis, outcome assessment methods, information reporters, and being Caucasian. Demographic variables like gender, age, not being Caucasian, and caregiver’s marital status did not significantly impact the association. Specific elements of PDR, such as clinician’s objectives, communication, partnership, respect, and supportive care, showed significant positive effect sizes, while telecommunication did not. (4) Conclusions: A strong PDR is essential for managing diabetes in children, particularly in the early years of diagnosis. Future studies should use quantitative designs and include diverse demographics to better understand PDR’s connection to T1D outcomes. Full article

(1) Background: Acute pain in hospitalized children remains under-recognized and under-treated. Our objective is to benchmark pain assessment, documentation, treatment, and patient experience in children admitted to a US children’s hospital. (2) Methods: A cross-sectional, mixed-method survey of pain for children hospitalized ≥24 h. Charts were reviewed for modalities of pain assessment and treatment for all inpatients. If pain was documented, patients/caregivers were surveyed regarding their experience with pain and its management. (3) Results: Chart review: All 107 patients had ≥1 pain score documented. A total of 47 patients had a pain score ≥0, 35 (74.5%) of whom had ≥1 moderate-severe score. Seventy (65.4%) patients received ≥1 intervention for pain, including medications from ≥1 class (e.g., opioids) (n = 55, 51.4%) and/or integrative/non-pharmacologic intervention(s) (n = 39, 36.4%). There were assessment and documentation gaps. Patient survey: A total of 39 (83.0%) interviews were attempted; 25 (53.2%) were completed. The worst pain was mostly caused by acute illness (n = 13, 52%) and painful procedures (n = 10, 40%). Suggestions for improvement included increasing the use of integrative modalities and optimizing patient–clinician communication. (4) Conclusions: All patients admitted ≥24 h had ≥1 pain score documented; however, gaps in documentation were common. Multimodal treatment and integrative modalities were underutilized. Procedures were a frequent cause of under-treated pain, prompting an institution-wide quality improvement project. Full article

On behalf of the Canadian Association of Psychosocial Oncology, we are pleased to present the Abstracts from the 2024 Annual Conference, titled “Building Hope: Integrating Sustainable, Innovative and Accessible Care in Psychosocial Oncology”. The Conference was held in Calgary from 6 June 2024 to 7 June 2024. This conference brought together key stakeholders including multidisciplinary professionals from nursing, psychology, psychiatry, social work, spiritual care, nutrition, medicine, rehabilitation medicine, occupational health and radiation therapy for both adult and pediatric populations. Participants included clinicians, researchers, educators in cancer care, community-based organizations and patient representatives. Patients, caregivers and family members presented abstracts that speak to their role in managing cancer experiences and care. Over one hundred (150) abstracts were selected for presentation as symposia, 20 min oral presentations, 10 min oral presentations, 90 min workshops and poster presentations. We congratulate all the presenters on their research work and contribution. Full article

Autism Spectrum Disorder (ASD) encompasses a wide range of neurodevelopmental conditions characterized by deficits in social interaction, communication and behavior. Current pharmacological options are limited and feature significant side effects. In this study, we conducted a retrospective, observational, and cross-sectional cohort study to evaluate the effects of Cannabidiol (CBD)-dominant, full-spectrum cannabis extract, containing Tetrahydrocannabinol (THC) in a ratio of 33:1 (CBD:THC), on non-syndromic children and adolescents (5–18 years old) with moderate to severe ASD. Thirty volunteers were recruited, underwent neuropsychological evaluations and were treated with individualized doses of CBD-dominant extract. Clinical assessments were conducted by the designated clinician. Additionally, parents or caregivers were independently interviewed to assess perceived treatment effects. We found significant improvements in various symptomatic and non-symptomatic aspects of ASD, with minimal untoward effects, as reported by both clinical assessments and parental perceptions. The observed improvements included increased communicative skills, attention, learning, eye contact, diminished aggression and irritability, and an overall increase in both the patient’s and family’s quality of life. Despite its limitations, our findings suggest that treatment with full-spectrum CBD-dominant extract may be a safe and effective option for core and comorbid symptoms of ASD, and it may also increase overall quality of life for individuals with ASD and their families. Full article

Adolescents and young adults (AYAs; 15–39 years) diagnosed with cancer have unique medical and psychosocial needs. These needs could be better addressed through research that is focused on the topics that matter most to them. However, there is currently no patient-oriented research agenda for AYA cancer in Canada. This manuscript describes the early development and project protocol for a priority-setting partnership (PSP) for establishing the top 10 research priorities for AYA cancer in Canada. This project follows the PSP methodology outlined by the James Lind Alliance (JLA) to engage patients, caregivers, and clinicians in research prioritization. The steps of a JLA PSP include establishing a steering group and project partners, gathering uncertainties, data processing and verifying uncertainties, interim priority setting, and a final priority setting workshop. The AYA cancer PSP will result in a top 10 list of research priorities identified by Canadian AYA patients, caregivers, and clinicians that will be published and shared broadly with the research community. The first steering group meeting was held in April 2023, and the project is ongoing. The establishment of a patient-oriented research agenda for AYA cancer will catalyze a long-term and impactful research focus and ultimately improve outcomes for AYA patients with cancer in Canada. Full article

Timely, effective, and individualised dietary interventions are essential for patients undergoing dialysis. However, delivery of dietary advice is challenging due to limited access to renal dietitians, as well as logistic and scheduling difficulties for patients receiving dialysis. The objectives of this study were to explore consumer perspectives regarding dietary advice utilising telehealth technology. Twenty-two participants (seventeen patients receiving dialysis, five caregivers) were purposively recruited from a local dialysis centre and participated in one of three focus groups. Each focus group was recorded, transcribed, and analysed using inductive thematic analysis. One overarching theme: “a desire to learn” was apparent. The four themes that facilitated this process are herein described: Meaningful communication—a need for improved and individualised communication about diet using positively framed messages with consistency among clinicians. Conducive information—a preference for tailored, current, and clear dietary information (plain language was preferred, with practical advice on making dietary changes). Appropriate timing—health advice at the right time (consumers felt overwhelmed, not supported enough with timely advice, and experienced difficulty attending appointments in addition to dialysis treatments). Contemporary modalities—delivering information using different technologies (consumers preferred a combination of delivery methods for dietetic advice including text/SMS/App messages as an adjunct to face-to-face care). The results showed that consumers believe that telehealth options are an acceptable adjunct to receive dietary advice in a timely manner, and feedback from patients and caregivers has informed the design of a clinical trial to incorporate the use of telehealth to improve the management of serum phosphate. Full article

On behalf of the Canadian Association of Psychosocial Oncology, we are pleased to present the Abstracts from the 2023 Annual Conference, titled “Co-designing Psychosocial Oncology: Optimizing Outcomes for All”. The conference was held in Montreal from 20 June 2023 to 22 June 2023. This conference brought together key stakeholders including multidisciplinary professionals from nursing, psychology, psychiatry, social work, spiritual care, nutrition, medicine, rehabilitation medicine, occupational health and radiation therapy for both adult and pediatric populations. Participants included clinicians, researchers, educators in cancer care, community-based organizations and patient representatives. Patients, caregivers and family members presented abstracts that spoke to their role in managing cancer experiences and care. Over one hundred (100) abstracts were selected for presentation as symposia, 20-min oral presentations, 10-min oral presentations, 90-min workshops and poster presentations. We congratulate all the presenters on their research work and contribution. Full article

Background: Mild traumatic brain injury (MTBI) causes morbidity and disability worldwide. Pediatric patients are uniquely vulnerable due to developmental and psychosocial factors. Reduced healthcare access in rural/underserved communities impair management and outcome. A knowledge update relevant to current gaps in care is critically needed to develop targeted solutions. Methods: The National Library of Medicine PubMed database was queried using comprehensive search terms ((“mild traumatic brain injury” or “concussion”) and (“rural” or “low-income” or “underserved”) and (“pediatric” or “child/children”)) in the title, abstract, and Medical Subject Headings through December 2022. Fifteen articles on rural/underserved pediatric MTBI/concussion not covered in prior reviews were examined and organized into four topical categories: epidemiology, care practices, socioeconomic factors, and telehealth. Results: Incidences are higher for Individuals in rural regions, minorities, and those aged 0–4 years compared to their counterparts, and are increasing over time. Rural healthcare utilization rates generally exceed urban rates, and favor emergency departments (vs. primary care) for initial injury assessment. Management guidelines require customization to resource-constrained settings for implementation and adoption. Decreased community recognition of the seriousness of injury is a consensus challenge to care provision by clinicians. Low parental education and income were correlated with decreased MTBI knowledge and worse outcome. Telehealth protocols for triage/consultation and rehabilitation were feasible in improving care delivery to rural and remote settings. Conclusions: Pediatric MTBI/concussion patients in rural/underserved regions experience increased risks of injury, geographic and financial healthcare barriers, and poorer outcomes. Globally, under-reporting of injury has hindered epidemiological understanding. Ongoing MTBI education should be implemented for rural caregivers, schools, and low-income populations to improve community awareness. Telehealth can improve care delivery across acuity settings, and warrants judicious inclusion in triage and treatment protocols. Full article

Optimal care for pediatric and adolescent patients is carried out under a triadic engagement model, whereby the patient, caregiver, and clinician work in collaboration. Seeking input from all triad members in the development and implementation of clinical trials and interventions may improve health outcomes for children and adolescents. Sufficient evidence demonstrating how to effectively engage stakeholders from all branches of this triadic model is lacking. We address this gap by describing the successes and challenges our team has encountered while convening advisory groups with adolescent patients, parent stakeholders, and their clinicians to assist in the development and deployment of a technology-based intervention to promote the utilization of sexual and reproductive health services by increasing adolescent–clinician alone-time. Each stakeholder group contributed in unique and complementary ways. Working with advisors, our team aligned the priorities of each group with the goals of the research team. The results were improvements made in the content, design, and delivery of the TRUST intervention. While we were largely successful in the recruitment and engagement of adolescent patients and clinicians, we had less success with parents. Future research will need to explore additional strategies for recruitment and engagement of parents, particularly in rural, minority, and underserved communities. Full article

Aligning treatment with patients’ self-determined goals and health priorities is challenging in dementia care. Wearable-based remote health monitoring may facilitate determining the active participation of individuals with dementia towards achieving the determined goals. The present study aimed to demonstrate the feasibility of using wearables to assess healthcare goals set by older adults with cognitive impairment. We present four specific cases that assess (1) the feasibility of using wearables to monitor healthcare goals, (2) differences in function after goal-setting visits, and (3) goal achievement. Older veterans (n = 17) with cognitive impairment completed self-report assessments of mobility, then had an audio-recorded encounter with a geriatrician and wore a pendant sensor for 48 h. Follow-up was conducted at 4–6 months. Data obtained by wearables augments self-reported data and assessed function over time. Four patient cases illustrate the utility of combining sensors, self-report, notes from electronic health records, and visit transcripts at baseline and follow-up to assess goal achievement. Using data from multiple sources, we showed that the use of wearable devices could support clinical communication, mainly when patients, clinicians, and caregivers work to align care with the patient’s priorities. Full article

The SARS-CoV-2 (COVID-19) pandemic has accelerated the development and use of digital health platforms to support individuals with health-related challenges. This is even more frequent in the field of cancer care as the global burden of the disease continues to increase every year. However, optimal implementation of these platforms into the clinical setting requires careful planning and collaboration. An implementation project was launched between the Centre intégré universitaire de santé et de services sociaux (CIUSSS) du Centre-Ouest-de-I’Île-de-Montreal and BELONG—Beating Cancer Together—a person-centred cancer navigation and support digital health platform. The goal of the project was to implement content and features specific to the CIUSSS, to be made available exclusively for individuals with cancer (and their caregivers) treated at the institution. Guided by Structural Model of Interprofessional Collaboration, we report on implementation processes involving diverse stakeholders including clinicians, hospital administrators, researchers and local community/patient representatives. Lessons learned include earlier identification of shared goals and clear expectations, more consistent reliance on virtual means to communicate among all involved, and patient/caregiver involvement in each step to ensure informed and shared decision making. Full article