Patient-Centered Adult Cardiovascular Care: A Scientific Statement From the American Heart Association.

Patient-centered care is gaining widespread acceptance by the medical and lay communities and is increasingly recognized as a goal of high-quality health care delivery. Patient-centered care is based on ethical principles and aims at establishing a partnership between the health care team and patient, family member, or both in the care planning and decision-making process. Patient-centered care involves providing respectful care by tailoring management decisions to patients' beliefs, preferences, and values. A collaborative care approach can enhance patient engagement, foster shared decision-making that aligns with patient values and goals, promote more personalized and effective cardiovascular care, and potentially improve patient outcomes. The objective of this scientific statement is to inform health care professionals and stakeholders about the role and impact of patient-centered care in adult cardiovascular medicine. This scientific statement describes the background and rationale for patient-centered care in cardiovascular medicine, provides insight into patient-oriented medication management and patient-reported outcome measures, highlights opportunities and strategies to overcome challenges in patient-centered care, and outlines knowledge gaps and future directions.

Shared Decision-Making and Cardiovascular Health: A Scientific Statement From the American Heart Association.

Shared decision-making is increasingly embraced in health care and recommended in cardiovascular guidelines. Patient involvement in health care decisions, patient-clinician communication, and models of patient-centered care are critical to improve health outcomes and to promote equity, but formal models and evaluation in cardiovascular care are nascent. Shared decision-making promotes equity by involving clinicians and patients, sharing the best available evidence, and recognizing the needs, values, and experiences of individuals and their families when faced with the task of making decisions. Broad endorsement of shared decision-making as a critical component of high-quality, value-based care has raised our awareness, although uptake in clinical practice remains suboptimal for a range of patient, clinician, and system issues. Strategies effective in promoting shared decision-making include educating clinicians on communication techniques, engaging multidisciplinary medical teams, incorporating trained decision coaches, and using tools (ie, patient decision aids) at appropriate literacy and numeracy levels to support patients in their cardiovascular decisions. This scientific statement shines a light on the limited but growing body of evidence of the impact of shared decision-making on cardiovascular outcomes and the potential of shared decision-making as a driver of health equity so that everyone has just opportunities. Multilevel solutions must align to address challenges in policies and reimbursement, system-level leadership and infrastructure, clinician training, access to decision aids, and patient engagement to fully support patients and clinicians to engage in the shared decision-making process and to drive equity and improvement in cardiovascular outcomes.

"To prescribe or not to prescribe, that is the question": Perspectives on opioid prescribing for chronic, cancer-related pain from clinicians who treat pain in survivorship.

BACKGROUND: Opioid pain management in cancer survivorship is a complex and understudied topic. METHODS: The authors conducted in-depth, qualitative interviews to understand clinician approaches to opioid pain management in chronic cancer pain and to generate ideas for improvement. They used a rigorous, inductive, qualitative, descriptive approach to examine clinician (n = 20) perspectives about opioid pain management in survivorship, including oncologists (n = 5), palliative care clinicians (n = 8), primary care clinicians (n = 5), and pain management specialists (n = 2). RESULTS: The findings indicated that no consistent medical home exists for chronic pain management in cancer survivors and that there are fundamental differences in how each subspecialty approaches chronic pain management in survivorship (e.g., "Do we think of this as noncancer pain or cancer pain?… This is in this limbo zone-this gray zone-because it's cancer-related pain, right?"). Simultaneously, clinicians are influenced by their peers' perceptions of their opioid prescribing decisions, sparking intraprofessional tension when disagreement occurs. In these instances, clinicians described overthinking and doubting their clinical decision-making as well as a sense of judgment, pressure, and/or shame. Finally, clinicians acknowledged a fear of consequences for opioid prescribing decisions. Specifically, participants cited conflict with patients, sometimes escalating to aggression and threats of violence, as well as potential disciplinary actions and/or legal consequences. CONCLUSIONS: Participants suggested that opportunities to improve chronic cancer pain care include developing clear, systematic guidance for chronic cancer pain management, facilitating clinician communication and consultation, creating tailored survivorship care plans in partnership with patients, and developing accessible, evidence-based, complementary pain treatments.

Identifying the drivers of overall rating of cancer care: Insights from the second wave of the Swiss Cancer Patient Experiences study.

BACKGROUND: Patient experience surveys gather information on various aspects of care via numerous survey items. Identifying the most critical areas of patient experience to prioritize for quality care improvement can be challenging. The objective of this study was to determine which care experience items are the drivers influencing patients' overall rating of cancer care. METHODS: Data from 2750 adult patients with cancer from the second wave of the Swiss Cancer Patient Experiences study were analyzed. This cross-sectional survey was conducted in eight Swiss hospitals from September 2021 to February 2022. Stepwise logistic regression examined the relationship between overall care rating and 29 patient experience items covering different patient-centered care dimensions while adjusting for sociodemographic and health variables. RESULTS: Overall, patients rated their cancer care experience at 8.9 out of 10. Stepwise regression identified seven drivers contributing to overall care rating. The strongest drivers were "professionals worked well together" (odds ratio [OR], 4.81) and "tests were not repeated" (OR, 2.09) from the coordination and integration dimension, "offered support for symptoms during treatment" (OR, 2.11) from the physical comfort dimension, followed by "hospital staff ensured available home support" (OR, 1.99), "offered to see health professional for concerns" (OR, 1.91), "treatment options were explained" (OR, 1.75), and "involved in treatment decisions as desired" (OR, 1.68). CONCLUSIONS: This study evaluated the care experiences of patients with cancer with a comprehensive tool that identified seven key factors independently associated with overall care rating. By concentrating on these areas, hospitals can not only improve the patient care experience but also efficiently allocate resources to quality improvement initiatives.

Integrating Patient-Reported Outcomes Into Prognostication in Gastroesophageal Cancer: Results of a Population-Based Retrospective Cohort Analysis.

BACKGROUND: Patient-reported outcomes measures (PROM) are self-reflections of an individual's physical functioning and emotional well-being. The Edmonton Symptom Assessment Scale (ESAS) is a simple and validated PRO tool of 10 common symptoms and a patient-reported functional status (PRFS) measure. The prognostic value of this tool is unknown in patients with gastroesophageal cancer (GEC). In this study, we examined the association between the ESAS score and overall survival (OS) in patients with GEC, the prognostication difference between ESAS and Eastern Cooperative Oncology Group (ECOG), and assessed the correlation between PRFS and the physician-reported ECOG performance status (PS). METHODS: The study was a retrospective cohort study of 211 patients with GEC with localized (stages I-III) and metastatic disease who completed at least one baseline ESAS prior to treatment. Patients were grouped into 3 cohorts based on ESAS score. OS was assessed using the Kaplan-Meier method, and the concordance index (c-index) was calculated for ESAS and physician-reported ECOG. The agreement between PRFS and physician-ECOG was also assessed. RESULTS: In total, 211 patients were included. The median age was 60.8 years; 90% of patients were ECOG PS 0-1; 38% of patients were stages I-III, while 62% were de novo metastatic patients. Median OS in low, moderate, high symptom burden (SB) patients' cohorts was 19.17 m, 16.39 mm, and 12.68 m, respectively (P < .04). The ability to predict death was similar between physician-ECOG and ESAS (c-index 0.56 and 0.5753, respectively) and PRFS and physician-ECOG (c-index of 0.5615 and 0.5545, respectively). The PS agreement between patients and physicians was 50% with a weighted Kappa of 0.27 (95% CI: 0.17-0.38). CONCLUSION: Patient's SB seems to carry a prognostic significance. ESAS and physician-reported ECOG exhibit comparable prognostic values. Physicians and patients can frequently have divergent opinions on PS. ESAS takes a patient-centered approach and should be encouraged in practice among patients with GEC as an additional tool for prognostication.

Obesity treatment in adolescents and adults in the era of personalized medicine.

In this multi-professional review, we will provide the in-depth knowledge required to work in the expanding field of obesity treatment. The prevalence of obesity has doubled in adults and quadrupled in children over the last three decades. The most common treatment offered has been lifestyle treatment, which has a modest or little long-term effect. Recently, several new treatment options-leading to improved weight loss-have become available. However, long-term care is not only about weight loss but also aims to improve health and wellbeing overall. In the era of personalized medicine, we have an obligation to tailor the treatment in close dialogue with our patients. The main focus of this review is new pharmacological treatments and modern metabolic surgery, with practical guidance on what to consider when selecting and guiding the patients and what to include in the follow-up care. Furthermore, we discuss common clinical challenges, such as patients with concurrent eating disorder or mental health problems, and treatment in the older adults. We also provide recommendations on how to deal with obesity in a non-stigmatizing way to diminish weight stigma during treatment. Finally, we present six microcases-obesity treatment for persons with neuropsychiatric disorders and/or intellectual disability; obesity treatment in the nonresponsive patient who has "tried everything"; and hypoglycemia, abdominal pain, and weight regain after metabolic surgery-to highlight common problems in weight-loss treatment and provide personalized treatment suggestions.

Perspectives of people with HIV and HIV clinicians on characteristics of antiretroviral treatment and HIV-related symptoms.

OBJECTIVES: We aimed to assess HIV symptoms from the perspective of both patients and HIV specialists and the impact of discontinuing antiretroviral treatment (ART) on symptomology. We gathered opinions from HIV specialists and people living with HIV about ideal ART parameters and treatment satisfaction. METHODS: Ex post-facto cross-sectional surveys were administered to 502 people living with HIV and 101 HIV clinicians in Spain (18 sites). RESULTS: The median age of participants with HIV was 43.2 years, 74.5% were male, and 91.6% had an undetectable viral load. The mean time since initiation of ART was 10.2 years. Between 54% and 67% of people living with HIV reported experiencing nervousness or anxiety, sadness, fatigue, sleep problems, or muscle/joint pain during the preceding 4 weeks. However, only 22%-27% of specialists acknowledged the presence of these symptoms. The most bothersome symptoms were related to mental health or the central nervous system. There were significant differences between the burden of symptoms reported by people living with HIV and those acknowledged by specialists. The symptoms that more frequently caused ART discontinuation were depression, dizziness, and sleep problems. Both people living with HIV and specialists prioritized ART efficacy and low toxicity, but their importance ratings differed for 5 of the 11 ART characteristics assessed. People living with HIV rated their satisfaction with ART at a mean (± standard deviation) of 8.9 ± 1.5 out of 10, whereas HIV specialists rated it lower, at 8.3 ± 0.7 (p < 0.001). CONCLUSIONS: Despite advances in HIV care and treatment, a large proportion of patients still experience symptoms. HIV specialists may not be fully aware of these. People living with HIV and HIV specialists are, overall, satisfied with ART. However, the importance they place on different ART characteristics may vary.

Patient, Parental, and Health Professional Perspectives on Growth in Children With CKD.

RATIONALE & OBJECTIVE: Growth failure is a common problem among children with chronic kidney disease (CKD). Reduced height is associated with psychosocial burden, social stigma, and impaired quality of life. This study aimed to describe the aspects of growth impairment that are most impactful from the perspectives of children with CKD, their parents, and health professionals. STUDY DESIGN: Qualitative study. SETTINGS & PARTICIPANTS: 120 children with CKD (aged 8-21 years), 250 parents, and 445 health professionals from 53 countries participated in 16 focus groups, two consensus workshops, and a Delphi survey. ANALYTICAL APPROACH: A thematic analysis of all qualitative data concerning growth from the Standardized Outcomes in Nephrology - Children and Adolescents (SONG-Kids) initiative. RESULTS: We identified five themes: diminishing psychological wellbeing (compared to and judged by peers, tired of explaining to others, damaging self-esteem), constrained life participation and enjoyment (deprived of normal school experiences, excluded from sports or competing at a disadvantage, impaired quality of life in adulthood); grappling with impacts of symptoms and treatment (difficulty understanding short stature and accessing help, lack of appetite, uncertainty regarding bone pains, medication side effects, burden of growth hormone treatment); facilitating timely interventions and optimizing outcomes (early indicator of disease, assessing management, maximizing transplant outcomes, minimizing morbidity); and keeping growth and health priorities in perspective (quality of life and survival of utmost priority, achieved adequate height). LIMITATIONS: Only English-speaking participants were included. CONCLUSIONS: Impaired growth may diminish psychological wellbeing, self-esteem, and participation in daily activities for children with CKD. Balancing different treatments that can affect growth complicates decision-making. These findings may inform the psychosocial support needed by children with CKD and their caregivers to address concerns about growth.

Changes in Patient-Reported Outcomes Associated with Receiving Whole Health in the Veteran Health Administration (VHA)'s National Demonstration Project.

BACKGROUND: Whole Health (WH) is a patient-centered model of care being implemented by the Veterans Health Administration. Little is known about how use of WH services impacts patients' health and well-being. OBJECTIVE: We sought to assess the association of WH utilization with pain and other patient-reported outcomes (PRO) over 6 months. DESIGN: A longitudinal observational cohort evaluation, comparing changes in PRO surveys for WH users and Conventional Care (CC) users. Inverse probability of treatment weighting was used to balance the two groups on observed demographic and clinical characteristics. PARTICIPANTS: A total of 9689 veterans receiving outpatient care at 18 VA medical centers piloting WH. INTERVENTIONS: WH services included goal-setting clinical encounters, Whole Health coaching, personal health planning, and well-being services. MAIN OUTCOME MEASURES: The primary outcome was change in pain intensity and interference at 6 months using the 3-item PEG. Secondary outcomes included satisfaction, experiences of care, patient engagement in healthcare, and well-being. KEY RESULTS: By 6 months,1053 veterans had utilized WH and 3139 utilized only CC. Baseline pain PEG scores were 6.2 (2.5) for WH users and 6.4 (2.3) for CC users (difference p = 0.028), improving by - 2.4% (p = 0.006) and - 2.3% (p < 0.001), respectively. In adjusted analyses, WH use was unassociated with greater improvement in PEG scores compared to CC - 1.0% (- 2.9%, 1.2%). Positive trends were observed for 8 of 15 exploratory outcomes for WH compared to CC. WH use was associated with greater improvements at 6 months in likelihood to recommend VA 2.0% (0.9%, 3.3%); discussions of goals 11.8% (8.2%, 15.5%); perceptions of healthcare interactions 2.5% (0.4%, 4.6%); and engagement in health behaviors 2.2% (0.3%, 3.9%). CONCLUSION: This study provides early evidence supporting the delivery of WH patient-centered care services to improve veterans' experiences of and engagement in care. These are important first-line impacts towards the goals of better overall health and well-being outcomes for Veterans.

Tackling Guideline Non-concordance: Primary Care Barriers to Incorporating Life Expectancy into Lung Cancer Screening Decision-Making-A Qualitative Study.

BACKGROUND: Primary care providers (PCPs) are often the first point of contact for discussing lung cancer screening (LCS) with patients. While guidelines recommend against screening people with limited life expectancy (LLE) who are less likely to benefit, these patients are regularly referred for LCS. OBJECTIVE: We sought to understand barriers PCPs face to incorporating life expectancy into LCS decision-making for patients who otherwise meet eligibility criteria, and how a hypothetical point-of-care tool could support patient selection. DESIGN: Qualitative study based on semi-structured telephone interviews. PARTICIPANTS: Thirty-one PCPs who refer patients for LCS, from six Veterans Health Administration facilities. APPROACH: We thematically analyzed interviews to understand how PCPs incorporated life expectancy into LCS decision-making and PCPs' receptivity to a point-of-care tool to support patient selection. Final themes were organized according to the Cabana et al. framework Why Don't Physicians Follow Clinical Practice Guidelines, capturing the influence of clinician knowledge, attitudes, and behavior on LCS appropriateness determinations. KEY RESULTS: PCP referrals to LCS for patients with LLE were influenced by limited knowledge of the life expectancy threshold at which patients are less likely to benefit from LCS, discomfort estimating life expectancy, fear of missing cancer at the point of early detection, and prioritization of factors such as quality of life, patient values, clinician-patient relationship, and family support. PCPs were receptive to a decision support tool to inform and communicate LCS appropriateness decisions if easy to use and integrated into clinical workflows. CONCLUSIONS: Our study suggests knowledge gaps and attitudes may drive decisions to offer screening despite LLE, a behavior counter to guideline recommendations. Integrating a LCS decision support tool that incorporates life expectancy within the electronic medical record and existing clinical workflows may be one acceptable solution to improve guideline concordance and increase confidence in selecting high benefit patients for LCS.

Virtual Pharmacy: An Integrated Collaborative Redesign Targeting Medication-Related Problems in Patients with Chronic Kidney Disease.

INTRODUCTION: Collaborative management of kidney disease relies on coordinated and effective partnerships between multiple providers. Siloed traditional health systems often result in delays, barriers to treatment access, and inefficient monitoring. METHODS: We conducted a 1-year observational mixed-methods study. We included all consecutive referrals except for patients without telephone access. We assessed 4 domains of outcomes: (1) patient and caregiver experience, (2) provider experience (e.g., physicians and pharmacists), (3) clinical outcomes specific to medication-related outcomes (e.g., adherence, adverse drug events [ADEs]), and (4) value and efficiency (i.e., medication access, defined as time to treatment and resolution of medication reimbursement issues). RESULTS: Sixty-five patients were referred to the integrated virtual pharmacy (iVRx) model. Most (72%) patients were male. Patients had a median (min, max) age of 60 (27, 85) years and were taking 8 (4, 13) medications. Compared with traditional care delivery models, medication access improved for 56% of participants. Direct home delivery of medication resulted in 91% of patients receiving prescriptions within 2 days of a nephrologist visit. During more than 2,000 pharmacist-patient encounters, 208 ADEs were identified that required clinician intervention to prevent patient harm. When these ADEs were classified by severity, 53% were mild, 45% were moderate (e.g., delaying dose titration in patients initiated on glucagon-like peptide 1 (GLP-1) agonists due to intolerable gastrointestinal side effects), and the remaining 2% of ADEs were severe, meaning clinical intervention was required to prevent a serious outcome (e.g., uncontrolled blood pressure, prevention of acute kidney injury). Nephrologists reported high satisfaction with iVRx, citing efficiency, timely response, and collaboration with pharmacists as key facilitators. Of the 65 patient participants, 98% reported being extremely satisfied. CONCLUSIONS: The iVRx is an acceptable and feasible clinical strategy. Our pilot program was associated with improved kidney care by increasing medication access for patients and avoiding potential harms associated with ADEs.

Patients' Experience to MRI Examinations-A Systematic Qualitative Review With Meta-Synthesis.

BACKGROUND: Patients often mention distress, anxiety, or claustrophobia related to MRI, resulting in no-shows, disturbances of the workflow, and lasting psychological effects. Patients' experience varies and is moderated by socio-demographic aspects alongside the clinical condition. While qualitative studies help understand individuals' experiences, to date a systematic review and aggregation of MRI individuals' experience is lacking. PURPOSE: To investigate how adult patients experience MRI, and the characterizing factors. STUDY TYPE: Systematic review with meta-aggregation and meta-synthesis. POPULATION: 220 patients' reported experience of adults undergoing clinical MRI and 144 quotes from eight qualitative studies. ASSESSMENT: Systematic search in PubMed, Scopus, Web of Science, and PsycInfo databases according to the PRISMA guidelines. For quality appraisal, the Joanna Briggs Institute (JBI) tools were used. Convergent segregated approach was undertaken. DATA ANALYSIS: Participant recruitment, setting of exploration, type of interview, and analysis extracted through Joana Briggs Qualitative Assessment and Review Instrument (JBI QARI) tool. Meta-synthesis was supported by a concept map. For meta-aggregation, direct patient quotes were extracted, findings grouped, themes and characterizing factors at each stage abstracted, and categories coded in two cycles. Frequency of statements was quantified. Interviews' raw data unavailability impeded computer-aided analysis. RESULTS: Eight articles out of 12,755 initial studies, 220 patients, were included. Meta-aggregation of 144 patient quotes answered: (1) experiences before, at the scanning table, during, and after an MRI, (2) differences based on clinical condition, and (3) characterizing factors, including coping strategies, look-and-feel of medical technology, interaction with professionals, and information. Seven publications lack participants' health literacy level, occupation, and eight studies lack developmental conditions, ethnicity, or country of origin. Six studies were conducted in university hospitals. DATA CONCLUSION: Aggregation of patients' quotes provide a foundational description of adult patients' MRI experience across the stages of an MRI process. Insufficient raw data of individual quotes and limited socio-demographic diversity may constrain the understanding of individual experience and characterizing factors. LEVEL OF EVIDENCE: 1 TECHNICAL EFFICACY: Stage 5.

Leveraging Patients' Creative Ideas for Innovation in Health Care.

Policy Points Patients' creative ideas may inform learning and innovation that improve patient-centered care. Routinely collected patient experience surveys provide an opportunity to invite patients to share their creative ideas for improvement. We develop and assess a methodological strategy that validates question wording designed to elicit creative ideas from patients. Health care organizations should consider how to report and use these data in health care delivery and quality improvement, and policymakers should consider promoting the use of narrative feedback to better understand and respond to patients' experiences. CONTEXT: Learning health systems (LHSs) have been promoted for a decade to achieve high-quality, patient-centered health care. Innovation driven by knowledge generated through day-to-day health care delivery, including patient insights, is critical to LHSs. However, the pace of translating patient insights into innovation is slow and effectiveness inadequate. This study aims to evaluate a method for systematically eliciting patients' creative ideas, examine the value of such ideas as a source of insight, and examine patients' creative ideas regarding how their experiences could be improved within the context of their own health systems. METHODS: The first stage of the study developed a survey and tested strategies for elicitation of patients' creative ideas with 600 patients from New York State. The second stage deployed the survey with the most generative open-ended question sequence within a health care system and involved analysis of 1,892 patients' responses, including 2,948 creative ideas. FINDINGS: Actionable, creative feedback was fostered by incorporating a request for transformative feedback into a sequence of narrative elicitation questions. Patients generate more actionable and creative ideas when explicitly invited to share such ideas, especially patients with negative health care experiences, those from minority racial/ethnic backgrounds, and those with chronic illness. The most frequently elicited creative ideas focused on solving challenges, proposing interventions, amplifying exceptional practices, and conveying hopes for the future. CONCLUSIONS: A valid and reliable method for eliciting creative ideas from patients can be deployed as part of routine patient experience surveys that include closed-ended survey items and open-ended narrative items in which patients share their experiences in their own words. The elicited creative ideas are promising for patient engagement and innovation efforts. This study highlights the benefits of engaging patients for quality improvement, offers a rigorously tested method for cultivating innovation using patient-generated knowledge, and outlines how creative ideas can enable organizational learning and innovation.

Integration of child life into adult oncology: A mixed-methods feasibility study.

BACKGROUND: Cancer in a loved one can have negative effects on child health and development. Child Life Specialists (CLSs) specialize in assisting children understand and cope with difficult medical scenarios but are generally not available in adult care facilities to support the needs of patient-families with minor children. We conducted a mixed-methods study of the implementation of a pilot CLS program at a tertiary oncology centre. METHODS: We collected administrative and clinical data on referred families; encounter data; and patient-reported questionnaire data before and 2 months after engagement with the program. RESULTS: Over the initial 10 months, 98 families were referred, 91 of whom engaged through a total of 257 clinical encounters. The cancer patient in the family was most commonly a woman with a mean age of 45 years and in the role of mother. Breast cancer was the most common diagnosis (24%) and 78% of patients had stage IV disease. Most families had >1 child at home, and children were most commonly school-aged (5-14y). Phone and Hospital/Clinic visits accounted for the largest portion of CLS time. Interventions ranged from diagnosis education through to bereavement support. Most cancer patients indicated that the program was helpful to them and their families. There were trends of moderate improvements on patient reported outcomes. CONCLUSION: Our study was able to provide an understanding of the initial CLS program operations to guide program development and future study. Such a program holds promise as an important aspect of adult oncology family-centered care.

Physicians are Unable to Consistently Predict Patient Health Literacy in a Breast Clinic.

INTRODUCTION: Health literacy (HL) is a patient's capacity to understand health information. Low HL is associated with worse cancer outcomes and adherence to treatment regimens. This study aimed to test physicians' ability to predict their patients' HL after an initial consultation to determine if routine HL screening is valuable. METHODS: From February 2023 through June 2023, patients seen at an academic breast clinic completed a validated, self-reported HL assessment. Surgical and medical oncologists estimated their patients' HL by answering the same HL questionnaire based on their perception of the patient visit. Patient and physician scores were compared using an intraclass correlation coefficient. Linear regression was used to evaluate associations between physicians' ability to predict HL and other variables. RESULTS: The cohort included 210 patient HL scores with corresponding physician scores for each. Most patients (75.7%) had adequate HL. There was moderate agreement between the patient and physician HL scores (intraclass correlation coefficient = 0.677, P < 0.01), meaning physicians could somewhat predict their patient's HL. Physicians were worse at predicting HL when patients had low HL. There was no difference in physicians' ability to predict HL based on patient age (P = 0.09) or race (P = 0.29). Additionally, we found no difference in the ability to predict HL based on the physician's specialty (P = 0.25). CONCLUSIONS: After an initial consultation, physicians cannot accurately predict patient HL, particularly in patients with lower HL. Given the impact of low HL on a patient's ability to make treatment decisions and adhere to treatment plans, using a validated tool to measure HL is necessary.

Implementation and Qualitative Analysis of Peer Support for New Pediatric Gastrostomy Tube Families.

INTRODUCTION: Gastrostomy tube (G-tube) insertion in children has frequent complications, including dislodgment and return to the system, which are associated with emotional burden for caregivers. To address these issues, we developed a peer support program for caregivers of children with new G-tubes and aimed to explore program feasibility and acceptability. METHODS: The G-tube Buddy Program is a peer support program that pairs an experienced G-tube caregiver with new G-tube caregivers. Between April 2022 and December 2022, seven mentors and 21 mentees participated in the program. Five mentors and ten mentees participated in semi-structured focus groups and interviews. Transcripts were analyzed using both inductive and deductive qualitative methods. RESULTS: We identified five prominent domains: peer support relationship dynamics; mentor and mentee-specific factors; determinants of program success; mentor and mentee perception of the program; and suggestions for program improvement. These domains encompassed main themes: support consisted primarily of assistance with daily life and social and emotional support; texting was usually the preferred communication method; mentee satisfaction is rooted in humanness, teaching, and generation of hope; mentors participated due to positive feelings regarding helping new caregivers with financial motivation being less important; and, participants perceived the program as a valuable source of support for new caregivers that complements and expands the reach of care they receive from clinical providers. CONCLUSIONS: A peer support model for families with new G-tubes appears feasible and acceptable from participant perspectives. Responses validate the program's potential to add value to the postoperative care of children with G-tubes and will guide program optimization.

Gaps in Patient-Centered Decision-Making Related to Complex Surgery: A Mixed-Methods Study.

INTRODUCTION: We sought to understand the perceptions of surgeons around patient preferred roles in decision-making and their approaches to patient-centered decision-making (PCDM). METHODS: A concurrent embedded mixed-methods design was utilized among a cohort of surgeons performing complex surgical procedures. Data were collected through online surveys. Associations between perceptions and PCDM approaches were examined. RESULTS: Among 241 participants, most respondents were male (67.2%) with an average age of 47.6 y (standard deviation = 10.3); roughly half (52.4%) had practiced medicine for 10 or more years. Surgeons most frequently agreed (94.2%) with the statement, "Patients prefer to make health decisions on their own after seriously considering their physician's opinion." Conversely, surgeons most frequently disagreed (73.0%) with the statement, "Patients prefer that their physician make health decisions for them." Nearly one-third (30.4%) of surgeon qualitative responses (n = 115) indicated that clinical/biological information would help them tailor their approach to PCDM. Only 12.2% of respondents indicated that they assess patient preferences regarding both decision-making and information needs. CONCLUSIONS: Surgeons most frequently agree that patients want to make their own health decisions after seriously considering their physicians opinion. A greater focus on what information surgeons should know before treatment decision-making may help optimize patient experience and outcomes related to complex surgical procedures.

Organ Offer Review Cards: Improving Transparency on the Kidney Transplant Waitlist.

INTRODUCTION: The 2022 National Academy of Sciences, Engineering, and Medicine report on equity in organ transplantation highlighted limited transparency and accountability for organ offer declines and recommended prioritizing patient engagement in decisions regarding organ offers. Yet, there is no guidance on how to incorporate patients in organ offers. We elected to study the experiences of patients on the waitlist and their perception of a novel Organ Offer Review Card (OORC). METHODS: A prototype OORC was created using Donornet refusal codes. Sixty randomly selected kidney waitlist patients at a single center were asked to participate in a web-based survey focusing on current medical decision-making preferences and perceptions of the prototype OORC. RESULTS: Among the 43 patients reached, 17 (39.5%) completed the survey. Most participants (88.2%) expressed it was important to be involved in the decision-making about organ offers, with 100.0% of respondents wanting to know why an organ was declined. Regarding the prototype OORC, 94.1% thought it helped them understand the factors and priorities considered when selecting an organ, and 88.2% said it increased their belief that their team was acting in their best interest. CONCLUSION: An OORC could increase transparency and communication during the waitlist process while enhancing trust in the transplant team.

"It Can't Hurt!": Why Many Patients With Limited Life Expectancy Decide to Accept Lung Cancer Screening.

PURPOSE: Lung cancer screening (LCS) has less benefit and greater potential for iatrogenic harm among people with multiple comorbidities and limited life expectancy. Yet, such individuals are more likely to undergo screening than healthier LCS-eligible people. We sought to understand how patients with marginal LCS benefit conceptualize their health and make decisions regarding LCS. METHODS: We interviewed 40 people with multimorbidity and limited life expectancy, as determined by high Care Assessment Need scores, which predict 1-year risk of hospitalization or death. Patients were recruited from 6 Veterans Health Administration facilities after discussing LCS with their clinician. We conducted a thematic analysis using constant comparison to explore factors that influence LCS decision making. RESULTS: Patients commonly held positive beliefs about screening and perceived LCS to be noninvasive. When posed with hypothetical scenarios of limited benefit, patients emphasized the nonlongevity benefits of LCS (eg, peace of mind, planning for the future) and generally did not consider their health status or life expectancy when making decisions regarding LCS. Most patients were unaware of possible additional evaluations or treatment of screen-detected findings, but when probed further, many expressed concerns about the potential need for multiple evaluations, referrals, or invasive procedures. CONCLUSIONS: Patients in this study with multimorbidity and limited life expectancy were unaware of their greater risk of potential harm when accepting LCS. Given patient trust in clinician recommendations, it is important that clinicians engage patients with marginal LCS benefit in shared decision making, ensuring that their values of desiring more information about their health are weighed against potential harms from further evaluations.

Challenges Addressing Lung Cancer Screening for Patients With Multimorbidity in Primary Care: A Qualitative Study.

PURPOSE: Many individuals who are eligible for lung cancer screening have comorbid conditions complicating their shared decision-making conversations with physicians. The goal of our study was to better understand how primary care physicians (PCPs) factor comorbidities into their evaluation of the risks and benefits of lung cancer screening and into their shared decision-making conversations with patients. METHODS: We conducted semistructured interviews by videoconference with 15 PCPs to assess the extent of shared decision-making practices and explore their understanding of the intersection of comorbidities and lung cancer screening, and how that understanding informed their clinical approach to this population. RESULTS: We identified 3 themes. The first theme was whether to discuss or not to discuss lung cancer screening. PCPs described taking additional steps for individuals with complex comorbidities to decide whether to initiate this discussion and used subjective clinical judgment to decide whether the conversation would be productive and beneficial. PCPs made mental assessments that factored in the patient's health, life expectancy, quality of life, and access to support systems. The second theme was that shared decision making is not a simple discussion. When PCPs did initiate discussions about lung cancer screening, although some believed they could provide objective information, others struggled with personal biases. The third theme was that ultimately, the decision to be screened was up to the patient. Patients had the final say, even if their decision was discordant with the PCP's advice. CONCLUSIONS: Shared decision-making conversations about lung cancer screening differed substantially from the standard for patients with complex comorbidities. Future research should include efforts to characterize the risks and benefits of LCS in patients with comorbidities to inform guidelines and clinical application.