Developing a national implementation strategy to accelerate uptake of evidence-based family caregiver support in U.S. cancer centers.

OBJECTIVE: Characterize key factors and training needs of U.S. cancer centers in implementing family caregiver support services. METHODS: Sequential explanatory mixed methods design consisting of: (1) a national survey of clinicians and administrators from Commission-on-Cancer-accredited cancer centers (N = 238) on factors and training needed for establishing new caregiver programs and (2) qualitative interviews with a subsample of survey respondents (N = 30) to elicit feedback on survey findings and the outline of an implementation strategy to facilitate implementation of evidence-based family caregiver support (the Caregiver Support Accelerator). Survey data was tabulated using descriptive statistics and transcribed interviews were analyzed using thematic analysis. RESULTS: Top factors for developing new caregiver programs were that the program be: consistent with the cancer center's mission and strategic plan (87%), supported by clinic leadership (86.5%) and providers and staff (85.7%), and low cost or cost effective (84.9%). Top training needs were how to: train staff to implement programs (72.3%), obtain program materials (63.0%), and evaluate program outcomes (62.6%). Only 3.8% reported that no training was needed. Qualitative interviews yielded four main themes: (1) gaining leadership, clinician, and staff buy-in and support is essential; (2) cost and clinician burden are major factors to program implementation; (3) training should help with adapting and marketing programs to local context and culture; and (4) the Accelerator strategy is comprehensive and would benefit from key organizational partnerships and policy standards. CONCLUSION: Findings will be used to inform and refine the Accelerator implementation strategy to facilitate the adoption and growth of evidence-based cancer caregiver support in U.S. cancer centers.

Exploring the health-related decision-making experiences of people with chronic kidney disease and their caregivers: A qualitative study.

BACKGROUND: This study aimed to explore the decision-making experience of patients with chronic kidney disease (CKD) and their caregivers. METHODS: This was a qualitative descriptive study of the decision-making experiences of individuals with stage 3-end-stage CKD and their family caregivers. One-on-one, semistructured interviews were conducted using a guide developed and approved by a community advisory group. Data were analyzed using thematic analysis. RESULTS: Three themes were identified: (1) decisions triggered by declining health and broad in scope, (2) challenges to decision-making and (3) factors influencing decision-making. Participants' experiences with health-related decision-making demonstrated that decisions were triggered when health declined. Yet, decisions that impact disease progression were being made in stage 3. Decision-making was made difficult due to lack of information, complex co-morbidities, and poor resource utilization. However, the structure and nature of the medical appointment, supportive caregivers, and resources served to remove challenges. CONCLUSION: Decision-support interventions must train patients and caregivers to be empowered participants in answer-seeking behaviours upstream of advanced illness. PUBLIC CONTRIBUTIONS: This work was conducted in full collaboration with a community advisory board consisting of patients with CKD, caregivers and clinicians. These members are noted in the acknowledgement section, and those who worked with the team to develop the interview guide, study protocols, and manuscript preparation are included as authors. As part of their role, advisory members met monthly, providing input on recruitment, study progress, inclusion of diverse voices and added relevance to study findings.

Venous sinus stenting in idiopathic intracranial hypertension: a safer surgical approach?

PURPOSE OF REVIEW: The purpose is to summarize treatment strategies in idiopathic intracranial hypertension (IIH), a potentially sight-threatening disease, with a focus on the most current outcome data for venous sinus stenting. RECENT FINDINGS: Historically, the primary treatment options for medically refractory IIH consisted of either optic nerve sheath fenestration or cerebrospinal fluid diversion procedures. The visual outcomes of these procedures are favorable, though they tend to be associated with a high rate of complication and failure. Recent trials suggest that venous sinus stenting offers both comparable rates of efficacy - with improved papilledema in 97% of patients, resolved headache in 83%, and improved visual acuity in 78% - and improved safety and reliability relative to older surgical techniques. SUMMARY: Patients whose sight is threatened by medically refractory IIH must often consider invasive procedures to control their disease. Venous sinus stenting may offer equal efficacy and lower failure and complication rates than traditional surgical approaches such as optic nerve sheath fenestration and cerebrospinal fluid diversion.

A comparative evaluation of patient satisfaction outcomes in an interprofessional student-run free clinic.

As the evidence supporting the value of well-coordinated healthcare teams continues to grow, so to do the calls from medical educators and policy makers for the development of meaningful interprofessional educational experiences for health professions students. The student-run clinic has emerged as a unique venue for such experiential interprofessional learning experiences, with over 100 such clinics now in operation across North America. As the number and variety of these clinics rises, it has become increasingly important to understand the quality of care which they deliver. Here, patient satisfaction data from an interprofessional student-run free clinic are described, and these results are quantitatively compared to similar data obtained from a non-interprofessional, non-student-run clinic in a post-experience only, non-equivalent groups design. Student-run free clinic patients reported high levels of satisfaction with the patient care team and the facility quality, and lower levels of satisfaction with waiting times. When compared to the non-student-run clinic, there was no significant difference in the high levels of patient satisfaction with the patient care teams between the clinics. Student-run free clinic patients did, however, report significantly lower levels of satisfaction with the accessibility of care and with the perceived privacy of protected health information. Overall, this report provides evidence that an interprofessional student-run free clinic is capable of performing at the level of an experienced free clinic across many domains of patient satisfaction, while also identifying notable areas for improvement within the domains of clinic accessibility and the perception of the privacy of protected health information.

Perspectives on visitors in the emergency department: their role and importance.

BACKGROUND: Visitors may play a significant role in patient care by interceding on patients' behalf and advocating proper care. STUDY OBJECTIVES: The objectives of this study were to determine the percentage of emergency department (ED) patients with visitors, whether this varied by gender or race, and to compare patient and visitor perspectives on the role and importance of visitors. METHODS: This cross-sectional study was done in a 46,035 adult-visit, urban ED during a consecutive 96-h period. A "visitor" was defined as any non-health-care provider present in a patient's room. Perspectives of visitors' role were assessed in five domains: transportation, emotional support, physical care, communication, and advocacy. RESULTS: Forty-two percent of patients had at least one visitor during their ED stay. Visitor presence was unaffected by patients' age, gender, or triage score; however, 57% of white patients had at least one visitor during their stay, compared to 39% for non-Whites (p = 0.02). When patients had one or more visitors, gender and triage score did not influence the number of visitors; however, older patients and nonwhite patients had greater numbers of visitors (age ≥ 40 years, 1.5 ± 0.8 vs. age < 40, 1.2 ± 0.6 visitors/patient; p = 0.03 and nonwhite patients, 1.4 ± 0.7 vs. white patients, 1.1 ± 0.3 visitors/patient; p = 0.03). Seventy-eight percent of patients felt that visitors were important to their care. CONCLUSIONS: Visitors represent a valuable resource for patients, and methods of partnering with visitors to improve outcomes merit further work.

Availability of Family Caregiver Programs in US Cancer Centers.

Importance: Family caregivers provide the majority of health care to the 18 million patients with cancer in the US. Yet despite providing complex medical and nursing care, a large proportion of caregivers report no formal support or training. In recognition of this gap, many interventions to support cancer caregivers have been developed and tested over the past 2 decades. However, there are few system-level data on whether US cancer centers have adopted and implemented these interventions. Objective: To describe and characterize the availability of family caregiver support programs in US cancer centers. Design, Setting, and Participants: This cross-sectional national survey study was conducted between September 1, 2021, and April 30, 2023. Participants comprised clinical and administrative staff of Commission on Cancer-accredited US cancer centers. Data analysis was performed in May and June 2023. Main Outcomes and Measures: Survey questions about the availability of 11 types of family caregiver programs (eg, peer mentoring, education classes, and psychosocial programs) were developed after literature review, assessment of similar program evaluation surveys, and discussions among a 13-member national expert advisory committee. Family caregiver programs were defined as structured, planned, and coordinated groups of activities and procedures aimed at specifically supporting family caregivers as part of usual care. Survey responses were tabulated using standard descriptive statistics, including means, proportions, and frequencies. Results: Of the surveys sent to potential respondents at 971 adult cancer centers, 238 were completed (response rate, 24.5%). After nonresponse weight adjustment, most cancer centers (75.4%) had at least 1 family caregiver program; 24.6% had none. The most common program type was information and referral services (53.6%). Cancer centers with no programs were more likely to have smaller annual outpatient volumes (χ2 = 11.10; P = .011). Few centers had caregiver programs on training in medical and/or nursing tasks (21.7%), caregiver self-care (20.2%), caregiver-specific distress screening (19.3%), peer mentoring (18.9%), and children caregiving for parents (8.3%). Very few programs were developed from published evidence in a journal (8.1%). The top reason why cancer centers selected their programs was community members requesting the program (26.3%); only 12.3% of centers selected their programs based on scientific evidence. Most programs were funded by the cancer center or hospital (58.6%) or by philanthropy (42.4%). Conclusions and Relevance: In this survey study, most cancer centers had family caregiver programs; however, a quarter had none. Furthermore, the scope of programming was limited and rarely evidence based, with few centers offering caregiving education and training. These findings suggest that implementation strategies are critically needed to foster uptake of evidence-based caregiver interventions.

Henle fibre layer haemorrhage: clinical features and pathogenesis.

BACKGROUND: To describe the clinical presentation and characteristic imaging features of deep retinal haemorrhages primarily located in the Henle fibre layer (HFL) of the macula. The spectrum of aetiologies and a comprehensive theory of pathogenesis are presented. METHODS: This is a retrospective, multicentre case series evaluating eyes with retinal haemorrhage in HFL. Clinical features, underlying aetiology, systemic and ocular risk factors, visual acuity, and multimodal imaging including fundus photography and cross-sectional and en face optical coherence tomography (OCT) are presented. RESULTS: Retinal haemorrhages localised to HFL in 33 eyes from 23 patients were secondary to acute blunt trauma to the head (n=2), eye (n=1) and trunk (n=1), ruptured intracranial aneurysm (Terson's syndrome, n=3), general anaesthesia (n=1), epidural anaesthesia (n=1), hypertension with anaemia (n=1), decompression retinopathy (n=1), postvitrectomy with intraocular gas (n=1), retinal vein occlusion (n=7), myopic degeneration (n=2), macular telangiectasia type 2 (n=1), and polypoidal choroidal vasculopathy (n=1). Defining clinical features included deep retinal haemorrhage with feathery margin and petaloid pattern radiating from the fovea. OCT demonstrated characteristic hyper-reflectivity from the haemorrhage delineated by obliquely oriented fibres in the Henle layer. Spontaneous resolution of HFL haemorrhage occurred after 3 months in 15 patients with follow-up. CONCLUSION: The characteristic petaloid-shaped, deep intraretinal haemorrhage with a feathery margin localised to HFL is associated with various disorders. The terminology 'Henle fiber layer hemorrhage (HH)' is proposed to describe the clinical and OCT findings, which may result from abnormal retinal venous pressure from systemic or local retinovascular disorders affecting the deep capillary plexus or from choroidal vascular abnormalities.

Uveitis-glaucoma-hyphema syndrome secondary to a Soemmerring ring.

We report the case of a patient who developed the uveitis-glaucoma-hyphema (UGH) syndrome secondary to extensive fibrosis (Soemmerring ring) around the haptics of the single-piece intraocular lens (IOL) in the capsular bag. The development of significant capsule fibrosis caused the IOL to tilt out of the iris plane, leading to haptic-iris and haptic-ciliary body chafing. The mechanisms described should prompt clinicians to consider the UGH syndrome even in the setting of a single-piece IOL properly placed in the capsular bag. Anterior segment imaging with ultrasound biomicroscopy can be used to evaluate the position of the IOL haptics in suspected cases.

Statin therapy for Alzheimer's disease: will it work?

Disease-modifying therapies are being developed for Alzheimer's disease (AD). These are expected to slow the clinical progression of the disease or delay its onset. Cerebral accumulation of amyloid beta (A beta) peptides is an early and perhaps necessary event for establishing AD pathology. Consequently therapies aimed at attenuating brain amyloidosis are expected to be disease modifying. Based on the epidemiological evidence pointing to a link between cholesterol metabolism and AD and the numerous laboratory studies implicating cholesterol in the process of A beta production and accumulation, it is now believed that cholesterol-lowering therapies will be of value as disease modifying agents. Several epidemiological studies revealed that statin use for the treatment of coronary arterial disease is associated with a decreased prevalence or a decreased risk of developing AD. These observations require both preclinical and clinical validation. The former involves testing statins in one or more animal models of AD in order to establish which disease features are affected by statin treatment, the relative efficacy with which different statins modify these features and the mechanism(s) by which statins affect AD phenotypes. The latter requires prospective, randomized, placebo controlled trials to evaluate the effect of statin treatment on cognitive and AD biomarker outcomes. We have initiated a study aimed at determining the effects of atorvastatin (Lipitor), a statin with the largest US market share, on brain A beta deposition in the PSAPP transgenic mouse model of Alzheimer's amyloidosis. Our results indicate that Lipitor treatment markedly attenuates A beta deposition in this animal model.

Specialty referral communication and completion in the community health center setting.

OBJECTIVE: Parent and provider disagreement about children's care at the time of specialty referral may lead to incomplete referral, ie, not attending a specialty visit when referred. This study's objectives were first to assess parent-provider correlation in perspectives on referral necessity, seriousness of child's health problem, and parental understanding of referral among children referred to pediatric specialists, and second to assess whether these perspectives are associated with incomplete referral. METHODS: Two months after specialty referral, parents and primary care providers completed a survey rating referral necessity, seriousness of problem, and parental understanding on a 4-part scale ("definitely yes" to "definitely no"). Parents were surveyed by telephone; providers completed one self-administered survey per referral. Using z tests and Pearson correlation coefficients, we summarized parent-provider agreement about referral necessity, seriousness of problem, and parent understanding. We applied logistic regression to test associations of parent and provider ratings for each variable with incomplete referral. RESULTS: A total of 299 (60.0%) of 498 matched parent and provider surveys were included in the analysis. Parents had low correlation with providers in perspectives of referral necessity and seriousness of problem. Parents reported that referral was necessary more often than providers, and providers underestimated parents' self-reported understanding of the referral. Nearly 1 in 3 children had incomplete referral, and both parent and provider reports of lower necessity were associated with incomplete referral. CONCLUSIONS: Parents and providers hold divergent perspectives on referral necessity and seriousness of children's health problems; these perspectives may impact rates of incomplete referral. Improving communication around specialty referral might reduce incomplete referral.