Equitably improving outcomes for cancer survivors and supporting caregivers: A blueprint for care delivery, research, education, and policy.

Cancer care delivery is being shaped by growing numbers of cancer survivors coupled with provider shortages, rising costs of primary treatment and follow-up care, significant survivorship health disparities, increased reliance on informal caregivers, and the transition to value-based care. These factors create a compelling need to provide coordinated, comprehensive, personalized care for cancer survivors in ways that meet survivors' and caregivers' unique needs while minimizing the impact of provider shortages and controlling costs for health care systems, survivors, and families. The authors reviewed research identifying and addressing the needs of cancer survivors and caregivers and used this synthesis to create a set of critical priorities for care delivery, research, education, and policy to equitably improve survivor outcomes and support caregivers. Efforts are needed in 3 priority areas: 1) implementing routine assessment of survivors' needs and functioning and caregivers' needs; 2) facilitating personalized, tailored, information and referrals from diagnosis onward for both survivors and caregivers, shifting services from point of care to point of need wherever possible; and 3) disseminating and supporting the implementation of new care methods and interventions.

Barriers to liver transplant referral in safety net settings: A national provider survey.

Safety net systems care for patients with a high burden of liver disease yet experience many barriers to liver transplant (LT) referral. This study aimed to assess safety net providers' perspectives on barriers to LT referrals in the United States. We conducted a nationwide anonymous online survey of self-identified safety net gastroenterologists and hepatologists from March through November 2022. This 27-item survey was disseminated via e-mail, society platforms, and social media. Survey sections included practice characteristics, transplant referral practices, perceived multilevel barriers to referral, potential solutions, and respondent characteristics. Fifty complete surveys were included in analysis. A total of 60.0% of respondents self-identified as White and 54.0% male. A total of 90.0% practiced in an urban setting, 82.0% in tertiary medical centers, and 16.0% in community settings, with all 4 US regions represented. Perceived patient-level barriers ranked as most significant, followed by practice-level, then provider-level barriers. Patient-level barriers such as lack of insurance (72.0%), finances (66.0%), social support (66.0%), and stable housing/transportation (64.0%) were ranked as significant barriers to referral, while medical mistrust and lack of interest were not. Limited access to financial services (36.0%) and addiction/mental health resources (34.0%) were considered important practice-level barriers. Few reported existing access to patient navigators (12.0%), and patient navigation was ranked as most likely to improve referral practices, followed by an expedited/expanded pathway for insurance coverage for LT. In this national survey, safety net providers reported the highest barriers to LT referral at the patient level and practice level. These data can inform the development of multilevel interventions in safety net settings to enhance equity in LT access for vulnerable patients.

Lessons Learned: Evaluation of Fracture Liaison Service Quality Improvement Efforts in a Large Academic Healthcare System.

BACKGROUND: The Fracture Liaison Service (FLS) care model, a care coordination program for patients experiencing a fragility fracture, is proven to improve management of patients with an osteoporotic fracture, but treatment initiation gaps persist. OBJECTIVE: We describe the evolution of a centralized FLS within a university-based healthcare system, including impact of adding clinical pharmacist consultation, and describe circumstances surrounding continued care gaps. DESIGN: Cohort analysis of osteoporosis medication initiation before FLS, after initial implementation, and after addition of pharmacist consultation. PATIENTS: Individuals aged 65 and older experiencing any fragility fracture between 7/1/16 and 3/31/22. INTERVENTION: A centralized team outreached eligible patients, ordered dual x-ray absorptiometry and laboratory tests as needed, and scheduled an osteoporosis-focused primary care appointment. Three years after FLS implementation, clinical pharmacist consultative review was added prior to the primary care visit. MAIN MEASURES: Initiation of osteoporosis pharmacologic therapy, completion of DXA, primary care follow-up rate, and description of circumstances where therapy was not initiated. KEY RESULTS: Of 1204 new fractures between 7/1/16 and 3/31/22, 315 patients were enrolled in one of two FLS phases, and 89 eligible historical controls were identified. Medication initiation rates went from 22/89 (25%) pre-FLS to 201/428 (47%) after-FLS phase 1 [POST1] (p<0.001) and to 106/187 (57%) after FLS phase 2 (POST2), when clinical pharmacist consultation was added (p=0.03 versus POST1). DXA was completed in 56/89 (67%) of pre-FLS patients, 364/428 (85%) POST1 patients (p<0.001 versus pre), and 163/187 (87%) POST2 (p< 0.001 versus PRE, p=0.59 versus POST1). Of 375 patients who did not initiate osteoporosis medication, more in the combined post-FLS cohorts attended a follow-up primary care appointment (233/308, 76% attended, versus pre-FLS 41/67, 61%, p=0.016). CONCLUSION: An FLS including centralized outreach and care coordination significantly improved patient follow-up, DXA, and medication initiation. Addition of de-centralized pharmacist consultation further improved medication initiation rates.

Selective centralized booking as a low-cost alternative to centralized referral.

SummaryCentralized referral systems have been successfully implemented to shorten and equalize surgical wait times; however, ongoing expenses make sustaining these projects challenging. We trialed a low-cost centralized booking project for hernia surgery in a community hospital from July to November 2019. Eligible patients (i.e., those with visible or palpable inguinal or umbilical hernias who were agreeable to an open mesh repair) were booked with the first available surgeon after initial consultation. Centrally booked patients with either inguinal or umbilical hernias waited a mean of 82 (standard deviation [SD] 32) and 80 (SD 66) days, respectively, while those who did not use the centralized system waited 137 (SD 89) and 181 (SD 92) days, respectively. Centralized booking increased operating room utilization as a larger pool of patients was available to call when last-minute cancellation occurred; centralized booking also effectively equalized wait-lists among 6 surgeons. Selective centralized booking is a promising concept that led to more efficient utilization of available operating room time with a significant decrease in wait times; this system could potentially improve access for all patients awaiting general surgery without requiring additional funding.

Leveraging In Situ Simulation for Implementation of Teleobstetric Consultation Services in Rural and Community Hospitals.

Background: Our institution implemented acute-care obstetric (OB) telemedicine (TeleOB) to address rural disparities across our health system. We sought to determine whether in situ simulations with embedded TeleOB consultation increase participants' comfort managing OB emergencies and comfort with and likelihood of using TeleOB. Methods: Rural site care teams participated in multidisciplinary in situ OB emergency simulations. Physicians in OB and neonatology at the referral center assisted via telemedicine consultation. Participants were surveyed before and after the simulations and six months later regarding their experience during the simulations. Results: Participants reported increased comfort with TeleOB activation, indications, and workflow processes, as well as increased comfort managing OB emergencies. Participants also reported significantly increased likelihood of using TeleOB in the future. Conclusions: Consistent with previous work, in situ simulation with embedded telemedicine consultations is an effective approach to facilitate telemedicine implementation and promote use by rural clinicians.

Telemedicine for Screening and Follow-Up of Glaucoma: A Descriptive Study.

Introduction: Glaucoma is a leading cause of irreversible blindness. It is a prevalent disease worldwide, affecting ∼70 million people and expected to reach up to 112 million by 2040. Purpose: The aim of this study is to describe the implementation and initial experience of a telemedicine program to monitor glaucoma and glaucoma suspect patients in a large, integrated health care system during the COVID-19 pandemic. Methods: A retrospective chart review of established glaucoma or glaucoma suspect patients who participated in a telemedicine evaluation at the ophthalmic center of a large, Colombian health care system between June 2020 and April 2023 was conducted. Clinical and sociodemographic variables were analyzed. Generated clinical orders for additional testing, surgical procedures, follow-ups, and referrals, as well as changes in medical treatment, were evaluated. Results: A total of 11,034 telemedicine consults were included. The mean ± standard deviation age of this group was 63 ± 17.2 years and 67% were female. Of the patients who attended teleconsults, 49% were glaucoma suspects and 38.5% were followed with a diagnosis of open-angle glaucoma. After the consult, 25% of patients were referred to a glaucoma specialist, 40% had additional testing ordered, and 8% had a surgical procedure ordered, mainly laser iridotomy (409 cases). Almost a third of patients returned for subsequent telemedicine visits after the initial encounter. Despite some technical difficulties, 99.8% of patients attended and completed their scheduled telemedicine appointments. Conclusions: A telemedicine program aimed to monitor established glaucoma patients can be successfully implemented. Established patients within an integrated health care system have high adherence to the virtual model. Further research by health care institutions and government agencies will be key to expand coverage to additional populations. Clinical Trial Registration Number: CEIFUS 1026-24.

Adherence to Emergency Department Referral Criteria in a Direct-to-Consumer Telemedicine Center.

Background: The safety of direct-to-consumer telemedicine (TM) is closely related to red flag detection and correct referrals. The adherence to referral criteria from current guidelines is not well quantified. Objective: To analyze the emergency department (ED) referral rate and adherence to referral guidelines in TM encounters of acutely ill patients calling a center that adopts stewardship protocols. Methods: This is a retrospective observational unicentric study, between March 2020 and March 2022, with patients who spontaneously sought direct-to-consumer urgent virtual medical assistance. A video-based teleconsultation was provided immediately after connection. Physicians managed situations according to their clinical judgment. Current guidelines, containing specific guidance for referral if red flags were identified, were available for consultation. Physicians' semiannual performance feedback was carried out. We analyzed the patterns for referral to immediate face-to-face medical evaluation and the agreement degree with the institutional guidelines. Results: A total of 232,197 patients were available, and 14,051 (6.05%) patients were referred to ED. A total of 8,829 (68.4%) referrals were based in specific guidelines according to the International Classification of Diseases hypothesis, and 8,708 (98.6%) were justified according to guidelines. Diarrhea had the highest guidelines' adherence to referral (97.6%), followed by COVID-19 (90%), headache (84.2%), and conjunctivitis (78.8%). Policies did not support 5,222 (31.6%) referrals, though 5,100 (97.6%) of these were justified according to the doctor's clinical judgment. Conclusion: TM doctors' assessment of acutely ill patients has high rates of adherence to guidelines regarding referral. Stewardship protocol adoption provides high rates of red flag description, even in the referral of nonpolicy diseases.

Improving Access to Specialty Pediatric Care: Innovative Referral and eConsult Technology in a Specialized Acute Care Hospital.

Background: The COVID-19 pandemic has exacerbated wait times for pediatric specialty care. Transformative technologies such as electronic referral (eReferral-automation of patient information) and electronic consultations (eConsult-asynchronous request for specialized advice by primary care providers) have the potential to increase timely access to specialist care. The objective of this study was to present an overview of the current state and characteristics of referrals directed to a pediatric ambulatory medical surgery center, with an emphasis on the innovative use of an eConsult system and to indicate key considerations for system improvement. Methods: This cross-sectional study was conducted at a specialized pediatric acute care hospital in Ottawa, Ontario. Secondary data were obtained over a 2-year period during the COVID-19 pandemic (2019-2022). To gain insights and identify areas of improvement related to the factors pertaining to referrals and eConsults at the process and system levels, quality improvement (QI) methodologies were employed. Descriptive statistics provide a summary of the trends and characteristics of referrals and the utilization of eConsult. Results: Among the 113,790 referrals received, 31,430 were denied. Most common reasons for referral denial were other/null (e.g., unspecified) (29.3%), inappropriate referrals (12.6%), and duplicate referrals (12.4%). Four clinics (e.g., endocrinology, cardiology, neurology, and neurosurgery) reported a total of 277 eConsults, with endocrinology accounting for 95.0% of all eConsults. QI findings revealed the need for standardized workflows among specialties and ensuring that eConsult options are accessible and integrated within the electronic medical record (EMR). Conclusions: Refining the pediatric referral management process and optimizing eConsult through existing clinical systems have the potential to improve the timeliness and quality of specialty care. The results inform future research initiatives targeting improved access to pediatric specialty care and serve as a benchmark for hospitals utilizing EMRs and eConsult.

"Listen with your ears and eyes and heart and your minds and your soul": Implications for decolonising consultation and occupational therapy from case studies on "Closing the Gap" policy implementation.

BACKGROUND: Including Aboriginal and Torres Strait Islander people and communities through consultation has been a key feature of policy implementation throughout the Australian Government's "Closing the Gap" (CTG) strategy. However, consultation often reinforces power imbalances between government and local community and can undervalue or marginalise Indigenous knowledge and leadership. Occupational therapy has a short history of examining colonial power structures within the profession, but there has been limited progress to decolonise consultation and practice. METHODS: Drawing on decolonising research methodology and positioned at the interface of knowledge, comparative case studies were used to understand policy implementation in two regions. In Shepparton, Victoria, CTG policy was implemented predominately through an Aboriginal Community Controlled Health Organisation, and in Southern Adelaide, South Australia, CTG policy was implemented through mainstream state government and non-government providers in the absence of a local Aboriginal-controlled organisation. Findings were examined critically to identify implications for occupational therapy. RESULTS: Our case studies showed that policy stakeholders perceived consultation to be tokenistic and partnerships were viewed differently by Aboriginal and non-Indigenous participants. Participants identified the need to move beyond a rhetoric of "working with" Aboriginal and Torres Strait Islander people, to promote Aboriginal leadership and really listen to community so that policy can respond to local need. The findings of this research show that Aboriginal-controlled services are best positioned to conduct and respond to community consultation. CONCLUSION: A decolonising approach to consultation would shift the status quo in policy implementation in ways that realign power away from colonial structures towards collaboration with Indigenous leadership and the promotion of Aboriginal-controlled services. There are lessons for occupational therapy from this research on policy implementation on authentic, decolonised consultation as a key feature of policy implementation. Shifting power imbalances through prioritising Indigenous leadership and honouring what is shared can drive change in CTG policy implementation processes and outcomes.

Regionalization of Critical Care in the United States: Current State and Proposed Framework From the Academic Leaders in Critical Care Medicine Task Force of the Society of Critical Care Medicine.

OBJECTIVES: The Society of Critical Care Medicine convened its Academic Leaders in Critical Care Medicine taskforce on February 22, 2016, during the 45th Critical Care Congress to develop a series of consensus papers with toolkits for advancing critical care organizations in North America. The goal of this article is to propose a framework based on the expert opinions of critical care organization leaders and their responses to a survey, for current and future critical care organizations, and their leadership in the health system to design and implement successful regionalization for critical care in their regions. DATA SOURCES AND STUDY SELECTION: Members of the workgroup convened monthly via teleconference with the following objectives: to 1) develop and analyze a regionalization survey tool for 23 identified critical care organizations in the United States, 2) assemble relevant medical literature accessed using Medline search, 3) use a consensus of expert opinions to propose the framework, and 4) create groups to write the subsections and assemble the final product. DATA EXTRACTION AND SYNTHESIS: The most prevalent challenges for regionalization in critical care organizations remain a lack of a strong central authority to regulate and manage the system as well as a lack of necessary infrastructure, as described more than a decade ago. We provide a framework and outline a nontechnical approach that the health system and their critical care medicine leadership can adopt after considering their own structure, complexity, business operations, culture, and the relationships among their individual hospitals. Transforming the current state of regionalization into a coordinated, accountable system requires a critical assessment of administrative and clinical challenges and barriers. Systems thinking, business planning and control, and essential infrastructure development are critical for assisting critical care organizations. CONCLUSIONS: Under the value-based paradigm, the goals are operational efficiency and patient outcomes. Health systems that can align strategy and operations to assist the referral hospitals with implementing regionalization will be better positioned to regionalize critical care effectively.

Assessment of functioning in Dutch primary care: Development study of a consultation tool for patients with chronic conditions and multimorbidity.

BACKGROUND: In primary care, a shift from a disease-oriented approach for patients with multimorbidity towards a more person-centred approach is needed. AIM: To transform a self-report questionnaire for patients with chronic conditions in primary care, the Primary Care Functioning Scale (PCFS), into an understandable, visually attractive and feasible consultation tool for patients and health care providers. The consultation tool consists of a web-based version of the PCFS, which is filled in by the patient and is processed to a feedback report that summarizes and visualizes the main findings. The feedback report can be discussed with the patient to facilitate a more person-centred conversation for patients with chronic conditions and multimorbidity in general practice. DESIGN AND SETTING: In this qualitative study, we developed the consultation tool by using design thinking in a participatory developmental process. METHODS: In the first phase, we constructed five different feedback report templates to summarize and display the results of a completed PCFS questionnaire in a series of two expert meetings with patients and general practitioners (GPs). In the second phase, we performed an exploratory qualitative interview study involving dyads of patients with chronic conditions and their practice nurses. In an iterative process, we explored their experiences with the consultation tool. RESULTS: Patients, as well as GPs, preferred a clear manner of presenting the results of the questionnaire in a feedback report. In 18 interviews with patients and practice nurses during three different interview rounds, we adjusted the feedback report and consultation tool based on the input from patients and practice nurses. After the final interview round, patients and practice nurses consented that the consultation tool was useful for having a more in-depth consultation about functioning and patients' preferences when integrated into the regularly scheduled consultations. CONCLUSION: We were able to develop an understandable and feasible consultation tool that is applicable in already existing chronic disease management programmes in general practice in the Netherlands. PATIENT OR PUBLIC CONTRIBUTION: To increase the understandability and feasibility of the consultation tool, we collaborated with end-users and actively involved patients, GPs and practice nurses in a participatory development process.

Developmental Service Referrals and Utilization Among Young Children in Protective Custody.

Children in foster care are at high risk for developmental delay. In this retrospective cohort study of young children presenting to a foster care clinic, 77% were not receiving developmental services and 75% failed developmental screening. Of those potentially eligible, 60% were not referred for developmental services.

Cost-Effectiveness of Noninvasive Screening for Alcohol-Related Liver Fibrosis.

BACKGROUND AND AIMS: Alcohol-related liver disease is often undetected until irreversible late-stage decompensated disease manifests. Consequently, there is an unmet need for effective and economically reasonable pathways to screen for advanced alcohol-related fibrosis. APPROACH AND RESULTS: We used real-world data from a large biopsy-controlled study of excessive drinkers recruited from primary and secondary care, to evaluate the cost-effectiveness of four primary care initiated strategies: (1) routine liver function tests with follow-up ultrasonography for test-positives, (2) the enhanced liver fibrosis (ELF) test with hospital liver stiffness measurement (LSM) for positives, (3) a three-tier strategy using the Forns Index to control before strategy 2, and (4) direct referral of all to LSM. We used linked decision trees and Markov models to evaluate outcomes short term (cost-per-accurate diagnosis) and long term (quality-adjusted life-years [QALYs]). For low-prevalence populations, ELF with LSM follow-up was most cost-effective, both short term (accuracy 96%, $196 per patient) and long term (incremental cost-effectiveness ratio [ICER] $5,387-$8,430/QALY), depending on whether diagnostic testing had lasting or temporary effects on abstinence rates. Adding Forns Index decreased costs to $72 per patient and accuracy to 95%. The strategy resulted in fewer QALYs due to more false negatives but an ICER of $3,012, making this strategy suited for areas with restricted access to ELF and transient elastography or lower willingness-to-pay. For high-prevalence populations, direct referral to LSM was highly cost-effective (accuracy 93%, $297 per patient), with ICERs between $490 and $1,037/QALY. CONCLUSIONS: Noninvasive screening for advanced alcohol-related fibrosis is a cost-effective intervention when different referral pathways are used according to the prevalence of advanced fibrosis. Patients in the primary health care sector should be tested with the ELF test followed by LSM if the test was positive, whereas direct referral to LSM is highly cost-effective in high-prevalence cohorts.

Achieving a useful and person-centred diabetes consultation is a shared responsibility between diabetologists and people with diabetes: a qualitative study of perspectives from people with type 1 diabetes.

AIMS: To explore perceptions of useful routine consultations with diabetologists from the perspective of adults with type 1 diabetes, including preferences for discussing psychosocial issues. METHODS: We conducted semi-structured interviews in 2018/2019 with 33 people with type 1 diabetes (age 22-75 years, 20 men and 13 women, median diabetes duration 25 years) recruited from two diabetes clinics in the capital region of Denmark. Interviews were audio recorded, transcribed verbatim and analysed using thematic text condensation. RESULTS: Achieving a useful consultation was perceived as a shared responsibility between people with diabetes and diabetologists. Participants' perspectives of what constitutes a useful consultation and expectations for both consultation and diabetologist varied in relation to perceptions of (1) the interaction between the person with diabetes and diabetologist, including being prepared, being honest, experiencing good rapport and preferring a partnership with the diabetologist or 'keeping it clinical' and (2) the diabetologist's approach to diabetes care, including providing up-to-date knowledge and listening and showing understanding. CONCLUSIONS: Both content and style of diabetes consultations need to be adapted to the individual person with type 1 diabetes. People with diabetes have an important role in expressing their needs and preferences related to both content and style. Diabetologists need to be aware of and attentive to the many individual needs and expectations among people with diabetes, including the desire and need to discuss psychosocial issues. Dialogue tools for preparation and in consultations may enable people with diabetes to voice their needs and expectations and diabetologists to juggle these diversities.

Patient and paramedic experiences with a direct electronic referral programme for focused hypoglycaemia education following paramedic service assist-requiring hypoglycaemia in London and Middlesex County, Ontario, Canada.

AIMS: Hypoglycaemia is a common treatment consequence in diabetes mellitus. Prior studies have shown that a large proportion of people with paramedic assist-requiring hypoglycaemia prefer not to be transported to hospital. Thus, these episodes are "invisible" to their usual diabetes care providers. A direct electronic referral programme where paramedics sent referrals focused hypoglycaemia education at the time of paramedic assessment was implemented in our region for 18 months; however, referral programme uptake was low. In this study, we examined patient and paramedic experiences with a direct electronic referral programme for hypoglycaemia education postparamedic assist-requiring hypoglycaemia, including barriers to programme referral and education attendance. METHODS: We surveyed paramedics and conducted semistructured telephone interviews of patients with paramedic-assisted hypoglycaemia who consented to the referral programme and were scheduled for an education session in London and Middlesex County, Canada. RESULTS: Paramedics and patient participants felt that the direct referral programme was beneficial. A third of paramedics who responded to our survey used the referral programme for each encounter where they treated patients for hypoglycaemia. Patients felt very positive about the referral programme and their paramedic encounter; however, they described embarrassment, guilt and prior negative experience as key barriers to attending education. CONCLUSIONS: Paramedics and patients felt that direct referral for focused hypoglycaemia education postparamedic assist-requiring hypoglycaemia was an excellent strategy. Despite this, referral programme participation was low and thus there remain ongoing barriers to implementation and attendance. Future iterations should consider how best to meet patient needs through innovative delivery methods.

Parental expectations before and after 12-month experience with video consultations combined with regular outpatient care for children with type 1 diabetes: a qualitative study.

AIM: To explore parents' expectations of the perceived barriers to and benefits of 1 year of monthly video consultations combined with regular outpatient care of children with type 1 diabetes. METHODS: The Virtual Diabetes Outpatient Clinic for Children and Youth (VIDIKI) study was a controlled, multicentre, perennial study with 240 participants from northern Germany. Fifty-four qualitative interviews with parents were analysed using qualitative content analysis. Before the intervention, 30 interviews were conducted to assess parents' expectations, and after 1 year, 24 interviews evaluated the experienced benefits and barriers to video consultations. RESULTS: Four main topics were identified from parents' responses to the video consultation. The main advantages of the video consultation compared with standard care were a higher frequency of contact for optimized insulin dosing and saving time; difficulties with internet connections were identified as the main barrier. A feeling of increased confidence with respect to insulin dosing was directly associated with telemedicine. Digital prescriptions and meeting the same diabetologist in both outpatient and telemedical care were mentioned as important improvements. The majority of interviewees preferred intervals of 4-6 weeks between video consultations. CONCLUSION: The higher frequency of contact with the diabetes team was considered a great relief by parents of children with type 1 diabetes. Apart from the time savings and flexibility in appointments, the most important advantages were the higher frequency of contact leading to short-term therapy adjustments and an increase in the ability to adjust therapy independently. (German Clinical Trials Registry No: DRKS00012645).

Building a network of TP53 and IGHV testing reference centers across Spain: the Red53 initiative.

Among the different biomarkers predicting response in chronic lymphocytic leukemia (CLL), the most influential parameters are the mutational status of the IGHV genes and the presence of TP53 gene disruptions. Nevertheless, these important assessments are not readily available in most centers dealing with CLL patients. To provide this molecular testing across the country, the Spanish Cooperative Group on CLL (GELLC) established a network of four analytical reference centers. A total of 2153 samples from 256 centers were analyzed over a period of 30 months. In 9% of the patients, we found pathological mutations in the TP53 gene, whereas 48.96% were classified as IGHV unmutated. Results of the satisfaction survey of the program showed a Net Promoter Score of 85.15. Building a national network for molecular testing in CLL allowed the CLL population a broad access to complex biomarkers analysis that should translate into a more accurate and informed therapeutic decision-making.

Supportive and palliative care in hemato-oncology: how best to achieve seamless integration and subspecialty development?

While recent medical advances have led to cure, remission, or long-term disease control for patients with hematologic malignancy, many still portend poor prognoses, and frequently are associated with significant symptom and quality of life burden for patients and families. Patients with hematological cancer are referred to palliative care (PC) services less often than those with solid tumors, despite higher inpatient mortality and shorter interval between first consultation and death. The complexity of individual prognostication, ongoing therapeutic goals of cure, the technical nature and complications of treatment, the intensity of medical care even when approaching end of life, and the speed of change to a terminal event all pose difficulties and hinder referral. A modified palliative care model is an unmet need in hemato-oncology, where PC is introduced early from the diagnosis of hematological malignancy, provided alongside care of curative or life-prolonging intent, and subsequently leads to death and bereavement care or cure and survivorship care depending on disease course. From current evidence, the historical prioritization of cancer care at the center of palliative medicine did not guarantee that those diagnosed with a hematological malignancy were assured of referral, timely or otherwise. Hopefully, this article can be a catalyst for debate that will foster a new direction in integration of clinical service and research, and subspecialty development at the interface of hemato-oncology and palliative care.

Achieving universal genetic assessment for women with ovarian cancer: Are we there yet? A systematic review and meta-analysis.

PURPOSE: Several professional organizations recommend universal genetic assessment for people with ovarian cancer as identifying pathogenic variants can affect treatment, prognosis, and all-cause mortality for patients and relatives. We sought to evaluate the literature on genetic assessment for women with ovarian cancer and determine if any interventions or patient characteristics drive utilization of services. METHODS: We searched key electronic databases to identify trials that evaluated genetic assessment for people with ovarian cancer. Trials with the primary aim to evaluate utilization of genetic assessment with or without interventions were included. Eligible trials were subjected to meta-analysis and the moderating influence of health interventions on rates of genetic assessment were examined. RESULTS: A total of 35 studies were included (19 report on utilization of genetic services without an intervention, 7 with an intervention, and 9 with both scenarios). Without an intervention, pooled estimates for referral to genetic counseling and completion of genetic testing were 39% [CI 27-53%] and 30% [CI 19-44%]. Clinician-facilitated interventions included: mainstreaming of genetic services (99% [CI 86-100%]), telemedicine (75% [CI 43-93%]), clinic-embedded genetic counselor (76% [CI 32-95%]), reflex tumor somatic genetic assessment (64% [CI 17-94%]), universal testing (57% [28-82%]), and referral forms (26% [CI 10-53%]). Random-effects pooled proportions demonstrated that Black vs. White race was associated with a lower rate of genetic testing (26%[CI 17-38%] vs. 40% [CI 25-57%]) as was being un-insured vs. insured (23% [CI 18-28%] vs. 38% [CI 26-53%]). CONCLUSIONS: Reported rates of genetic testing for people with ovarian cancer remain well below the goal of universal testing. Interventions such as mainstreaming can improve testing uptake. Strategies aimed at improving utilization of genetic services should consider existing disparities in race and insurance status.

Embedding a genetic counselor into oncology clinics improves testing rates and timeliness for women with ovarian cancer.

OBJECTIVE: Germline genetic testing is crucial to the care of ovarian cancer patients, and as part of the guideline-based care for ovarian cancer patient's adherence to this recommendation has been low. We sought to determine whether embedding a genetic counselor (GC) within a medical and gynecologic oncology clinic would increase testing rates and improve the timeliness of testing. METHODS: Prospective cohort study of 358 ovarian cancer patients seen by medical and gynecologic oncologists between 2013 and 2015. Rates of referrals, completion of counseling, and genetic testing and timeliness of counseling were abstracted before and after a GC was embedded in the clinic in 2014. An additional year of data (2015) was collected to evaluate sustainability of the intervention. RESULTS: Between 2013 and 2015, 88-92% of women were referred for genetic testing, but in 2013 only 66% completed counseling and 61% were tested. After a GC was embedded in the clinic in 2014, more than 80% of referred women completed counseling and germline genetic testing. Time to genetic counseling also decreased from a median of 107 to 40 days, irrespective of age and cancer family history (p < 0.01). CONCLUSIONS: Embedding a GC into the workflow for ovarian cancer patients is an effective way of improving access to genetic counseling, testing rates, and the timeliness of testing.