"The place it puts us in emotionally and relationally with our child, it's damaging": understanding the real-world psychosocial needs of caregivers of childhood cancer survivors.

PURPOSE: Understanding the lived experiences of childhood cancer caregivers can guide the development of effective psychosocial models of care. We conducted this qualitative study to understand triggers that impact the mental health, quality of life, and mental health supportive care needs of caregivers. METHODS: A maximum variation sampling strategy was used to recruit study participants for semi-structured interviews. Using a grounded theory approach, transcripts were independently dual-coded using inductive thematic analysis. We conducted a secondary thematic analysis emphasizing the impact of pediatric oncology on caregiver mental health. RESULTS: Our findings highlight caregiver experiences connected to their child's appearance, quality of life, or change in behavior. Caregivers reported the need to transition between the role of nurturer and protector and simultaneously be part of the care team, which increased trauma for caregivers and their children. Caregivers noted that the hardest part of being a caregiver is witnessing, participating, and forcing the child to comply with cancer treatment. Caregivers were left wishing there had been more support for these situations. CONCLUSION: Our findings reveal real-world experiences that caregivers view as among the most stressful during their child's cancer journey. These events provide insight into the nuanced and most difficult experiences from the caregiver perspective in which emotional support services would be most useful. These insights will inform a future model for mental healthcare. IMPLICATIONS FOR CANCER SURVIVORS: Caregivers' treatment-related stress is associated with the quality of life of pediatric cancer patients. Supporting the mental health, quality of life, and mental health supportive care needs of childhood cancer caregivers through supportive care guidelines may positively impact the caregiver-child relationship long into survivorship.  Children's and their caregivers' treatment-related stress are indelibly connected to the quality of life concerns throughout the cancer journey. Supporting the mental health, quality of life, and mental health supportive care needs of childhood cancer caregivers through supportive care guidelines will positively impact the caregiver-child relationship long into survivorship.

Family perspectives on the transition from active treatment to survivorship for children with cancer.

BACKGROUND: Completing therapy for childhood cancer is an exciting milestone. However, this adjustment can be extremely stressful for patients and their families as they transition from cancer patient to survivor. A better understanding of the patient and family experience and their needs during this transition is crucial for developing guidelines and leveraging support for future patients and families. PROCEDURE: Participants were recruited from across the United States using a maximum variation sampling strategy. Families were eligible if they had a child diagnosed with cancer before age 15 and had completed treatment at least 1 year prior to their interview. Participants completed a 90-180-minute semi-structured interview either in person or virtually. Interviews focused on the experiences of getting a diagnosis, experiences with treatment, information seeking, impact of cancer on the family, social support, and transitions to survivorship. Inductive thematic analysis revealed a wide variety of themes. This paper examines the transition from active cancer therapy into survivorship. RESULTS: Identified primary themes included (i) feelings about transitioning off therapy; (ii) coping with lingering effects; and (iii) experiences of transitioning off therapy and survivorship care. Subthemes highlighted the need for more support for both patients and families during this transition. CONCLUSION: Patients and families desire more support during the transition off therapy. Suggestions included access to additional resources, earlier transition to receiving survivorship care, and more holistic survivorship care. Further research is needed to determine best models and feasibility of delivering this desired support to all patients and families.

'Never once was I thinking the c-word': Parent perspectives on the facilitators and barriers to getting a childhood cancer diagnosis.

AIMS AND OBJECTIVES: To describe the facilitators and barriers of getting from 'something's not right' to a childhood cancer diagnosis from the perspective of parents living in the United States of America. BACKGROUND: It is common for families to experience long trajectories from when they first notice symptoms to receiving a childhood cancer diagnosis. Understanding this trajectory within the social and cultural contexts of the United States healthcare system is the first step in developing strategies for reducing this timeframe and mitigating some of the psychosocial impact for parents in receiving a childhood cancer diagnosis. This study examines the interpretations and meanings parents attributed to their child's symptoms, their decisions regarding seeking medical care, interactions with healthcare providers and the time course of events. DESIGN: An inductive qualitative inquiry. METHODS: In-depth, semi-structured interviews with 55 participants representing 39 unique cases of childhood cancer were conducted. Data were analysed using an inductive thematic approach. COREQ guidelines were followed. RESULTS: Participants described multiple barriers and facilitators in their path to receiving a childhood cancer diagnosis. Facilitators included noticing something 'wasn't right' and physician in agreement that symptoms were unusual; acute symptoms requiring action; advocating for a diagnosis; and obtaining a second opinion. Barriers included parents having to interpret symptoms in the context of daily life; physician dismissiveness even when symptoms persisted; and not feeling they could question their physician's assessment. CONCLUSION: Families experience multiple facilitators and barriers in their trajectory to receiving a childhood cancer diagnosis. RELEVANCE TO CLINICAL PRACTICE: Understanding the path to diagnosis from the parent perspective may increase opportunities for shared decision-making. Clinician educational modules that include family perspectives may improve patient/parent-provider relationships. PARTICIPANT CONTRIBUTION: Participants described their family's cancer journey through narrative storytelling. Participants had the opportunity to review and make edits to their transcript.

Disparities in Colorectal Cancer Screening in Latinos and Non-Hispanic Whites.

INTRODUCTION: Colorectal cancer is the second leading cause of cancer deaths in Latinos in the U.S., but it is unclear, from previous research, whether Latinos have differing rates of colorectal cancer screening methods from those of non-Hispanic Whites. METHODS: This study used electronic health records from 686 community health centers across 21 states in the Accelerating Data Value Across a National Community Health Center of the National Patient-Centered Clinical Research Network. Records from English-preferring Latinos, Spanish-preferring Latinos, and non-Hispanic Whites aged 50-75 years were included. A total of 5 outcomes were compared between 2012 and 2017 to provide a comprehensive view of colorectal cancer screening: (1) any colorectal cancer screening, (2) stool-based screening, (3) annual rates of stool testing, (4) any referral for lower gastrointestinal endoscopy, and (5) endoscopy referral among patients with a positive stool-based screening. RESULTS: In this study (N=204,243), Spanish-preferring Latinos had higher odds of any colorectal cancer screening (OR=1.44, 95% CI=1.23, 1.68) and stool-based testing (OR=1.82, 95% CI=1.55, 2.13) than non-Hispanic Whites. English- and Spanish-preferring Latinos had lower odds of having ever had a referral for endoscopy in the study period than non-Hispanic Whites (English: OR=0.23, 95% CI=0.15, 0.34; Spanish: OR=0.55, 95% CI=0.40, 0.74), even with a positive stool-based screening (English: OR=0.14, 95% CI=0.06, 0.33; Spanish: OR=0.33, 95% CI=0.19, 0.57). CONCLUSIONS: In a multistate network of community health centers, Latino patients aged >50 years were more likely to receive stool-based screening tests for colorectal cancer than non-Hispanic Whites but were less likely to receive endoscopy referrals than non-Hispanic Whites, even when experiencing a positive stool-based screening test. Initiatives to improve Latino colorectal cancer outcomes should encourage indicated referrals for lower gastrointestinal endoscopy.

Leveraging a qualitative data repository to integrate patient and caregiver perspectives into clinical research.

Understanding patient and caregiver experiences is a critical component of the conception, design, and implementation of clinical research studies. The "Database of Individual Patient Experiences" (DIPEx) is an innovative, evidence-based approach for eliciting rich information about health experiences. We conducted a formative evaluation with 14 pediatric oncology researchers to assess the value of using data from a DIPEx study on patient and caregiver experiences with childhood cancer to inform patient-centered research in pediatric oncology. Participants identified barriers to incorporating patient perspectives and experiences into their research and how the DIPEx approach could be leveraged to facilitate this practice.

Clinic factors associated with utilization of a pregnancy-intention screening tool in community health centers.

OBJECTIVE: Routine pregnancy-intention screening in the primary care setting is a promising practice to help patients achieve their reproductive goals. We aim to describe the utilization of a pregnancy-intention screening tool integrated in the electronic health record (EHR) of a national network of community health centers (CHCs) and identify clinic-level factors associated with tool use. STUDY DESIGN: We conducted a clinic-level retrospective observational study to assess tool utilization during the first 3 years after the tool was made available in the EHR (November 2015 to October 2018). We describe characteristics of clinics with higher tool utilization (≥90th percentile) versus lower utilization (<90th percentile) and the types of providers who used the tool. We then employ negative binomial regression to identify independent clinic-level factors associated with tool utilization. RESULTS: Across 194 clinics in our study sample which served 289,754 eligible female patients, the tool was used for 113,116 (39%). Medical assistants performed 60.3% of screenings and clinicians performed 11.2%. CHCs with higher tool utilization rates were more likely to be located in rural settings (RR 1.75, 95% CI 1.07-2.87) and serve patient populations with higher proportions of women (RR 1.32, 95% CI 1.24-1.41) and lower proportions of patients with non-English language preference (RR 0.92, 95% CI 0.89-0.95). CONCLUSIONS: Many health centers utilized pregnancy-intention screening after an EHR-based tool was made available, though overall screening rates were low. IMPLICATIONS: Additional study of implementation strategies and effectiveness of pregnancy-intention screening tools is needed. Implementation of future pregnancy-intention screening interventions must be tailored to address clinic-level barriers and facilitators to screening.

Parental decision making regarding consent to randomization on Children's Oncology Group AALL0932.

BACKGROUND: Within pediatric oncology, parental decision making regarding participation in clinical trials that aim to reduce therapy to mitigate side effects is not well studied. The recently completed Children's Oncology Group trial for standard-risk acute lymphoblastic leukemia (AALL0932) included a reduction in maintenance therapy, and required consent for randomization immediately prior to starting maintenance. At our institution, 40% of children enrolled on AALL0932 were withdrawn from protocol therapy prior to randomization due to parental choice. This study sought to identify factors that impacted parental decision making regarding randomization on AALL0932. PROCEDURE: Parents of children enrolled on AALL0932 at our institution were eligible if their child met criteria for the average-risk randomization. Parents were invited to participate in a 30-50-minute phone interview. Questions focused on factors that shaped parental decision making about randomization, as well as their perspectives about the clinical trial experience more generally. RESULTS: Fear of receiving less therapy and subsequent relapse was the predominant reason to decline randomization. Reasons given for consenting to randomization included trust in the physician, altruism, hope for less therapy, and potential for fewer side effects. Parents also reflected on ways to support future families making decisions about clinical trial participation. CONCLUSION: While many parents recognize the importance of clinical trials aiming to mitigate side effects, the fear of their own child relapsing with less than standard therapy may dissuade them from study participation. Recognizing and addressing these concerns will be important for enrollment and retention in future clinical trials.

The impact of capitated payment on preventive care utilization in community health clinics.

Only half of the United States population regularly receives recommended preventive care services. Alternative payment models (e.g., a per-member-per-month capitated payment model) may encourage the delivery of preventive services when compared to a fee-for-service visitbased model; however, evaluation is lacking in the United States. This study assesses the impact of implementing Oregon's Alternative Payment Methodology (APM) on orders for preventive services within community health centers (CHCs). This retrospective cohort study uses electronic health record data from the OCHIN, Inc., 2012-2018, analyzed in 2018-2019. Twenty-seven CHCs which implemented APM in 2013-2016 were compared to six non-APM CHCs. Clinic-level quarterly rates of ordering nine preventive services in 2012-2018 were calculated. For each phase and preventive service, we used difference-in-differences analysis to assess the APM impact on ordering preventive care. We found greater increases for APM CHCs compared to non-APM CHCs for orders of mammograms (difference-in-differences estimates (DDs) across four phases:1.69-2.45). Both groups had decreases in ordering cervical cancer screenings, however, APM CHCs had smaller decreases (DDs:1.62-1.93). The APM CHCs had significantly greater decreases in influenza vaccinations (DDs:0.17-0.32). There were no consistent significant differences in pre-post changes in APM vs. non-APM CHCs for cardiometabolic risk screenings, smoking status and depression assessments. There was nonsignificant change in the proportion of nontraditional encounters in APM clinics compared to controls. Transition from fee-for-service to an APM did not negatively impact delivery of preventive care. Further studies are needed to understand how to change encounter structures to best deliver recommended preventive care.

Impacts of the Affordable Care Act on Receipt of Women's Preventive Services in Community Health Centers in Medicaid Expansion and Nonexpansion States.

BACKGROUND: The Affordable Care Act (ACA) increased health insurance coverage throughout the United States and improved care delivery for some services. We assess whether ACA implementation and Medicaid expansion were followed by greater receipt of recommended preventive services among women and girls in a large network of community health centers. METHODS: Using electronic health record data from 354 community health centers in 14 states (10 expansion, 4 nonexpansion), we used generalized estimating equations and difference-in-difference methods to compare receipt of six recommended preventive services (cervical cancer screening, human papilloma virus vaccination, chlamydia screening, influenza vaccination, human immunodeficiency virus screening, and blood pressure screening) among active female patients ages 11 to 65 (N = 711,121) before and after ACA implementation and between states that expanded versus did not expand Medicaid. RESULTS: Except for blood pressure screening, receipt of all examined preventive services increased after ACA implementation in both Medicaid expansion and nonexpansion states. Influenza vaccination and blood pressure screening increased more in expansion states (adjusted absolute prevalence difference-in-difference, 1.55; 95% confidence interval, 0.51-2.60; and 1.98; 95% confidence interval, 0.91-3.05, respectively). Chlamydia screening increased more in nonexpansion states (adjusted absolute prevalence difference-in-difference: -4.21; 95% confidence interval, -6.98 to -1.45). Increases in cervical cancer screening, human immunodeficiency virus screening, and human papilloma virus vaccination did not differ significantly between expansion and nonexpansion states. CONCLUSIONS: Among female patients at community health centers, receipt of recommended preventive care improved after ACA implementation in both Medicaid expansion and nonexpansion states, although the overall rates remained low. Continued support is needed to overcome barriers to preventive care in this population.

Discordant Patient and Clinician Perspectives on the Potential Value of Genetic Services in Safety-Net Clinics.

PURPOSE: As new genetic services become available, their implementation in safety-net settings must be studied. METHODS: We interviewed stakeholders (patients and primary care clinicians) from federally qualified health centers to discuss the utility, acceptability, and priority of new genetic services. We presented scenarios tailored for each audience describing carrier testing, diagnostic testing for a developmental delay, and hereditary cancer syndrome testing. We summarized transcripts using the framework method and compared patient and clinician perspectives. RESULTS: Clinicians questioned the relevance and priority of genetic services. Hereditary cancer testing was perceived most favorably by clinicians, who focused on actionability, cost, and access to downstream care. Patients stated that access to genetic services was important and that there should be parity across safety-net and higher-resourced settings. CONCLUSIONS: Genetic services with clear clinical impact are more acceptable to clinicians in safety-net clinics. Clinicians may be underestimating patients' interest in expanded genetic services.

Variation in Electronic Health Record Documentation of Social Determinants of Health Across a National Network of Community Health Centers.

INTRODUCTION: This paper describes the adoption of an electronic health record-based social determinants of health screening tool in a national network of more than 100 community health centers. METHODS: In 2016, a screening tool with questions on 7 social determinants of health domains was developed and deployed in the electronic health record, with technical instructions on how to use the tool and suggested clinical workflows. To understand adoption patterns, the study team extracted electronic health record data for any patient with a community health center visit between June 2016 and May 2018. Patients were considered "screened" if a response to at least 1 social determinants of health domain was documented in the electronic health record tool. RESULTS: A total of 31,549 patients (2% of those with a visit in the study period) had a documented social determinants of health screening. The number of screenings increased over time, time; 71 community health centers (67%) conducted at least one screening, but almost 50% took place in only 4 community health centers. Over half (55%) of screenings only included responses for only 1 domain. Screening was most likely to occur during an office visit with an established patient and documented in the electronic health record by a medical assistant. CONCLUSIONS: Screening documentation patterns varied widely across the network of community health centers. Despite the growing national emphasis on the importance of screening for social determinants of health, these findings suggest that simply activating electronic health record tools for social determinants of health screening does not lead to widespread adoption. Potential barriers to screening adoption and implementation should be explored further. SUPPLEMENT INFORMATION: This article is part of a supplement entitled Identifying and Intervening on Social Needs in Clinical Settings: Evidence and Evidence Gaps, which is sponsored by the Agency for Healthcare Research and Quality of the U.S. Department of Health and Human Services, Kaiser Permanente, and the Robert Wood Johnson Foundation.

How 6 Organizations Developed Tools and Processes for Social Determinants of Health Screening in Primary Care: An Overview.

Little is known about how health care organizations are developing tools for identifying/addressing patients' social determinants of health (SDH). We describe the processes recently used by 6 organizations to develop SDH screening tools for ambulatory care and the barriers they faced during those efforts. Common processes included reviewing literature and consulting primary care staff. The organizations prioritized avoiding redundant data collection, integrating SDH screening into existing workflows, and addressing diverse clinic needs. This article provides suggestions for others hoping to develop similar tools/strategies for identifying patients' SDH needs in ambulatory care settings, with recommendations for further research.

Screening for hepatitis C virus infection in adults: a systematic review for the U.S. Preventive Services Task Force.

BACKGROUND: Identification of hepatitis C virus (HCV)-infected persons through screening could lead to interventions that improve clinical outcomes. PURPOSE: To review evidence about potential benefits and harms of HCV screening in asymptomatic adults without known liver enzyme abnormalities. DATA SOURCES: English-language publications identified from MEDLINE (1947 to May 2012), the Cochrane Library Database, clinical trial registries, and reference lists. STUDY SELECTION: Randomized trials and cohort, case-control, and cross-sectional studies that assessed yield or clinical outcomes of screening; studies reporting harms from HCV screening; and large series reporting harms of diagnostic liver biopsies. DATA EXTRACTION: Multiple investigators abstracted and checked study details and quality by using predefined criteria. DATA SYNTHESIS: No study evaluated clinical outcomes associated with screening compared with no screening or of different risk- or prevalence-based strategies. Three cross-sectional studies in higher prevalence populations found that screening strategies that targeted multiple risk factors were associated with sensitivities greater than 90% and numbers needed to screen to identify 1 case of HCV infection of less than 20. Data on direct harms of screening were sparse. A large study of percutaneous liver biopsies (n = 2740) in HCV-infected patients with compensated cirrhosis reported no deaths and a 1.1% rate of serious adverse events (primarily bleeding and severe pain). LIMITATIONS: Modeling studies were not examined. High or unreported proportions of potentially eligible patients in the observational studies were not included in calculations of screening yield because of unknown HCV status. CONCLUSION: Although screening tests can accurately identify adults with chronic HCV infection, targeted screening strategies based on the presence of risk factors misses some patients with HCV infection. Well-designed prospective studies are needed to better understand the effects of different HCV screening strategies on diagnostic yield and clinical outcomes. PRIMARY FUNDING SOURCE: Agency for Healthcare Research and Quality.

Normal motor nerve conduction studies using surface electrode recording from the supraspinatus, infraspinatus, deltoid, and biceps.

OBJECTIVE: Proximal peripheral nerve conduction studies can provide useful information to the clinician. The difficulty of measuring the length of the proximal nerve as well as a frequent inability to stimulate at 2 points along the nerve adds a challenge to the use of electrodiagnosis for this purpose. The purpose of this article is to present normal values for the suprascapular, axillary, and musculocutaneous nerves using surface electrodes while accounting for side-to-side variability. DESIGN: Prospective, observational study. SETTING: Patients were evaluated in outpatient, private practices affiliated with tertiary care systems in the United States and Malaysia. PARTICIPANTS: One hundred volunteers were recruited and completed bilateral testing. Exclusion criteria included age younger than 18 years; previous shoulder surgery/atrophy; symptoms of numbness, tingling, or abnormal sensations in the upper extremity; peripheral neuropathy; or presence of a cardiac pacemaker. METHODS: Nerve conduction studies to bilateral supraspinatus, infraspinatus, deltoid, and biceps brachii muscles were performed with documented technique. Distal latency, amplitude, and area were recorded. Side-to-side comparisons were made. A mixed linear model was fit to the independent variables of gender, race, body mass index, height, and age with each recorded value. MAIN OUTCOME MEASUREMENTS: Distal latency, amplitude, area, and side-to-side variability of nerve conduction studies of the suprascapular, axillary, and musculocutaneous nerves with correlation to significant independent variables. RESULTS: Data are presented showing normal distal latency, amplitude, and area values subcategorized by clinically significant variables, as well as acceptable side-to-side variability. Increased height correlated with increased distal latency in all the nerves tested. Amplitudes were larger in the infraspinatus recordings from women, while the amplitudes from the biceps and deltoid were greater in men. A larger body mass index was associated with a smaller amplitude in the deltoid in men. No correlations were seen with age or race. CONCLUSION: Normative values for distal latency, amplitude, duration, and area were developed for proximal nerve conductions to the axillary, musculocutaneous, and suprascapular nerves. Simple surface electrode placement allows for easy reproduction of the authors' techniques. This is a useful standard to facilitate evaluation of these proximal peripheral nerves.