This study aimed to examine the early impact of the Program of Comprehensive Assistance for Family Caregivers (PCAFC) on Veteran health care utilization and costs. A pre-post cohort design including a nonequivalent control group was used to understand how Veterans’ use of Veteran Affairs health care and total health care costs changed in 6-month intervals up to 3 years after PCAFC enrollment. The control group was an inverse probability of treatment weighted sample of Veterans whose caregivers applied for, but were not accepted into, PCAFC. Veterans in PCAFC had similar acute care utilization postenrollment when compared with those in the control group, but significantly greater primary, specialty, and mental health outpatient care use at least 30, and up to 36, months postenrollment. Estimated total health care costs for PCAFC Veterans were $1,500 to $3,400 higher per 6-month interval than for control group Veterans. PCAFC may have increased Veterans’ access to care.

Despite the important role that family caregivers play managing the care of persons with complex health needs, little is known about how caregivers perceive themselves to be recognized and valued by health care professionals. Our objective was to develop and validate a novel measure, the CAregiver Perceptions About Commun Ication with Clinical Team members (CAPACITY) instrument. Questions focus on perceived quality of communication with the health care team and the extent to which caregivers believe that the health care team considers their capacity and preferences in decision making. A confirmatory factor analysis supported a two-factor solution addressing communication and capacity. Internal consistency reliability was .90 for the communication domain and .93 for the capacity domain. Correlations between these two subscales and individual difference measures provided evidence of convergent and discriminant validity. The CAPACITY instrument may be a useful performance measure that quantifies the extent to which caregivers' experience person- and family-centered health care.

Introduction: In May 2010, the Caregivers and Veterans Omnibus Health Services Act of 2010, was signed into law in the United States, establishing the Program of Comprehensive Assistance for Family Caregivers (PCAFC) provided through the VA Caregiver Support Program (CSP). Prior to this program, over half of family caregivers reported being untrained for the tasks they needed to provide. The training through PCAFC represents the largest effort to train family caregivers in the U.S., and the features of the program, specifically a monthly stipend to caregivers and access to a Caregiver Support Coordinator at each VA medical center nationally, make it the most comprehensive caregiver support program ever enacted in the U.S. Methods: The purpose of this study is to examine the association between PCAFC participation and caregiver well-being following enrollment, comparing participating PCAFC caregivers to caregivers who applied to but were not approved for PCAFC participation (non-participants). Well-being is defined using three diverse but related outcomes: depressive symptoms, perceived financial strain, and perceived quality of the Veteran's health care. Additional well-being measures also examined include the Zarit Burden Inventory and positive aspects of caregiving. Results: The survey sample comprised of 92 caregivers approved for PCAFC and 66 caregivers not approved. The mean age of responding caregivers was 45; over 90% of caregivers were female; and over 80% of caregivers were married in both groups. We find promising trends in well-being associated with PCAFC participation. First, the perception of financial strain declined among participants compared to non-participants. Second, while depressive symptoms did not improve for the PCAFC caregivers, depressive symptoms increased among non-participants. Third, perceived quality of the Veteran's VA healthcare was no different between participants and non-participants. However, the 158 returned surveys reflect only a 5% response rate; hence this evidence is preliminary. Conclusion: Despite cautioning that results be interpreted as preliminary, this study provides unique descriptive information about young caregivers of U.S. post-9/11 Veterans, and offers a first step in filling the evidence gap about how comprehensive caregiver support in the U.S. may affect caregiver well-being. These preliminary findings should be explored and validated in a larger sample.

Context: The US Congress in 2010 established the Program of Comprehensive Assistance for Family Caregivers (PCAFC) in the Department of Veterans Affairs' (VA) healthcare system, expanding services for family caregivers of eligible veterans with injuries sustained or aggravated in the line of duty on or after 11 September 2001. The program includes a Caregiver Support Coordinator, stipends for caregivers, education/training, and additional services. Objective: The primary goal of this study was to examine the types of services that family caregivers of veterans use and value, how services are used and any limitations family caregivers' experienced. Given that few interventions assess caregiver satisfaction with services, there is a gap in the existing literature addressing these outcomes. Methods: We assessed how caregivers use and value services with a national, web-based survey (N=1,407 caregivers) and semi-structured phone interviews (N=50 caregivers). Findings: Caregivers rated all services as helpful and especially valued financial support to be with the veteran, training in skills for symptom management, and assistance with navigating the healthcare system. A majority reported more confidence in caregiving, knowing about resources for caregiving and feeling better prepared to support the veteran's progress and healthcare engagement. However, only a minority reported awareness of the full range of PCAFC services. Limitations: There was a low response rate to the survey, which may have implications for generalisability to the whole population of caregivers accessing PCAFC. Additionally, we rely on self-report rather than objective measures of service use and outcomes. Implications: This is the first in-depth examination of experiences of caregivers of using the innovative PCAFC model of support. It acknowledges the important role of caregivers in health and long-term (social) care delivery and can be used to inform development of strategies outside the VA healthcare system to recognise caregivers. Findings suggest that a system-wide program to effectively include caregivers as part of the care team should include mechanisms to help connect caregivers with an array of resources, options from which to find those which best fit their personal needs and preferences.

The VA Program of Comprehensive Assistance for Family Caregivers (PCAFC) provides landmark support for family caregivers of post-9/11 veterans. This study examines PCAFC support for veterans with and without PTSD and assesses whether program effect differs by PTSD status using a pre-post, non-equivalent, propensity score weighted comparison group design (n = 24,280). Veterans with and without PTSD in PCAFC accessed more mental health, primary, and specialty care services than weighted comparisons. PCAFC participation had stronger effects on access to primary care for veterans with PTSD than for veterans without PTSD. For veterans with PTSD, PCAFC support might enhance health service use.

Family caregivers are an important component of the long-term services and supports (LTSS) system. However, caregiving may have negative consequences for caregiver physical and emotional health. Connecting caregivers to formal short-term home- and community-based services (HCBS), through information resources and referrals, might alleviate family caregiver burden and delay nursing home entry for the patient. The aim of this study was to evaluate the early impact of the Program of Comprehensive Assistance for Family Caregivers (PCAFC) (established by P.L. 111-163 for family caregivers of seriously injured post-9/11 Veterans) on Veteran use of LTSS. A two-cohort pre-post design with a nonequivalent comparison group (treated n = 15 650; comparison n = 8339) was used to (1) examine the association between caregiver enrollment in PCAFC and any VA-purchased or VA-provided LTSS use among Veterans and (2) describe program-related trends in HCBS and institutional LTSS use. The comparison group was an inverse-propensity-score weighted sample of Veterans whose caregivers applied for, but were not accepted into, the program. From baseline through 24 months post application, use of any LTSS ranged from 13.1% to 17.8% for Veterans whose caregivers were enrolled in PCAFC versus from 3.8% to 5.3% for Veterans in the comparison group. Participation in PCAFC was associated with a statistically significant increased use of any LTSS from 1 to 24 months post application (over time odds ratios ranged from 2.71 [95% confidence interval: 2.31-3.17] to 4.86 [3.93-6.02]). Support for family caregivers may enhance utilization of LTSS for Veterans with physical, emotional, and/or cognitive conditions.

Introduction The Lobular Breast Cancer Alliance (LBCA) was founded in 2017 by patient advocates attending the First International Invasive Lobular Breast Cancer Symposium sponsored by the University of Pittsburgh. The conference underscored that invasive lobular breast cancer (ILC) is an understudied unique subtype of breast cancer requiring refinements in treatments. ILC is the sixth most frequently diagnosed cancer of women and the second most common histological subtype of breast cancer with more than 39,000 patients diagnosed a year in the U.S. LBCA’s goals are to advance research and educate about ILC. Challenges An early goal of LBCA was to address the absence of a central source of quality information about lobular breast cancer. A website, lobularbreastcancer.org, launched December, 2017 with over 98,000 hits to-date. It is maintained by patient-advocate volunteers with content reviewed by LBCA’s Scientific Advisory Board. Methods A survey of users was conducted from May 1 to June 3, 2019 to determine value of the website to users and identify potential ways to improve it. Specific goals were: Understand who was visiting the site, identify the information sought, obtain feedback on the usefulness of content, and seek input on content and navigation. Results The online survey was taken by 950 participants. Current or former patients treated for lobular breast cancer comprised 94.7% of respondents. 75.8% were from U.S. Health professionals/researchers represented 3.04% of responders. Patients ranged in age from under 35 to over 75 years; 71.5% were 46-65 years. Most (66.5%) had Stage 1-2 disease at time of diagnosis; 7% reported de novo metastatic disease. An additional 9% reported a metastatic recurrence. LBCA (43.8%), other cancer organizations (43.2%),and Internet searches (38.3%) were the most frequently used sources for information about lobular breast cancer; doctor/health care provider ranked fourth (35.3%). The survey confirmed that LBCA goals for the website were aligned with the reason responders visited - i.e., general information (33%), research/clinical trials (21.9%) and treatment information (17.8%). Most consulted the site 2-4 times (46%), 11% visited more than 10 times. Nearly all responders (83.7%) found the information they were seeking, and (45.4%) agreed that the LBCA website provided information they could not find elsewhere. There were 249 participants who responded to an open ended question with 273 recommendations for the site. The largest category of requests (17%) was for more frequent updates of research and treatment guidelines; requests for a list of providers with expertise in treating ILC patients and for LBCA to provide additional education about ILC to MDs/clinicians ranked second and third (11%). Conclusions LBCA is driving increased awareness of lobular breast cancer by sponsoring a website devoted to providing research-based information about lobular breast cancer. There were a number of actionable suggestions regarding organization and navigation of the LBCA website. Results confirmed that the LBCA goals for the website are aligned with the reason responders visited. Primarily, users searched for general information about ILC (33%), research/clinical trials (21.9%) and treatment information (17.8%). The need for a central online source for information about lobular breast cancer was confirmed by findings that the most frequently used sources of information about lobular were the LBCA, other cancer organizations and Internet searches. Doctors/health care providers ranked fourth as a source of information about lobular disease. Many responders wanted the website to list ILC treatment specialists, address the gap in provider expertise about ILC detection and treatment, and report research and treatment guidelines specifically for ILC. Citation Format: Lori Petitti, Janice Axelrod, Margaret Campbell-Kotler, Julia Levine, Flora Migyanka, Elizabeth Viggiano, Steffi Oesterreich, Leigh Pate. Survey of Lobular Breast Cancer Alliance website users confirms value and identifies unmet information needs [abstract]. In: Proceedings of the 2019 San Antonio Breast Cancer Symposium; 2019 Dec 10-14; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2020;80(4 Suppl):Abstract nr P1-16-02.

Introduction Thirty patient advocates attended the First International Invasive Lobular Breast Cancer Symposium in 2016 at the University of Pittsburgh Cancer Center. The conference underscored that invasive lobular breast cancer (ILC) and other lobular pathologies are understudied. Specifically: ILC is the sixth most prevalent cancer of women and the second most frequently diagnosed histological subtype of breast cancer impacting up to 34,000 patients a year in the US. ILC is a molecularly distinct breast cancer with unique subtypes and variants with differences in presentation and behavior, including physical findings of thickening and a tendency to metastasize to unique locations. While ILC is frequently associated with a good initial prognosis, recent analysis suggests that long-term outcomes of ILC may be worse than those stage-matched to ductal breast cancer. Current imaging tools are less reliable for early detection of lobular disease and detection of distant recurrence. Standard of care chemotherapy and endocrine therapies may have different effectiveness applied to ILC and IDC. Challenges Growing interest in ILC research requires improved methods to identify, communicate with and link patients with ILC to clinical trials and research. Advocates with advanced science training are needed as partners for research proposals and grant reviews. Lobular breast cancer is under-represented in key meetings and literature. Encouraging opportunities to share ILC research as agenda topics and fostering collaborations between researchers, clinicians and advocates can accelerate progress and refine clinical practices for screening, treatment and follow-up. Patients living with ILC lack a central on-line source of lobular breast cancer information and resources. This information gap is a barrier to help patients recognize signs of lobular breast cancer's unique presentation and metastatic behaviors. Results The Lobular Breast Cancer Alliance (LBCA) was formed by patient advocates who attended the First International ILC Symposium in response to advocate-identified opportunities to advance research, refine treatments and enhance patient education. LBCA's mission is to bridge patients, clinicians and researchers to increase our knowledge of lobular breast disease and promote research that leads to advancements in prevention, diagnosis, treatment and patient follow-up care. Conclusions LBCA is driving an increased awareness of lobular breast cancer with specific goals: Build a clinically accurate, patient centered website devoted to lobular breast cancer at www.LobularBreastCancer.org. Elevate lobular research and foster opportunities for researcher, advocate and clinician collaborations at prominent conferences and meetings. Identify barriers to conduct research on ILC and metastasis and link patients and advocates to ILC tumor research and clinical trials. Initiate peer-to-peer clinician outreach strategy through targeted literature, meetings and education services to share information on ILC presentation, metastatic patterns and screening and treatment challenges of patients with ILC. Build partnerships with existing breast cancer organizations to integrate ILC into existing information resources and work on common goals. Citation Format: Petitti L, Axelrod J, Campbell-Kotler M, Frank E, Jaremek J, Levine J, McWilliams M, Migyanka F, Ryan N, Viggiano E, Metzger-Filho O, Oesterreich S, Pate L. Lobular breast cancer alliance - Advocates advancing research, screening, treatment and follow-up care for lobular breast disease [abstract]. In: Proceedings of the 2017 San Antonio Breast Cancer Symposium; 2017 Dec 5-9; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2018;78(4 Suppl):Abstract nr P5-17-01.