Daniel S. Gardner

Supplemental Table 1 shows the twopart analysis of the relationship between time since diagnosis (IV) and cost-related nonadherence (DV1) and administrative burden (DV2)

Background:U.S. cancer patients engage in administrative tasks to pay for their healthcare. This study investigated the relationship between payment tasks and timely access to cancer care.Methods:We analyzed online survey data from 510 U.S. cancer patients and survivors to understand the relationship between administrative payment tasks and cost-related delays and nonadherence. Two-part modelling was used to determine if, and to what extent, there was a relationship between administrative burden and cost-related delays/nonadherence.Results:Younger patients (≤44 years) reported more payment tasks and cost-related delays/nonadherence than older patients (≥ 55 years); African American patients reported more payment tasks and cost-related delays/nonadherence than white patients. After accounting for age, race/ethnicity, education, and out-of-pocket costs, patients who reported engaging in more tasks had greater log odds of delaying/forgoing care [b = 0.18; 95% confidence interval (CI), 0.12–0.24]. Cost-related delays/nonadherence increased by 32% for every unit increase in administrative payment burden (b = 0.32; 95% CI, 0.18–0.46).Conclusions:Administrative payment burden increased the odds of cost-related delays and nonadherence by 49%, taking the form of delayed or skipped doctor appointments, tests and bloodwork, and prescription fulfillment. Younger patients and those identifying as African American were more likely to engage in payment tasks and to delay or forgo care due to cost. Administrative burdens can disrupt access to care and traditionally underserved patient populations are disproportionately exposed to these hardships.Impact:Reducing the complexity of healthcare through universal, human-centered design could reduce burdens and increase access.

Background:U.S. cancer patients engage in administrative tasks to pay for their healthcare. This study investigated the relationship between payment tasks and timely access to cancer care.Methods:We analyzed online survey data from 510 U.S. cancer patients and survivors to understand the relationship between administrative payment tasks and cost-related delays and nonadherence. Two-part modelling was used to determine if, and to what extent, there was a relationship between administrative burden and cost-related delays/nonadherence.Results:Younger patients (≤44 years) reported more payment tasks and cost-related delays/nonadherence than older patients (≥ 55 years); African American patients reported more payment tasks and cost-related delays/nonadherence than white patients. After accounting for age, race/ethnicity, education, and out-of-pocket costs, patients who reported engaging in more tasks had greater log odds of delaying/forgoing care [b = 0.18; 95% confidence interval (CI), 0.12–0.24]. Cost-related delays/nonadherence increased by 32% for every unit increase in administrative payment burden (b = 0.32; 95% CI, 0.18–0.46).Conclusions:Administrative payment burden increased the odds of cost-related delays and nonadherence by 49%, taking the form of delayed or skipped doctor appointments, tests and bloodwork, and prescription fulfillment. Younger patients and those identifying as African American were more likely to engage in payment tasks and to delay or forgo care due to cost. Administrative burdens can disrupt access to care and traditionally underserved patient populations are disproportionately exposed to these hardships.Impact:Reducing the complexity of healthcare through universal, human-centered design could reduce burdens and increase access.

Background: U.S. cancer patients engage in administrative tasks to pay for their healthcare. This study investigated the relationship between payment tasks and timely access to cancer care. Methods: We analyzed online survey data from 510 U.S. cancer patients and survivors to understand the relationship between administrative payment tasks and cost-related delays and nonadherence. Two-part modelling was used to determine if, and to what extent, there was a relationship between administrative burden and cost-related delays/nonadherence. Results: Younger patients (≤44 years) reported more payment tasks and cost-related delays/nonadherence than older patients (≥ 55 years); African American patients reported more payment tasks and cost-related delays/nonadherence than white patients. After accounting for age, race/ethnicity, education, and out-of-pocket costs, patients who reported engaging in more tasks had greater log odds of delaying/forgoing care [b = 0.18; 95% confidence interval (CI), 0.12–0.24]. Cost-related delays/nonadherence increased by 32% for every unit increase in administrative payment burden (b = 0.32; 95% CI, 0.18–0.46). Conclusions: Administrative payment burden increased the odds of cost-related delays and nonadherence by 49%, taking the form of delayed or skipped doctor appointments, tests and bloodwork, and prescription fulfillment. Younger patients and those identifying as African American were more likely to engage in payment tasks and to delay or forgo care due to cost. Administrative burdens can disrupt access to care and traditionally underserved patient populations are disproportionately exposed to these hardships. Impact: Reducing the complexity of healthcare through universal, human-centered design could reduce burdens and increase access.

Although palliative care (PC) has become increasingly familiar, considerable gaps persist in access to and use of services. Community-based programs remain rare, and low-income, minority communities significantly under-utilize hospice and palliative services. We used community-based participatory research (CBPR) methods to conduct a mixed-methods community needs assessment of seriously-ill older adults (n=100) and providers from community-based programs and churches (n=41) in an urban medically-underserved community in the U.S. to explore: (I) the prevalence and severity of illness-related symptoms and psychosocial-spiritual concerns; (II) the scope and quality of community supports helping older adults manage their symptoms; and (III) the perceptions and utilization of palliative and supportive care services among older adults and community-based service providers. Participants reported high rates of chronic illness-related symptoms (i.e., pain, fatigue, sleeping difficulties, depression, and anxiety), and many described unmet needs around symptom management. Few had ever utilized PC or pain management services, and most relied primarily on family, friends, and faith communities to help them manage burdensome symptoms. Barriers included lack of familiarity with PC, limited access and financial concerns. Older adults were largely unfamiliar with PC, and many described unmet needs and desire for help with symptom burden. Findings support the need to further explore community-level and cultural barriers to PC among diverse, underserved older adults. Development of innovative community partnerships may help raise awareness of PC and address the physical and psychosocial-spiritual challenges facing chronically-ill minority older adults and their families.

Purpose: To explore the psychosocial needs of cancer patients and survivors across the United States and their implications for value-based oncology. Design: A secondary analysis of findings from a cross-sectional national online survey. Sample: Respondents were sampled and stratified by cancer type and geographic region to approximate the cancer-affected population of the United States. Breast, prostate, and colorectal were the most common cancers reported. Across surveys, the majority of respondents were female (57%), over 55 (60%), and white (70%) and had at least some college (36%). Methods: Six online surveys were administered to cohorts of approximately 500 unique cancer patients and survivors. Survey topics included: (1) diagnosis, (2) treatment planning, (3) communication with providers, (4) insurance and financial concerns, (5) quality of life, side effects, and symptoms, and (6) survivorship and end-of-life. Descriptive analyses were used to explore psychosocial needs and experiences across three domains of patient-centered value in oncology. Findings: Each survey received 500–527 responses. Respondents most commonly reported needing more information regarding their insurance coverage and out-of-pocket costs (65%), access to clinical trials (89%), and support organizations (45%). Forty-one percent were very or extremely distressed about cancer’s impact on their ability to work and over 25% reported high-levels of cancer-related financial hardship. Conclusions: Patients and survivors reported significant unmet informational needs, financial hardship, distress, and symptoms or treatment side effects that interfered with daily life. Implications for Psychosocial Providers or Policy: Providers and payment reform advocates can improve value in oncology by ensuring access to comprehensive psychosocial care and informational support.

Palliative care has demonstrated effectiveness in alleviating the biological, emotional, social, and spiritual symptoms that accompany serious illness, and improving quality of life for seriously ill individuals and their family members. Despite increasing availability, there are significant disparities in access to and utilization of palliative care, particularly among diverse, low-income, and community-dwelling older adults with chronic illness. Training frontline service providers is a novel approach to expanding access to palliative care among underserved elders. This article presents a process and outcome evaluation of a palliative care curriculum that was developed and piloted for geriatric case managers in a large urban area. We describe the background, planning, design, implementation, and preliminary outcomes associated with a pilot implementation of the curriculum. We conclude with implications for replicating efforts to enhance frontline providers’ knowledge, skills, and self-efficacy in extending palliative care to communities that lack access to critical supports for their burdensome symptoms.

Objectives: A sizable minority of those who lose a loved one in hospice will experience symptoms of bereavement-related mental health disorders. Though hospices offer services to bereaved informal caregivers (family members or friends) of patients, little is known about services offered or interest in them. Therefore, we sought to assess services offered by hospice staff and interest expressed by bereaved informal caregivers with symptoms of depression, anxiety, or complicated grief (CG). Methods: De-identified electronic bereavement care charts of 3561 informal caregivers who lost someone in a large urban metropolitan hospice from October 1, 2015, to June 30, 2016, were reviewed. Results: Of bereaved informal caregivers in the sample, 9.4% (n = 333) were positive for symptoms of depression, anxiety, or CG. The symptom-positive family members/friends were more likely than other family members/friends to be offered mailings, one-to-one counseling, telephone calls, and reference material. However, interest in most services by symptom-positive caregivers was low, with only 6% interested in one-to-one counseling and 7% interested in outside referral. Discussion: The findings suggest that hospices offer a range of services to family members or friends with symptoms of anxiety, depression, and CG, but that there can be a gap between what is offered and in the interest levels of the bereaved. Engagement with symptomatic family members and friends could be enhanced in future work.

Despite the advances and spread of palliative care programs, communities of color remain significantly underserved. Although these disparities are widely known, there is a marked lack of empirical evidence. The authors conducted a systematic scoping review that synthesized the literature since 2000 about racial and ethnic disparities in palliative and end-of-life care. We searched PubMed, Medline, SocIndex, CINAHL, Social Work Abstracts, and PsycINFO, using search terms including palliative care or end-of-life care, disparities or barriers or utilization, and race or ethnicity or African American or Hispanic. Findings lend support to extant literature that social-environmental barriers and disparities distinctly affect access to care for these populations. The review expands upon understanding of how social determinants drive disparities in palliative and end-of-life care and suggests implications for practice, policy, and research in promoting health equity in serious illness.

Although they experience high rates of chronic illness, low-income minority communities have traditionally underutilized palliative care services compared to whites and those with higher incomes. One reason for this trend is lack of screening by community providers. We utilized a community-based participatory research approach to develop and implement an innovative multidomain palliative care screening tool in aging service agencies. Participants were aging service providers and clients in the East and Central Harlem neighborhoods of New York City, which are characterized by high poverty, largely African American and Latino populations, disproportionally high rates of chronic conditions, and limited health-care access. Screening tool development included reviewing existing measures and obtaining feedback from an expert panel, aging service providers, and older adults. We developed a 22-item tool covering 3 domains of palliative care need (physical symptoms, emotional concerns, and goals of care), which can be administered in 10 to 15 minutes. Sixteen providers at 2 aging service agencies were trained to use the tool over a 3-month pilot period. The tool showed evidence of feasibility of implementation, with 44 older adult clients screened. Providers reported high acceptability, 36% of clients screened positive, and the majority accepted referrals to outpatient palliative care clinics. The screening tool has the potential to increase palliative care utilization among underserved community-dwelling older adults and may improve their quality of life, potentially in communities worldwide. Future work should examine the psychometric proprieties of the tool, examine predictors of positive screens, explore its impact on clinical outcomes, and expand its reach.