Abstract
Objective:
While screening for psychosocial distress is now the standard of care in oncology, little guidance is available on how best to deliver services in response to identified needs. The American Psychosocial Oncology Society (APOS) convened a task force with the goal of creating a framework that could aid in planning services and justifying requests for resources.
Methods:
Ten experts from multiple disciplines within psychosocial oncology served on the task force, first meeting together as a larger group over 2 days to set an agenda and then subsequently working in smaller teams to execute the goals. The task force used consensus methods for developing recommendations.
Results:
Three principles were identified for the framework. First, psychosocial oncology is a key component of population health, and population-based approaches to care delivery are required. Second, several key parameters shape psychosocial oncology services: resources, aims, and scope. To guide resource allocation, example priorities were identified for the aims and scope of services. Finally, cancer care centers should strive to ensure the delivery of high-quality psychosocial oncology care across all components of care. A range of practices was ranked by their potential contributions to achieving that goal.
Conclusions:
This framework may aid in planning, evaluating, and refining the delivery of responsive psychosocial oncology services.
Keywords: health services, healthcare delivery, psychosocial oncology services
1 ∣. INTRODUCTION
Over the last 20 years, national recommendations to screen oncology patients for psychosocial distress have converged and resulted in a new standard of care. In 2015, the American College of Surgeons (ACoS) Commission on Cancer began requiring cancer programs to screen for psychosocial distress as an accreditation standard.1 With the adoption of distress screening, cancer care centers face decisions about how to ensure that services are available for patients who have significant psychosocial distress.
Guidance is lacking on how to provide psychosocial oncology services that meet the needs of distressed patients. The literature on the provision of psychosocial care has focused mostly on stand-alone treatment interventions and not on integrated models of care delivery in real-world settings. While guidelines have been created for clinicians to manage depression and anxiety in individuals with cancer,2,3 service leaders and administrators must make decisions about the structure, staffing, and funding of services to deliver that care, along with managing other forms of psychosocial distress.
Psychosocial oncology services vary greatly across cancer centers. Currently, the three most common models of specialty psychosocial oncology care delivery are co-located, off-site, and collaborative care. In the co-located model of care, dedicated mental health clinicians (eg, psychologists or psychiatrists) are available onsite for referrals, which may be prompted by screening. Oncology social workers represent the largest group of mental health providers in cancer centers.4-6 In the US, the co-located model is common among larger cancer centers, whereas many smaller centers lack the resources to provide dedicated psychiatrists or psychologists to assist with pharmacotherapy and psychotherapy for complex cases. Alternatively, the off-site model allows for rapidly accessible mental health consultation with or without follow-up care. Unfortunately, referral to off-site providers is associated with low follow-through and inadequate treatment.7-9 Lastly, in the collaborative care model, psychosocial services are integrated into routine oncology care and provided by a multidisciplinary team of professionals with clearly identified roles.10,11 The team includes a care manager (typically a clinician such as a social worker or nurse), who coordinates mental health care, conducts initial evaluations, and provides brief evidence-based behavioral interventions; a psychiatrist or psychologist, who provides regular onsite or remote clinical consultation or direct care for complex cases12; and an oncologist or other medical provider, who can prescribe basic psychiatric medications recommended by a consulting psychiatrist. Meta-analyses and systematic reviews of randomized controlled trials have demonstrated the collaborative care model's effectiveness in diverse cancer settings and other medical populations13-16; however, to date, few cancer centers have implemented the model.
While these descriptions of models may represent potential approaches to care, they do not provide a framework for deciding which model might best serve the needs of a particular cancer center given its available resources. To address this need, the American Psychosocial Oncology Society (APOS) created a multidisciplinary task force in 2017 to provide guidance on selecting and implementing models of psychosocial care responsive to distress screening. This manuscript is the first report from the task force. Given the wide variations in resources available to different oncology practices, the task force decided to start by identifying over-arching principles for delivering psychosocial oncology services. In this manuscript, we elaborate on each of these principles.
2 ∣. APOS TASK FORCE ON MODELS OF CARE RESPONSIVE TO SCREENING
The APOS Board of Directors and Research Committee selected 10 APOS members with care delivery model expertise (ie, three psychiatrists, five psychologists, and two social workers) to serve on the task force. Individuals were chosen based on their expertise or experience with different models of psychosocial oncology care as well as geographic distribution of their institutions across the U.S. The task force first met in person for 2 days in September 2017 to review innovative models of care for both adult and pediatric patients with cancer, as well as modes of care delivery such as telehealth and mobile applications, which could expand access.17 The goal was to create a framework that could aid in planning services and justifying requests for resources. The task force continued to work in small groups after the meeting to identify and elaborate on principles and to write this report. Three principles emerged from task force discussions:
Principle 1: Psychosocial oncology should be considered as a key component of population health, and population-based approaches to care delivery are required.
Principle 2: Three interdependent parameters shape psychosocial oncology services: resources, aims, and scope.
Principle 3: Cancer care centers should strive to ensure the delivery of high-quality psychosocial oncology care across all components of care.
For Principles 2 and 3, the task force sought to identify and prioritize parameters of care and best practices for necessary psychosocial care operations. To achieve this, the task force employed a modified Delphi approach18 to reach consensus on prioritizing aims, scope, and recommended practices to ensure quality components of care. The modified Delphi process was conducted anonymously through online survey software (Survey Monkey) and based on the National Cancer Institute (NCI) Psychosocial Matrix.19 We utilized four of the seven categories of the matrix in the consideration of practices: (a) identifying psychosocial health needs; (b) designing and implementing psychosocial care plans; (c) conducting follow-up, re-evaluation, and adjustment of plans; and (d) oversight of quality. In the first round, task force members identified items for each of the categories. In the second and third rounds, we rated the importance of items and ranked them, respectively. Through the fourth and fifth rounds, we refined, clarified, and finalized the rankings based on consensus. As this was a consensus statement and not human subjects research, we did not obtain ethical approval from an institutional review board.
3 ∣. PRINCIPLES FOR DEVELOPING MODELS OF PSYCHOSOCIAL ONCOLOGY CARE
3.1 ∣. Principle 1: Psychosocial oncology should be considered as a key component of population health, and population-based approaches to care delivery are required
In contrast to independent mental health services, psychosocial oncology services provide mental health care for a defined population of patients and their families receiving cancer care within specific oncology settings. The term “population health” initially referred to “the health outcome of a group of individuals, including the distribution of such outcomes within the group.”20 Over time, the concept of population health has evolved to include more than the measurement of outcomes, but also ways in which communities, healthcare providers, and healthcare organizations allocate resources to overcome the problems that contribute to poor health conditions and high healthcare utilization in the populations they serve.21 The goals of population health management are ideally to achieve the three aims of: (a) improved population health, (b) better perceived quality of care, and (c) reduced costs.22 To accomplish these goals, interventions should aim to “reach” and positively “impact” as many people in the defined population through a system of evidence-based approaches.
The principles of population health management represent salient opportunities for cancer centers to overcome the inherent limitations of the traditional mental health referral model. Although the implementation of universal distress screening increases detection rates among patients with cancer, screening alone is not sufficient to improve patient outcomes.7-9,23 For those who screen positive for distress, a key next step involves comprehensive evaluation of patient needs and referral to the appropriate type, setting, and level of service.24,25 In the traditional referral model, such systems rarely exist for patient-centered assessment and triage. Engagement in care is often low, as many patients are confused about why their oncology clinician referred them and often fail to schedule or attend appointments. Successful programs ideally would not only implement standard procedures for distress screening and follow-up assessment and triage by trained clinicians, but also link patients to evidence-based interventions that efficiently target and monitor outcomes for their individual psychosocial needs.26
Measurement-based care, defined as the systematic evaluation of patient symptoms and outcomes using validated tools to inform treatment decisions, is another key aspect in the provision of effective population-based care.27,28 Repeated follow-up measurement of patient response to interventions helps facilitate necessary (and timely) adjustments to care, including escalation of services, changes in medications, and appropriate surveillance after effective treatment. Growing evidence showing the benefit of tracking patient-reported outcomes (PROs) during cancer treatment has particular relevance to psychosocial oncology care.29 As such, PROs serve as the centerpiece of measurement-based psychosocial care.
An ideal model of care would take a population-based approach, allowing (a) prompt identification of patients in need of psychosocial oncology services throughout the cancer trajectory; (b) patients to receive the right services, at the right time, in the right place, by the right provider; (c) the tracking of cancer and supportive care outcomes, quality of life, other quality metrics, and health system resource utilization over time; and (d) rapid intervention and treatment course adjustment, when necessary. While these functions might be challenging for traditional referral-based models, several models may be better equipped to meet those goals, such as case-management-based, stepped-care, and/or collaborative care models.
Collaborative care models, in which mental health care of a defined population is shared between medical providers, such as oncologists, and a team of mental health clinicians, are one way to provide population health. One such model is the Integrated Psychosocial Oncology Program at the Seattle Cancer Care Alliance (SCCA). In this program, clinical social workers integrated within disease groups perform initial psychosocial evaluations on patients referred through universal distress screening or from hematology-oncology teams, present new patients and others from their electronic patient registry who are not meeting target outcomes to consulting psychiatrists at weekly caseload reviews, and implement and coordinate treatment recommendations with the patient and oncology team (eg, for pharmacologic adjustments). Team social workers are trained and experienced in delivering core brief behavioral interventions such as behavioral activation, problem-solving therapy, and motivational interviewing. When clinically indicated, treatment is “stepped up” to specialty care by the program's co-located psychiatrists, psychologists, or advanced practice practitioner. This collaborative care model has been expanded to SCCA community affiliates using telehealth technologies.
3.2 ∣. Principle 2: Three interdependent parameters shape psychosocial oncology services: Resources, aims, and scope
Population health approaches first start with defining a population and then determining how to deliver effective services to that population based on available resources. Therefore, psychosocial oncology services will be determined by three interdependent, but modifiable, parameters: (a) resources (funding, staffing, technology, and space); (b) aims (breadth and depth of services); and (c) scope (target population). Centers with identical funding and staffing may choose to use their resources differently, such as providing limited services to a broader range of individuals or, alternatively, providing more comprehensive services for a smaller, high-need population. Expanding the aims will decrease the scope and vice versa.
Defining the aims and scope of psychosocial services may allow services to balance their missions with their resources. Given that resources and needs may change over time, cancer care centers might expand or contract their aims and scope of services as needed. The aims and scope of psychosocial oncology exist along a continuum, and the task force reached consensus on the general priorities within the continuum. Table 1 presents tiers of aims and scope, with the first tier including essential aims that all centers should have per the recommendations of the task force. The higher numbered tiers represent expansions in aims depending on available resources or decisions.
TABLE 1.
Aims and scope of services
| Aims | |
|---|---|
| Tier | Aim |
| 1 | Managing distress that is interfering with cancer care during cancer treatment |
| Managing cancer-related distress | |
| 2 | Addressing acute psychosocial problems that may not be interfering with cancer treatment |
| Managing distress that is interfering with life functioning outside of cancer treatment | |
| 3 | Helping with medical treatment issues: improving adherence and managing oncology treatment side effects |
| Helping individuals to participate more effectively in cancer treatment: communication, decision-making, navigating transitions in treatment | |
| Helping to improve coping skills, adjustment to life with cancer, resilience | |
| 4 | Improving general quality of life/well-being |
| Addressing survivorship concerns | |
| Scope of services | |
| Tier | Population |
| 1 | Patients with distress, that is, interfering with their cancer care |
| Patients in cancer treatment with multiple psychological or psychiatric symptoms | |
| Patients with metastatic cancer | |
| Patients at the end of life | |
| 2 | Patients in cancer treatment at transition points in their care |
| Patients with newly diagnosed cancers | |
| Patients currently receiving any type of cancer treatment | |
| 3 | Caregivers of patients at the end of life |
| Patients after cancer treatment | |
| Caregivers of patients in cancer treatment | |
| 4 | Staff/providers (staff level self-care initiatives) |
| Caregivers of patients after treatment | |
3.3 ∣. Principle 3: Cancer care centers should strive to ensure the delivery of high-quality psychosocial oncology care across all components of care
Despite implementation of psychosocial distress screening programs, delivery of psychosocial care usually lacks coordination across disciplines, tracking of patient outcomes over time, and timely treatment adjustments.10 A national survey documented that only about 20% of NCI-designated, academic, comprehensive and community cancer centers have processes to follow up and adjust treatment for patients identified as clinically distressed.30,31
However, a range of practices can be utilized in efforts to address these challenges. In an attempt to provide some guidance regarding practices for the components of care, the task force generated examples of specific practices and ordered them into tiers. These are presented in Tables 2 and 3. Tier 1 represents minimally acceptable, Tier 2 represents acceptable, and Tier 3 represents more aspirational practices. The tiers build on each other, and higher-level tiers may subsume practices in the lower level tiers.
TABLE 2.
Identifying needs and linking services
| Identifying needs | |
|---|---|
| Tier | Practice |
| 1 | Educating patients about services so that they can self-refer |
| 2 | Training medical providers to recognize and evaluate distress in their clinical visits |
| Screening new patients for distress | |
| 3 | Screening for distress at multiple timepoints with results going to an identified provider |
| Screening for distress at multiple timepoints with results being recorded in the medical record | |
| Linking needs with services | |
| Tier | Practice |
| 1 | Technology-based interventions, including mobile applications |
| Offsite telemedicine services from outside private providers | |
| EMR-triggered list of referral options | |
| 2 | Onsite psychosocial services with no relationship with a psychiatrist/psychologist |
| Onsite telemedicine for psychosocial issues | |
| A robust referral system to offsite providers only | |
| 3 | Onsite psychosocial services, which include a psychiatrist/psychologist |
| Onsite psychosocial services, which have a relationship with/easy access to an offsite psychiatrist/psychologist | |
TABLE 3.
Safeguards for Adequate Treatment and Follow-Up and Quality Oversight
| Safeguards for adequate follow-up and treatment adjustments | |
|---|---|
| Tier | Practice |
| 1 | Conducting periodic psychosocial case reviews |
| Screening patients for distress at all visits | |
| Patient satisfaction surveys | |
| 2 | Training the medical teams to monitor symptoms and refer back when needed |
| Psychosocial providers attending medical team meetings | |
| Educating patients on when to self-refer back to services | |
| 3 | Use of a collaborative care model with an integrated psychosocial care manager |
| Systematic screenings at all pivotal treatment points or set time intervals | |
| Quality oversight | |
| Tier | Practice |
| 1 | Frequent quality improvement projects |
| 2 | Annual review of metrics and key process measures |
| Having a psychosocial representative on the center's Cancer Quality Committee | |
| Patient/family feedback and satisfaction surveys | |
| Staff and referrer satisfaction surveys | |
| 3 | Ongoing review of key process measures: number of referrals, access, follow-ups, and adherence to established treatment pathways and practice guidelines, healthcare utilization, and cost |
| Collection and review of clinical outcome assessments (patient distress, anxiety, depression, adherence to cancer treatment, recurrence rates, and mortality) | |
4 ∣. CONCLUSIONS
Providing psychosocial care in oncology settings requires flexibility to meet the needs of a defined oncology population with varying levels of psychosocial resources. The number of individuals who may need psychosocial oncology services is increasing as the US population is aging, and those with cancer are now living longer. The number of cancer survivors at all ages is expected to increase from 15.5 million in 2016 to 20.3 million by 2026.32 As this growth will likely continue to outpace resources for psychosocial oncology care, adequate care will increasingly become more difficult to provide using many current service models. Population health-based approaches are needed to ensure that all distressed individuals with cancer receive effective psychosocial care. Screening for psychosocial distress is a first step toward a population health management approach, and further consideration of psychosocial oncology as population health may lead to more responsive models of care. Our task force recommends collaborative care as one model that may meet these challenges.
It is not possible to specify a structure for psychosocial oncology services that works for all oncology practices. The fundamental considerations in planning services should be population health and then balancing resources, aims, and the scope of the service to meet the needs of the practice. Once this groundwork has been laid, centers can utilize a range of operations to deliver high-quality psychosocial care. The tiered framework presented in this manuscript offers some guidance for planning and implementing such services. As a framework and not guidelines, we recognize that not everyone will agree with the inclusion and order of all items.
4.1 ∣. Limitations
While this report may provide some high-level guidance, many logistical issues still need to be addressed. These include staff to patient ratios, productivity expectations, service reimbursement and funding, special needs throughout the lifespan, cultural diversity, and compensation equity. With the considerable variability across psychosocial services, it is challenging to provide general guidance that would be relevant to all practices. Psychosocial oncology services, therefore, need to work within the context of their cancer centers, institutions, and departments. Identifying other similar centers with psychosocial oncology services may be helpful for benchmarking certain practices. Moreover, practice-based benchmarks for process and clinical outcomes would assist psychosocial oncology programs with their quality improvement efforts. Finally, members of the APOS task force came from large cancer centers and academic settings and there might be challenges specific to smaller community oncology practices that are not addressed. The task force also did not include the perspectives of individuals with cancer, caregivers, and oncology clinicians.
4.2 ∣. Clinical Implications
The work of implementing distress screening represents an opportunity to evaluate all our practices and align them with the needs of the populations we serve. We expect that changes will be needed in the ways we currently deliver services to keep pace with growing volumes and shifting resources. Understanding psychosocial oncology within the context of population health management will give us a greater perspective and latitude toward meeting these challenges. Approaches such as risk stratification and stepped care may help distribute resources in ways to reach more patients. In this changing environment, continuing to learn about innovative practices and models in other centers may also provide some collective guidance on service delivery.
ACKNOWLEDGEMENTS
The in-person meeting was supported by the Sylvester Comprehensive Cancer Center, University of Miami. This work was supported (in part) by the Intramural Program of the National Cancer Institute, National Institutes of Health (Wiener).
Funding information
Leonard M. Miller School of Medicine; National Cancer Institute, Grant/Award Number: in part salary support for Lori Wiener
DATA AVAILABILITY STATEMENT
Data that support the consensus by the task force are available from the corresponding author upon reasonable request.
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Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.
Data Availability Statement
Data that support the consensus by the task force are available from the corresponding author upon reasonable request.