Abstract: The core of healthcare quality is continuous improvement of processes and results. For cancer patients, psychosocial care can affect overall outcomes. In this article, we outline the efforts that a national comprehensive cancer center is using to bring psychosocial care to the same level of awareness, importance, and integration as clinical care. Improving all aspects of patient care, psychosocial as well as biological, must be pursued if progress in overall quality of cancer care is to be achieved.
In addition to the physical concerns associated with a primary diagnosis of cancer, it is very common for cancer patients to experience corresponding psychological problems such as depression and anxiety (Carlsen, Jensen, Jacobsen, Krasnik, & Johansen, 2005; Hegel et al., 2006; Spiegel & Giese-Davis, 2003). Fatigue, pain, reduced physical capacity, and the logistics associated with an ongoing treatment regimen, often lead to an overall decrease in functioning that can affect key relationships at home and work. Combined, these psychological and social factors add another layer of complexity to the already challenging medical concerns of cancer patients. “People diagnosed with cancer, and their families, must not only live with and manage the challenges and risks posed to their physical health but also overcome psychosocial obstacles that can interfere with their health care and diminish their health and functioning” (Institute of Medicine, Committee on Psychosocial Services, 2007, p. 4).
Recent research has confirmed a connection between psychosocial concerns and clinical outcomes. A longitudinal study of breast cancer patients examined the impact of stress as a risk factor for cancer progression. The study found that patients receiving a psychological intervention had improved survival rates compared with those that did not receive the intervention (Andersen et al., 2008).
Recognizing that overall prognosis may be compromised if psychosocial care is not addressed, the number one recommendation for action by the Institute of Medicine, Committee on Psychosocial Services (2007) emphasizes a standard of care, which ensures the provision of appropriate psychosocial health services to cancer patients. The remainder of this article presents how MD Anderson Cancer Center has adapted its psychosocial practices to better meet the needs of its patients.
The clinical research and clinical programs at MD Anderson Cancer Center have led to its recognition as a world leader in cancer care. The Institute of Medicine's definition of psychosocial care is defined as psychological and social services and interventions that enable patients, their families, and healthcare providers to optimize biomedical healthcare and to manage the psychological/behavioral and social aspects of illness and its consequences so as to promote better health. Psychosocial services at MD Anderson Cancer Center are provided by multiple departments as listed in Figure 1. However, feedback from patient satisfaction surveys did not portray psychosocial care as meeting the same level of excellence as medical care. Although MD Anderson has been providing psychosocial services since day 1, in 2004 our president included psychosocial care in the institution's strategic planning process. The intent was to bring psychosocial care to the same level of awareness, importance, and integration as clinical care. Integrated into our goal of excellence in clinical care were the following strategies:
Goal 1—Enhance the excellence, value, safety, and efficiency of our patient care.
Strategy 1.4—We will continue to enhance the patient experience by providing counseling, compassion, and hope in a supportive environment.
The most critical challenge to the desired culture shift is transforming the perception of psychosocial services from supportive services to an integral element of clinical care. To accomplish this shift, the Psychosocial Council was charged with integration, assessment, and triage to ensure psychosocial services contribute to enhanced quality of patient care in alignment with Goal 1, Strategy 1.4. The council's specific objectives are to:
•integrate and improve the delivery of psychosocial services;
•assess and triage patients' psychosocial needs to enhance patient care.
Before the Psychosocial Council, there were two working groups focused on this initiative. Lessons learned were that a more integrated and institutional governance was needed involving senior leadership to achieve wide acceptance and process change.
This is a broad-based approach in an effort to integrate the multiple disciplines that see themselves as touching different aspects of psychosocial care. MD Anderson Cancer Center has a wide range of available psychosocial resources (Figure 1). The Psychosocial Council provides a unifying forum for members to become aware of the work that is going on in other departments; it gives them an opportunity to collaborate, integrate, reduce duplication, and create new initiatives.
Integrate: Psychosocial Council
The Psychosocial Council was created by the president in August 2006, reporting to the Quality Council and led by executive leadership. The full Psychosocial Council consists of 30 members representing 20 departments (Table 1). The council met monthly in the first year during the research phase, and subsequently has met every other month during the implementation phase. Subcommittees were appointed to address specific objectives. Additionally, a leadership team (consisting of the subcommittee chairs and the two Psychosocial Council co-chairs), has met monthly to ensure that the group is staying on course and to remove barriers as needed. Under the leadership of the co-chairs, the Council translated the institutional Strategy 1.4 into specific objectives and oversaw the implementation of action plans.
Table 1. Psychosocial Council Membership (Departments Represented)
Co-Chair: VP, Medical Affairs
Co-Chair: VP, Clinical Support Services
Child/adolescent behavioral medicine
Place … of wellness
Assess: Service Gaps
The Council members conducted a gap analysis to review the current psychosocial services and resources available to patients from the point of contact throughout the continuum of care. Each of the departments listed in Table 1 provided a summary report of the scope of services they provide, the number and professional categories of staff that provide the services, and numbers of patients and visits/consults delivered. A retreat was held with all the Council members representing these departments. The department reports were reviewed, the categories of services mapped out, and gaps in services and strategies to reduce the gaps were identified and prioritized. These key gaps and the assigned Psychosocial Council Subcommittee are listed in Table 2.
Table 2. Top Gaps Identified by the Psychosocial Council Assessment
Assigned Psychosocial Council Subcommittee
1. Lack of awareness by providers and patients about the type and breadth of psychosocial services available
2. Lack of a standard process to screen for psychological distress
Distress Thermometer Pilot Subcommittee
3. Lack of a reliable tool to measure distress
Distress Thermometer Pilot Subcommittee
4. Large and increasing numbers of patients put volume stress on systems and providers
5. Cultural barriers to psychosocial care
Change the Culture Subcommittee
Assess and Triage: Patient Needs
Subcommittees composed of members of the Psychosocial Council were appointed to address the top gaps. First, the Education Subcommittee's objective was to increase provider and patient awareness of the type and breadth of services available. Some of the approaches included a user friendly ABCs of Cancer at MD Anderson Guide for patients to easily locate psychosocial services at MD Anderson Cancer Center, a poster of available services located in waiting areas and exam rooms (Figure 2), an orientation training for providers about Psychosocial Services, and a comprehensive communication plan for patients, their caregivers, physicians and staff.
Second, the Distress Thermometer Pilot Subcommittee's objective was to develop a standard process to screen for psychosocial distress as well as intervene and triage patients identified with high distress scores. This subcommittee used the National Comprehensive Cancer Network (NCCN) definition of “distress” as follows: “distress is a multifactorial unpleasant emotional experience of a psychological (cognitive, behavioral, emotional), social, and/or spiritual nature that may interfere with the ability to cope effectively with cancer, its physical symptoms, and its treatment. Distress extends along a continuum, ranging from common normal feelings of vulnerability, sadness, and fears, to problems that can become disabling, such as depression, anxiety, panic, social isolation, and existential and spiritual crisis” (NCCN, 2008).
The committee also used the NCCN's (2003) Distress Thermometer as the key measurement tool, which was piloted in two outpatient clinics. The tool was selected as it has been used, tested, and validated previously (Bultz & Holland, 2006; Hoffman, Zevon, D'Arrigo, & Cecchini, 2004). It was later restructured into an electronic questionnaire called “Patient Needs Assessment,” or ePNA, and tested in additional outpatient and inpatient settings (Figure 3). The nurse asked the patient the questions on the ePNA. Because translation could invalidate the tool, only English-speaking persons participated in the pilot. The tool was designed for sixth grade literacy, and standardized according to the NCCN language, which was not altered. Patients scoring at or above a 4 on the 10-point scale met with a social worker to determine needed interventions and resources.
Thirdly, the Resources Subcommittee's objective was to address the added stress on systems and providers, due to large and increasing numbers of patients for whom interventions would be provided. Finally, a Culture Change Subcommittee was developed with an objective to identify and address the barriers to psychosocial care. The work of this subcommittee recognizes how culture change relates to all the gaps identified by the Psychosocial Council. This subcommittee is performing a formal multiyear research project targeting MD Anderson Cancer Center physicians, staff, patients, and families regarding barriers to assessing and providing psychosocial care.
Psychosocial Distress Assessment and Reduction
Two pilot studies were conducted to assess and triage psychosocial distress. The objectives of Pilot #1 were to validate the application of the distress thermometer as well as the effectiveness of providing psychosocial services to those scoring at or above four on the 10-point distress scale. Figure 4 shows the primary causes of patient distress as identified in the two outpatient pilot centers (Gastrointestinal and Sarcoma).
In Figure 5, changes in distress scores are shown for the two pilot centers. Patient distress was reassessed after the first of two follow-ups (after meeting with a social worker to discuss concerns and identify relevant support services). The results demonstrate a consistent reduction between beginning and ending distress scores.
For those patients pursuing the identified services, even more substantial gains were achieved. This second follow-up was a phone call to the pilot study patients in order to identify the services utilized and reassess their current distress score. Across both centers, 61% of patients demonstrated a reduction in distress to <4 at the second follow-up visit.
In Pilot #2, the objectives were to improve the screening of psychosocial distress with the ePNA, which integrated the distress thermometer, matched patient needs with relevant services, and decreased patient distress by at least 2 points via the use of the ePNA and appropriate service intervention.
The ePNA was used in three additional outpatient clinics (Melanoma and Skin, Thoracic, and Head and Neck) and an inpatient unit (Gynecology). The assessment was conducted during intake for each new patient appointment. The outcome was an increase in the ability to identify patients experiencing psychosocial distress (Figure 6), and therefore a significant increase in referrals to support services following implementation of the tool. In the three outpatient pilot centers, the ePNA distress scores at intake were compared with the distress scores following social work intervention (Figure 7).
Inpatients were assessed for distress using the ePNA upon admission and discharge (Figure 8). Patients with scores ≥4 were referred for social work intervention and to other psychosocial services as needed. Patient distress scores were lowered by more than 2 points, thereby exceeding the original goal.
Psychosocial Staffing Resources
Based on the patient distress pilot data, projections on the numbers of patients that would be requiring social work services throughout the institution were done, and a staffing model was completed to meet the need for adequate resources. Also identified, and still in the process of discussion, is an expanding Psychiatry Department, inclusive of psychologists.
Based on patient satisfaction surveys for outpatients an average of 39% of outpatients reported experiencing emotional distress (Figure 9), which supported the observed occurrence in the clinic pilots. Inpatients reported emotional distress at a 41% rate of occurrence on the institution's postdischarge satisfaction survey (Figure 10). The combined average shows that 40% of all patients experienced emotional distress, which represents a significant number of patients that need and can benefit from psychosocial services.
To further address the issue, the following question was posed: for those experiencing emotional distress, did these patients believe staff did everything possible to manage and reduce their distress? The responses to this patient satisfaction question are also presented in Figures 9 and 10. Of the 39% of outpatients that experienced emotional distress, 87% believed the staff fully addressed their needs while an average of 13% did not believe staff did everything possible (Figure 9). Similarly, of the 41% of inpatients that experienced emotional distress, 86% believed the staff fully addressed their needs while an average of 14% did not believe staff did everything possible (Figure 10). These findings corroborate the pilot study findings that demonstrate the reduction of distress scores following intervention in most patients.
Provider and Patient/Caregiver Awareness of Psychosocial Services
Trainings on psychosocial services were conducted to increase provider awareness. An evaluation was done with a small cohort of 81 participants. Seventy-four percent of staff answered that they learned new information about psychosocial services as a result of the psychosocial services training, and 74% stated that they will refer patients to these services.
For patient/caregiver awareness, an ABCs of Cancer at MD Anderson Guide was provided to patients listing all psychosocial services in a user-friendly format. To date, 53 patient/caregivers have responded to a survey. Of those that responded to these questions, 73% indicated that they have a better idea of where to go for help as a result of the ABC's of Cancer at MD Anderson Guide, and 88% stated that they intended to use one or more of these resources.
Only 41 of the 53 people surveyed responded to this question about whether or not they had a better idea of where to go for help. Of the 41 respondents, 30 said “yes.”
Only 26 people responded to the question regarding whether they intended to use one or more resources, and 23 responded “yes.”
Changing the Culture
The Changing the Culture Subcommittee decided that a formal research study needed to be done. Funding has been requested and is an ongoing project; results will be published when completed.
Future Directions: Challenges and Next Steps
The implementation of a well-integrated psychosocial program depends in part on developing the appropriate tools to assist in monitoring the patients' level of distress. The automation of the distress screening scale can be such a tool. Otherwise, the monitoring process becomes a challenging and time-consuming effort. Integration is also difficult when multistep processes are not electronically linked.
A second challenge is that significant behavioral changes and adaptations must occur in order for this new initiative to become a routine part of day-to-day workflow. All participants need to be educated about the distress score as a sixth vital sign, a signal that is as critical an assessment as other physiologic distress parameters. To that end, we will be implementing a research project to assess best strategies for cultural acceptance of this new concept and behaviors appropriate to this change.
Thirdly, it will be very important that the Council remain focused on the high-priority objectives, and keep the subcommittees on track. While the action plans will take a great deal of time to fully accomplish, it is imperative that we not lose sight of the final objective. There is a high risk of distraction along the way by other initiatives, and by economic system stressors.
The Council has outlined its next steps in the form of short- and long-term implementation plans (Table 3). In addition to these goals, a well-defined monitoring program with clearly articulated measures will be developed to enhance the appropriation and ongoing management of support services.
Table 3. Next Steps
Short-Term Plan (1–2 years)
1. Fully implement the integrated electronic process of distress measures (ePNA) throughout the institution
2. Develop an electronic process of referral outcomes that would be initiated automatically by the patients' own input
3. Appropriate social worker staff numbers based on metrics of distress in outpatient and inpatient units
4. Develop electronic integrated documentation for Psychosocial Service providers visible in Clinic Station (the institution's EMR)
5. Establish evidence-based algorithms for the management of distress
Long-Term Plan (3–5 years)
6. Develop an integrated and comprehensive Psychosocial Oncology Program
a. Multidisciplinary programmatic integration
b. Recruit additional Clinical Behavioral Specialist resources (psychiatrists and psychologists)
c. Research agenda focused on clinical behavioral and social issues
7. Evidence-based behavioral training for staff at all levels (physicians, nursing, etc.) to address both patient and staff distress (using data from Culture Change research project)
The process that we have used to implement the psychosocial initiatives can be translated to other settings and institutions. The translatable components include (1) leadership—accepting and embracing psychosocial care as a priority; (2) integration of psychosocial care into the strategic plan of operations; (3) a multidisciplinary Psychosocial Council, with representation that is comprehensive of the support services provided; and (4) prioritizing and selecting projects based on evidence.
When psychosocial care as a necessary component of clinical care as well as specific action plans are put in place to support this assertion, improvement in the integration and effectiveness of psychosocial services can be achieved and sustained.
Maria Alma Rodriguez, MD, is Vice President for Medical Affairs at the University of Texas MD Anderson Cancer Center in Houston, Texas. Dr. Rodriguez has been a clinician and clinical investigator at MD Anderson since 1986; her expertise is in the treatment of patients with lymphomas. Dr. Rodriguez has contributed to numerous quality improvement initiatives within the institution, and has been named a Fellow in Clinical Safety & Effectiveness.
Frank Tortorella, MBA, JD, FACHE, is Vice President of Clinical Support Services at the University of Texas MD Anderson Cancer Center in Houston, Texas. Mr. Tortorella uses his 20 years of healthcare administration experience to provide strategic oversight to an interdisciplinary team of clinical and support services. He has been named a fellow in Clinical Safety & Effectiveness at MD Anderson Cancer Center and a fellow of the American College of Healthcare Executives.
Cynthia St. John, PhD, is Director for the Journey to Excellence at Texas Health Resources in Arlington, Texas. Previously serving as a Project Consultant and Manager of Performance Improvement at MD Anderson, Dr. St. John's background is in organizational development and continuous quality improvement. Current responsibilities include directing a Baldrige-based improvement process for a 13-hospital system.
By participating in the independent study offering, the reader will be able to Objective 1: Explain the importance of managing psychosocial distress in cancer patients.
1Psychosocial care for cancer patients is important because it positively affects:
(b)Overall health and levels of functions
(c)Relationships and employment
(d)All of the above
2Integrating psychosocial services into clinical care is congruent with which health care delivery model?
(c)B and D
3What was #1 Institute of Medicine (IOM) recommendation from the 2007 report, Cancer Care for the Whole Patient?
(a)Promote legislation to improve cancer care
(b)Physicians appropriately diagnose depression in cancer patients
(c)Provide appropriate psychosocial health services to cancer patients
(d)Financial support be provided for cancer patients without insurance
Objective 2: Describe the National Comprehensive Cancer Network (NCCN) distress thermometer which is a validated tool to measure distress.
1The NCCN distress thermometer includes questions in the following five (5) primary categories:
(a)Practical problems, family problems, emotional problems, spiritual/religious concerns, and physical problems
(b)Social problems, family problems, emotional problems, spiritual/religious concerns, and physical problems