Provision of Psychosocial Care for Cancer Patients

Abstract

Although common, psychosocial distress is frequently under diagnosed and untreated in the US health care system. Previous research shows that cancer patients have unmet psychosocial needs, and provision of psychosocial care frequently falls to primary care providers who may lack the resources to adequately deal with complex psychosocial issues. We conducted 25 in-depth key informant interviews with health care professionals working within medical facilities that provide care to cancer patients. Cancer care centers included in the sample were located within both rural and urban communities in a midwestern state, and included providers of both inpatient and outpatient services. Interview questions addressed the assessment of psychosocial needs, availability of psychosocial care, perceptions of the effectiveness of psychosocial services, and perceptions of organizational processes to manage psychosocial needs among their patients. Respondents were also queried regarding recommendations for improving psychosocial care for patients with cancer. Assessment of psychosocial need in most settings was often subjective, not performed, or completed without access to an accepted standardized assessment tool, and clinical pathways to direct psychosocial care were often lacking. Because of the lack of systematic assessment, access to psychosocial care was frequently dependent on the subjective judgment of busy clinicians. This study shows the clear need for organizational and practice redesign initiatives in both rural and urban settings to improve the delivery of psychosocial services to cancer patients. A number of possible system improvements were identified, including the use of allied health providers, standardized screening, and information technology to increase the ease and efficiency of psychosocial assessment.

Psychosocial distress, defined as “an emotional experience of a psychological, social, and/or spiritual nature that may interfere with the ability to cope effectively with cancer, its’ symptoms and treatment,” ¹ is a significant problem for cancer patients, their family members, and caregivers. Psychosocial distress ranges from normal feelings of apprehension regarding a cancer diagnosis to levels of depression and anxiety that interfere with treatment and daily living. Approximately 35% to 45% of US cancer patients report significant emotional distress,^2,3 though this number likely underestimates the number of cancer patients who experience some level of psychosocial distress during the course of their treatment. Unresolved psychosocial distress negatively influences treatment selection, compliance with recommended treatment, quality of life, and disease progression. Although common, psychosocial distress is frequently under diagnosed and either not considered or inadequately managed in the US health system. Clinical practice guidelines for the management of psychosocial distress have been established, but they are rarely fully implemented.^4,5 Only 5% to 10% of cancer patients receive formal psychosocial services, which include counseling, social and financial support (social work) assessment and service referral, symptom management, psychotherapy, and medication management. ⁶

We conducted 25 in-depth key informant interviews with health care professionals (physicians, nurses, administrators, social workers) with specific identified expertise in this area that were working within medical facilities that provide care to cancer patients. Interview questions were designed from a “positive deviance” framework.^7,8 Positive deviance, as defined by Spreitzer and Sonenshein, ⁹ is “intentional behavior that departs from the norms of a referent group in honorable ways.” It is increasingly apparent that one of the most efficient strategies for improving health care is to identify locally available, sustainable, and effective approaches. ⁸ Marsh and colleagues describe positive deviance as the observation that, in most settings, a few at risk individuals follow uncommon, beneficial practices and consequently experience better outcomes than their neighbors. Pascale and Sternin noted that “somewhere in your organization, groups of people are already doing things differently and better. To create lasting change, find these areas of positive deviance, and fan their flames.” ⁷

Through positive deviance, we sought to discover current normative practices in regards to psychosocial care and to identify organizations which deviated from the norm in a manner that allowed for more comprehensive management of psychosocial needs among cancer patients. The initial 25 interviews confirmed the importance of these evidence-based practices and identified putative “positive deviant” behaviors or practices that could be transferred or disseminated to other organizations serving cancer patients.

Methods

In-depth telephone interviews were conducted with 25 cancer care providers working within 10 cancer care organizations in a midwestern state. Respondents were selected based on response to an initial query letter sent to all comprehensive cancer centers in the region that indicated they would be willing to participate in a 30-minute structured interview about psychosocial services to cancer patients. We specifically sought individuals experienced in the comprehensive care of cancer patients. Both urban and rural cancer care organizations were represented, as well as organizations that served primarily inpatients, primarily outpatients, and those that served both. See Table 1 for a description of survey respondents and organization characteristics.

Table 1.

Characteristics of Survey Respondents

Job title
Administrator	8
Nursing	7
Social worker	7
Physician	2
Counselor	1
Total	25
Years in job
0-5	14
6-10	5
>10	5
No answer	1
Total	25
Location
Urban facility	7
Rural facility	3
Total	10
Patient type
Inpatient only	1
Outpatient only	4
Both	5
Total	10

Institutional Review Board approval was obtained prior to contacting respondents, and telephone interviews were taped and transcribed in a manner that did not identify any Health Insurance Portability and Accountability Act (HIPAA) information, including the respondent or the respondent’s organization. The survey instrument was created specifically for this exploratory pilot investigation. Survey questions were open ended and addressed current processes of psychosocial distress management within respondent organizations; respondent perspectives on the efficiency and effectiveness of these processes; barriers to the management of psychosocial distress; resources available to assist in the management of psychosocial distress; interorganizational communication in regards to interdisciplinary teamwork, time spent with supervisors/subordinates, and decision making processes; and respondent suggestions for process improvement. We sought to gain specific insight as to what innovative practices and strategies providers had identified and put into practice that would improve the delivery of psychosocial care to patients with cancer. Table 2 provides a sample of the survey questions as asked of respondents.

Table 2

Sample of Survey Questions

Are any mental health professionals, including psychiatrists, psychologists, social workers, counselors, or clinical nurse specialists available at your facility to address distress in cancer patients?

Are any mental health professionals, including psychiatrists, psychologists, social workers, counselors, or clinical nurse specialists available to your patients via outside referrals with coordinating agencies?

Are all cancer patients assessed for psychosocial distress at the time of admission?

What resources are available to your facility that enables the assessment of each patient on admission?

Is a systematic distress tool (the same measure for each patient) used to assess patients at the time of admission?

Do you feel it would be beneficial to use a systematic distress tool?

What barriers are preventing the use of a systematic distress tool?

What defines a high level of distress?

Is there an identified path of treatment or referral for patients who have high levels of distress?

Do you feel your patients would benefit from adopting an identified path of treatment or referral for patients who have high levels of distress?

What barriers are preventing your facility from adopting an identified path of treatment or referral for patients who have a high level of distress?

How often do you have contact with research findings on the treatment of psychosocial distress in cancer patients?

In your opinion, does your facility give adequate attention to the treatment of distress in cancer patients? If not, how could your facility give more attention to this area?

In your opinion, is treatment of distress among cancer patients in your facility efficient? If not, how could it be improved?

Analysis

Reponses to interview questions were first coded according to content. Initial codes were reviewed by another investigator and discrepancies were discussed and resolved. Initial analyses were descriptive with a focus on provider perceptions of how psychosocial distress was managed and the organizational barriers, resources, and processes that supported management of distress.

Results

Importantly, 8 respondents (32%) representing 5 organizations (50%) said their organization did not assess all cancer patients for psychosocial distress on admission, and 13 (52%) respondents representing 6 organizations (60%) said their organization had a systematic assessment tool available to determine the level of patient distress. Only 4 respondents (16%) representing 2 organizations (20%) said their facility had established an objective definition of psychosocial distress that would guide further treatment, and respondents from 8 of the 10 organizations were not aware of an established clinical pathway within their organization for the treatment of psychosocial distress. A total of 8 of the 25 respondents reported they had frequent contact with (or access to) research findings regarding the management of psychosocial distress.

All respondents noted the availability of mental health professionals, either within their organizations or through outside referrals that dealt specifically with cancer related psychosocial distress. Providers from all but 3 of the 10 respondent organizations said their patients had access to mental health professionals within their organization. The 3 organizations relying solely on outside referrals were located in rural areas. A total of 22 respondents (88%) felt their facility encouraged interdisciplinary communication in regards to cancer care, and only 1 respondent felt their cancer care facility had difficulty with staff turnover.

During the interview respondents were asked directly if they felt their organization paid adequate attention to psychosocial distress in cancer patients. Though these questions addressed organizational issues, they dealt with provider perceptions and therefore were analyzed at an individual level. Thirteen respondents (52%) felt their facilities paid adequate attention to psychosocial distress, 10 (40%) did not, and 2 had no comment.

When asked what could be done to improve the amount of attention paid to psychosocial distress, responses included increasing the number of staff (6), adopting a systematic assessment tool (4), increasing care giving staff participation in the process of distress management (3), improving staff education (1), and assessing all patients on admission (1). Respondents were also asked if they felt their organizations dealt with psychosocial issues in a manner that was efficient. Results were similar, with 13 (52%) stating that psychosocial care within their organization was efficient, 10 (40%) stating that psychosocial care was not dealt with in an efficient manner, and 2 having no comment. When asked what could be done to improve efficiency, responses included the adoption of a systematic assessment tool (7), increasing the number of staff (4), improving staff communication (2), and assessing all patients on admission (1). Four of the 25 respondents felt their facility was neither adequate nor efficient in terms of psychosocial care. Two of these 4 respondents were from the same organization, and 3 of the 4 who perceived neither adequate nor efficient psychosocial care were from facilities in rural locations.

Respondents who perceived that their organization was effectively addressing the psychosocial needs of cancer patients provided interesting insight into positive deviant behaviors. A respondent from a large, urban medical center noted the importance of available resources to their facility’s ability to innovate and provide comprehensive psychosocial care.

I think that in our facility. . . I think that what sets us apart is that you don’t always find the upper level like the psychiatry, psychology available. They [smaller facilities] may have social work, they may not have as many social workers, and they may not have the other like the massage therapy, like the chaplain, like the dietician. Those things may not be available so I think those. . . the package that they get. . . sets us apart.

Additionally, a different respondent, also from an urban setting, noted the importance of timeliness in their facility’s ability to meet patient needs.

I think, generally, accessibility is very much key. You don’t want to make it, you know, you may have the services in place but it’s just impossible to use either because they’re never there, they’re never available, they’re booked up, it takes weeks to see them, insurance doesn’t cover, they’re off site, you know all those things make it hard.

Respondents who noted efficient processes overwhelming noted the local availability of mental health professionals and processes that enabled communication between direct care providers and psychosocial supports.

Discussion

We conducted in-depth interviews with cancer care providers using a positive deviance theoretical perspective, which seeks to identify those organizations that were providing high levels of care within resource constrained environments. Two primary themes emerged. First, mental health professionals were widely available to cancer patients, but less geographically accessible to cancer patients being served in rural settings. Second, although mental health professionals may have been available, lack of a systematic assessment, agreed on definition of distress, and established treatment pathways for those determined to have distress markedly limited who received a referral for such services. Objective assessment of patients using an established screening or assessment tool is a cornerstone of clinical practice guidelines regarding the management of cancer related distress. ¹ Many respondents noted an over-reliance on subjective clinician judgment to determine who received psychosocial services. A respondent from an organization not currently assessing all patients noted,

I think that would be an excellent idea to have a screening tool, the same screening tool that’s used for every patient when they come in. Because we always pick up on the ones that have symptoms that stand out, but for the ones that are internalizing things and not quite so verbal, I don’t think we always get all of that.

We found psychosocial services were often available, but not readily accessible or provided to those who, for a variety of reasons, fail to be identified as distressed by busy clinicians.

Results of this investigation affirmed what has been shown in previous research addressing the provision of psychosocial care to patients with cancer. Respondents noted that the delivery of psychosocial services could be improved through the use of a systematic assessment tool on admission, as well as the addition of more staff members to provide patients with time and attention. They discussed the potential to solve this problem through more innovative methods of delivery, such as computerized assessments that are able to be quickly administered and utilized by staff from a variety of disciplines. As one respondent noted,

I think that you have to have something like that institutionalized in your work environment whereby it becomes part of the culture, the center. Unless it’s really the expectation and the norm then I think it will be delivered in a very adhoc fashion, which this is.

The low numbers of staff who have frequent contact with research evidence could also be improved through the addition of computerized, evidence based clinical practice guidelines, directing patients identified as highly distressed in the assessment process through an established pathway to treatment and referral.

Limitations

This project was designed to collect qualitative data to confirm the importance of the problem and suggest innovative strategies for practice improvement that could be further disseminated. Although we received many complementary perspectives, it was limited by a low number of participating organizations. Respondents are nested within organizations, and respondents working within the same organizational settings will have answers that are likely correlated. Also, though both urban and rural organizations are represented, respondents are from a single state and thus may be influenced by geographic customs or policies. However, we did achieve saturation on a number of themes, thus the sample is more than adequate from a qualitative investigation perspective.

Conclusions

This project was designed to guide the development of subsequent organizational practice improvement interventions and research to improve the processes of psychosocial care delivery within community cancer care settings. These data indicated that information technology based tools, such as routine psychosocial screeners and decision support tools, as well as redesigned practices, are greatly needed and likely could assist in the management of psychosocial distress. This study shows the clear need for organizational and practice redesign initiatives in both rural and urban settings to improve the delivery of psychosocial services to cancer patients.