Association Of Oncology Social Work Research Articles

A Mobile App to Support Self-Management in Patients with Multiple Myeloma or Chronic Lymphocytic Leukemia: Pilot Randomized Controlled Trial.

Patients with blood cancer experience serious physical and emotional symptoms throughout their cancer journey. Building on previous work, we aimed to develop an app designed to help patients with multiple myeloma and chronic lymphocytic leukemia self-manage symptoms and test it for acceptability and preliminary efficacy. We developed our Blood Cancer Coach app with input from clinicians and patients. Our 2-armed randomized controlled pilot trial recruited participants from Duke Health and nationally in partnerships with the Association of Oncology Social Work, Leukemia and Lymphoma Society, and other patient groups. Participants were randomized to the attention control (Springboard Beyond Cancer website) arm or the Blood Cancer Coach app intervention arm. The fully automated Blood Cancer Coach app included symptom and distress tracking with tailored feedback, medication reminders and adherence tracking, multiple myeloma and chronic lymphocytic leukemia education resources, and mindfulness activities. Patient-reported data were collected at baseline, 4 weeks, and 8 weeks for both arms through the Blood Cancer Coach app. Outcomes of interest were global health (Patient Reported Outcomes Measurement Information System Global Health), posttraumatic stress (Posttraumatic Stress Disorder Checklist for DSM-5), and cancer symptoms (Edmonton Symptom Assessment System Revised). Among participants in the intervention arm, satisfaction surveys and usage data were used to evaluate acceptability. Among 180 patients who downloaded the app, 49% (89) of them consented to participate and 40% (72) of them completed baseline surveys. Of those who completed baseline surveys, 53% (38) of them completed week 4 surveys (16 intervention and 22 control) and 39% (28) of them completed week 8 surveys (13 intervention and 15 control). Most participants found the app at least moderately effective at helping manage symptoms (87%), feeling more comfortable seeking help (87%), increasing awareness of resources (73%), and reported being satisfied with the app overall (73%). Participants completed an average of 248.5 app tasks over the 8-week study period. The most used functions within the app were medication log, distress tracking, guided meditations, and symptom tracking. There were no significant differences between the control and intervention arms at week 4 or 8 on any outcomes. We also saw no significant improvement over time within the intervention arm. The results of our feasibility pilot were promising in which most participants found the app to be helpful in managing their symptoms, reported satisfaction with the app, and that it was helpful in several important areas. We did not, however, find significantly reduced symptoms or improved global mental and physical health over 2 months. Recruitment and retention were challenging for this app-based study, an experience echoed by others. Limitations included a predominantly White and college educated sample. Future studies would do well to include self-efficacy outcomes, target those with more symptoms, and emphasize diversity in recruitment and retention. ClinicalTrials.gov NCT05928156; https://clinicaltrials.gov/study/NCT05928156.

Oncology social work practice behaviors: a national survey of AOSW members

Purpose Few studies have examined the practices of U.S. oncology social workers since the implementation of distress screening. This study presents data about oncology social work practice behaviors, including participation in distress screening and interdisciplinary team integration. Design Using a cross-sectional survey design, Association of Oncology Social Work (AOSW) members were invited to complete the anonymous web-based survey between June and September 2019. Sample AOSW members (N = 1116) were invited through email and listserv posts to participate in the survey with 533 (47.8%) responding. Methods A quantitative on-line survey was used to investigate demographics, distress screening roles and other practice behaviors. Descriptive analyses were conducted on the data. Results Respondents engaged in a range of practice behaviors consistent with the Standards and Scope of Practice published by AOSW, primarily engaging in patient-focused work. They reported viewing their role as integrated with the interdisciplinary team. Respondents were highly involved in distress screening processes, primarily receiving referrals from distress screening but also collecting/reviewing screening results and referring patients to other providers based on those results. Implications for Psychosocial Providers Knowledge about the ways that oncology social workers enact their role across settings and locations could be useful to those developing effective and integrated psychosocial oncology programs, especially distress screening protocols. Specific knowledge about the practice behaviors of oncology social workers in the U.S. may also help to delineate the role from the work of other interdisciplinary oncology team members.

Oncology social work intervention index (OSWii): An instrument to measure oncology social work interventions to advance research

Background/Purpose There is much interest in screening for and treating psychosocial distress in cancer patients; however, little is known about if and how psychosocial services are provided for patients demonstrating significant levels of distress. Oncology social workers (OSWs) are the primary providers of psychosocial care for cancer patients and their families, yet there is no widely-used and empirically-validated instrument that captures the range of interventions provided by OSWs. The purpose of this paper is to describe the development of the Oncology Social Work Intervention Index (OSWii), designed to measure interventions provided by OSWs, and the results of testing the instrument. Methods We conducted a content analysis of data collected by the Association of Oncology Social Work’s Project to Assure Quality Cancer Care (APAQCC). We analyzed 3,194 responses from an open-ended question that described social work interventions following a distress screen. Five investigators coded the data in an iterative process to enhance instrument validity. The resulting instrument measuring OSWii was piloted with 38 oncology social workers across 156 individual cases. Results OSWs who piloted the OSWii spent a majority of time (72%) engaging in clinical interventions. The user assessment revealed that data entry was rapid, the instrument was easy to use, and the content was relevant to the cancer treatment setting. Conclusions and Implications Using a standardized instrument that reflects OSWs’ clinical interventions is critical for researchers to examine the impact of psychosocial interventions on patient outcomes. This index may also advance the translation of scientific findings into patient-centered psychosocial cancer care. This pilot test suggests that the OSWii is both scalable and useful.

Prevalence of psychosocial distress in cancer patients across 55 North American cancer centers

Routine distress screening in United States oncology clinics has been mandatory since 2015.Objective: This study was the first to assess distress in a geographically diverse sample of cancer patients following mandated distress screening implementation by oncology social workers.Methods: Sites were self-selected via social workers who applied to participate in the Association of Oncology Social Work’s Project to Assure Quality Cancer Care, advertised through their social media outlets and conference. Electronic screening records were collected from 55 cancer treatment centers in the United States and Canada. Cases required cancer diagnoses and Distress Thermometer (DT) scores to be included. Distress rates and rates by age, sex, cancer type, and ethnicity were examined.Results: Of 4664 cases, 46% (2157) experienced significant distress (DT score ≥ 4). Being female, age 40-59, and having diagnoses of pancreatic or lung cancer was associated with increased likelihood of distress. Half of cases experience clinically-significant distress, though this need was not evenly distributed across patient or cancer types.Conclusion: Identifying those at risk for distress may help inform optimal resource allocation. Methods to address needs of distressed patients in cases of limited resources are discussed.

The Association of Oncology Social Work's Project to Assure Quality Cancer Care (APAQCC)

ABSTRACTIn 2014, the Association for Oncology Social Work (AOSW) established A Project to Assure Quality Cancer Care (APAQCC), a group of oncology social workers representing sixty-five Commission on Cancer (CoC)-accredited cancer programs across the US (including two in Canada). Its aims were (1) to examine the capacity of cancer programs to provide quality psychosocial support services, and (2) to evaluate the implementation of distress screening. The purpose of this paper is to describe how this collaborative research program was created and implemented under the auspices of AOSW, and to report on its impact on the oncology social workers who participated.

Institutional capacity to provide psychosocial oncology support services: A report from the Association of Oncology Social Work.

This study reports cancer-treating institutions' capacity to deliver comprehensive psychosocial support services. Oncology care providers at 60 cancer-treating institutions completed surveys assessing the capacity of their institutions to provide psychosocial care. Capacity was assessed with the Cancer Psychosocial Care Matrix (CPCM) from the National Cancer Institute (NCI). Scores represented individuals' perceptions of their cancer program's performance with respect to 10 fundamental elements of psychosocial care. Among 2134 respondents, 62% reported a mid-level capacity for ≥5 of 10 CPCM items. In comparison with other types of cancer programs (eg, NCI-designated, academic, or comprehensive centers), providers at community cancer programs reported a significantly greater capacity with respect to patient-provider communication, psychosocial needs assessment, and continuity in the delivery of psychosocial care over time. Nurses and primary medical providers reported a significantly lower capacity for linking patients and families with needed psychosocial services within their respective cancer programs. They also reported a significantly higher capacity for conducting follow-up, re-evaluations, and adjustments of psychosocial treatment plans. Cancer programs are performing moderately well in terms of communicating to patients the importance of psychosocial care, identifying patient psychosocial needs, and referring patients and families to psychosocial services. They are doing less well with respect to the provision of that care over time. Findings suggest that gaps in psychosocial service capacity are a function of patient, provider, and system characteristics. These results may be useful in formulating strategies to enhance psychosocial care delivery. Cancer 2016;122:1937-45. © 2016 American Cancer Society.

Screening for Psychosocial Distress: A National Survey of Oncology Social Workers

Oncology social workers are the primary providers of psychosocial care for cancer patients, thus they are well positioned to implement and oversee psychosocial distress screening. A national survey of members of the Association of Oncology Social Work was conducted to examine screening knowledge, attitudes, behaviors, and perceived competency. The findings indicated that most participants screened for psychosocial distress using a standardized instrument and identified institutional and individual barriers to implementing screening. Analyses revealed that social workers who perceived patient benefits from screening and were knowledgeable about guidelines were significantly more likely to implement screening procedures and use a standardized instrument.

ExCEL in Social Work: Excellence in Cancer Education & Leadership: An Oncology Social Work Response to the 2008 Institute of Medicine Report.

ExCEL in Social Work: Excellence in Cancer Education & Leadership was a multi-year National Cancer Institute (NCI)-funded grant for the development and implementation of an innovative educational program for oncology social workers. The program's curriculum focused upon six core competencies of psychosocial-spiritual support necessary to meet the standard of care recommended by the 2008 Institute of Medicine (IOM) Report: Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs. The curriculum was delivered through a collaborative partnership between the City of Hope National Medical Center and the two leading professional organizations devoted exclusively to representing oncology social workers--the Association of Oncology Social Work and the Association of Pediatric Oncology Social Workers. Initial findings support the feasibility and acceptability of this tailored leadership skills-building program for participating oncology social workers.

Recommendations for the implementation of distress screening programs in cancer centers: report from the American Psychosocial Oncology Society (APOS), Association of Oncology Social Work (AOSW), and Oncology Nursing Society (ONS) joint task force.

In 2015, the American College of Surgeons (ACoS) Commission on Cancer will require cancer centers to implement screening programs for psychosocial distress as a new criterion for accreditation. A joint task force from the American Psychosocial Oncology Society, the Association of Oncology Social Work, and the Oncology Nursing Society developed consensus-based recommendations to guide the implementation of this requirement. In this review, the authors provide recommendations regarding each of the 6 components necessary to meet the ACoS standard: 1) inclusion of psychosocial representation on the cancer committee, 2) timing of screening, 3) method/mode of screening, 4) tools for screening, 5) assessment and referral, and 6) documentation.

Rapid Access to Mental Health Professionals With Experience in Treating Cancer-Related Distress: The American Psychosocial Oncology Referral Helpline

The new quality standard for cancer care established in 2008 by the Institute of Medicine requires that the psychosocial domain be integrated into routine cancer care. The American College of Surgeons Commission on Cancer has incorporated this standard in its accreditation requirements for 1500 cancer centers in the country, to be fully implemented by 2015. Oncology offices and clinics are developing procedures for quickly identifying distressed patients and referring them to appropriate mental health professionals. The American Psychosocial Oncology Society (APOS), the Association of Oncology Social Work, and the Oncology Nursing Society are currently drafting recommendations to assist clinics in complying with accreditation requirements. A critical component of this new quality standard is assuring that those who need mental health services are referred to the appropriate resource. A large disconnect exists in most communities between oncology and mental health professionals because they treat very different patient populations. Therefore, oncology staff may have difficulty identifying mental health professionals for patients in need of psychological help. This step can be simplified by use of the APOS Helpline. This article discusses the unique role of the APOS Referral Helpline in the context of this new era of psychosocial care for patients with cancer.

Using the Science of Psychosocial Care to Implement the New American College of Surgeons Commission on Cancer Distress Screening Standard

The American College of Surgeons (ACoS) Commission on Cancer (CoC) has advanced a new patient-centered accreditation standard requiring programs to implement psychosocial distress screening and referral for psychosocial care. The field of psychosocial oncology has advocated for routine distress screening as an integral component of quality cancer care since the NCCN Distress Management Panel first recommended this practice in 1999. Accreditation standards have a significant impact on practice patterns and quality of care. The new ACoS CoC Psychosocial Distress Screening Standard provides a unique opportunity to integrate the science of psychosocial care into clinical practice. National organizations, including the American Psychosocial Oncology Society, the Association of Oncology Social Work, the Cancer Support Community, and LIVESTRONG, can offer valuable guidance and resources. This article reviews ACoS CoC requirements, highlighting key research findings and providing practical considerations to guide programs with implementation. Although screening for distress encompasses many domains, this article reviews the evidence linking depression-one aspect of distress-and cancer outcomes to highlight the profound influence psychosocial care delivery can have on promoting medical outcomes and quality cancer survivorship. The authors describe distress screening program accomplishments at Northwestern University, including the electronic administration of NIH Patient Reported Outcomes Measurement Information System computerized adaptive testing item banks. Electronic medical record integration facilitates real-time scoring, interpretation, provider notification, and triage for psychosocial care. Roughly one-third of patients have requested assistance with psychosocial needs. As ACoS CoC programs implement psychosocial distress screening and management, the emerging field of implementation science can guide future clinical program developments and research priorities.

E-Counseling in Psychosocial Cancer Care: A Survey of Practice, Attitudes, and Training Among Providers

In the cancer setting, e-counseling interventions may be uniquely beneficial as they spare patients the cost and burden of traveling to a hospital or clinic for psychosocial care. However, the prevalence of e-counseling among psychosocial cancer care providers is unknown, as are the training needs with regard to e-counseling among this group of professionals. Thus, our group conducted an online professional training needs assessment with psychosocial cancer care providers. Participants (n=120) were recruited from the listservs of the Health Psychology Division of the American Psychological Association, the Society of Behavioral Medicine-Cancer Special Interest Group, the American Psychosocial Oncology Society, and the Association of Oncology Social Work. All completed a 14-item online survey. Although 84% of participants stated that e-counseling could be important to their clinical work with cancer patients and survivors, 88% reported that they did not have the skills to effectively conduct e-counseling, and 81% reported that there were no adequate e-counseling educational opportunities. When asked about future training opportunities, participants reported a preference for online training versus live training (p<0.001). Overall, the results highlight the need for online training programs in e-counseling for psychosocial cancer care providers. The training of psychosocial cancer care providers in e-counseling is a critical first step towards increasing implementation of e-counseling interventions and using the Internet to deliver effective interventions to cancer patients in need.

Impending Oncology Social Worker Shortage?

"Impending Oncology Social Worker Shortage?." Oncology Issues, 25(5), pp. 46–47 Additional informationNotes on contributorsCarolyn MessnerCarolyn Messner, DSW, MSW, LCSW-R, is president of the Association of Oncology Social Work and director of Education and Training, CancerCare.

Perspectives on the financial burden of cancer care: Concurrent surveys of patients (Pts), caregivers (CGs), and oncology social workers (OSWs).

9111 Background: In the United States, cancer treatment is often associated with substantial financial burden. To better understand the financial issues associated with cancer and their impact on Pts, concurrent surveys of Pts, CGs, and OSWs were undertaken in a collaborative effort between Kelton Research and the Association of Oncology Social Work (AOSW), funded by Millennium pharmaceuticals. Methods: Pts and CGs recruited from 2 national research panels and AOSW members were invited to complete online surveys in Oct–Nov 2009; 169 Pts, 131 CGs, and 153 OSWs responded. Pt/CG data are presented in aggregate. Results: 57% of Pts had experienced serious hardship relating to bills for cancer treatment, including depleted savings (40%) and bankruptcy (6%). 39% of Pts had a serious or catastrophic financial burden; among these Pts, costs negatively impacted ability to focus on recovery in 87%, and 75% constantly worried about financial issues. 51% of CGs tried to shield Pts from the financial aspects of treatment, while 73% of OSWs reported discussing financial issues with all/most of their Pts and 58% indicated this always or frequently had a positive result. While 62% of Pts indicated they were familiar with the treatment options covered by their health plan, OSWs perceived that only 4% of Pts with newly diagnosed cancer are aware of their options. OSWs witnessed the impact of financial issues on Pt adherence to treatment (Table). Although 69% of OSWs perceived themselves to be their Pts' primary resource for dealing with financial issues associated with cancer treatment, only 34% of Pts/CGs reported interacting with an OSW. Conclusions: The financial challenges of treatment are a key issue facing pts with cancer, which can interfere with treatment protocols and impact adherence. OSWs can support pts in working through financial and psychosocial barriers to treatment and enhanced quality of life, yet only a third of Pts report interacting with an OSW. Compliance issue OSWs witnessing, % Delay/failure to fill prescription 88 Asking for less expensive treatment 66 Skipped appointment to avoid co-pay 64 Skipped dose 58 Cut dose in half 58 Did not get/postponed treatment 56 Ended treatment early 52 No significant financial relationships to disclose.

Cancer Education and Effective Dissemination: Information Access is not Enough

Education is the main avenue for disseminating new research findings into clinical practice. Understanding factors that affect translation of research into practice may help cancer educators design programs that facilitate the time it takes for research-indicated practices to become standard care. To understand various factors, the National Cancer Institute (NCI) Office of Education and Special Initiatives (OESI)(1) with individual cooperation from Oncology Nursing Society (ONS), American Society of Clinical Oncology (ASCO), and Association of Oncology Social Work (AOSW) administered a Practitioner Information Needs survey to five different types of practitioners involved in cancer care. While most of the 2,864 practitioners (83%) agreed they had access to current practice information, practitioners in large practice settings were more likely to report having access to research than those small practice settings. However, only 33% indicated that they had adequate time to access the information. Colleagues or experts within the organization were cited as the most frequently relied on information resource (60%), and peer-reviewed journals were cited as second (57%). Overall, 66% strongly or somewhat agreed that their organizations exhibit effective change management practices. A majority (69%) agreed that implementation of new practices is hindered by the lack of available staff time. Financial factors and the characteristics of the information presented were also believed to be factors contributing to research implementation. Group differences were observed among practitioner groups and practice settings for some factors.

Barriers to Accessing Quality Health Care for Cancer Patients: A Survey of Members of the Association of Oncology Social Work

The present article reports data from a cross-sectional survey of members of the Association of Oncology Social Work (AOSW) completed in May 2006. The purpose of the survey was to gather information on AOSW members' practice roles, the clients they serve, and their views on barriers cancer patients face in obtaining quality cancer care. The survey instrument was a self-administered 18-page survey disseminated online and by U.S. mail to members who did not provide e-mail addresses. The response rate to the survey was 62.3% (622/999). Reported barriers to quality cancer care are presented here in three categories: health system, social/environmental, and individual-level barriers. The majority of respondents reported health system barriers, specifically inadequate health insurance, as the major barrier to accessing quality health care for cancer patients. Among social/environmental barriers, inability to pay for treatment-related expenses was the major barrier. Among individual-level barriers, patients' fears and distress were the major barriers. The conclusions from this survey point to the critical role of oncology social workers in assisting cancer patients in overcoming the barriers to quality care and achieving optimum quality of life.

Historical Threads in the Development of Oncology Social Work

As the Association of Oncology Social Work celebrates its 25th year, we pause to reflect on the many historical threads that contributed to its development and hear from each of the presidents who helped create the organization, as we know it today. Set within hospitals, medical social work was born in the early 20th century. In the 1940s medical social work became necessary for hospital accreditation. Two additional historical shifts, one in medical improvements in treating cancer, the other a shift to a consumer-oriented American Cancer Society, contributed to the push for a greater role for the federal government in funding cancer research. Oncology social work came to full blossom in the 1970s, a result of the physicians’ need for a member of the health care team who understood cancer, its treatment, and the patient's need to address his or her psychosocial needs resulting from cancer. Today, oncology social work is a fully developed profession with a national organization providing education and support to oncology social workers’ in their use of psychosocial interventions and research in behalf of cancer patients and their families.

Allogeneic BMT and patient eligibility based on psychosocial criteria: a survey of BMT professionals

BMT professionals were compared regarding their willingness to proceed with allogeneic BMT given select psychosocial issues. A questionnaire was sent to 660 physician members of ASBMT, 92 social work members of BMT Special Interest Group, Association of Oncology Social Work, and 626 nurse members of BMT Special Interest Group, Oncology Nursing Society; 597 responded with a response rate of 43.5%. Items included background information, followed by 17 case vignettes; each represented a different psychosocial issue to which respondents indicated whether or not they would recommend proceeding with allogeneic BMT. In every vignette, at least 10% of respondents indicated they would not proceed. In six vignettes, at least 64% indicated do not proceed: suicidal ideation (86.8%), uses addictive illicit drugs (81.7%), history of noncompliance (80.5%), no lay caregiver (69.3%), alcoholic (64.8%), and mild dementia/Alzheimer's (64.4%). In 10 vignettes, at least 73% indicated proceed. On four vignettes, professional subgroups differed in their recommendation on whether or not to proceed with allogeneic BMT. Qualitative data suggest that this decision is contingent on the perceived acuity, severity, and currency of the psychosocial issue, patient ability to comply with treatment given the issue, and its manageability as a risk factor for treatment related vulnerability and outcomes.

Cancer Clinical Trials Education Program: A Training Program to Reach Patients and the Public

Despite advances in cancer research, accrual of cancer patients or participants to clinical trials, as a treatment or prevention option, has remained low, hindering both research progress and patient access to potentially beneficial therapy. As one response, the National Cancer Institute (NCI) and the NCI-supported Cancer Information Service, partnered with the Oncology Nursing Society, the Association of Oncology Social Work, and Novartis Oncology, to implement the NCI’s Cancer Clinical Trials Education Program (CCTEP) for health professionals, using a “train-the-trainer” approach. From June 1997-June 1999, approximately 300 “charter” trainees completed the training program and presented programs for over 1,500 participants. Evaluation efforts are ongoing. The CCTEP was developed and is being implemented within a collaborative partnership model, insuring a broad reach to health professionals, patients and the public. The use of this partnership model for a far-reaching educational effort can be adapted by other program planners.

Self-advocacy training for cancer survivors. The Cancer Survival Toolbox.

With the advent of managed healthcare, self-advocacy has been identified as an essential skill for cancer survivors. This article describes a self-advocacy training program, the Cancer Survival Toolbox, developed through a unique collaborative effort by the National Coalition for Cancer Survivorship, the Association of Oncology Social Work, and the Oncology Nursing Society. Self-advocacy training is provided in audiotape format, as well as through the Internet and in interactive groups. The need for this training was established through surveys completed by 569 cancer survivors and 833 oncology professionals. Essential skills were identified through a literature review, and the content of the training was pilot tested with bicoastal groups of cancer survivors and with feedback from representatives of 15 national cancer organizations. While the majority of the 569 respondents to the survivor survey were highly educated and between the ages of 31 and 60 years, fewer than half reported that when they first received a diagnosis of cancer they were able to communicate their needs effectively, had the skills necessary to make decisions, or were able to negotiate with healthcare providers, insurers, and employers. Results of the survey of professional oncology nurses and social workers also supported the need for self-advocacy training. Fewer than one third of the 833 respondents to the professional survey reported that their patients who had received new diagnoses of cancer had essential self-advocacy skills. This self-advocacy training program is currently available on audiotape in English and Spanish. It is available in print in Chinese on the Internet. Data from the pilot groups indicate the program effectively addresses the self-advocacy skills of communication, information seeking, problem solving, decision making, and negotiating. Data are currently being collected to assess the efficacy of the audiotape format and the impact of the training on survivors and professionals. Future plans include training oncology professionals to teach these skills and to work collaboratively with survivors in advocacy efforts. Additional programs designed to address the needs of the uninsured as well as older adult and pediatric survivor populations are in development.