Improving cancer care for underserved populations in an academic and community practice setting: protocol for a community health worker pilot navigation programme.

INTRODUCTION: Delaying cancer treatment following diagnosis impacts health outcomes, including increasing patient distress and odds of mortality. Interventions to promote timely healthcare engagement may decrease patient-reported stress and improve quality of life. Community health workers (CHWs) represent an enabling resource for reducing delays in attending initial oncology treatment visits. As part of an ongoing programme evaluation coordinated by the Merck Foundation, we will implement a pilot navigation programme comprising CHW-conducted needs assessments for supporting patients and their caregivers. We aim to investigate (1) the programme's influence on patients' healthcare utilisation within the period between their first diagnosis and initial treatment visit and (2) the logistic feasibility and acceptability of programme implementation. METHODS AND ANALYSIS: We will employ a hybrid implementation design to introduce the CHW navigation programme at the Johns Hopkins Sidney Kimmel Comprehensive Cancer Center. CHW team members will use a consecutive sampling approach. Participants will complete the Problem-Checklist, Chronic Illness Distress Scale and the Satisfaction with Life Domains instruments. CHWs will provide tailored guidance by sharing information available on the Johns Hopkins Electronic Resource databases. The investigators will evaluate patients' time to initial oncology treatment and healthcare utilisation by reviewing electronic medical records at 3 and 6 months postintervention. Bivariate analyses will be completed to evaluate the relationships between receiving the programme and all outcome measures. ETHICS AND DISSEMINATION: This study's protocol was approved by the Johns Hopkins School of Medicine's institutional review board (IRB00160610). Informed consent will be obtained by phone by the CHW navigator. Dissemination planning is ongoing through regular meetings between members of the investigator team and public members of two community advisory groups. Study plans include collaborating with other experts from the Johns Hopkins Institute for Clinical and Translational Research and the Johns Hopkins Center for Health Equity for ideating dissemination strategies.

Implementing patient navigation programs: Considerations and lessons learned from the Alliance to Advance Patient-Centered Cancer Care.

BACKGROUND: Six multidisciplinary cancer centers were selected and funded by the Merck Foundation (2017-2021) to collaborate in the Alliance to Advance Patient-Centered Cancer Care ("Alliance"), an initiative to improve patient access, minimize health disparities, and enhance the quality of patient-centered cancer care. These sites share their insights on implementation and expansion of their patient navigation efforts. METHODS: Patient navigation represents an evidence-based health care intervention designed to enhance patient-centered care and care coordination. Investigators at 6 National Cancer Institute-designated cancer centers outline their approaches to reducing health care disparities and synthesize their efforts to ensure sustainability and successful transferability in the management of patients with cancer and their families in real-world health care settings. RESULTS: Insights are outlined within the context of patient navigation program effectiveness and supported by examples from Alliance cancer center sites: 1) understand the patient populations, particularly underserved and high-risk patients; 2) capitalize on the existing infrastructure and institutional commitment to support and sustain patient navigation; and 3) build capacity by mobilizing community support outside of the cancer center. CONCLUSIONS: This process-level article reflects the importance of collaboration and the usefulness of partnering with other cancer centers to share interdisciplinary insights while undergoing intervention development, implementation, and expansion. These collective insights may be useful to staff at other cancer centers that look to implement, enhance, or evaluate the effectiveness of their patient navigation interventions.

Defining self-disclosure of personal cancer coping experiences in oncology social workers' helping relationships: When cancer "hits home".

PURPOSE: Oncology social workers are increasingly finding themselves diagnosed with or caring for a loved one with cancer. Self-disclosure may be useful for building a therapeutic alliance. Yet, practice-informed guidelines for psychosocial oncology providers do not exist. RESEARCH APPROACH: Twenty-three psychosocial oncology providers diagnosed with and/or providing care to someone with cancer completed semi-structured interviews eliciting attitudes and utilization regarding self-disclosure. METHODOLOGICAL APPROACH: Interviews were digitally recorded and transcribed verbatim. Using grounded theory's constant comparative method, researchers conducted open and theoretical coding. FINDINGS: Participants expressed consensus in defining, and reported a range of evolving practices regarding, self-disclosure. Recommendations for responsible self-disclosure included self-awareness, ongoing assessment, supervision, and enhanced educational programming. INTERPRETATION AND IMPLICATION: Therapeutic tools must evolve as core features of psychosocial oncology care. A flexible and context-specific framework for clinician self-disclosure related to personal experiences with cancer can guide oncology social work practice.

The challenges of the integration of cancer survivorship care plans with electronic medical records.

OBJECTIVES: To provide an overview of issues and challenges associated with integrating development of survivorship care plan processes with electronic medical records (EMRs). DATA SOURCES: Published peer-reviewed literature. CONCLUSION: Evidence seems to indicate that survivorship care plans have value to survivors, oncology specialist providers, and primary care providers. Yet, the existence of cost and time restraints are major barriers to creation and use of survivorship care plans, and the expectations that EMR can simplify and expedite survivorship care plan development have yet to be realized. IMPLICATIONS FOR NURSING PRACTICE: Nurses participating in the development of survivorship programs can contribute to successful implementation of EMR-facilitated survivorship care plans by involvement in strategic planning processes, and establishment of reasonable timelines to address the known and unknown barriers, and assuring the resulting EMR product includes essential data and information.

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.

Clinical perspective: Linking psychosocial care to the disease continuum in patients with multiple myeloma.

OBJECTIVE: A model of psychosocial care specific for patients with multiple myeloma and their caregivers has not yet been proposed. We sought to develop a model of care that considers the specific profile of this disease. METHOD: The authors, representing a multidisciplinary care team, met in December of 2012 to identify a model of psychosocial care for patients with multiple myeloma and their caregivers. This model was determined by consensus during the meeting and via total agreement following the meeting. The meeting was sponsored by Onyx Pharmaceuticals. RESULTS: The need for targeted psychosocial care for the multiple myeloma patient and caregiver throughout the disease process is essential to ensure quality of life and optimal treatment outcomes. We propose herein the first known model of care for the treatment of multiple myeloma that engages both the patient and their caregivers. SIGNIFICANCE OF RESULTS: Innovative partnerships between psychosocial providers and other entities such as pharmaceutical companies can maximize resources for comprehensive program development. This manuscript proposes a model of care that promotes active engagement in therapies for multiple myeloma while engaging the individual patient and their family caregivers. This treatment approach must be evidence based in terms of distress screening tools, comprehensive psychosocial assessments, and, most importantly, in the interventions and measurements of response that clinicians apply to this population.

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.

A problem-solving education intervention in caregivers and patients during allogeneic hematopoietic stem cell transplantation.

The aim of this study was to determine the effect of problem-solving education on self-efficacy and distress in informal caregivers of allogeneic hematopoietic stem cell transplantation patients. Patient/caregiver teams attended three 1-hour problem-solving education sessions to help cope with problems during hematopoietic stem cell transplantation. Primary measures included the Cancer Self-Efficacy Scale-transplant and Brief Symptom Inventory-18. Active caregivers reported improvements in self-efficacy (p < 0.05) and distress (p < 0.01) post-problem-solving education; caregiver responders also reported better health outcomes such as fatigue. The effect of problem-solving education on self-efficacy and distress in hematopoietic stem cell transplantation caregivers supports its inclusion in future interventions to meet the multifaceted needs of this population.

The history of psychosocial screening among cancer patients.

Over the past ten years, the concept of psychosocial screening has received a great deal of attention. Guidelines, recommendations, and standards have been developed to encourage or require that all patients be screened for their distress at the time of diagnosis or when patients commence care in a cancer center for the first time. However, the concept of psychosocial screening has long history in the cancer literature.

Meta-analysis of screening and case finding tools for depression in cancer: evidence based recommendations for clinical practice on behalf of the Depression in Cancer Care consensus group.

BACKGROUND: To examine the validity of screening and case-finding tools used in the identification of depression as defined by an ICD10/DSM-IV criterion standard. METHODS: We identified 63 studies involving 19 tools (in 33 publications) designed to help clinicians identify depression in cancer settings. We used a standardized rating system. We excluded 11 tools without at least two independent studies, leaving 8 tools for comparison. RESULTS: Across all cancer stages there were 56 diagnostic validity studies (n=10,009). For case-finding, one stem question, two stem questions and the BDI-II all had level 2 evidence (2a, 2b and 2c respectively) and given their better acceptability we gave the stem questions a grade B recommendation. For screening, two stem questions had level 1b evidence (with high acceptability) and the BDI-II had level 2c evidence. For every 100 people screened in advanced cancer, the two questions would accurately detect 18 cases, while missing only 1 and correctly reassure 74 with 7 falsely identified. For every 100 people screened in non-palliative settings the BDI-II would accurately detect 17 cases, missing 2 and correctly re-assure 70, with 11 falsely identified as cases. The main cautions are the reliance on DSM-IV definitions of major depression, the large number of small studies and the paucity of data for many tools in specific settings. CONCLUSIONS: Although no single tool could be offered unqualified support, several tools are likely to improve upon unassisted clinical recognition. In clinical practice, all tools should form part of an integrated approach involving further follow-up, clinical assessment and evidence based therapy.

Validity of the Psycho-Oncology Screening Tool (POST).

Identifying cancer patients who are experiencing psychosocial challenges during the early phase of oncology treatment can prevent escalating patient distress. Standardized screening methods allow the medical team to identify those at high risk for poor adjustment. The purpose of this study was to provide preliminary psychometric evidence for a brief, self-administered screening instrument, the Psycho-Oncology Screening Tool (POST), designed to evaluate emotional and physical distress, depressive symptoms, and social concerns. Participants included 944 radiation oncology patients who completed the POST prior to their treatment appointment and a subgroup of 516 patients who completed the POST and one of six concurrent validity measures. Psychometric analysis included construct validity evidence provided through confirmatory factor analysis (CFA), internal reliability estimates, and concurrent validity estimates assessed with bivariate correlations between POST subscales scores and conceptually similar established measures. A three-factor CFA model was found to produce acceptable model fit, supporting the three domain structure of the POST. Furthermore, the three subscales--emotional and physical distress, depressive symptoms and social concerns--were found to produce acceptable internal reliability estimates (α = .73-.88). Concurrent validity evidence was observed with significant, moderate to large correlations between the POST subscales and all relevant measures (i.e., Profile of Mood States, Hospital Anxiety and Depression Scale, Functional Assessment of Cancer Therapy Fatigue, Beck Depression Inventory, Pain Disability Index, and the Interpersonal Support Evaluation List) with correlations ranged from 0.42 to 0.83, p < 0.01. Patients and clinic staff reported no problems administering or completing the POST. Results of this study support the psychometric soundness as well as the feasibility and acceptability of the POST as a brief screening tool for oncology patients receiving outpatient services.

Distress screening in allogeneic hematopoietic stem cell (HSCT) caregivers and patients.

UNLABELLED: Family caregivers of allogeneic hematopoietic stem cell transplant (HSCT) patients are at risk for experiencing significant psychological distress yet screening caregivers has not been well studied. OBJECTIVE: This analysis explored the psychometric characteristics of the Distress Thermometer (DT) by examining its relationship, sensitivity, and specificity relative to the Brief Symptom Inventory 18 (BSI-18) and the Multidimensional Fatigue Symptom Inventory (MFSI) in a sample of allogeneic HSCT caregivers and patients. METHODS: Longitudinal data were drawn from an ongoing intervention study for HSCT caregivers and patients. Data from one hundred and fifty-six English-speaking adults where patients (n = 65) were receiving their first allogeneic HSCT with at least one adult caregiver (n = 91) were eligible for this analysis. Study questionnaires were administered at baseline, initial discharge, and 6 weeks following discharge. RESULTS: Construct validity was supported by significant relationships (p<0.001) between the DT and the BSI-18 GSI and the MFSI-Emotional subscales for caregivers and patients. The diagnostic utility of the DT for patients was good (AUC = 0.85±0.05, p = 0.001), while for caregivers it was poor (AUC = 0.61±0.08, p = 0.28). A DT cut point of 5 was supported for patients (sensitivity = 1.0, specificity = 0.68), while for caregivers there was less confidence (sensitivity = 0.70, specificity = 0.52). Caregivers and patients reporting a higher number of problems had a greater level of distress (p<0.001). CONCLUSIONS: These findings support the validity of the DT in screening for distress in HSCT caregivers and patients. Although the diagnostic utility of the DT for HSCT caregivers may be limited, understanding factors associated with distress can guide practice for this understudied population.

Psychological distress in patients with pancreatic cancer--an understudied group.

BACKGROUND: Pancreatic cancer is the fourth leading cause of cancer-related death in the United States, unsuccessful in significantly improving 5-year survival. A diagnosis of pancreatic cancer may be associated with increased psychological distress, yet remarkably little is known about the degree of psychological distress experienced by these patients at the time of diagnosis and treatment. METHOD: In a cross-sectional study, 304 patients with pancreatic cancer and 7749 patients with other cancer diagnoses completed the Brief Symptom Inventory (BSI) or the Brief Symptom Inventory-Shortened Version (BSI-18) and the Problem Common Checklist (PCL) during outpatient registration. Sociodemographic characteristics were collected from patients' clinical files. RESULTS: A higher percentage of pancreatic cancer patients reported elevated distress across each subscale of the BSI and BSI-18 when compared with those diagnosed with other cancer diagnoses as a group. The most notable difference was established on the depression subscale, with 28.8% of pancreatic patients reporting elevated depression compared with 18.5% of other cancer diagnoses. In pancreatic patients, a significant difference was also found in the percentage of males endorsing high depression levels when compared with females (34.0 vs 22.6%, p<0.05). CONCLUSIONS: Pancreatic cancer patients demonstrate elevated levels of psychological distress. This should alert providers to be vigilant in evaluating patients for distress and to provide appropriate referrals. The endorsement of fatigue and pain, along with the observed gender differences, suggest that early distress management interventions may need to include components targeted to these issues.

An individualized dyadic problem-solving education intervention for patients and family caregivers during allogeneic hematopoietic stem cell transplantation: a feasibility study.

BACKGROUND: Allogeneic hematopoietic stem cell transplantation (HSCT) generates multiple problems that vary in complexity and create significant distress for both patients and their caregivers. Interventions that address patient and family caregiver distress during allogeneic hematopoietic stem cell transplantation (HSCT) have not been tested. OBJECTIVE: To evaluate the feasibility of conducting an individualized dyadic problem-solving education (PSE) intervention during HSCT and estimate a preliminary effect size on problem-solving skills and distress. METHODS: The PSE intervention consisted of 4 sessions of the Prepared Family Caregiver PSE model. Data were collected with an interventionist log, subject interviews and standardized questionnaires. RESULTS: Of the 34 adult dyads screened, 24 were ineligible primarily because of being non-English-speaking (n = 11) and inconsistent caregivers (n = 10). Ten dyads (n = 20) were enrolled, and 8 dyads (n = 16) completed the intervention. Of the 31 sessions, 29 were completed (94%). Worsening patient condition was the primary reason for sessions to be incomplete. Patients attended 90% of the sessions; caregivers attended 74%. Reasons for missed sessions included patient symptom distress and limited caregiver availability. Dyads reported being very satisfied (mean, 4.8 [SD, 1.8]; range, 1-5), stating "an opportunity to talk" and "creative thinking" were most beneficial. CONCLUSION: Results suggest that dyads can participate in PSE during HSCT and view it as beneficial. Participants identified the active process of solving problems as helpful. IMPLICATIONS FOR PRACTICE: Targeted interventions that promote effective, meaningful behaviors are needed to guide patients and caregivers through HSCT. Future research recommendations include testing a version of PSE with fewer sessions, including spousal and nonspousal caregivers and those who are non-English speaking.

Mixed anxiety/depression symptoms in a large cancer cohort: prevalence by cancer type.

BACKGROUND: Mixed anxiety/depression is associated with poorer psychosocial and treatment outcomes, worse quality of life, pooreradherence to treatment, slower recovery, greater suicide risk, and highercost-utilization. OBJECTIVE: This study aimed to examine the cancer-specific prevalence of these symptoms. METHOD: Cross-sectional anxiety and depression symptom data were collected with the Brief Symptom Inventory from adult outpatients presenting to a tertiary cancer center (N=8,265). RESULTS: Mixed anxiety/depression symptoms were seen in 12.4% of patients; overall depression symptoms in 18.3%, overall anxiety symptoms in 24.0%, pure anxiety symptoms in 11.7%, and pure depression symptoms in 6.0%; 70% had neither. Higher rates of mixed anxiety/depression symptoms were seen with stomach, pancreatic, head and neck, and lung cancers, but lower rates were seen in those with breast cancers. The mixed anxiety/depression phenotype occurs in two-thirds of depressed cancer patients. DISCUSSION: The fact that 70% of patients did not meet thresholds for depression or anxiety symptoms can be interpreted as a reflection of the resistance to developing a significant level of these symptoms. However, because stomach, pancreatic, head and neck, and lung cancers have higher levels of mixed anxiety/depression symptoms, the question can be raised as to whether these are associated with a more biological type of anxiety/depression (e.g., due to cytokine release) and whether this phenotype should be actively targeted because of its frequent occurrence in these cancers.

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.

A culturally targeted intervention to promote breast cancer screening among low-income women in East Baltimore, Maryland.

In Maryland, outreach initiatives have been unsuccessful in engaging low-income African American women in mammography screening. This study aimed to identify factors influencing screening rates for low-income African American women. Based on the Health Belief Model, a modified time series design was used to implement a culturally targeted intervention to promote a no-cost mammography-screening program. Data were collected from women 40 years of age and older on their history of mammography use and their knowledge and beliefs about breast cancer. A 50% screening rate was achieved among 119 eligible participants. Significant predictors of screening behaviors were perceived barriers, lack of insurance, and limited knowledge. This culturally targeted intervention resulted in an unprecedented screening rate among low-income African American women in Baltimore, Maryland.

Screening for psychologic distress in ambulatory cancer patients.

BACKGROUND: Based on evidence that psychologic distress often goes unrecognized although it is common among cancer patients, clinical practice guidelines recommend routine screening for distress. For this study, the authors sought to determine whether the single-item Distress Thermometer (DT) compared favorably with longer measures currently used to screen for distress. METHODS: Patients (n = 380) who were recruited from 5 sites completed the DT and identified the presence or absence of 34 problems using a standardized list. Participants also completed the 14-item Hospital Anxiety and Depression Scale (HADS) and an 18-item version of the Brief Symptom Inventory (BSI-18), both of which have established cutoff scores for identifying clinically significant distress. RESULTS: Receiver operating characteristic (ROC) curve analyses of DT scores yielded area under the curve estimates relative to the HADS cutoff score (0.80) and the BSI-18 cutoff scores (0.78) indicative of good overall accuracy. ROC analyses also showed that a DT cutoff score of 4 had optimal sensitivity and specificity relative to both the HADS and BSI-18 cutoff scores. Additional analyses indicated that, compared with patients who had DT scores < 4, patients who had DT scores > or = 4 were more likely to be women, have a poorer performance status, and report practical, family, emotional, and physical problems (P < or = 0.05). CONCLUSIONS: Findings confirm that the single-item DT compares favorably with longer measures used to screen for distress. A DT cutoff score of 4 yielded optimal sensitivity and specificity in a general cancer population relative to established cutoff scores on longer measures. The use of this cutoff score identified patients with a range of problems that were likely to reflect psychologic distress.

Assessment of perioperative psychological distress in patients undergoing radical cystectomy for bladder cancer.

PURPOSE: Despite a recent growth in our understanding of the impact of psychosocial factors on the outcome of patients with cancer there is still relatively little known about the effect of these issues on patients with genitourinary malignancies. We determined the prevalence of psychological distress in patients with bladder cancer prior to and following radical cystectomy. MATERIALS AND METHODS: A total of 74 consecutive patients with clinically organ confined bladder cancer were prospectively surveyed preoperatively using the Basic Symptom Inventory-18, a validated instrument that measures the psychological domains of general distress, anxiety, depression and somatization. Of the initial 74 patients 62 were available for postoperative assessment 1 month following cystectomy. Preoperative and postoperative distress scores were evaluated with respect to age, sex, marital status, type of surgical reconstruction and tumor stage. RESULTS: The preoperative prevalence of psychological distress in patients diagnosed with bladder cancer was 45% and it remained somewhat increased at 34% approximately 4 weeks after cystectomy. Demographic factors such as gender, age, and marital status were not significantly associated with the overall prevalence of distress. In the entire study group there was a statistically significant decrease in general distress (p = 0.028), depression (p = 0.034) and anxiety (p = 0.0004) from the preoperative to the postoperative assessments. Pathological stage was significantly associated with post-cystectomy anxiety (p = 0.040) and general distress (p = 0.042). CONCLUSIONS: Our findings indicate that a large proportion of patients with bladder cancer undergoing radical cystectomy experience psychological distress during the perioperative period. The identification of psychological distress in this population has the potential to influence health related quality of life as well as recovery in all individuals with bladder cancer.