Mitch Golant

From Distress Guidelines to Developing Models of Psychosocial Care: Current Best Practices

Psychological distress has been recognized as having a significant effect upon cognitive and emotional functioning, quality of life, and in some populations increased costs of care. Screening for distress and provision of psychosocial care in oncology treatment settings has been identified as a future accreditation standard by the American College of Surgeons Commission on Cancer (CoC). Because there are few available models of programs of distress screening and referral to inform oncology social workers and other members of the psychosocial support team with planning their own programs, this article seeks to provide exemplars of best practices that are currently in place in four different settings where psychosocial support is provided to people living with cancer and their families. Each program will provide an overview of how it was successfully established and its contribution toward evolving evidence-informed best practices.

Standard Versus Prosocial Online Support Groups for Distressed Breast Cancer Survivors: A Randomized Controlled Trial

BackgroundThe Internet can increase access to psychosocial care for breast cancer survivors through online support groups. This study will test a novel prosocial online group that emphasizes both opportunities for getting and giving help. Based on the helper therapy principle, it is hypothesized that the addition of structured helping opportunities and coaching on how to help others online will increase the psychological benefits of a standard online group.Methods/DesignA two-armed randomized controlled trial with pretest and posttest. Non-metastatic breast cancer survivors with elevated psychological distress will be randomized to either a standard facilitated online group or to a prosocial facilitated online group, which combines online exchanges of support with structured helping opportunities (blogging, breast cancer outreach) and coaching on how best to give support to others. Validated and reliable measures will be administered to women approximately one month before and after the interventions. Self-esteem, positive affect, and sense of belonging will be tested as potential mediators of the primary outcomes of depressive/anxious symptoms and sense of purpose in life.DiscussionThis study will test an innovative approach to maximizing the psychological benefits of cancer online support groups. The theory-based prosocial online support group intervention model is sustainable, because it can be implemented by private non-profit or other organizations, such as cancer centers, which mostly offer face-to-face support groups with limited patient reach.Trial RegistrationClinicalTrials.gov: NCT01396174

Evaluation of question-listing at the Cancer Support Community

ABSTRACTThe Cancer Support Community (CSC) provides psychosocial support to people facing cancer in community settings. The purpose of this study was to evaluate the compatibility, effectiveness, and fidelity of the Situation–Choices–Objectives–People–Evaluation–Decisions (SCOPED) question-listing intervention at three CSC sites. Between August 2008 and August 2011, the Program Director at each CSC site implemented question-listing, while measuring patient distress, anxiety, and self-efficacy before and after each intervention. We analyzed the quantitative results using unadjusted statistical tests and reviewed qualitative comments by patients and the case notes of Program Directors to assess compatibility and fidelity. Program Directors implemented question-listing with 77 blood cancer patients. Patients reported decreased distress (pu2009=u20090.009) and anxiety (pu2009=u20090.005) and increased self-efficacy (pu2009<u20090.001). Patients and Program Directors endorsed the intervention as compatible with CSC’s mission and approach and feasible to implement with high fidelity. CSC effectively translated SCOPED question-listing into practice in the context of its community-based psychosocial support services at three sites.

The need for decision and communication aids: a survey of breast cancer survivors.

BACKGROUNDnQualitative studies have identified barriers to communication and informed decision making among breast cancer survivors making treatment decisions. The prevalence of these barriers is unknown.nnnOBJECTIVEnTo quantify the need for decision support among breast cancer survivors.nnnMETHODSnWe surveyed 2,521 breast cancer survivors participating in an online registry hosted by the Cancer Support Community to find out what proportion of breast cancer patients: made decisions during their first visit with a specialist; received satisfactory information before that visit; asked questions and received responses; and endorsed expanded use of decision support.nnnRESULTSnWe received 1,017 (41%) responses and analyzed 917 surveys from women who lived in the United States. Most of the respondents recalled making treatment decisions during their first visit (52%). A minority (14%) received information before the first specialist visit. At least 25% of respondents rated their satisfaction below 7 on a scale of 10 for decision-making, information, and questions asked and answered. Respondents endorsed the need for assistance with obtaining information, listing questions, taking notes, and making audio-recordings of visits.nnnLIMITATIONSnThe respondent sample skewed younger and had higher-stage cancer compared with all breast cancer survivors. Responses were subject to recall bias.nnnCONCLUSIONSnCancer survivors expressed gaps in their care with respect to reviewing information, asking questions, obtaining answers, and making decisions. Implementing decision and communication aids immediately upon diagnosis, when treatment decisions are being made, would address these gaps.

Impact of primary care provider knowledge, attitudes, and beliefs about cancer clinical trials: implications for referral, education and advocacy.

Primary Care Providers (PCPs) can be instrumental in helping to prepare patients for referral to cancer treatment. It has been suggested that PCPs can have an important impact on priming patients about the possibility of receiving care within a cancer treatment clinical trial (CCT). However, little is understood about how to effectively engage primary care providers in educating patients about trials. Data were collected as part of two qualitative research projects about primary care providers’ role in referral to treatment and to CCTs. Participants were 27 PCPs who agreed to take part in qualitative face-to-face or telephone interviews and serve predominantly underserved, minority populations. Interviews identified a number of factors influencing referral to oncologists, including patients’ insurance coverage, location and proximity to treatment facilities, and the strength of ongoing relationships with and/or previous experience with a specialist. PCPs overwhelmingly expressed disinterest in discussing any treatment options, including CCTs. Misconceptions about quality of care received through trials were also common, presenting a deterrent to discussion. PCPs need targeted, evidence-based educational interventions to appropriately address their concerns about cancer clinical trials, enhance provider communication skills, and alter patient referral behavior. Steps must also be taken to strengthen communication between oncologists and referring PCPs.

Reducing informal caregiver burden in cancer: evidence-based programs in practice

Caring for people with cancer can be a burdensome and emotionally straining experience. Without adequate psychosocial support, distressed caregivers are at risk for psychiatric and medical morbidity, which can adversely affect patient outcomes. Although there is a tremendous need to provide effective and timely supportive care services for cancer caregivers, few community or clinically based services exist and the needs of these essential caregivers are profoundly underserved. This article describes three existing evidence-based programs and tools that address the needs of family caregivers of cancer patients: (a) the FOCUS Program, tested for efficacy in prior randomized clinical trials and implemented in community settings by agency staff; (b) the Program for the Study of Cancer Caregivers at Memorial Sloan Kettering Cancer Center (MSKCC), which addresses the needs of caregivers in a large health care system; and (c) CancerSupportSource®-Caregiver, an online platform for distress screening and referral developed by the Cancer Support Community to assess and address caregivers needs. We also describe next steps related to broader dissemination for practitioners considering how best to support cancer caregivers now and in the future. Although each evidence-based program or tool represents a unique approach to supporting caregivers, together these approaches allow for a greater likelihood of meeting caregiver needs across a variety of contexts. Collaboration within and across organizations allowed for the development and effective implementation of each of the described initiatives.

Developing a community-based screening instrument that measures problem-related distress.

9092 Background: The IOM and NCCN recognized the importance of psychosocial domains as essential to quality cancer care. Screening has been recommended as an efficient way to identify symptoms and problems, communicate patient concerns to busy physicians during the clinical encounter, and standardize timely triage to available resources. Yet, screening rarely occurs in community cancer centers where 85% of cancer care occurs. The Cancer Support Community and City of Hope (COH) collaborated to evaluate the validity and reliability of a screening instrument that measures problem-related distress in cancer patients as part of a community-based screening program.nnnMETHODSn350 participants completed a pen-and-paper version of the COH 53-item problem-related distress screening tool at 10 US sites. Each item asked 1) How much of a problem is this for you? with a 5-item response scale (i.e., Not a Problem to Very Severe) and 2) How can we best work with you on this problem? Using statistical and theoretical criteria, 19 items were dropped, 6 items revised and 2 items added. The 36-item community version of the screening instrument was administered to 319 participants at 14 sites with the Functional Assessment of Cancer Therapy - General (FACT-G), the Center for Epidemiologic Studies Depression Scale (CES-D), and the Distress Thermometer. Among a subsample (n=101), the 36-item screening instrument was administered twice to measure test-retest reliability.nnnRESULTSnA summary score of the 36 screening items correlated moderately with the FACT-G (R=-0.77, p<0.001), the CES-D (R=0.73, p<0.001) and the Distress Thermometer (R=0.60, p<0.001). The intraclass correlation coefficient was ≥0.75 for 35 of the 36 screening items.nnnCONCLUSIONSnThese findings suggest the 36-item community screening tool is valid and reliable. Future research is needed to test if this instrument can enhance physician-patient interaction by rapidly identifying patients who are at risk for poorer outcomes without psychosocial intervention.