Valued Outcomes in the Cancer Experience (VOICE)™: Development and validation of a multidimensional measure of perceived control.

OBJECTIVE: Enhancing cancer patients' sense of control can positively impact psychological well-being. We developed and assessed the psychometric properties of Valued Outcomes in the Cancer Experience (VOICE)TM, a measure of patients' perceived control over key personal priorities within their cancer experience. METHODS: VOICE construction and testing were completed in three phases with separate participant samples: (1) item generation and initial item pool testing (N = 459), (2) scale refinement (N = 623), and (3) confirmatory validation (N = 515). RESULTS: A 21-item measure was developed that captures cancer patients' sense of control in seven key domains: (1) Purpose and Meaning, (2) Functional Capacity, (3) Longevity, (4) Quality Care, (5) Illness Knowledge, (6) Social Support, and (7) Financial Capability. VOICE demonstrated adequate internal consistency (full-scale α = 0.93; factor α = 0.67-0.89) and adequate to strong convergent and discriminatory validity. SIGNIFICANCE OF RESULTS: VOICE measures cancer patients' perceived control across a diverse range of personal priorities, creating a platform for elevating patient perspectives and identifying pathways to enhance patient well-being. VOICE is positioned to guide understanding of the patient experience and aid the development and evaluation of supportive care interventions to enhance well-being.

Cancer-related Fatigue Reported in Online Discussion Groups.

Fatigue is a prevalent cancer-related symptom that is difficult to communicate, define, and treat. To obtain robust descriptions of symptoms, participants were recruited into two online groups that consisted of their dialoguing together in an asynchronous, threaded discussion forum. Participants dialogued for 5 months and completed pre- and post-participation demographic data and symptom ratings. Survey data were described, and change scores were calculated. Excerpts from the dialogue were analyzed using phenomenological techniques. The 28 participants reported low symptoms that did not change significantly from pre- to post-participation. Phenomenological analysis revealed three themes: descriptions of "bone-sucking fatigue," a search for meaning or answers about the fatigue, and attempted remedies. Online support groups provide a venue for sharing symptom experiences, adding to existing knowledge about symptoms in survivors. These descriptions provide information that will aid in developing patient-centered interventions.

Correction to: Machine Learning for Identifying Emotional Expression in Text: Improving the Accuracy of Established Methods.

[This corrects the article PMC7467127.].

CancerSupportSource®: validation of a revised multi-dimensional distress screening program for cancer patients and survivors.

PURPOSE: To facilitate access to and provision of psychosocial care to cancer patients in the community, the Cancer Support Community (CSC) developed CancerSupportSource® (CSS), an evidence-based psychosocial distress screening program. The current study examined the psychometric properties and multi-dimensionality of a revised 25-item version of CSS, and evaluated the scale's ability to identify individuals at risk for clinically significant levels of depression and anxiety. METHODS: CSS development and validation were completed in multiple phases. Exploratory factor analysis was completed with 1436 individuals diagnosed with cancer to examine scale dimensionality, and nonparametric receiver operating characteristic (ROC) curve analyses were used to determine scoring thresholds for depression and anxiety risk scales. Internal consistency reliability and convergent and discriminant validity were also examined. Confirmatory factor analysis and intraclass correlation coefficients were subsequently calculated with a separate sample of 1167 individuals to verify the scale factor structure and examine test-retest reliability. RESULTS: Five factors were identified and confirmed: (1) emotional well-being, (2) symptom burden and impact, (3) body image and healthy lifestyle, (4) health care team communication, and (5) relationships and intimacy. Psychometric evaluation of the total scale and factors revealed strong internal consistency reliability, test-retest reliability, and convergent and divergent validity. Sensitivity of CSS 2-item depression and 2-item anxiety risk scales were .91 and .92, respectively. CONCLUSIONS: Results indicate that CancerSupportSource is a reliable, valid, multi-dimensional distress screening program with the capacity to screen for those at risk for clinically significant levels of depression and anxiety.

Digital literacy linked to engagement and psychological benefits among breast cancer survivors in Internet-based peer support groups.

OBJECTIVE: Internet-based peer support groups (ISGs) represent an innovative, scalable approach to addressing information and support needs of cancer survivors. However, this innovation may not benefit survivors equally due to population variance in digital literacy. This study examined how digital literacy influences level of engagement in and psychological benefits from participating in ISGs for breast cancer (N = 183). METHODS: Secondary analysis of data from a randomised trial of ISGs that included behavioural measures of engagement, subjective ratings and psychological distress symptoms. RESULTS: Digital literacy was positively related to education level (p = .005). Relative to women with high digital literacy, those with lower digital literacy were more likely to report difficulties using the ISG and to value the user's guide and facilitator assistance (all p's < .05). Digital literacy was negatively correlated with computer anxiety pre-intervention, distress before and after online chat during the intervention and post-intervention depressive symptoms (all p's < .05). CONCLUSION: Low digital literacy is associated with computer anxiety and barriers to ISG use, as well as distress during and after ISG use. Digital literacy must be taken into account when designing or delivering innovative digital interventions for cancer survivors.

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.

Machine Learning for Identifying Emotional Expression in Text: Improving the Accuracy of Established Methods.

Expression of emotion has been linked to numerous critical and beneficial aspects of human functioning. Accurately capturing emotional expression in text grows in relevance as people continue to spend more time in an online environment. The Linguistic Inquiry and Word Count (LIWC) is a commonly used program for the identification of many constructs, including emotional expression. In an earlier study (Bantum & Owen, 2009) LIWC was demonstrated to have good sensitivity yet poor positive predictive value. The goal of the current study was to create an automated machine learning technique to mimic manual coding. The sample included online support groups, cancer discussion boards, and transcripts from an expressive writing study, which resulted in 39,367 sentence-level coding decisions. In examining the entire sample the machine learning approach outperformed LIWC, in all categories outside of Sensitivity for negative emotion (LIWC Sensitivity = .85; Machine Learning Sensitivity = .41), although LIWC does not take into consideration prosocial emotion, such as affection, interest, and validation. LIWC performed significantly better than the machine learning approach when removing the prosocial emotions (p = <.0001). The sample over-represented examples of emotion that fit into the overarching category of positive emotion. Remaining work is needed to create more effective machine learning features for codes that are thought to be important emotionally but were not well represented in the sample (e.g., frustration, contempt, and belligerence), and Machine Learning could be a fruitful method for continued exploration.

Illustrating the Multi-Faceted Dimensions of Group Therapy and Support for Cancer Patients.

In cancer support groups, choice of therapy model, leadership style, and format can impact patients' experiences and outcomes. Methodologies that illustrate the complexity of patients' group experiences might aid in choosing group style, or testing therapeutic mechanisms. We used this naturalistic study as a beginning step to explore methods for comparing cancer group contexts by first modifying a group-experience survey to be cancer-specific (Group Experience Questionnaire (GEQ)). Hypothesizing that therapist-led (TL) would differ from non-therapist-led (NTL), we explored the GEQ's multiple dimensions. A total of 292 patients attending three types of groups completed it: 2 TL groups differing in therapy style ((1) Supportive-Expressive (SET); (2) The Wellness Community (TWC/CSC)); (3) a NTL group. Participants rated the importance of "Expressing True Feelings" and "Discussing Sexual Concerns" higher in TL than NTL groups and "Discussing Sexual Concerns" higher in SET than other groups. They rated "Developing a New Attitude" higher in TWC/CSC compared to NTL. In addition, we depict the constellation of group qualities using radar-charts to assist visualization. These charts facilitate a quick look at a therapy model's strengths and weaknesses. Using a measure like the GEQ and this visualization technique could enable health-service decision making about choice of therapy model to offer.

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

BACKGROUND: Qualitative studies have identified barriers to communication and informed decision making among breast cancer survivors making treatment decisions. The prevalence of these barriers is unknown. OBJECTIVE: To quantify the need for decision support among breast cancer survivors. METHODS: We 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. RESULTS: We 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. LIMITATIONS: The respondent sample skewed younger and had higher-stage cancer compared with all breast cancer survivors. Responses were subject to recall bias. CONCLUSIONS: Cancer 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.

Comparing standard versus prosocial internet support groups for patients with breast cancer: a randomized controlled trial of the helper therapy principle.

PURPOSE: Internet support group (ISG) members benefit from receiving social support and, according to the helper therapy principle, by providing support to others. To test the mental health benefits of providing support to others, this trial compared the efficacy of a standard ISG (S-ISG) and an enhanced prosocial ISG (P-ISG). METHODS: A two-armed randomized controlled trial with 1-month pretest and post-test assessments was conducted with women (N = 184) diagnosed in the past 36 months with nonmetastatic breast cancer who reported elevated anxiety or depression. Women were randomly assigned to either the S-ISG or P-ISG condition. Both conditions included six professionally facilitated live chat sessions (90-minute weekly sessions) and access to an asynchronous discussion board; P-ISG also included structured opportunities to help and encourage others. RESULTS: Relative to the S-ISG, participants in the P-ISG condition exhibited more supportive behaviors (emotional, informational, and companionate support), posted more messages that were other-focused and fewer that were self-focused, and expressed less negative emotion (P < .05). Relative to the S-ISG, participants in the P-ISG condition had a higher level of depression and anxiety symptoms after the intervention (P < .05). CONCLUSION: Despite the successful manipulation of supportive behaviors, the P-ISG did not produce better mental health outcomes in distressed survivors of breast cancer relative to an S-ISG. The prosocial manipulation may have inadvertently constrained women from expressing their needs openly, and thus, they may not have had their needs fully met in the group. Helping others may not be beneficial as a treatment for distressed survivors of breast cancer.

Understanding the experience of living with non-small-cell lung cancer (NSCLC): a qualitative study.

BACKGROUND: As non-small-cell lung cancer (NSCLC) treatments improve and patients live longer, it is important to develop interventions to help patients live fuller lives. We sought to identify key components of quality of life (QOL) in determining therapeutic decision making and overall value of life extension in patients with NSCLC. METHODS: Three focus groups (n = 16) and telephone interviews (n = 15) were conducted with NSCLC patients (N = 31) to explore symptoms considered important to QOL. A trade-off format was used to assess the value of life extension relative to QOL. Patients were asked to consider a hypothetical treatment option offering a modest (3 month) life extension. RESULTS: Patients' mean age was 61.6 years, 67.6% were women, 77.4% were white, and 48.4% had stage III/IV disease. In all, 68% of patients conceptualized emotions as symptoms of NSCLC. Key symptoms changed over time: Patients reported feeling shock and fear at diagnosis (74%), and feeling fear or loneliness during the beginning of therapy (55%). Additionally, patients who reported successfully connecting with other NSCLC patients (peers), support groups, and/or community members reported a positive shift in feelings (52%) as they continued therapy or moved into a posttherapy phase. Financially, 23% of patients reported being adversely affected by copayments, 36% by unexpected gaps in coverage, and 39% by other bills. Patients reported that the most important dimension driving their decision making about life-extending therapy was somatic (84%), followed by functional (32%), relational (23%), and emotional (10%) dimensions. LIMITATIONS: Study participants were likely to have received some education or support from the recruiting cancer advocacy and patient education/support organizations. In addition, participants were of a higher socioeconomic status than the average lung cancer patient population. CONCLUSIONS: Patients with NSCLC conflated emotional well-being after diagnosis with symptoms of their cancer and treatment toxicities. Somatic QOL concerns emerged ahead of functional, emotional, and relational QOL concerns as the dominant driver of therapeutic decision making. FUNDING: This study was funded by Daiichi Sankyo Inc.

Discriminatory power of a 25-item distress screening tool: a cross-sectional survey of 251 cancer survivors.

OBJECTIVE: The objective was to test the discriminatory power of a 25-item distress screening tool for use among cancer survivors. We used a measure of item discrimination to determine which items perform better than others at identifying those at greatest risk of distress. METHODS: A total of 251 members (90 % female, median age 57 years) of a community-based cancer support organization completed a web-based distress screening tool. Participants were asked to rate each of 25 items according to the question "Today, how concerned are you about…?" using a five-point Likert scale (0 not at all to 4 very seriously concerned). An overall distress score was calculated as the sum of items rated at or above two for somewhat concerned. Participants were categorized as high scorers (≥13, n = 59) and low scorers (≤4, n = 60). The item discrimination index (IDI) was calculated for each item as the percentage difference in concerned (somewhat or greater) responses between high and low scorers. RESULTS: Items with the greatest discriminatory power (IDI ≥0.8) were as follows: changes or disruptions in work, school or home life; feeling sad or depressed; feeling too tired to do the things you need or want to do; worrying about the future and what lies ahead; and feeling nervous or afraid. Conversely, items with the lowest IDI included considering taking your own life; eating and nutrition; tobacco or substance use; and transportation to treatment and appointments. CONCLUSION: The results highlight, among 25 items of a community-based distress screening tool, items with the greatest discriminatory power to identify cancer survivors with psychosocial distress. Results suggest targeted screening items to identify those most at risk for distress and priority areas for support services.

Evaluation of question-listing at the Cancer Support Community.

The 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 (p = 0.009) and anxiety (p = 0.005) and increased self-efficacy (p < 0.001). 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.

Demonstrating the psychometric properties of a problem-related distress screener in a community sample of 319 cancer survivors.

OBJECTIVE: The purpose was to test the psychometric properties of a 36-item community-based problem-related distress screening tool, among 319 cancer survivors recruited across 14 affiliates of the Cancer Support Community. METHODS: Internal reliability was estimated using Cronbach's alpha coefficient. Test-retest reliability was assessed using the intra-class correlation coefficient (ICC). Concurrent validity was determined by correlations with the Functional Assessment of Cancer Therapy-General Well-Being Scale (FACT-G), the Center for Epidemiologic Studies Depression Scale (CES-D), and the Distress Thermometer (DT) and receiver operating characteristic (ROC) curve analysis using the CES-D (≥16) and DT (≥4) as the criterion. Non-parametric analysis of variance was used to establish discriminant validity. RESULTS: The distress screener demonstrated high internal consistency (Cronbach's alpha = 0.91) and strong test-retest reliability (ICC ≥ 0.75). Summary scores of the distress screener correlated substantially with the FACT-G (R(2) = 0.58, p < 0.001), CES-D (R(2) = 0.48, p < 0.001), and DT (R(2) = 0.35, p < 0.001) indicating strong concurrent validity and were able to discriminate groups of clinical relevance. ROC analyses showed a cutoff score of 8 for problem items rated ≥3 had optimal sensitivity and specificity relative to the CES-D and DT. CONCLUSIONS: The distress screener shows strong psychometric properties and can be considered a valuable community-based instrument to screen for psychological distress related to social, emotional, physical, and other patient-related symptoms and problems. This study is the first to address the chasm between hospital and community-based screening by validating a community-based instrument and has begun to demonstrate the feasibility of screening in the community.

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.

BACKGROUND: The 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/DESIGN: A 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. DISCUSSION: This 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 REGISTRATION: ClinicalTrials.gov: NCT01396174.

Facilitating online support groups for cancer patients: the learning experience of psycho-oncology clinicians.

OBJECTIVE: Counsellor familiarity and engagement with technology-mediated communication represents an important factor in the ability to implement support programs to cancer patients. This study describes the experiences of a cohort of expert psycho-oncology counsellors who learned to facilitate online support groups (OSGs) and identifies the important elements of their learning experience that led to their engagement. PROCEDURE AND METHOD: Six psycho-oncology counsellors were trained to facilitate OSGs and later facilitated OSGs in their own practice context. They subsequently reflected on and discussed their experiences with OSGs over time: in a panel discussion within 6 months of training, and in two focus groups. A participatory method was used to describe and interpret key elements of the learning process. RESULTS AND DISCUSSION: Three themes of the counsellors' learning experience emerged: immersion in experiential learning, perceptions of clinical value and benefit, and overcoming challenges with adapted skills. Counsellors described components of their experiential learning: co-facilitating online cancer support groups with an expert, debriefing online, and participating in an online peer supervision group, as critical to their becoming engaged. Despite initial challenges, the counsellors learned new skills, and adapted known clinical skills, to the text-only environment. CONCLUSION: With appropriate training and practice over time, counsellors familiar with delivering face-to-face support groups to cancer patients became skilled and engaged in leading OSG's for cancer patients. Learning to facilitate OSGs shifted practice by significantly expanding the scope of services they were able to provide their patients and has implications for expanding access to support services.

Benefits and challenges experienced by professional facilitators of online support groups for cancer survivors.

OBJECTIVES: The primary aim of the study was to identify specific strengths and challenges of facilitating online cancer support groups relative to face-to-face groups through the use of deductive qualitative analysis. A secondary aim was to quantitatively validate the identified strengths and challenges. METHODS: To better understand how facilitators' roles in online support groups (OSGs) might differ from face-to-face (F2F) support groups, we compared the professional experiences of facilitators from both F2F and OSGs at The Wellness Community. Transcripts from online supervision sessions among OSG facilitators were analyzed using deductive qualitative analysis. A pool of items was developed to measure the primary themes derived from the qualitative analysis and administered to a sample of both F2F and online cancer support group facilitators. RESULTS: Strengths and weaknesses of online support group leaders could be captured in three categories: group processes, structural elements, and facilitator roles. Positive perceptions of group processes, structural elements, and facilitator roles were significantly higher among F2F facilitators than OSG facilitators. CONCLUSION: OSG facilitators described their online groups as helpful to participants and identified some aspects of online groups that promoted more active processing of cancer experiences among group participants. Additionally, they reported that learning how to facilitate an online group strengthened their skills in facilitating face-to-face groups. However, OSGs do appear to present significant challenges to facilitation. These challenges are discussed with particular attention given to ways in which online facilitators have developed "work-arounds" for addressing shortcomings of the internet as a medium for delivering psychosocial services.

"Other cancer survivors": the impact on family and caregivers.

Care for cancer patients has changed significantly over the past 10 years and in turn, the pressure on family caregivers of these patients is increasing. The trend toward community-based medical facilities, shorter hospital stays, and growing survivorship rates all contribute to the growing burden on family caregivers. To best address the needs of caregivers, the psychosocial oncology community must seek a deeper understanding of caregiver burden and develop strategies to manage the stress that is a result of this burden. Toward this goal, The Wellness Community in partnership with the National Coalition for Cancer Survivorship conducted and reported on a national survey of over 500 caregivers to look at the psychosocial impact of the disease on caregivers. The findings from this survey as well as data from The Wellness Community's online support group research were used to outline recommendations to better meet caregivers and patients.