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), 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 ( = 459), (2) scale refinement ( = 623), and (3) confirmatory validation ( = 515).

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

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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.

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).

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.

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.

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.

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)).

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.

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.

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.

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.

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.

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.

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.

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).

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.

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.

"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.

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.

Detecting emotional expression in face-to-face and online breast cancer support groups.

Accurately detecting emotional expression in women with primary breast cancer participating in support groups may be important for therapists and researchers. In 2 small studies (N = 20 and N = 16), the authors examined whether video coding, human text coding, and automated text analysis provided consistent estimates of the level of emotional expression. In Study 1, the authors compared coding from videotapes and text transcripts of face-to-face groups.

When a parent has cancer: a community based program for school personnel.

Little information has been published on interventions designed to help school personnel respond to challenges faced by a family dealing with parental cancer. The current study describes the development and piloting of a program that educated school professionals about cancer's impact on families, and effective ways of supporting families facing parental cancer. The program was implemented at four sites; 244 participants completed self-report questionnaires before and after the program assessing knowledge and anxiety about helping families.

Self-report and linguistic indicators of emotional expression in narratives as predictors of adjustment to cancer.

Emotional expression and cognitive efforts to adapt to cancer have been linked to better psychological adjustment. However, little is known about the relationship between linguistic indicators of emotional and cognitive coping efforts and corresponding self-report measures of related constructs. In this study, we sought to evaluate the interrelationships between self-reports of emotional suppression and linguistic indicators of emotional and cognitive coping efforts in those living with cancer.

Online support groups for Parkinson's patients: a pilot study of effectiveness.

(A) Will PD patients participate in online, professionally led support groups? (B) What are their demographics characteristics and PD severity? (C) Are such groups beneficial? (D) Should patients be grouped for stage of disease? Depression and quality of life were assessed. Sixty-six people were assigned to a 20-week, professionally facilitated online support group. Participants were assigned to one of 2 group types based on patient similarity: homogeneous and heterogeneous.

Chemotherapy-induced alopecia: psychosocial impact and therapeutic approaches.

Despite advances in the treatment of many side effects associated with chemotherapy, alopecia remains an issue that is difficult to resolve. Chemotherapy-induced alopecia (CIA) is a condition that can have profound psychosocial and quality-of-life consequences, resulting in anxiety, depression, a negative body image, lowered self-esteem, and a reduced sense of well-being. Patients who fear CIA may sometimes select regimens with less favorable outcomes or may refuse treatment.