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).

Patient-Reported Communication With Their Health Care Team About New Treatment Options for Chronic Lymphocytic Leukemia.

Chronic lymphocytic leukemia (CLL) often requires consideration of multiple treatment options. Shared decision-making (SDM) is important, given the availability of increasingly novel therapies; however, patient-provider treatment conversations vary. We examined relationships between patient-provider discussions of new CLL treatment options and sociodemographic, clinical, and patient-provider communication variables among 187 CLL patients enrolled in Cancer Support Community's Cancer Experience Registry.

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

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Cancer Patient Perspectives on Sharing of Medical Records and Mobile Device Data for Research Purposes.

Sharing data is critical to advancing science, improving health, and creating advances in the delivery of health care services. The value of sharing data for cancer research purposes is well established, and there are multiple initiatives under way that address this need. However, there has been less focus on cancer patient perspectives regarding the sharing of their health information for research purposes.

CancerSupportSource®-15+: development and evaluation of a short form of a distress screening program for cancer patients and survivors.

Purpose: CancerSupportSource® (CSS) is a distress screening program implemented at community-based organizations and hospitals nationwide. The 25-item CSS assesses distress across five domains, with capacity to screen for clinically significant depression and anxiety. This study examined psychometric properties of a shortened form to enhance screening opportunities when staff or patient burden considerations are significant.

Symptom Burden, Perceived Control, and Quality of Life Among Patients Living With Multiple Myeloma.

Background: New therapies for multiple myeloma (MM) have improved survival rates but often expose patients to heightened toxicities and prolonged treatment, leading to increasing complications and side effects. We evaluated the association between symptom burden, perceived control over illness, and quality of life (QoL) among a national sample of patients with MM.

Methods: For this observational, cross-sectional study, we used data from the Cancer Experience Registry research initiative to examine symptom- and functioning-related concerns among 289 patients with MM across the illness trajectory.

Randomized Trial of a Smartphone Mobile App to Improve Symptoms and Adherence to Oral Therapy for Cancer.

Background: Patients with cancer are increasingly prescribed oral therapies, bearing greater responsibility for self-management of treatment adherence and adverse events. We conducted a randomized trial to test the use of a smartphone mobile app to improve symptoms and adherence to oral cancer therapy.

Materials And Methods: From February 18, 2015, through December 31, 2016, 181 patients with diverse cancers who were prescribed oral therapy were randomized to receive either the smartphone mobile app or standard care.

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).

Unintentional weight loss, its associated burden, and perceived weight status in people with cancer.

Purpose: Unintentional weight loss (UWL) is a prevalent problem in people with cancer and is associated with poorer psychosocial outcomes. A gap exists in understanding whether and how perceived and/or weight status impacts experiences of UWL. Thus, we sought to examine subjective experiences of UWL in people with cancer, and whether perceived and/or actual weight status impacts these experiences.

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.

Perspectives of Patients With Cancer on the Quality-Adjusted Life Year as a Measure of Value in Healthcare.

Objectives: Healthcare expenditures in the United States continue to grow; to control costs, there has been a shift away from volume-focused care to value-based care. The incorporation of patient perspectives in the development of value-based healthcare is critical, yet research addressing this issue is limited. This study explores awareness and understanding of patients with cancer about the quality-adjusted life year (QALY), as well as their perspectives regarding the use of the QALY to measure value in healthcare.

Patient Experiences With Oral Chemotherapy: Adherence, Symptoms, and Quality of Life.

Background: Oral therapies are increasingly common in oncology care. However, data are lacking regarding the physical and psychologic symptoms patients experience, or how these factors relate to medication adherence and quality of life (QoL).

Materials And Methods: From December 2014 through August 2016, a total of 181 adult patients who were prescribed oral targeted therapy or chemotherapy enrolled in a randomized study of adherence and symptom management at Massachusetts General Hospital Cancer Center.

Feasibility and Acceptability of Distress Screening for Family Caregivers at a Cancer Surgery Center.

Objectives: To determine the feasibility and acceptability of a validated electronic distress screening program for cancer caregivers.

Sample & Setting: 17 informal caregivers presenting with a patient with cancer to an ambulatory cancer surgery center.

Methods & Variables: Caregivers completed the CancerSupportSource®-Caregiver screening and a brief semistructured interview concerning the screening.

A qualitative exploration of race-based differences in social support needs of diverse women with breast cancer on adjuvant therapy.

Objective: Social support is a critical component of breast cancer care and is associated with clinical and quality of life outcomes. Significant health disparities exist between Black and White women with breast cancer. Our study used qualitative methods to explore the social support needs of Black and White women with hormone receptor-positive breast cancer on adjuvant endocrine therapy (AET).

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.

Randomized Trial of a Web-Based Intervention to Address Barriers to Clinical Trials.

Purpose: Lack of knowledge and negative attitudes have been identified as barriers to participation in clinical trials by patients with cancer. We developed Preparatory Education About Clinical Trials (PRE-ACT), a theory-guided, Web-based, interactive computer program, to deliver tailored video educational content to patients in an effort to overcome barriers to considering clinical trials as a treatment option.

Patients And Methods: A prospective, randomized clinical trial compared PRE-ACT with a control condition that provided general clinical trials information produced by the National Cancer Institute (NCI) in text format.

Financial Concerns About Participation in Clinical Trials Among Patients With Cancer.

Purpose: The decision to enroll in a clinical trial is complex given the uncertain risks and benefits of new approaches. Many patients also have financial concerns. We sought to characterize the association between financial concerns and the quality of decision making about clinical trials.

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.