An exploration of facilitators and barriers to patient navigator core functions with breast cancer patients: Implications for the development of a human-centered mHealth app.

Objectives: To understand the barriers to core functions and workflow among patient navigators (PN) who navigate people diagnosed with breast cancer (BC). To identify how a mobile health (mHealth) app could assist PNs in providing care to BC patients. Methods: This qualitative research study used purposive sampling to recruit stakeholders (N = 33) from January to August 2021. We conducted individual semi-structured interviews with PNs (n = 11), oncology care providers (n = 12), and BC patients (n = 10). We used conventional content analysis to analyze the interview data. Results: Participants identified the following sociotechnical systems barriers in PN workflows that negatively impact BC patient care: 1) resources, 2) insurance coverage, 3) communication challenges, and 4) impact of logistical tasks. Participants identified the user experience, app features, and interoperability customizations to enhance PNs' provision of patient care as important design elements to include in a mHealth app. Conclusion: Feedback from stakeholders provided valuable insights into key design considerations, functions, and content areas for developing a mHealth app for PN use in BC care delivery. Innovation: This is one of the first studies to incorporate the human-centered design and sociotechnical systems frameworks to understand barriers to PN workflow and provision of BC patient care across the cancer care continuum.

A pilot randomized study of a telephone-based cognitive-behavioral stress-management intervention to reduce distress in phase 1 oncology trial caregivers.

OBJECTIVES: Caregivers of adult phase 1 oncology trial patients experience high levels of distress and face barriers to in-person supportive care. The Phase 1 Caregiver LifeLine (P1CaLL) pilot study assessed the feasibility, acceptability, and general impact of an individual telephone-based cognitive behavioral stress-management (CBSM) intervention for caregivers of phase I oncology trial patients. METHODS: The pilot study involved 4 weekly adapted CBSM sessions followed by participant randomization to 4 weekly cognitive behavioral therapy sessions or metta-meditation sessions. A mixed-methods design used quantitative data from 23 caregivers and qualitative data from 5 caregivers to examine the feasibility and acceptability outcomes. Feasibility was determined using recruitment, retention, and assessment completion rates. Acceptability was assessed with self-reported satisfaction with program content and participation barriers. Baseline to post-intervention changes in caregiver distress and other psychosocial outcomes were assessed for the 8-session intervention. RESULTS: The enrollment rate was 45.3%, which demonstrated limited feasibility based on an a priori criterion enrollment rate of 50%. Participants completed an average of 4.9 sessions, with 9/25 (36%) completing all sessions and an 84% assessment completion rate. Intervention acceptability was high, and participants found the sessions helpful in managing stress related to the phase 1 oncology trial patient experience. Participants showed reductions in worry and isolation and stress. SIGNIFICANCE OF RESULTS: The P1CaLL study demonstrated adequate acceptability and limited feasibility and provided data on the general impact of the intervention on caregiver distress and other psychosocial outcomes. Caregivers of phase 1 oncology trial patients would benefit from supportive care services; a telephone-based intervention may have more utilization and thus make a larger impact.

Existential distress and meaning making among female breast cancer patients with cancer-related fertility concerns.

OBJECTIVES: The current study explored the impact of cancer-related fertility concerns on existential distress and meaning making among female breast cancer (BC) patients of childbearing age and assessed support needs. METHODS: The current study was embedded within a larger study. A seven-question online survey was administered to female BC participants to explore meaning and identity in their lives. Applied thematic analysis was used to analyze participants' written responses. RESULTS: A total of 98 participants completed the survey, the majority of whom identified as white, married or partnered, and employed full time and with stage I or II BC. More than 50% of the participants expressed a need for support from a counselor or support group during their cancer experience. Three subthemes emerged related to existential distress and cancer-related fertility concerns: (1) loss of womanhood: treatment-related physical changes impact on gender identity; (2) existential distress due to treatment decisions impacting fertility; and (3) shattered vision: cancer-related infertility impact on meaning and purpose. Four subthemes emerged related to meaning making with fertility-related existential concerns: (1) coping with loss of meaning, (2) re-evaluating priorities in life; (3) resilience to loss, and (4) persistent loss of meaning. SIGNIFICANCE OF RESULTS: Study results offer valuable insights into the experiences of female BC survivors' cancer-related fertility on existential distress and meaning making. Development of psychological interventions targeted to support this population to cope with existential distress due to cancer-related fertility concerns and meaning making are needed to improve the quality of life of this population.

Impacts of breast cancer and chemotherapy on gut microbiome, cognitive functioning, and mood relative to healthy controls.

Women diagnosed with breast cancer undergoing chemotherapy experience cognitive impairment, symptoms of anxiety and depression, and physical side effects including disruption in the diversity and community composition of the gut microbiome. To date, there is limited research exploring the associations among these specific challenges. The present cross-sectional study explored the associations of self-reported cognitive functioning, depression, and anxiety symptoms, and gut microbiome diversity and community composition in women who were diagnosed with and undergoing chemotherapy treatment for breast cancer (BC) compared to cancer-free healthy controls (HC). The BC group displayed higher rates of cognitive dysfunction (p < 0.001) and depressive symptoms (p < 0.05) relative to HC. There was a significant difference in microbiome community composition between BC and HC, particularly characterized by a decreased relative abundance of the mucin-degrading genus Akkermansia in BC compared to HC (p < 0.05). Association models identified significant associations among group, cognitive, depression, and microbiome variables (p < 0.001). Overall, the study identified that BC participants experienced significant differences in self-reported cognitive functioning, self-reported depression symptoms, microbiome community composition, and mucin-degrading bacteria of the gut-mucosal barrier, relative to HC. The present study is consistent with the hypothesis that gut microbiome community composition impacts a woman's experience with breast cancer and treatment suggesting that microbiome-based interventions have potential for improving quality of life outcomes in individuals with breast cancer.

Guided imagery for treatment (GIFT): protocol of a pilot trial of guided imagery versus treatment as usual to address radiotherapy-related distress in head and neck cancer.

BACKGROUND: Cancers of the head and neck region are associated with high symptom burden and elevated levels of psychological distress. Radiotherapy (RT) is a common treatment for patients with head and neck cancer (HNC) that is associated with psychological distress related to the immobilizing nature of the treatment, frequency of treatment delivery, and side effects. Guided imagery is a relaxation technique that is beneficial in reducing psychological distress in patients with other cancer diagnoses but has not been studied in this patient population. The purpose of this study is to evaluate the feasibility and acceptability of a brief guided imagery intervention (guided imagery for treatment, GIFT) to reduce RT-related anxiety and depression in patients with HNC relative to treatment as usual (TAU). METHODS: Patients with HNC planning to receive RT will be recruited to participate in a randomized controlled trial evaluating a brief, two-session guided imagery intervention (GIFT) relative to TAU alone. Primary aims include acceptability and feasibility evaluated through quantitative and qualitative methods. Measures of anxiety and depression, symptom burden, health-related quality of life, and anxiolytic medication use will be collected at baseline, during treatment, and at 1-month follow-up. DISCUSSION: There are no published interventions of guided imagery for anxiety and depression in patients with HNC despite its efficacy in other populations of patients with cancer. This proposed project evaluates the feasibility and acceptability of an intervention that has the potential to reduce psychological distress in a vulnerable population. Additionally, we will preliminarily examine the impact of behavioral intervention on psychological distress and the use of anxiolytic medication, a novel area of study. TRIAL REGISTRATION: Clinicaltrials.gov NCT03662698 ; registered on 9/6/2018.

Social and Cultural Challenges in Caring for Latinx Individuals With Kidney Failure in Urban Settings.

Importance: Latinx individuals with end-stage kidney disease (ESKD) constitute 19% of US patients receiving in-center scheduled hemodialysis. Compared with non-Latinx White patients, Latinx individuals often face poor economic, environmental, and living circumstances. The challenges for health care professionals engendered by these circumstances when Latinx individuals present with ESKD and possible solutions have not been well described. Objective: To examine the perceptions of interdisciplinary health care professionals who work in dialysis centers in urban settings with large racial and ethnic minority populations about how social challenges affect the care of Latinx patients with ESKD. Design, Setting, and Participants: This qualitative study administered semistructured interviews of interdisciplinary health care professionals at 4 urban dialysis centers in Denver, Colorado, from April 1 to June 30, 2019. Interviews were audio recorded, transcribed verbatim, and analyzed using thematic analysis. Main Outcomes and Measures: Themes and subthemes of barriers to care. Results: Thirty interdisciplinary dialysis center health care professionals (23 [77%] female; mean [SD] age, 42.0 [11.6] years) participated. Four themes were identified. The first 3 themes and their respective subthemes (in parentheses) describe challenges to kidney care: compromised quality of care attributable to communication and cultural barriers (language interpretation by telephone, in-person language interpretation, burden of ad hoc interpretation, low-quality health care, lack of language- and culturally concordant materials, and health literacy levels), difficulty with health care access (unreliable transportation, economic instability, and loss of insurance benefits), and concerns about patient psychosocial well-being (social isolation, hopelessness, stigma of illness, and balancing personal social challenges). The fourth theme describes solutions to improve care (culturally responsive care, patient empowerment and activation, supporting primary caregivers, and peer support with navigation of the health care system). Conclusions and Relevance: This study's findings suggest that dialysis center policies are needed that require high-quality language interpretation and the availability of culturally concordant educational materials. Community-based interventions that improve patient activation and provide peer support as well as culturally responsive care may improve the care of Latinx patients with ESKD receiving in-center scheduled hemodialysis.

A pilot study of mobilized intervention to help caregivers of oncology patients manage distress.

OBJECTIVE: Caregivers of patients with advanced cancer experience significant anxiety, depression, and distress. Caregivers have barriers to accessing in-person treatment to manage stress. Technology allows for the dissemination of evidence-based interventions in a convenient way. This study examined usage rates of Pep-Pal (an evidence-based mobilized intervention to help caregivers of patients with advanced cancer manage distress) and estimates of efficacy on anxiety, depression, stress, and sexual dysfunction. METHODS: Fifty-six primary caregivers of patients with advanced cancer were recruited through oncology clinics and randomized to either Pep-Pal (a mobilized psychoeducation and skills-based intervention for caregivers, n = 26) or treatment as usual (TAU; n = 30). All were screened for moderate anxiety on the Hospital Anxiety and Depression Scale-Anxiety screening assessment (A ≥ 8) at baseline. RESULTS: Participants randomized to Pep-Pal experienced greater reductions in perceived stress (PSS; F = 3.91, p = .05), greater increases in ability to learn and use stress management skills (F = 6.16, p = 0.01), and greater increases in sexual function (women only; F = 5.07, p = 0.03) compared to participants in TAU. Of Pep-Pal participants, only 10 (38.5%) watched at least 7/9 full-length sessions. The a priori hypothesis and criterion that participants would watch at least 75% full-length sessions were not met. CONCLUSIONS: A brief, easily disseminated mobile intervention showed poor adherence, but had limited estimates of efficacy for secondary outcomes; perceived stress, learning stress management skills, and sexual functioning (women only). Future directions are discussed.

The Experience of Primary Caregivers of Undocumented Immigrants with End-Stage Kidney Disease that Rely on Emergency-Only Hemodialysis.

BACKGROUND: Undocumented immigrants with end-stage kidney disease (ESKD) who rely on emergency-only hemodialysis (dialysis only after an emergency department evaluation) face psychosocial distress. Emergency-only hemodialysis (EOHD) is likely burdensome for primary caregivers as well. OBJECTIVE: To understand the experience of primary caregivers of undocumented immigrants with ESKD who rely on emergency-only hemodialysis. DESIGN, SETTING, AND PARTICIPANTS: A qualitative, semi-structured interview study to assess the experiences of primary caregivers of undocumented immigrants with ESKD at a safety-net hospital in Denver, Colorado from June 28 to November 15, 2018. Applied thematic analysis was used to analyze interviews. MAIN OUTCOMES AND MEASURES: Themes and subthemes. RESULTS: Twenty primary caregiver participants had a mean (SD) age of 46 (17), 13 (65%) were female, 7 (35%) were in an adult child caregiver role, and 13 (65%) were spouses. Five themes and 17 subthemes (in parentheses) were identified: (1) Caregiver role (providing emotional, physical, and economic support, advocacy and care navigation), (2) Caregiver burden (anxiety related to patient and personal death, emotional exhaustion and personal illness, struggle with finances, self-care and redefining relationship), (3) Unpredictable EOHD (acute episodes of illness that trigger emergency, stress when patient is denied dialysis, impact on work and sleep, and emotional relief after a session of EOHD), (4) Effect on children (dropping out or missing school, psychosocial distress, children assuming caregiver responsibilities, and juggling multi-generational caregiving of children), (5) Faith and appreciation (comfort in God and appreciation of healthcare). CONCLUSIONS AND RELEVANCE: Caregivers of undocumented immigrants with ESKD who rely upon EOHD experience caregiver burden and distress. The impact of EOHD on caregivers should be considered when assessing the consequences of excluding undocumented immigrants from public insurance programs.

Project reach: Piloting a risk-tailored smoking cessation intervention for lung screening.

The purpose of this study was to explore the feasibility, acceptability, and efficacy of a telephone-based smoking cessation intervention for lung screening patients. Participants (N = 39) were enrolled in a single-arm pilot study of a four-session telephone-based intervention. Self-report measures were completed at baseline, post-intervention, and 3-month follow-up. Participants were long-term smokers; 62 percent were not motivated to quit. Twenty-three percent attempted quitting, 29 percent decreased their smoking, and 11 percent reported abstinence. Confidence increased (p < .001) and there were trends toward increased importance (p = .09) and comparative disease risk (p = .02). This intervention was acceptable and associated with improvements in smoking-related beliefs and behaviors.

Impact of a Mobilized Stress Management Program (Pep-Pal) for Caregivers of Oncology Patients: Mixed-Methods Study.

BACKGROUND: Caregivers of patients with advanced diseases are known to have high levels of distress, including depression and anxiety. Recent research has focused on recognizing caregivers in need of psychosocial support to help them manage their distress. Evidenced-based technological interventions have the potential to aid caregivers in managing distress. OBJECTIVE: The objective of our study was to describe caregiver perceptions of the usability and acceptability, and their suggestions for future adaptations, of a mobilized psychoeducation and skills-based intervention. METHODS: This study was a part of a larger trial of a mobilized psychoeducation and skills-based intervention (Psychoeducation and Skills-Based Mobilized Intervention [Pep-Pal]) for caregivers of patients with advanced illness. This substudy used a mixed-methods analysis of quantitative data from all 26 intervention participants and qualitative data from 14 intervention caregivers who completed the Pep-Pal intervention. The qualitative semistructured individual interviews, which we conducted within the first 4 weeks after participants completed the intervention, assessed the acceptability and usability of Pep-Pal. Additionally, the qualitative interviews provided contextual evidence of how the intervention was helpful to interviewees in unanticipated ways. We conducted applied thematic analysis via independent review of transcripts to extract salient themes. RESULTS: Overall, caregivers of patients with advanced cancer deemed Pep-Pal to be acceptable in all Web-based sessions except for Improving Intimacy. Caregivers perceived the program to be of use across the areas they needed and in others that they had not anticipated. Caregiver recommendations of key changes for the program were to include more variety in caregiver actors in sessions, change the title of Improving Intimacy to Improving Relationships, provide an audio-only option in addition to video, and change the format of the mobilized website program to a stand-alone mobile app. CONCLUSIONS: The valuable feedback in key areas from individual interviews will be integrated into the final version of Pep-Pal that will be tested in a fully powered randomized clinical trial. TRIAL REGISTRATION: ClinicalTrials.gov NCT03002896; https://clinicaltrials.gov/ct2/show/NCT03002896 (Archived by WebCite at http://www.webcitation.org/76eThwaei).

A closer lens: Cancer survivors' supportive intervention preferences and interventions received.

OBJECTIVE: Cancer survivor preferences for formal interventions designed to provide psychological support remain relatively unknown. To address this gap, we evaluated cancer survivors' preferences for psychological intervention, whom they preferred to recommend such intervention, and how their preferences compared with what they currently received. METHODS: US cancer survivors (n = 345) who were at least 2 months post-treatment for diverse forms of cancer were recruited online to complete a survey study. RESULTS: Based on Wilcoxon signed-rank tests to distinguish among ranked preferences, cancer survivors rated individual professional counseling as their most-preferred form of psychological intervention (among 6 choices), p < .001, followed by professionally led cancer support groups and individual peer counseling. Anti-depressant or other psychiatric medication represented their least-preferred intervention, ps < .001, but was the one they were most likely to currently receive. Preference for individual professional counseling over psychiatric medication was evident even among the subgroups of cancer survivors screening positively for probable anxiety disorder (n = 188) or major depression (n = 137), ps < .001. Cancer survivors most preferred to learn about psychological interventions from their medical oncologist, p < .001, followed by primary care physician, cancer nurse, or another cancer survivor; they least preferred to learn from a social worker or on their own, ps < .001. CONCLUSIONS: Cancer survivors reported significant unmet need for psychological intervention, preference for non-pharmacological forms of such support, and a gap between their preferred forms of support and what they currently receive.

Using Mechanical Turk for research on cancer survivors.

OBJECTIVE: The successful recruitment and study of cancer survivors within psycho-oncology research can be challenging, time-consuming, and expensive, particularly for key subgroups such as young adult cancer survivors. Online crowdsourcing platforms offer a potential solution that has not yet been investigated with regard to cancer populations. The current study assessed the presence of cancer survivors on Amazon's Mechanical Turk (MTurk) and the feasibility of using MTurk as an efficient, cost-effective, and reliable psycho-oncology recruitment and research platform. METHODS: During a <4-month period, cancer survivors living in the United States were recruited on MTurk to complete two assessments, spaced 1 week apart, relating to psychosocial and cancer-related functioning. The reliability and validity of responses were investigated. RESULTS: Within a <4-month period, 464 self-identified cancer survivors on MTurk consented to and completed an online assessment. The vast majority (79.09%) provided reliable and valid study data according to multiple indices. The sample was highly diverse in terms of U.S. geography, socioeconomic status, and cancer type, and reflected a particularly strong presence of distressed and young adult cancer survivors (median age = 36 years). A majority of participants (58.19%) responded to a second survey sent one week later. CONCLUSIONS: Online crowdsourcing represents a feasible, efficient, and cost-effective recruitment and research platform for cancer survivors, particularly for young adult cancer survivors and those with significant distress. We discuss remaining challenges and future recommendations. Copyright © 2016 John Wiley & Sons, Ltd.