Understanding Barriers and Facilitators to High-Quality Cancer Care Among Veterans With Lung Cancer: A Qualitative Study.

PURPOSE: Veteran populations have higher lung cancer incidence and worse overall survival compared with non-Veteran populations. Although recent clinical advancements have reduced lung cancer death rates, these advances are not routinely received among Veteran populations because of multilevel factors, including Veterans' complex comorbidities, limited health literacy, and other economic and social disadvantages. This study aimed to assess Veterans' perspectives regarding their lung cancer care with a specific focus on identifying modifiable barriers to evidence-based care delivery. METHODS: We conducted 1:1 semistructured interviews with 24 Veterans diagnosed with lung cancer at the Veterans Affairs Palo Alto Health Care System. All interviews were recorded, transcribed, and analyzed using the constant comparative method of qualitative analysis. RESULTS: Four themes emerged. These included (1) social and economic disadvantages can prevent routine delivery of evidence-based cancer care; (2) fragmented care contributes to worsening patient mental and emotional well-being; (3) lack of health system interventions to address limited health literacy inhibits patient engagement in shared decision making regarding diagnosis, genomic and molecular testing, targeted and other treatments, and end-of-life care; and (4) deep appreciation for care and VA trustworthiness facilitates adherence to cancer care recommendations. CONCLUSION: This study revealed critical gaps in lung cancer care delivery and the role of institution-engendered trust in overcoming barriers in the VA system. Targeted solutions should address the identified barriers to routine, evidence-based lung cancer care delivery among Veterans.

Health Care Professionals' Perspectives on Implementation, Adoption, and Maintenance of a Community Health Worker-Led Advance Care Planning and Cancer Symptom Screening Intervention: A Qualitative Study.

PURPOSE: Advance care planning (ACP) and symptom screening are nationally recommended for all patients with advanced stages of cancer. Yet, routine delivery of such care remains challenging because of multilevel barriers. We hired and trained community health workers (CHWs) to assist with delivery of these services across the United States. The aim of this study was to explore health care professionals' perspectives on barriers and facilitators to these team-based approaches. METHODS: We conducted semistructured interviews with 44 health care professionals in 21 cancer clinics in seven US cities using the Reach, Effectiveness, Adoption, Implementation, and Maintenance framework. We recorded, transcribed, and analyzed interviews using the framework analysis approach. RESULTS: Participants noted barriers and facilitators to implementation, adoption, and maintenance of CHW-led ACP and symptom management approaches. Participants were initially skeptical; however, they noted a positive shift in their views over time because of personal experiences and effectiveness in their clinics. There was significant variation in adoption with some using a prescriptive top-down approach and others a bottom-up approach. Most agreed that the combination of top-down and bottom-up approaches would be most efficient and effective for promoting team-based care. All participants discussed implementation and provided suggestions for maintenance including organizational support, leadership, and CHW retention. CONCLUSION: CHW-led ACP and proactive symptom management interventions are effective and accepted by cancer care professionals at scale. Tailoring on the basis of organization and local contexts is required to ensure successful adoption, implementation, and maintenance of these effective team-based care delivery approaches.

Effect of a Community Health Worker Intervention on Acute Care Use, Advance Care Planning, and Patient-Reported Outcomes Among Adults With Advanced Stages of Cancer: A Randomized Clinical Trial.

Importance: Deficiencies in advance care planning and symptom management are associated with avoidable acute care use among patients with cancer. Community health worker (CHW)-led approaches may be an approach to reduce acute care use but remain untested in community settings. Objective: To determine whether a CHW-led advance care planning and symptom screening intervention can reduce acute care use more than usual care in a community setting. Design, Setting, and Participants: This randomized clinical trial was conducted among patients with newly diagnosed advanced-stage or recurrent solid and hematologic cancers from August 8, 2017, through November 30, 2021. Data analysis was performed November 30, 2021, through January 1, 2022, by intention to treat. Interventions: Participants were randomized 1:1 to usual care (control group) or usual care with the 6-month CHW-led intervention (intervention group). Main Outcomes and Measures: The primary outcome was acute care use. Secondary outcomes included advance care planning documentation, supportive care use, patient-reported outcomes, survival, and end-of-life care use. Results: Among 128 participants, median (range) age was 67 (19-89) years; 61 (47.7%) were female; and 2 (1.6%) were American Indian or Alaska Native, 11 (8.6%) were Asian, 5 (3.9%) were Black, 23 (18.0%) were Hispanic or Latino, 2 (1.6%) were of mixed race, 2 (1.6%) were Native Hawaiian or other Pacific Islander, 86 (67.2%) were White, and 20 (15.6%) did not report race. Intervention participants had 62% lower risk of acute care use than the control (hazard ratio, 0.38; 95% CI, 0.19-0.76) within 6 months. At 12 months, intervention participants had 17% lower odds of acute care use (odds ratio [OR], 0.83; 95% CI, 0.69-0.98), 8 times the odds of advance care planning documentation (OR, 7.18; 95% CI, 2.85-18.13), 4 times the odds of palliative care (OR, 4.46; 95% CI, 1.88-10.55), nearly double the odds of hospice (OR, 1.83; 95% CI, 1.16-2.88), and nearly double the odds of improved mental and emotional health from enrollment to 6 and 12 months postenrollment (OR, 1.82; 95% CI, 1.03-3.28; and OR, 2.20; 95% CI, 1.04-4.65, respectively) than the control. There were no differences in the death (control, 26 [40.6%] vs intervention, 32 [50.0%]). Fewer intervention participants had acute care use (0 vs 6 [23.1%]) in the month before death than the control. Conclusions and Relevance: In this randomized clinical trial, integration of a CHW-led intervention into cancer care reduced acute care use and is one approach to improve cancer care delivery for patients with advanced stages of disease in community settings. Trial Registration: ClinicalTrials.gov Identifier: NCT03154190.

Living Kidney Donation Stories and Advice Shared Through a Digital Storytelling Library: A Qualitative Thematic Analysis.

Rationale & Objective: Despite the development of numerous educational interventions, there has been limited change in actual living donor kidney transplant (LDKT) rates over time. New strategies, such as the inclusion of patient stories in patient education, show promise to inspire more people to donate kidneys. This study identified the challenges faced, coping strategies used, and advice shared by transplant donors and recipients. Study Design: Qualitative thematic analysis. Setting & Participants: One hundred eighteen storytellers across the United States and Canada, including 82 living donors and 36 kidney recipients of living donor transplants who shared their stories on the Living Donation Storytelling Project (explorelivingdonation.org), an online digital storytelling platform and library. Analytical Approach: A poststorytelling survey assessed participant demographics. Two coders conducted tool-assisted (Dedoose v.8.3.35) thematic analysis on narrative storytelling videos and transcripts. Results: Storytellers were predominantly White (79/118, 66.95%), female (76/118, 64.41%), and non-Hispanic (109/118, 92.37%) with college/vocational education (50/118, 42.37%). Common themes were found related to living donation challenges for donors and recipients (eg, the fear of not being able to complete the LDKT process, of unsupportive family or rejected donation requests, and of unknown or adverse surgical outcomes and graft rejection) and recommended coping strategies (eg, seeking LDKT information, using prayer, and relying on a support network). Recipients provided advice that included being proactive and staying hopeful, whereas donors recommended seeking support, researching LDKT to comprehensively learn, and building a community of support. Limitations: Limited representation of diverse demographics. Conclusions: Although supplementary to traditional education about LDKT, digital storytelling provides a source of peer support that can enhance the experience of donors and recipients and encourage autonomy and self-management after transplant.

Stressors and Information-Seeking by Dialysis and Transplant Patients During COVID-19, Reported on a Telephone Hotline: A Mixed-Methods Study.

Rationale & Objective: In early 2020, we activated a telephone hotline, the coronavirus disease 2019 (COVID-19) Kidney or Transplant Listening and Resource Center, to learn more about the impact of the COVID-19 pandemic on the stress and information-seeking behaviors of dialysis and transplant patients. Study Design: A mixed-methods study including semi-structured, qualitative interviews probing about emotional, health, and financial challenges experienced and quantitative surveys assessing depression and anxiety levels and information-seeking behaviors. Setting & Participants: 99 participants (28 dialysis patients; 71 transplant patients), varying by race and ethnicity (Hispanic, 25.3%; White, 23.2%; Asian, 24.2%; Black, 24.2%), shared their COVID-19 pandemic experiences and information-seeking behaviors by telephone. Interviews and surveys were conducted from June 17, 2020, to November 24, 2020. Analytical Approach: Qualitative themes were identified using thematic analysis. Frequencies were calculated to assess levels of depression and anxiety using the Patient Health Questionnaire for Depression and Anxiety and types of information-seeking behaviors. Results: 7 themes and 16 subthemes emerged. Themes of commonly reported stressors include postponing medical visits; decreased accessibility of getting medication; difficulty in receiving up-to-date, patient-focused health information and dialysis supplies; and delays in medical appointments. Other stressors include losses of health insurance and income, and increased vigilance in behaviors to avoid contracting COVID-19. 15 participants had moderate to severe anxiety and depression symptoms and reported more frequent and severe panic attacks after the COVID-19 pandemic. Participants sought emotional support from family, friends, and faith communities. They also commonly obtained information from news media and reported needing more transplant-specific updates about COVID-19, and frequent communication from their kidney and transplant specialists. Limitations: This convenience sample of individuals willing to share their experiences through a telephone hotline may not generalize to all dialysis and transplant patients; stressors related to the COVID-19 pandemic for these patients continue to change. Conclusions: As the impact of the pandemic continues, needs-based interventions tailored for the kidney and transplant community, including access to mental health resources, education, and support for care transitions, should continue.

Findings of living donation experiences shared on a digital storytelling platform: A thematic analysis.

Objectives: To identify common experiences and emotional changes shared by living donors and kidney recipients about their living donation experiences on a digital storytelling platform. Methods: 82 donors and 36 recipients submitted prompt-guided videos to the platform. Two coders analyzed transcripts for motivations, common themes, and emotions expressed. Results: Storytellers shared their stories to advocate for living donation and contribute to others facing similar challenges. Pre-surgery, recipients recalled their dialysis experiences and how they sought living donors while donors discussed their motivations and common fears. Post-surgery, recipients discussed changes in their relationship with the donor and quality life, while donors described how they benefited. Learning they needed a transplant, recipients reported feeling fear (33.3%) while donors felt sadness (48.8%). Post-transplant, recipients and donors reported feeling happiness (85.4%, 38.9%) and relief (29.3%, 22.2%). Conclusion: Online digital storytelling libraries increase access to real-life living donation experiences. Since stories are highly personal, additional living donor kidney transplant risk-benefit education is needed. Innovation: Stories can supplement traditional education and be incorporated into advocacy efforts; campaigns could capitalize upon the personal aspect of stories to gently introduce and encourage living kidney donation among the general public.