"Living with Loss": A qualitative exploration of existential fears among people with advanced lung cancer in online lung cancer support groups.

OBJECTIVES: With targeted therapies, people are surviving longer with advanced lung cancer and engaging in online lung cancer support communities. While these groups provide a sense of community, witnessing the death of peers can lead to emotional distress. This qualitative study aims to (1) explore the experience of witnessing death in online cancer support groups; (2) identify factors that contribute to the emotional struggles of witnessing the death of peers; and (3) identify strategies/options for dealing with losses in the cancer community. METHODS: We conducted a cross-sectional analysis of qualitative interviews exploring existential concerns with participants (n = 25) from oncogene-specific online lung cancer support groups. The principal investigator conducted study interviews between August 2018 and March 2019 where participants were asked about their cancer experiences and existential concerns. We used thematic analysis and NVIVO 11 software to examine and store the de-identified interview data. RESULTS: Participants indicated that they had often witnessed their peers die and felt the pain of the loss. Factors that played a part in their struggle with witnessing others' death included the closeness of the relationship with the person, the age of the person who died, seeing oneself in the experience of the other dying, disparities in care, and losing touch in the final stages. Participants used varied coping strategies such as celebrating the life of the individual who died, engaging in advocacy efforts, not focusing on the loss, participating in therapy, and bringing self-preserving thoughts. SIGNIFICANCE OF RESULTS: Our study highlights the importance of addressing existential fears in online lung cancer support groups and incorporating conversations about death in spaces that deal with cancer.

Acceptability and usability of the Planning Advance Care Together (PACT) website for improving patients' engagement in advance care planning.

Objectives: Most prior advance care planning (ACP) interventions lack integration of the social context of patients' ACP process, which patients indicate is critically important. The current study developed the Planning Advance Care Together (PACT) website to foster inclusion of loved ones in the ACP process. Methods: To provide feedback about the PACT website, patients with advanced cancer (N = 11), their caregivers (N = 11), and experts (N = 10) participated in semi-structured interviews. Patients and caregivers also completed standardized ratings of acceptability and usability. Results: Overall, patient (n = 11) and caregiver (n = 11) ratings of acceptability and usability of the website exceeded benchmark cut-offs (≥24 on the Acceptability E-Scale and ≥ 68 on the System Usability Scale). Patients, caregivers, and experts liked the topic of ACP but felt that it could be emotionally challenging. They recommended focusing more on planning and less on end of life. They appreciated being able to include loved ones and recommended adding resources for caregivers. Conclusions: Study findings support the preliminary usability and acceptability of the PACT website. Findings will be used to inform a modified prototype of the PACT website that is interactive and ready for field testing with patients with advanced cancer and their loved ones. Innovation: We utilized a novel application of the shared mind framework to support patients with advanced cancer in engaging their loved ones in the ACP process.

Development and refinement of a novel end-of-life planning website for patients with advanced cancer: a mixed methods approach.

PURPOSE: Despite known benefits of planning for end-of-life, no digital tool exists to help patients with advanced cancer and their loved ones plan for death comprehensively. To address this unmet need, we developed a preliminary version of an innovative website to help patients with advanced cancer prepare for end-of-life tasks. METHODS: Guided by the Obesity-Related Behavioral Intervention Trials (ORBIT) model for behavioral intervention development, patients with advanced cancer (n = 10) and their caregivers (n = 10) participated in a "Think Aloud" exercise and usability protocols to optimize the end-of-life planning website. The website was iteratively refined throughout the study in collaboration with the partnering company, Peacefully, Inc. Participants also completed the Acceptability E-Scale and System Usability Scale, with a priori benchmarks established for acceptability (scores of ≥ 24 on the Acceptability E-Scale) and usability (scores of ≥ 68 on the System Usability Scale). RESULTS: Patients (N = 10) and caregivers (N = 10) completed usability testing. Patients were majority female (80%), White (100%), and had a mean age of 58 years. Caregivers (N = 10) were majority male (60%), spouse/partner (90%), White (90%), and had a mean age of 59 years. For patients, a priori hypotheses were met for both acceptability (mean score of 24.7, SD = 4.35) and usability (mean score of 73.8, SD = 6.15). For caregivers, acceptability was just below the cutoff (mean score of 22.9, SD = 4.07) and usability exceeded the cutoff (mean score of 70.0, SD = 8.42). Overall, patients and caregivers reported high levels of satisfaction and found the website helpful, with specific suggestions for changes (e.g., add more information about information security, improve text legibility). CONCLUSIONS: The findings from this study will inform modifications to optimize an innovative website to support patients with advanced cancer to prepare holistically for end-of-life tasks.

"I won't get to live my life the way I planned it": A qualitative analysis of the experiences of adolescents and young adults with advanced cancer.

BACKGROUND: Individuals with advanced cancer face complex challenges, including prognostic uncertainty and evolving goals of care. Despite the unique psychosocial support needs of adolescents and young adults (AYAs), few studies have specifically examined AYA perspectives of and experiences with advanced cancer. The objective of this study was to describe the experience, needs, and perspectives of pediatric AYAs with advanced cancer. PROCEDURE: We invited English-speaking AYAs (age 14-25 years) who were receiving treatment for advanced cancer at our single tertiary pediatric cancer center to participate in semi-structured interviews. We used directed content analysis for codebook development and then applied in-depth thematic network analysis to describe their perspectives and experiences with advanced cancer. RESULTS: A total of 32 AYAs (86% of approached) completed interviews. A slight majority were male (59%) and non-Hispanic White (56%). Most were diagnosed with leukemia/lymphoma, had recurrent disease (84%), and were a mean 53 months from initial diagnosis. Organizing themes of "not being able to beat this," "not wanting to miss out," and "living each day" generated the global theme "do I have a future?" "Making tough medical decisions," "adjusting life/plans/perspectives," and "decisions about dying" were organized into the global theme "those decisions … were really hard." "Feeling like there is no one to talk to," "being away from family and friends," and "feeling like a burden" generated the global theme "I felt very alone." CONCLUSIONS: Pediatric AYAs with advanced cancer describe unique challenges. Psychological support interventions are needed to empower AYAs to navigate difficult decisions and to cope with isolation.

Social Support, Coping, and Cancer-Related Health Burden in Long-term Survivors Treated with Hematopoietic Stem Cell Transplantation as Adolescents or Young Adults.

Purpose: Long-term adolescent and young adult hematopoietic stem cell transplantation (HCT) survivors face complex physical and psychological treatment effects that contribute to cancer-related health burden. We aimed to identify the role of social support and coping strategies on cancer-related health burden. Methods: This cross-sectional analysis included HCT recipients from the INSPIRE trial [NCT00799461], who received their first transplant between ages 15 and 39. As our primary outcome, we used the health burden subscale of the Cancer and Treatment Distress measure. We assessed correlates using the Short Form-36v2 physical component summary, brief Coping Orientation to Problems Experienced (COPE), and ENRICHD Social Support Inventory. We used hierarchical multivariable linear regression to identify factors associated with cancer-related health burden, with the first step including sociodemographic and clinical factors, the second step adding physical function, and the third step including social support and coping. Results: Participants (N = 293) were 52% male and 93% white, non-Hispanic, with a mean age of 30.2 (standard deviation 6.6) at first transplant. In step one, sex accounted for ∼3% of the variance (p = 0.006). Adding physical function explained an additional 33% of the variance (p = <0.001). Social support and coping strategies explained 11% of the variance (p = <0.001). The final model explained 47% of the variance; better physical function, more social support, and active coping were associated with lower cancer-related health burden, while female sex, venting, and distraction were associated with higher cancer-related health burden. Conclusion: Supporting physical function and fostering social support and active coping may help mitigate cancer-related health burden in this population. Clinical Trial Registration: NCT00799461.

Seeking virtual support: Digital technology use in adolescent and young adults with advanced cancer.

BACKGROUND: A cancer diagnosis, especially advanced cancer, interferes with adolescent/young adult (AYA) peer relationships. AYAs increasingly use digital technologies (i.e., social media, video games) as a social instrument; little is known about the role of digital technologies in the AYA cancer experience. The objective of this analysis was to describe the use and impact of digital technologies among AYAs with advanced cancer. PROCEDURE: As part of the "Exploring the Concept of a 'Good Death'" study, semi-structured interviews were conducted with 32 English-speaking AYAs (14-25 years) with advanced cancer (relapsed/refractory disease, estimated survival <50%). Interviews were audio recorded, deidentified, and transcribed verbatim. Questions focused on communication and sources of psychosocial support. Directed content analysis was used for codebook creation. Three reviewers completed transcript coding and reconciled discrepancies. Thematic analysis identified hierarchical themes. The present analysis focused on the specific theme of "digital technologies as a support mechanism." RESULTS: When asked about sources of support, social media and multiplayer online games were most often recognized by AYAs. Three themes emerged regarding the role of digital technologies: distraction, maintaining existing peer support, and connecting with peers with cancer. Two AYAs acknowledged negative consequences of social media. CONCLUSIONS: AYAs with advanced cancer cite digital technologies as a mechanism for maintaining and seeking peer support. Digital technologies may be leveraged to provide psychosocial support for AYAs with advanced cancer.

A qualitative study of interactions with oncologists among patients with advanced lung cancer.

INTRODUCTION: To support the care of lung cancer patients, oncologists have needed to stay current on treatment advancements and build relationships with a new group of survivors in an era where lung cancer survivorship has been re-defined. The objectives of the study were to (1) understand the perspectives of advanced lung cancer patients whose tumors have oncogenic alterations about their care experiences with their oncologist(s) and (2) describe the perceptions of advanced lung cancer patients about seeking second opinions and navigating care decisions. METHODS: In this qualitative study, patients with advanced lung cancer (n = 25) on targeted therapies were interviewed to discuss their ongoing experience with their oncologists. We used deductive and inductive qualitative approaches in the coding of the data. We organized the data using the self-determination framework. RESULTS: Patients described both positive and negative aspects of their care as related to autonomy, provider competency, and connectedness. Patients sought second opinions for three primary reasons: expertise, authoritative advice, and access to clinical trial opportunities. When there is disagreement in the treatment plan between the primary oncologist and the specialist, there can be confusion and tension, and patients have to make difficult choices about their path forward. CONCLUSIONS: Patients value interactions that support their autonomy, demonstrate the competency of their providers, and foster connectedness. To ensure that patients receive quality and goal-concordant care, developing decision aids and education materials that help patients negotiate recommendations from two providers is an area that deserves further attention.

Cancer survivorship care for young adults: a risk-stratified, multicenter randomized controlled trial to improve symptoms.

PURPOSE: Young adult (YA) cancer survivors have high rates of adverse health and psychosocial outcomes. This risk-stratified, multicenter, randomized controlled trial (RCT) compared a self-management survivorship intervention to usual care in YA survivors with symptoms of cancer-related distress, insomnia, fatigue, pain, and/or depression. METHODS: Eligibility included age 18-39 at diagnosis with an invasive malignancy in the previous 1-5 years. Baseline assessment determined "high need" participants, with 2-5 elevated targeted symptoms. We randomized high need participants to intervention or usual care and offered intervention participants a survivorship clinic visit, which included mutually decided action plans for symptoms. Follow-up calls at 1 and 3 months after the clinic visit reviewed action plan progress. Outcomes compared rates of improved symptoms for intervention vs usual care at 6 months and 12 months. RESULTS: N = 344 completed baseline assessment, with n = 147 (43%) categorized as high need and randomized. Of n = 73 randomized to the intervention, n = 42 (58%) did not attend their survivorship clinic visit. In intent-to-treat analyses, aggregate symptom scores did not differ between arms, though distress improved for 46% in the intervention arm at 6 months compared to 18% in usual care (p = 0.03) among those with elevated distress at baseline. CONCLUSIONS: Distress improved for YAs who received self-management survivorship care. However, the study demonstrates a need for alternative strategies for providing YA survivorship care. TRIAL REGISTRATION: NCT02192333 IMPLICATIONS FOR CANCER SURVIVORS: While YA survivors demonstrate some improved distress when provided survivorship care, to make care accessible and effective, they require options such as remote delivery of care.

A qualitative study of online support communities for lung cancer survivors on targeted therapies.

BACKGROUND: Due to recent treatment advances, people who have non-small cell lung cancer with oncogenic alterations are an important new group of cancer survivors. Little is known about lung cancer online support communities. This research was guided by two primary questions: (1) How do these lung cancer survivors engage in online support communities? and (2) What are the psychological, social, and physical impacts of such engagement? METHODS: Qualitative in-depth interviews were conducted with patients with advanced lung cancer (N = 40) to learn about their experiences with the illness. We used qualitative thematic analysis, inductive and deductive, as outlined by Carspecken. We adapted the framework for studying online communities developed by Zhang and colleagues to examine engagement with and impacts of involvement in online lung cancer support communities. RESULTS: Participants described engaging in the online community through (1) initializing communication through asking questions or sharing resources, (2) responding to others comments or inquiries, or (3) simply observing/reading others posts. Participation had physical, psychological, or social impacts, with benefits (e.g., empowerment) and risks (e.g., feelings of jealousy or misinformation) in each domain. Participants used various strategies to mitigate negative impacts, such as distancing oneself as needed. CONCLUSIONS: Online lung cancer support communities provide support, camaraderie, and specialized health information. However, there are also risks of online engagement, such as social comparison or accessing misinformation. Understanding the utility of online support communities for lung cancer survivors on targeted therapies and further addressing their risks are urgent tasks, especially in the post-COVID era.

Factors associated with social functioning among long-term cancer survivors treated with hematopoietic stem cell transplantation as adolescents or young adults.

OBJECTIVE: Hematopoietic stem cell transplantation (HSCT) can compromise long-term health and social functioning. We examined the impact of physical and social-emotional factors on the social functioning of long-term adolescent and young adult (AYA) HSCT survivors. METHODS: This cross-sectional analysis included HSCT recipients from the INSPIRE trial [NCT00799461] who received their first transplant between ages 15-39. Patient-reported outcome measures included the Short Form-36v2, Fatigue Symptom Inventory, Cancer and Treatment Distress, and the ENRICHD Social Support Inventory. We used hierarchical multiple linear regression to identify physical and social-emotional factors associated with social functioning at the baseline assessment, with the first block including sociodemographic and clinical factors significant at P = <0.10 in univariate testing, the second block including fatigue and physical function, and the third block including social support and distress. RESULTS: Participants (N = 279) were 52% male and 93.5% white, non-Hispanic, with a mean age of 30.3 (SD 6.6) at first transplant. Social Functioning mean was 48.5 (SD 10.5), below age-adjusted norms (t = -13.6, P = <0.001). In the first block, current chronic graft-vs-host disease accounted for 5.5% of the variance (P = <0.001). Adding fatigue and physical function explained an additional 46.6% of the variance (P = <0.001). Adding distress and social support explained an additional 7.7% of the variance (P = <0.001). The final model explained 59.8% of the variance; distress, fatigue, and physical function were significantly associated with social functioning. CONCLUSIONS: Distress, fatigue, and physical function are associated with social functioning and interventions targeting these symptoms may help to improve SF among long-term cancer survivors treated with HSCT as AYAs.