On taking up space: a qualitative inquiry of depression in older adults with cancer.

OBJECTIVE: To identify the phenomenology of depression in older adults with cancer (OACs) in order to improve the accuracy of depression screening for this population. METHOD: Inclusion criteria were: ≥70 years old, history of cancer, no cognitive impairment or severe psychopathology. Participants completed a demographic questionnaire, a diagnostic interview, and a qualitative interview. Using a Thematic Content Analysis framework, critical themes, passages, and phrases used by patients to describe their perceptions of depression and how it is experienced were identified. Particular attention was paid to divergences between depressed and non-depressed participants. RESULTS: Among 26 OACs (13 depressed, 13 non-depressed), qualitative analyses revealed four major themes indicative of depression (i.e. anhedonia, reduction in social relationships/loneliness, lack of meaning and purpose, lack of usefulness/feeling like a burden) and four minor themes (i.e. attitude towards treatment, mood, regret/guilt, physical symptoms/limitations). Themes of adaptation and acceptance of symptoms also emerged. CONCLUSIONS: Of the eight themes identified, only two overlap with DSM criteria. This supports the need to develop assessment methods of depression in OACs that are less reliant on DSM criteria and distinct from existing measures. This may improve the ability to identify depression in this population.

Exploring the caregiver's experience in an innovative homebound hematopoietic stem cell transplantation program.

OBJECTIVE: Home care for hematopoietic stem cell transplants (HSCTs), an alternative to traditional inpatient or outpatient recovery programs, is safe and feasible but may place greater demand on full-time caregivers. The goal of this study was to characterize the experiences of caregivers in a newly piloted homebound HSCT program as a means of identifying unmet needs and ensuring adequate support. METHOD: A qualitative approach was utilized. Participants created self-recorded video diaries guided by open-ended prompts at designated time points throughout recovery and participated in a single follow-up interview within four weeks post-discharge. Diaries and interviews were transcribed, analyzed, and coded to identify recurrent ideas and themes. RESULTS: Data were collected from 12 caregivers of homebound HSCT patients. Thematic content analysis yielded four themes: facilitators (external support, sense of normalcy, and patient wellness), challenges (difficulties with transplant care instructions, managing the patient's physical and emotional health, and caregiver psychological distress), roles in recovery (caregiving responsibilities), and analysis of homebound experience (positive outcomes and suggestions for improvement). SIGNIFICANCE OF RESULTS: Caregivers perceived the homebound program as offering high-quality medical care in a setting that provided a sense of normalcy, privacy, and greater level of oversight. Unmet needs included lacking preparedness in completing nursing responsibilities and handling caregiver and patient distress. While the homebound program was preferred to routine hospital care, psychotherapeutic support and programming to improve caregiver preparedness in a homebound HSCT recovery program is indicated.

Illustrating Cancer Risk: Patient Risk Communication Preferences and Interest regarding a Novel BRCA1/2 Genetic Risk Modifier Test.

INTRODUCTION: Genetic risk modifier testing (GRMT), an emerging form of genetic testing based on common single nucleotide polymorphisms and polygenic risk scores, has the potential to refine estimates of BRCA1/2 mutation carriers' breast cancer risks. However, for women to benefit from GRMT, effective approaches for communicating this novel risk information are needed. OBJECTIVE: To evaluate patient preferences regarding risk communication materials for GRMT. METHODS: We developed four separate presentations (panel of genes, icon array, verbal risk estimate, graphical risk estimate) of hypothetical GRMT results, each using varying risk communication strategies to convey different information elements including number of risk modifier variants present, variant prevalence among BRCA1/2 carriers, and implications and uncertainties of test results for cancer risk. Thirty BRCA1/2 carriers evaluated these materials (randomized to low, moderate, or high breast cancer risk versions). Qualitative and quantitative data were obtained through in-person interviews. RESULTS: Across risk versions, participants preferred the presentation of the graphical risk estimate, often in combination with the verbal risk estimate. Interest in GRMT was high; 76.7% of participants wanted their own GRMT. Participants valued the potential for GRMT to clarify their cancer susceptibility and provide actionable information. Many (65.5%) anticipated that GRMT would make risk management decisions easier. CONCLUSIONS: Women with BRCA1/2 mutations could be highly receptive to GRMT, and the minimal amount of necessary information to be included in result risk communication materials includes graphical and verbal estimates of future cancer risk. Findings will inform clinical translation of GRMT in a manner consistent with patients' preferences.

Feasibility and acceptability of using an IVRS to assess decision making about sun protection.

OBJECTIVE: We developed an interactive voice response system (IVRS), an automated telephone survey technology, to assess real-time decision making about sun protection. We examined the feasibility and acceptability of IVRS in this electronic health (eHealth) context. METHODS: Melanoma patients who underwent surgery referred their first-degree relatives (FDRs) for participation. Eligible FDRs were contacted twice daily (12:30 pm; 5:00 pm) over 14 consecutive days via IVRS to complete a survey about their sun protection behaviors and decisions about those behaviors. RESULTS: Of the 81 eligible FDRs, 69 (85%) consented to the study, and 53 (77%) completed the study. We assessed adherence with the IVRS via the number and pattern of missing survey items across all answered IVRS calls. About 80% of scheduled IVRS calls were answered (1316/1652). Most surveys (93%) of the IVRS-answered calls were completed. To examine acceptability, we analyzed the program satisfaction survey data collected at the end of the study. Most participants viewed the IVRS to be highly acceptable and easy to use. CONCLUSIONS: These findings illustrate that use of real-time IVRS data collection regarding sun protection decision making is feasible and acceptable to higher-risk research participants and could thus be used with time and location-sensitive eHealth support to enhance sun protection decision making.

A mixed methods analysis of patients' advance care planning values in outpatient oncology: Person-Centered Oncologic Care and Choices (P-COCC).

PURPOSE: Person-Centered Oncologic Care and Choices (P-COCC) combines an advance care planning (ACP) value-focused patient interview with a care goal video decision aid. Our randomized study showed that P-COCC was acceptable but increased participant distress, compared with video-alone and usual care study arms. This mixed methods approach explores the ACP values in the P-COCC arm and their relationship to the distress phenomenon. METHODS: Qualitative thematic analysis of the 46 audio-recorded P-COCC interview transcripts with advanced gastrointestinal cancer patients was performed by multiple reviewers. Quantitative (Likert scale) changes in ACP values were compared across study arms. ACP themes and value change were analyzed in participants with increased distress. RESULTS: Transcript analysis resulted in thematic saturation and identified eight distinct themes on ACP values relating to end-of-life wishes, communication needs, and psychosocial supports. Of 98 participants (33 P-COCC, 43 videos, 22 usual care) who completed the change in value measure, there was no difference detected with P-COCC compared with either video (p = 0.052) or usual care (p = 0.105) arms alone, but P-COCC led to a frequency distribution of more change in personal values compared with the other study arms combined (p = 0.043). Among the subset of P-COCC participants with increased distress, there was no statistical relationship with change in values. CONCLUSIONS: The ACP paradigm P-COCC both informs and supports patients in individualized, value-based decision-making. Distress is not associated with changes in ACP values and may be a necessary, at least transient, byproduct of discussing sensitive but pertinent topics about end-of-life medical care.

A qualitative study of adolescent and young adult cancer survivors' perceptions of family and peer support.

This qualitative study examined adolescent and young adult survivors' perceptions of support from family and peers. A total of 26 survivors, aged 16-24 years, who had been diagnosed with cancer between the ages of 14 and 18, participated in semi-structured interviews. Three themes emerged for support: practical support, emotional support, and new sense of closeness. For lack of support, two themes emerged: absence during treatment and lack of understanding about appearance changes. These findings emphasize the perceived importance of family and peer support throughout adolescent and young adults' cancer trajectories and indicate a need for interventions to help adolescent and young adult develop and maintain support networks throughout treatment and survivorship.

Stakeholders' Perceptions and Information Needs Regarding Research Medical Donation.

CONTEXT: Research Medical Donation (RMD), which entails collecting human tissue within hours after death, benefits cancer research but data are limited regarding barriers institutions face accruing patients to RMD programs. OBJECTIVES: The objective of this study was to generate stakeholder perspectives to best inform the complex RMD process, which includes communicating with patients and their proxies and procuring tissue in a timely manner, all the while respecting end-of-life care sensitivities. METHODS: We explored perceived core needs and challenges of RMD by engaging stakeholders (cancer clinicians, patients, and their caregivers) in eight teleconference focus groups. Breast, pancreatic, and lung cancer clinicians comprised two groups. Each cancer separately had two groups for patients and their caregivers combined. Qualitative analysis of focus group transcripts included identifying and reaching group consensus on transcript themes and establishing agreement on consensus templates to identify primary common and divergent themes. RESULTS: A total of 45 people (13 clinicians, 24 patients, eight caregivers) participated in the groups. The themes identified were as follows: 1) clinicians and patients had limited previous knowledge about RMD; 2) RMD was perceived to mainly benefit research; 3) logistical and privacy questions arose; 4) introducing RMD was deemed sensitive, with patient-specific timing; 5) rare and/or virulent cancers appeared associated with willingness to participate in RMD. CONCLUSION: Patients, families, and cancer clinicians have generally low knowledge of RMD but, upon learning about it, deem it valuable for scientific advancement (particularly for rare and virulent cancers), necessary to be carried out with individualized sensitivity to end-of-life issues, and through training programs with involved clinical staff.

Factors Associated With Use of a High-Volume Cancer Center by Black Women With Ovarian Cancer.

OBJECTIVE: Disparities exist between population subgroups in the use of gynecologic oncologists and high-volume hospitals. The objectives of this study were to explore the experiences of black women obtaining ovarian cancer (OC) care at a high-volume center (HVC) and to identify patient-, provider-, and systems-related factors affecting their access to and use of this level of care. MATERIALS AND METHODS: Twenty-one semistructured interviews were conducted as part of an institutional review board-approved protocol with women who self-identified as black or African American, treated for OC at a single HVC from January 2013 to May 2017. Recurring themes were identified in transcribed interviews through the process of independent and collaborative thematic content analysis. RESULTS: Five themes were identified: (1) internal attributes contributing to black women's ability/desire to be treated at an HVC, (2) pathways to high- and low-volume centers, (3) obstacles to obtaining care, (4) potential barriers for black women interested in treatment at an HVC, and (5) suggestions for improving HVC use by black women. Study participants who successfully accessed care were comfortable navigating the health care system, understood the importance of self-advocacy, and valued the expertise of an HVC. Barriers to obtaining care at an HVC included lack of knowledge about the HVC, lack of referral, transportation difficulties, and lack of insurance coverage. CONCLUSION: In this qualitative study, black women treated at an HVC shared attributes and experiences that helped them access care. There is a need to collaborate with black communities and establish interventions to reduce barriers, facilitate access, and disseminate information about the value of receiving care for OC at an HVC.

A scale for patient-reported symptom assessment for patients with Erdheim-Chester disease.

Erdheim-Chester disease (ECD) is an ultra-rare hematologic neoplasm characterized by somatic mutations of the MAPK pathway and by accumulation of lesional histiocytes within tissues. Clinical phenotypes and sites of disease involvement are heterogenous in ECD, and no tool exists for systematic and comprehensive assessment of ECD symptomatology. We describe a collaborative effort among ECD specialists, patient-reported outcome (PRO) methodologists, and ECD patients to develop the Erdheim-Chester Disease Symptom Scale (ECD-SS): a symptom inventory for clinical ECD care and evaluation of ECD therapies. Methodologically rigorous focus groups led to the identification of 63 ECD symptoms in 6 categories, incorporated into the ECD-SS with respect to both severity and frequency. Among 50 ECD patients participating in a prospective registry study completing the ECD-SS, 46 (92%) reported neurological/psychological symptoms, 29 (58%) reported pain, and at least one-half reported mood symptoms, memory problems, or fatigue. Symptoms were highly frequent or almost constant regardless of their severity. The ECD-SS is a rigorously developed, patient-centered tool that demonstrates the wide and previously unappreciated burden of symptomatology experienced by ECD patients. Further studies will refine the symptom inventory and define its psychometric properties and role in clinical care and investigation in the context of ECD.

"A Tool, Not a Crutch": Patient Perspectives About IBM Watson for Oncology Trained by Memorial Sloan Kettering.

PURPOSE: IBM Watson for Oncology trained by Memorial Sloan Kettering (WFO) is a clinical decision support tool designed to assist physicians in choosing therapies for patients with cancer. Although substantial technical and clinical expertise has guided the development of WFO, patients' perspectives of this technology have not been examined. To facilitate the optimal delivery and implementation of this tool, we solicited patients' perceptions and preferences about WFO. METHODS: We conducted nine focus groups with 46 patients with breast, lung, or colorectal cancer with various treatment experiences: neoadjuvant/adjuvant chemotherapy, chemotherapy for metastatic disease, or systemic therapy through a clinical trial. In-depth qualitative and quantitative data were collected and analyzed to describe patients' attitudes and perspectives concerning WFO and how it may be used in clinical care. RESULTS: Analysis of the qualitative data identified three main themes: patient acceptance of WFO, physician competence and the physician-patient relationship, and practical and logistic aspects of WFO. Overall, participant feedback suggested high levels of patient interest, perceived value, and acceptance of WFO, as long as it was used as a supplementary tool to inform their physicians' decision making. Participants also described important concerns, including the need for strict processes to guarantee the integrity and completeness of the data presented and the possibility of physician overreliance on WFO. CONCLUSION: Participants generally reacted favorably to the prospect of WFO being integrated into the cancer treatment decision-making process, but with caveats regarding the comprehensiveness and accuracy of the data powering the system and the potential for giving WFO excessive emphasis in the decision-making process. Addressing patients' perspectives will be critical to ensuring the smooth integration of WFO into cancer care.

A Randomized Trial of Acceptability and Effects of Values-Based Advance Care Planning in Outpatient Oncology: Person-Centered Oncologic Care and Choices.

CONTEXT: No standard advance care planning (ACP) process exists in oncology. We previously developed and validated the values questions for Person-Centered Oncologic Care and Choices (P-COCC), a novel ACP intervention combining a patient values interview with an informational care goals video. OBJECTIVES: To pilot-study acceptability and, using randomization, explore potential utility of P-COCC. METHODS: Eligibility included patients with advanced gastrointestinal cancer cared for at a comprehensive cancer center. Participants were randomized 2:2:1 to P-COCC vs. video alone vs. usual care, respectively. Validated assessments of well-being and decisional conflict were completed. Participants in the P-COCC arm also completed three Likert scales (was the intervention helpful, comfortable, and recommended to others); a positive score of at least 1 of 3 indicated acceptability. RESULTS: Patients were screened from 9/2014 to 11/2016; 151 were consented and randomized, 99 whom completed study measures (most common attrition reason: disease progression or death). The primary aim was met: Among 33 participants, P-COCC was acceptable to 32 (97%, 95% CI: 0.84-0.99, P < 0.001). Mean distress scores (0-10) increased (0.43) in the P-COCC arm but decreased in the video-alone (-0.04) and usual-care (-0.21) arms (P = 0.03 and 0.04, P-COCC vs. video-alone and usual-care arms, respectively). There were no significant pre-post change scores on other measures of well-being (e.g., anxiety, depression, stress) or intergroup differences in decisional conflict. CONCLUSION: Our values-based ACP paradigm is acceptable but may increase distress in cancer outpatients. Further studies are investigating the underpinnings of these effects and ways to best support cancer patients in ACP.

Treatment decision making in early-stage papillary thyroid cancer.

OBJECTIVE: The purpose of this study was to develop an in-depth understanding of papillary microcarcinoma (PMC) patients' decision-making process when offered options of surgery and active surveillance. METHODS: Fifteen PMC patients and 6 caregivers participated in either a focus group or individual interview. Focus groups were segmented by patients' treatment choice. Primary themes were identified in transcripts using thematic text analysis. RESULTS: Four themes emerged from the surgery subsample: (1) Decision to undergo thyroidectomy quickly and with a sense of urgency; (2) Perception of PMC as a potentially life-threatening disease; (3) Fear of disease progression and unremitting uncertainty with active surveillance; and (4) Surgery as a means of control and potential cure. Three themes emerged from the active surveillance subsample: (1) View of PMC as a common, indolent, and low-risk disease; (2) Concerns about adjusting to life without a thyroid and becoming reliant on hormone replacement medication; and (3) Openness to reconsidering surgery over the long run. Two themes were identified that were shared by participants from both subsamples: (1) Deep level of trust and confidence in physician and cancer center; and (2) Use of physician and internet as primary sources of disease and treatment-related information. CONCLUSIONS: Several factors influenced participants' treatment choice, with similarities and differences noted between surgery and active surveillance subsamples. Many of the emergent themes are consistent with research on decision making among localized prostate cancer patients. Findings suggest that participants from both PMC treatment subsamples are motivated to reduce illness and treatment-related uncertainty.

Acceptability of a Salon-Based Intervention to Promote Colonoscopy Screening Among African American Women.

African American women have the highest colorectal cancer incidence and mortality rates among women of any race/ethnicity in the United States. Colonoscopy screening is an efficacious procedure for the prevention and early detection of colorectal cancer, making it a promising tool in the effort to eliminate colorectal cancer disparities. Toward that end, the present qualitative study sought to assess acceptability of and preferences for a beauty salon-based intervention to promote colonoscopy screening among African American women. A total of 11 focus groups were conducted: 6 with staff from African American-serving salons ( n = 3 with salon owners, n = 3 with salon stylists) and 5 with African American salon clients. Theory-guided focus group questions were used to explore participants' beliefs, interests, and preferences associated with the proposed intervention. Results indicated that, across all subgroups, participants were highly supportive of the idea of a salon-based intervention to promote colonoscopy screening among African American women, citing reasons such as the commonplace nature of health discussions in salons and the belief that, with proper training, stylists could effectively deliver colorectal cancer-related health information to their clients. The greatest differences between salon staff and clients were found with respect to the specifics of the intervention. Staff focused more heavily on content-related issues, such as the specific information that should be stressed in the intervention, whereas clients focused largely on process-related issues, such as the preferred intervention formats and how stylists should present themselves to clients. The findings from this study offer both encouragement and important groundwork for the development of a salon-based, stylist-delivered intervention to promote colonoscopy screening among African American women.

Real-time sun protection decisions in first-degree relatives of melanoma patients.

OBJECTIVE: Melanoma is the most serious skin cancer, and consistent use of sun protection is recommended to reduce risk. Yet sun protection use is generally inconsistent. Understanding the decisional factors driving sun protection choices could aid in intervention development to promote sun protection maintenance. METHOD: In 59 first-degree relatives of melanoma patients, an interactive voice response system (IVRS) on participants' cell phones was used to assess twice daily (morning, afternoon) real-time sun protection usage (sunscreen, shade, hats, protective clothing) and decision factors (weather, type of activity, convenience, social support) over a 14-day summer interval where morning and afternoon outdoor exposures were anticipated. Generalized estimating equations and hierarchical linear models were used to examine the effect of demographics and decisional factors on sun protection choices over time. RESULTS: Sun protection use was inconsistent (e.g., 61% used sunscreen inconsistently). Most strategies were used independently, with the exception of moderate overlap of sunscreen and hat usage. Decision factors were highly relevant for sun protection. For instance, sunscreen use was related to the perception of having adequate time to apply it, whereas shade and hat usage were each related to convenience. Few findings emerged by gender, age, time of day, or year. Significant within-subject variation remained, however. CONCLUSIONS: The findings support continued examination of decision factors in understanding sun protection consistency in real time. Interventions where cues to action and environmental supports work together in varied settings can be developed to improve sun protection maintenance in populations at risk for this common disease. (PsycINFO Database Record

Interest and Attitudes of Patients With Advanced Cancer With Regard to Secondary Germline Findings From Tumor Genomic Profiling.

PURPOSE: Tumor genomic profiling (TGP) can reveal secondary findings about inherited disease risks in a patient with cancer. Little is known about how patients with advanced cancer, currently the primary users of TGP, perceive the benefits and harms of secondary germline findings. METHODS: We conducted semistructured interviews with 40 patients with advanced breast, bladder, colorectal, or lung cancer who had TGP. Qualitative interview data were evaluated by using a thematic content analysis approach. RESULTS: Most participants expressed interest in the prospect of learning their secondary germline findings (57%), although a minority was equivocal (29%) or disinterested (14%). Reasons for these preferences varied but were influenced by participants' perceptions of diverse benefits and harms of this information, which they regarded as relevant to themselves; their families; and other patients with cancer, medical science, and society. These attitudes were uniquely shaped by participants' personal disease experiences and health status. CONCLUSION: Many patients with advanced cancer are interested in learning secondary germline findings and hold optimistic and perhaps unrealistic beliefs about the potential health benefits. Patients also have important concerns about clinical and emotional implications of this information. These perceptions are necessary to address to ensure that patients make informed decisions about learning secondary germline findings.

An eHealth Intervention to Increase Physical Activity and Healthy Eating in Older Adult Cancer Survivors: Summative Evaluation Results.

BACKGROUND: A healthy lifestyle is associated with improved quality of life among cancer survivors, yet adherence to health behavior recommendations is low. OBJECTIVE: This pilot trial developed and tested the feasibility of a tailored eHealth program to increase fruit and vegetable consumption and physical activity among older, long-term cancer survivors. METHODS: American Cancer Society (ACS) guidelines for cancer survivors were translated into an interactive, tailored health behavior program on the basis of Social Cognitive Theory. Patients (N=86) with a history of breast (n=83) or prostate cancer (n=3) and less than 5 years from active treatment were randomized 1:1 to receive either provider advice, brief counseling, and the eHealth program (intervention) or advice and counseling alone (control). Primary outcomes were self-reported fruit and vegetable intake and physical activity. RESULTS: About half (52.7%, 86/163) of the eligible patients consented to participate. The most common refusal reasons were lack of perceived time for the study (32/163) and lack of interest in changing health behaviors (29/163). Furthermore, 72% (23/32) of the intervention group reported using the program and most would recommend it to others (56%, 14/25). Qualitative results indicated that the intervention was highly acceptable for survivors. For behavioral outcomes, the intervention group reported increased fruit and vegetable consumption. Self-reported physical activity declined in both groups. CONCLUSIONS: The brief intervention showed promising results for increasing fruit and vegetable intake. Results and participant feedback suggest that providing the intervention in a mobile format with greater frequency of contact and more indepth information would strengthen treatment effects.

Patient perspectives on ipilimumab across the melanoma treatment trajectory.

PURPOSE: Ipilimumab was the first FDA-approved agent for advanced melanoma to improve survival and represents a paradigm shift in melanoma and cancer treatment. Its unique toxicity profile and kinetics of treatment response raise novel patient education challenges. We assessed patient perceptions of ipilimumab therapy across the treatment trajectory. METHODS: Four patient cohorts were assessed at different time points relative to treatment initiation: (1) prior to initiation of ipilimumab (n = 10), (2) at weeks 10-12 before restaging studies (n = 11), (3) at week 12 following restaging studies indicating progression of disease (n = 10), and (4) at week 12 following restaging studies indicating either a radiographic response or disease stability (n = 10). Patients participated in a semistructured qualitative interview to assess their experiences with ipilimumab. Quality of life was assessed via the Functional Assessment of Cancer Therapy-General and its Melanoma-specific module. RESULTS: Perceived quality of life was comparable across cohorts, and a majority of the sample understood side effects from ipilimumab and the potential for a delayed treatment response. Patients without progression of disease following restaging studies at week 12 held more positive views regarding ipilimumab compared to patients who had progressed. CONCLUSION: Patients generally regarded ipilimumab positively despite the risk of unique toxicities and potential for delayed therapeutic responses; however, those with progression expressed uncertainty regarding whether taking ipilimumab was worthwhile. Physician communication practices and patient education regarding realistic expectations for therapeutic benefit as well as unique toxicities associated with ipilimumab should be developed so that patients can better understand the possible outcomes from treatment.

Communication between oncologists and lymphoma survivors during follow-up consultations: A qualitative analysis.

Cancer survivors often experience both short- and long-term challenges as a result of their cancer treatment. Many patients report feeling "lost in transition" following cancer treatment. The oncologist plays a key role in helping the patient to transition to survivorship. The purpose of this paper is to provide a descriptive understanding of the clinical care delivered during follow-up visits for lymphoma patients transitioning from active therapy into survivorship. We used thematic text analysis to identify themes in transcripts of audio recordings of 21 physicians and their patients in follow-up visits within 3 years of completing lymphoma treatment. Conversations between oncologists and patients during follow-up visits addressed a variety of themes, including specific health concerns, follow-up care, health promotion, prior treatment and test results, overall health status, emotional communication and affective tone, post-treatment rehabilitation, discussions occurring in the patient's physical examination, and social issues. However, the frequency with which these themes were discussed varied. In addition, there did not appear to be a consistent framework for these visits. The varied nature of the follow-up visits analyzed in this study suggests the need for increased structure in survivorship-care consultations.

Decision-Making Preferences About Secondary Germline Findings That Arise From Tumor Genomic Profiling Among Patients With Advanced Cancers.

PURPOSE: In patients with advanced cancers, tumor genomic profiling (TGP) can reveal secondary germline findings (SGFs) regarding inherited disease risks. This study examines the process by which patients with advanced cancers would make the decision about whether or not to learn these SGFs, and their preferences regarding specific challenging decision scenarios including whether patients should be required to receive SGFs and whether SGFs should be returned to family after a patient's death. PATIENTS AND METHODS: We conducted qualitative semi-structured interviews with 40 patients with advanced breast, bladder, colorectal, or lung cancer who had TGP. Data were collected regarding participants' perspectives about the hypothetical decision to learn their SGFs including their anticipated approach to the decision-making process, as well as their preferences about challenging decision scenarios. Data were evaluated using thematic content analysis. RESULTS: We identified themes regarding participants' preferred degree of decisional autonomy, perceived vital role of doctors, information needs, and anticipated process of deliberation. Although participants reported that this decision was ultimately their own, many wanted input from family and trusted others. Oncologists were expected to provide decision guidance and key clarifying information. Most participants stated that patients should be able to make a choice about receiving actionable SGFs, and a majority stated that SGFs should be available to family after a patient's death. CONCLUSION: These results provide insight into SGFs decision-making processes of patients with advanced cancers, which can allow clinicians to provide patients optimal decision support in this context. Patients with advanced cancers have specific information needs and decision-making preferences that educational and communication interventions should address to ensure that patients make informed choices about learning SGFs.