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.

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.

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.

Psychosocial factors associated with the uptake of contralateral prophylactic mastectomy among BRCA1/2 mutation noncarriers with newly diagnosed breast cancer.

PURPOSE: Women who are newly diagnosed with breast cancer may consider contralateral prophylactic mastectomy (CPM) to reduce their future risk of cancer in their unaffected breast. Pre-surgical BRCA1/2 genetic testing can provide valuable risk information to guide this choice. However, little is understood about why BRCA1/2 mutation noncarriers, who are generally not at substantially elevated risk of contralateral disease, select CPM. METHODS: We examined the uptake of CPM among breast cancer patients identified as BRCA1/2 mutation noncarriers (n = 92) as part of a larger prospective study of the impact of pre-surgical BRCA1/2 testing. Data obtained from self-report questionnaires and patient medical records were used to examine associations between theoretically relevant background and psychosocial factors and BRCA1/2 mutation noncarriers' decisions to undergo CPM. RESULTS: Among BRCA1/2 mutation noncarriers, 25% (n = 23) elected to undergo CPM. Psychosocial factors including a self-reported physician recommendation for CPM, greater perceived contralateral breast cancer risk, and greater perceived benefits of CPM were all significantly associated with the uptake of CPM. CONCLUSIONS: A sizeable minority of BRCA1/2 mutation noncarriers choose to undergo CPM after learning their mutation status through pre-surgical genetic testing. BRCA1/2 mutation noncarriers' cognitive perceptions and social influences appear to be important in shaping their decisions regarding CPM. This work highlights the importance of several psychosocial factors in influencing patients' surgical decisions. Future research is needed that examines the formation of BRCA1/2 mutation noncarriers' beliefs regarding their disease and available treatment options, and that characterizes the physician-patient communication that occurs in this complex decision-making context.

Navigating Language Barriers: A Systematic Review of Patient Navigators' Impact on Cancer Screening for Limited English Proficient Patients.

OBJECTIVES: To systematically review the literature on the impact of patient navigators on cancer screening for limited English proficient (LEP) patients. DATA SOURCES: Electronic databases (PubMed, PsycINFO via OVID, Web of Science, Cochrane, EMBASE, and Scopus) through 8 May 2015. ELIGIBILITY CRITERIA: Articles in this review had: (1) a study population of LEP patients eligible for breast, cervical or colorectal cancer screenings, (2) a patient navigator intervention to provide services prior to or during cancer screening, (3) a comparison of the patient navigator intervention to either a control group or another intervention, and (4) language-specific outcomes related to the patient navigator intervention. STUDY APPRAISAL: We assessed the quality of the articles using the Downs and Black Scale. RESULTS: Fifteen studies met the inclusion criteria and evaluated the screening rates for breast, colorectal, and cervical cancer in 15 language populations. Fourteen studies resulted in improved screening rates for LEP patients between 7 and 60%. There was great variability in the patient navigation interventions evaluated. Training received by navigators was not reported in nine of the studies and no studies assessed the language skills of the patient navigators in English or the target language. LIMITATIONS: This study is limited by the variability in study designs and limited reporting on patient navigator interventions, which reduces the ability to draw conclusions on the full effect of patient navigators. CONCLUSIONS: Overall, we found evidence that navigators improved screening rates for breast, cervical and colorectal cancer screening for LEP patients. Future studies should systematically collect data on the training curricula for navigators and assess their English and non-English language skills in order to identify ways to reduce disparities for LEP patients.

Interpreting at the End of Life: A Systematic Review of the Impact of Interpreters on the Delivery of Palliative Care Services to Cancer Patients With Limited English Proficiency.

CONTEXT: Language barriers can influence the health quality and outcomes of limited English proficiency (LEP) patients at end of life, including symptom assessment and utilization of hospice services. OBJECTIVES: To determine how professional medical interpreters influence the delivery of palliative care services to LEP patients. METHODS: We conducted a systematic review of the literature in all available languages of six databases from 1960 to 2014. Studies evaluated use of language services for LEP patients who received palliative care services. Data were abstracted from 10 articles and collected on study design, size, comparison groups, outcomes, and interpreter characteristics. RESULTS: Six qualitative and four quantitative studies assessed the use of interpreters in palliative care. All studies found that the quality of care provided to LEP patients receiving palliative services is influenced by the type of interpreter used. When professional interpreters were not used, LEP patients and families had inadequate understanding about diagnosis and prognosis during goals of care conversations, and patients had worse symptom management at the end of life, including pain and anxiety. Half of the studies concluded that professional interpreters were not used adequately, and several studies suggested that premeetings between clinicians and interpreters were important to discuss topics and terminology to be used during goals of care discussions. CONCLUSION: LEP patients had worse quality of end-of-life care and goals of care discussions when professional interpreters were not used. More intervention studies are needed to improve the quality of care provided to LEP patients and families receiving palliative services.

Preoperative consent for patients with limited English proficiency.

BACKGROUND: Informed consent is important for limited English proficient (LEP) patients undergoing surgery, as many surgical procedures are complicated, making patient comprehension difficult even without language barriers. The study objectives were to (1) understand surgeons' preoperative consenting process with LEP patients, (2) examine how surgeons self assess their non-English language proficiency levels using a standardized scale, and (3) identify the relationship between self assessed non-English language proficiency and surgeons' self-reported use of interpreters during preoperative informed consent. MATERIALS AND METHODS: A thirty-two item survey assessing surgeons' reported preoperative informed consent process, with questions related to demographics, level of medical training, non-English language skills and their clinical use, language learning experiences, and hypothetical scenarios with LEP patients. RESULTS: Surgeons who were not fluent in non-English languages reported they often used those limited skills to obtain informed consent from their LEP patients. Many surgeons reported relying on bilingual hospital staff members, family members, and/or minors to serve as ad-hoc interpreters when obtaining informed consent. If a professional interpreter was not available in a timely manner, surgeons more frequently reported using ad-hoc interpreters or their own nonfluent language skills. Surgeons reported deferring to patient and family preferences when deciding whether to use professional interpreters and applied different thresholds for different clinical scenarios when deciding whether to use professional interpreters. CONCLUSIONS: Surgeons reported relying on their own non-English language skills, bilingual staff, and family and friends of patients to obtain informed consent from LEP patients, suggesting that further understanding of barriers to professional interpreter use is needed.

HPV Vaccine and Latino Immigrant Parents: If They Offer It, We Will Get It.

HPV vaccination rates remain low in the fast growing Latino children population while we continue to observe large HPV-associated cancer disparities in the Latino population. In this study, we sought to elucidate Latino immigrant parents' barriers to obtaining the HPV vaccine for their children. Five focus groups were conducted with Latino immigrant parents of minors (i.e., 9-17 year old) who had not yet initiated the HPV vaccine series. Three major findings were identified from the focus groups: (1) low levels of awareness and knowledge of HPV and the HPV vaccine, (2) high confidence that parent can get the vaccine for their eligible child and (3) lack of provider recommendation as the main barrier to vaccination. Children of Latino immigrant parents could benefit from increased provider recommendation for the HPV vaccine while providing tailored HPV information to parents.