Sara E. Golden

Distress and patient-centered communication among veterans with incidental (not screen-detected) pulmonary nodules. A cohort study.

RATIONALE Incidental pulmonary nodule detection is postulated to cause distress, but the frequency and magnitude of that distress have not been reported. The quality of patient-clinician communication and the perceived risk of lung cancer may influence distress Objectives: To evaluate the association of communication processes with distress and the perceived risk of lung cancer using validated instruments. METHODS We conducted a prospective cohort study of patients with incidentally detected nodules who received care at one Department of Veterans Affairs Medical Center. We measured distress with the Impact of Event Scale and patient-centered communication with the Consultation Care Measure, both validated instruments. Risk of lung cancer was self-reported by participants. We used multivariable adjusted logistic regression to measure the association of communication quality with distress. MEASUREMENTS AND MAIN RESULTS Among 122 Veterans with incidental nodules, 23%, 12%, and 4% reported experiencing mild, moderate, and severe distress, respectively, at the time they were informed of the pulmonary nodule. Participant-reported risk of lung cancer was not associated with distress. In the adjusted model, high-quality communication was associated with decreased distress (odds ratio [OR] = 0.28, 95% confidence interval [CI] = 0.08-1.00, P = 0.05). Among participants who reported a risk of malignancy of 30% or less, high-quality communication was associated with decreased distress (OR = 0.15, 95% CI = 0.02-0.92, P = 0.04), but was not associated with distress for those who reported a risk greater than 30% (OR = 0.12 (95% CI = 0.00-3.97, P = 0.24), although the P value for interaction was not significant. CONCLUSIONS Veterans with incidental pulmonary nodules frequently reported inadequate information exchange regarding their nodule. Many patients experience distress after they are informed that they have a pulmonary nodule, and high-quality patient-clinician communication is associated with decreased distress. Communication strategies that only target improved knowledge of the risk of malignancy may not be sufficient to reduce the distress associated with nodule detection.

The use of acetazolamide during pregnancy in intracranial hypertension patients.

Background:Acetazolamide is the mainstay of medical therapy for idiopathic intracranial hypertension (IIH). Its use in pregnant women has not been recommended because of reported teratogenic effects in rodents and rabbits. However, the safety of acetazolamide use during human pregnancy remains unclear. We report the pregnancy and offspring outcomes in women with intracranial hypertension (IH) treated with acetazolamide during pregnancy. Methods:Data were collected through questionnaires sent to patients with IH and their physicians. The questionnaires focused on IH diagnosis, obstetric history and outcomes, and pediatric outcomes. Results:A total of 101 women with IH were consented (total of 158 pregnancies) and acetazolamide usage before 13 weeks of gestation was reported in 50 pregnancies. The risk of spontaneous abortion was similar to the control group and no major complication was identified in the offspring of women treated with acetazolamide. Conclusion:There is no convincing evidence for an adverse effect for acetazolamide use in human pregnancy, even when prescribed prior to the 13th week of gestation. While the liberal use of acetazolamide should be avoided during pregnancy, this medication should remain a treatment option in pregnant women when clinically indicated.

'I still don't know diddly': a longitudinal qualitative study of patients' knowledge and distress while undergoing evaluation of incidental pulmonary nodules.

Background:Hundreds of thousands of incidental pulmonary nodules are detected annually in the United States, and this number will increase with the implementation of lung cancer screening. The lengthy period for active pulmonary nodule surveillance, often several years, is unique among cancer regimens. The psychosocial impact of longitudinal incidental nodule follow-up, however, has not been described.Aims:We sought to evaluate the psychosocial impact of longitudinal follow-up of incidental nodule detection on patients.Methods:Veterans who participated in our previous study had yearly follow-up qualitative interviews coinciding with repeat chest imaging. We used conventional content analysis to explore their knowledge of nodules and the follow-up plan, and their distress.Results:Seventeen and six veterans completed the year one and year two interviews, respectively. Over time, most patients continued to have inadequate knowledge of pulmonary nodules and the nodule follow-up plan. They desired and appreciated more information directly from their primary care provider, particularly about their lung cancer risk. Distress diminished over time for most patients, but it increased around the time of follow-up imaging for some, and a small number reported severe distress.Conclusions:In settings in which pulmonary nodules are commonly detected, including lung cancer screening programmes, resources to optimise patient-centred communication strategies that improve patients’ knowledge and reduce distress should be developed.

Patient and Clinician Characteristics Associated with Adherence. A Cohort Study of Veterans with Incidental Pulmonary Nodules

RATIONALE Many patients are diagnosed with small pulmonary nodules for which professional societies recommend subsequent imaging surveillance. Adherence to these guidelines involves many steps from both clinicians and patients but has not been well studied. OBJECTIVES In a health care setting with a nodule tracking system, we evaluated the association of communication processes and distress with patient and clinician adherence to recommended follow up and Fleischner Society guidelines, respectively. METHODS We conducted a prospective, longitudinally assessed, cohort study of patients with incidentally detected nodules who received care at one Veterans Affairs Medical Center. We measured patient-centered communication with the Consultation Care Measure and distress with the Impact of Event Scale. We abstracted data regarding participant adherence to clinician recommendations (defined as receiving the follow-up scan within 30 d of the recommended date) and clinician adherence to Fleischner guidelines (defined as planning the follow-up scan within 30 d of the recommended interval) from the electronic medical record. We measured associations of communication and distress with adherence using multivariable-adjusted generalized estimating equations. MEASUREMENTS AND MAIN RESULTS Among 138 veterans, 39% were nonadherent at least once during follow up. Clinicians were nonadherent to Fleischner guidelines for 27% of follow-up scans. High-quality communication (adjusted odds ratio, 3.65; P = 0.02) and distress (adjusted odds ratio, 0.38; P = 0.02) were associated with increased and decreased participant adherence, respectively. Neither was associated with clinician adherence. CONCLUSIONS Patients and clinicians often do not adhere to nodule follow-up recommendations. Interventions designed to improve communication quality and decrease distress may also improve patient adherence to nodule follow-up recommendations.

Dumping the information bucket: A qualitative study of clinicians caring for patients with early stage non-small cell lung cancer

OBJECTIVE To evaluate the quality of patient-clinician communication and shared decision making (SDM) when two disparate treatments for early stage non-small cell lung cancer (NSCLC) are discussed. METHODS We conducted a qualitative study to evaluate the experiences of 20 clinicians caring for patients with clinical Stage I NSCLC prior to treatment, focusing on communication practices. We used directed content analysis and a patient-centered communication theoretical model to guide understanding of communication strategies. RESULTS All clinicians expressed the importance of providing information, especially for mitigating patient worry, despite recognition that patients recall only a small amount of the information given. When patients expressed distress, clinicians exhibited empathy but preferred to provide more information in order to address patient concerns. Most clinicians reported practicing SDM, however, they also reported not clearly eliciting patient preferences and values, a key part of SDM. CONCLUSION Communication with patients about treatment options for early stage NSCLC primary includes information giving. We found that only a few communication domains associated with SDM occurred regularly, and SDM may not be necessary in this clinical context. PRACTICE IMPLICATIONS Clinicians may need to incorporate nurse navigators or more written materials for effectively discussing potentially equivalent treatment options with their patients.

“Even if I Don’t Remember, I Feel Better”. A Qualitative Study of Patients with Early-Stage Non–Small Cell Lung Cancer Undergoing Stereotactic Body Radiotherapy or Surgery

RATIONALE While surgical resection is recommended for most patients with early stage lung cancer according to the National Comprehensive Cancer Network guidelines, stereotactic body radiotherapy is increasingly being used. Provider-patient communication regarding the risks and benefits of each approach may be a modifiable factor leading to improved patient-centered outcomes. OBJECTIVES To qualitatively describe the experiences of patients undergoing either surgery or stereotactic body radiotherapy for early stage non-small cell lung cancer. METHODS We qualitatively evaluated and used content analysis to describe the experiences of 13 patients with early clinical stage non-small cell lung cancer before undergoing treatment in three health care systems in the Pacific Northwest, with a focus on knowledge obtained, communication, and feelings of distress. MEASUREMENTS AND MAIN RESULTS Although most participants reported rarely having been told about other options for treatment and could not readily recall many details about specific risks of recommended treatment, they were satisfied with their care. The patients paradoxically described clinicians as displaying caring and empathy despite not explicitly addressing their concerns and worries. We found that the communication domains that underlie shared decision making occurred infrequently, but that participants were still pleased with their role in the decision-making process. We did not find substantially different themes based on where the participant received care or the treatment selected. CONCLUSIONS Patients were satisfied with all aspects of their care, despite reporting little knowledge about risks or other treatment options, no direct elicitation of worries from providers, and a lack of shared decision making. While the development of effective communication strategies to address these gaps is warranted, their effect on patient-centered outcomes, such as distress and decisional conflict, is unclear.

Lung cancer specialists' opinions on treatment for stage I non-small cell lung cancer: A multidisciplinary survey

Purpose The current standard of care for surgically eligible stage I non-small cell lung cancer (NSCLC) is surgical resection, but emerging data suggest that stereotactic body radiation therapy (SBRT) is potentially as effective as surgery. However, specialist views of the current evidence about SBRT and how they would incorporate a randomized controlled trial (RCT) into practice is unclear. We sought to understand specialist opinions about evidence regarding treatment of stage I NSCLC and how this translates into practice and clinical trial implementation. Methods and materials We used a 28-item, web-based survey that invited all participating providers from the American Society for Radiation Oncology, American Thoracic Society Thoracic Oncology Assembly, and the International Association for the Study of Lung Cancer to share opinions regarding practice beliefs, treatment of stage I NSCLC, and a clinical trial scenario. Results A total of 959 surveys were completed; 64% were from radiation oncologists (ROs) and 49% were from outside the United States. The majority of ROs (80%) reported that current evidence indicates that SBRT has the same or a better benefit compared with surgery for surgically eligible patients with stage I NSCLC; 28% of non–radiation oncologists (NROs) indicated the same (P < .01). Almost all ROs (94%), compared with 62% of NROs, would permit surgically eligible patients to enroll in an RCT of SBRT versus surgery (P < .01). Most ROs (82%) and NROs (87%) believed that changing practice in thoracic surgery would be somewhat difficult, very difficult, or impossible (P = .066) even if an RCT showed better survival with SBRT. Conclusions NROs believe that SBRT is much less effective than surgery, contrary to ROs, who believe that they are similar. Most would support an RCT, but NROs would do so less. Changes in surgical practice may be challenging even if an RCT shows better mortality and quality of life with SBRT. These results are helpful in the creation and dissemination of RCTs that are designed to understand this question.

Rationale and Design of the Lung Cancer Screening Implementation. Evaluation of Patient-Centered Care Study

Screening for lung cancer using low-dose computed tomography has been demonstrated to reduce lung cancer-related mortality and is being widely implemented. Further research in this area is needed to assess the impact of screening on patient-centered outcomes. Here, we describe the design and rationale for a new study entitled Lung Cancer Screening Implementation: Evaluation of Patient-Centered Care. The protocol is composed of an interconnected series of studies evaluating patients and clinicians who are engaged in lung cancer screening in real-world settings. The primary goal of this study is to evaluate communication processes that are being used in routine care and to identify best practices that can be readily scaled up for implementation in multiple settings. We hypothesize that higher overall quality of patient-clinician communication processes will be associated with lower levels of distress and decisional conflict as patients decide whether or not to participate in lung cancer screening. This work is a critical step toward identifying modifiable mechanisms that are associated with high quality of care for the millions of patients who will consider lung cancer screening. Given the enormous potential benefits and burdens of lung cancer screening on patients, clinicians, and the healthcare system, it is important to identify and then scale up quality communication practices that positively influence patient-centered care.

Incidence of Suicide and Association with Palliative Care among Patients with Advanced Lung Cancer

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“It wasn’t as bad as I thought it would be”: a qualitative study of early stage non-small cell lung cancer patients after treatment

ObjectiveWhile surgical resection is recommended for most patients with early stage lung cancer, stereotactic body radiotherapy (SBRT) is being increasingly utilized. Provider-patient communication regarding risks/benefits of each approach may be a modifiable factor leading to improved patient-centered outcomes. Our objective was to determine a framework and recommended strategies on how to best communicate with patients with early stage non-small cell lung cancer (NSCLC) in the post-treatment setting. We qualitatively evaluated the experiences of 11 patients with early clinical stage NSCLC after treatment, with a focus on treatment experience, knowledge obtained, communication, and recommendations. We used conventional content analysis and a patient-centered communication theoretical model to guide our understanding.ResultsFive patients received surgery and six received SBRT. Both treatments were generally well-tolerated. Few participants reported communication deficits around receiving follow-up information, although several had remaining questions about their treatment outcome (mainly those who underwent SBRT). They described feeling anxious regarding their first surveillance CT scan and clinician visit. Overall, participants remained satisfied with care because of implicit trust in their clinicians rather than explicit communication. Communication gaps remain but may be addressed by a trusting relationship with the clinician. Patients recommend clinicians give thorough explanations and personalize when possible.