“I’m Putting My Trust in Their Hands”
2020; Elsevier BV; Volume: 158; Issue: 3 Linguagem: Inglês
10.1016/j.chest.2020.02.072
ISSN1931-3543
AutoresSara E. Golden, Sarah Ono, Sujata Thakurta, Renda Soylemez Wiener, Jonathan M. Iaccarino, Anne C. Melzer, Santanu Datta, Christopher G. Slatore,
Tópico(s)Radiology practices and education
ResumoBackgroundLung cancer screening (LCS) using low-dose CT imaging is recommended for people at high risk of dying of lung cancer. Communication strategies for clinicians have been recommended, but their influence on patient-centered outcomes is unclear.Research QuestionHow do patients experience communication and decision-making with clinicians when offered LCS?Study Design and MethodsWe performed semistructured interviews with 51 patients from three institutions with established LCS programs. We focused on communication domains such as information exchange, patient as person, and shared decision-making. Using conventional content analysis, we report on patients' assessment of information, reasons for (dis)satisfaction, distress, and role in the decision-making process.ResultsParticipants recalled few specific harms or benefits of screening, but uniformly reported satisfaction with the amount of information provided. All participants reported that clinicians did not explicitly ask about their values and preferences and about one-half reported some distress in anticipation of screening results. Almost all participants were satisfied with their role in the decision-making process. Despite participants' reporting that they did not experience all aspect of shared decision-making as defined, they reported high levels of trust in clinicians, which may relate to their largely positive reactions to the LCS decision interaction through the patient as person domain of communication.InterpretationAlthough decision-making for lung cancer screening as currently practiced may not meet all criteria of high-quality communication, patients in our sample are satisfied with the process, and report high trust in clinicians. Patients may place greater importance on interpersonal aspects of communication rather than information exchange. Lung cancer screening (LCS) using low-dose CT imaging is recommended for people at high risk of dying of lung cancer. Communication strategies for clinicians have been recommended, but their influence on patient-centered outcomes is unclear. How do patients experience communication and decision-making with clinicians when offered LCS? We performed semistructured interviews with 51 patients from three institutions with established LCS programs. We focused on communication domains such as information exchange, patient as person, and shared decision-making. Using conventional content analysis, we report on patients' assessment of information, reasons for (dis)satisfaction, distress, and role in the decision-making process. Participants recalled few specific harms or benefits of screening, but uniformly reported satisfaction with the amount of information provided. All participants reported that clinicians did not explicitly ask about their values and preferences and about one-half reported some distress in anticipation of screening results. Almost all participants were satisfied with their role in the decision-making process. Despite participants' reporting that they did not experience all aspect of shared decision-making as defined, they reported high levels of trust in clinicians, which may relate to their largely positive reactions to the LCS decision interaction through the patient as person domain of communication. Although decision-making for lung cancer screening as currently practiced may not meet all criteria of high-quality communication, patients in our sample are satisfied with the process, and report high trust in clinicians. Patients may place greater importance on interpersonal aspects of communication rather than information exchange. FOR EDITORIAL COMMENT, SEE PAGE 860Lung cancer screening (LCS) using low-dose CT (LDCT) imaging reduces the relative risk of lung cancer mortality1Humphrey L.L. Deffebach M. Pappas M. et al.Screening for lung cancer with low-dose computed tomography: a systematic review to update the US Preventive Services Task Force recommendation.Ann Intern Med. 2013; 159: 411-420Crossref PubMed Scopus (416) Google Scholar, 2International Association for the Study of Lung Cancer (IASLC)NELSON study shows CT screening for nodule volume management reduces lung cancer mortality by 26 percent in men.https://wclc2018.iaslc.org/media/2018%20WCLC%20Press%20Program%20Press%20Release%20De%20Koning%209.25%20FINAL%20.pdfDate accessed: April 27, 2020Google Scholar, 3Aberle D.R. Adams A.M. et al.Reduced lung-cancer mortality with low-dose computed tomographic screening.N Engl J Med. 2011; 365: 395-409Crossref PubMed Scopus (6878) Google Scholar and is widely recommended.4Jaklitsch M.T. Jacobson F.L. Austin J.H.M. et al.The American Association for Thoracic Surgery guidelines for lung cancer screening using low-dose computed tomography scans for lung cancer survivors and other high-risk groups.J Thorac Cardiovasc Surg. 2012; 144: 33-38Abstract Full Text Full Text PDF PubMed Scopus (488) Google Scholar, 5Moyer V.A. Screening for lung cancer: U.S. Preventive Services Task Force recommendation statement.Ann Intern Med. 2014; 160: 330-338Crossref PubMed Google Scholar, 6Wender R. Fontham E.T.H. Barrera E. et al.American Cancer Society lung cancer screening guidelines: American Cancer Society lung cancer screening guidelines.CA Cancer J Clin. 2013; 63: 106-117Crossref Scopus (563) Google Scholar LCS has been adopted slowly,7Jemal A. Fedewa S.A. Lung cancer screening with low-dose computed tomography in the United States—2010 to 2015.JAMA Oncol. 2017; 3: 1278-1281Crossref PubMed Scopus (342) Google Scholar, 8Huo J. Shen C. Volk R.J. Shih Y.T. 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Bolton R. et al.Evaluations of implementation at early-adopting lung cancer screening programs: lessons learned.Chest. 2017; 152: 70-80Abstract Full Text Full Text PDF PubMed Scopus (36) Google Scholar, 20Lewis J.A. Petty W.J. Tooze J.A. et al.Low-dose CT lung cancer screening practices and attitudes among primary care providers at an academic medical center.Cancer Epidemiol Biomarkers Prev. 2015; 24: 664-670Crossref PubMed Scopus (105) Google Scholar For instance, many professional organizations recommend,5Moyer V.A. Screening for lung cancer: U.S. Preventive Services Task Force recommendation statement.Ann Intern Med. 2014; 160: 330-338Crossref PubMed Google Scholar,21Wiener R.S. Gould M.K. Arenberg D.A. et al.An official American Thoracic Society/American College of Chest Physicians policy statement: implementation of low-dose computed tomography lung cancer screening programs in clinical practice.Am J Respir Crit Care Med. 2015; 192: 881-891Crossref PubMed Scopus (173) Google Scholar,22Detterbeck F.C. Mazzone P.J. Naidich D.P. Bach P.B. Screening for lung cancer: diagnosis and management of lung cancer: American College of Chest Physicians evidence-based clinical practice guidelines.Chest. 2013; 143: e78S-e92SAbstract Full Text Full Text PDF PubMed Scopus (352) Google Scholar and some, like the Centers for Medicare and Medicaid Services,23Jensen T.S. Chin J. Ashby L. Hermansen J. Hutter J.D. Centers for Medicare & Medicaid ServicesDecision Memo for Screening for Lung Cancer With Low Dose Computed Tomography (LDCT) (CAG-00439N). February 5, 2015.https://www.cms.gov/medicare-coverage-database/details/nca-decision-memo.aspx?NCAId=274Date accessed: April 29, 2020Google Scholar require a structured decision-making approach that includes the use of decision aids. Little is known about patient satisfaction and the use of decision aids, the decision-making process, and importantly, the reasons that might explain patients' reactions to LCS decision-making. FOR EDITORIAL COMMENT, SEE PAGE 860 Shared decision-making (SDM) discussions involve multiple patient-centered communication (PCC) domains: (1) adequate information exchange about the benefits and harms; (2) consideration of the individual "patient as person," which includes an assessment of a patient's preferences and values; and (3) a resulting decision that is shared between patients and clinicians as much as the patient desires,24Mead N. Bower P. Patient-centredness: a conceptual framework and review of the empirical literature.Soc Sci Med. 2000; 51: 1087-1110Crossref PubMed Scopus (1889) Google Scholar all while using a structured decision aid to facilitate the discussion.23Jensen T.S. Chin J. Ashby L. Hermansen J. Hutter J.D. Centers for Medicare & Medicaid ServicesDecision Memo for Screening for Lung Cancer With Low Dose Computed Tomography (LDCT) (CAG-00439N). February 5, 2015.https://www.cms.gov/medicare-coverage-database/details/nca-decision-memo.aspx?NCAId=274Date accessed: April 29, 2020Google Scholar Organizations emphasize the importance of SDM during encounters when patients and clinicians decide whether to screen, considering individual characteristics and personal values and preferences.25Smith R.A. Manassaram-Baptiste D. Brooks D. et al.Cancer screening in the United States, 2015: a review of current American Cancer Society guidelines and current issues in cancer screening.CA Cancer J Clin. 2015; 65: 30-54Crossref PubMed Scopus (289) Google Scholar,26Sheridan S.L. Harris R.P. Woolf S.H. Shared Decision-Making Workgroup of the U.S. Preventive Services Task ForceShared decision making about screening and chemoprevention. a suggested approach from the U.S. Preventive Services Task Force.Am J Prev Med. 2004; 26: 56-66Abstract Full Text Full Text PDF PubMed Scopus (336) Google Scholar Benefits and harms must be explained in ways that patients understand. Some patients may have a preference for how much information they need. Indeed, SDM is a process that includes the following: the elicitation of the patient's preferences for the type and amount of information exchanged, the degree to which the clinician explicitly includes the patient's own values and preferences, and the amount of control the patient desires when making the actual decision.27Sullivan D.R. Golden S.E. Ganzini L. Wiener R.S. Eden K.B. Slatore C.G. Association of decision-making with patients' perceptions of care and knowledge during longitudinal pulmonary nodule surveillance.Ann Am Thorac Soc. 2017; 14: 1690-1696Crossref PubMed Scopus (12) Google Scholar,28Levinson W. Kao A. Kuby A. Thisted R.A. Not all patients want to participate in decision making: a national study of public preferences.J Gen Intern Med. 2005; 20: 531-535Crossref PubMed Scopus (836) Google Scholar Improved patient-clinician communication and use of SDM can lead to greater patient knowledge, satisfaction, and adherence to treatment plans, and improved health outcomes.29Legare F. Adekpedjou R. Stacey D. et al.Interventions for increasing the use of shared decision making by healthcare professionals.Cochrane Database Syst Rev. 2018; 7: CD006732PubMed Google Scholar Nevertheless, some reports indicate that the decision-making process in cancer care may be falling short of reaching its goals.30Brenner A.T. Malo T.L. Margolis M. et al.Evaluating shared decision making for lung cancer screening.JAMA Intern Med. 2018; 178: 1311-1316Crossref PubMed Scopus (113) Google Scholar,31Hawley S.T. Jagsi R. Shared decision making in cancer care: does one size fit all?.JAMA Oncol. 2015; 1: 58-59Crossref PubMed Scopus (16) Google Scholar In this qualitative study on this topic, to our knowledge the largest to date, we aimed to evaluate patient information needs, subjective reasons for (dis)satisfaction with the decision-making process, any associated distress, and patients' role in the decision-making process. We focused on three domains of PCC24Mead N. Bower P. Patient-centredness: a conceptual framework and review of the empirical literature.Soc Sci Med. 2000; 51: 1087-1110Crossref PubMed Scopus (1889) Google Scholar: information exchange (information sharing between clinician and patient), patient as person (consideration of patient's values and preferences), and sharing of power and responsibility through SDM. We chose these domains on the basis of previous communication work,32Miranda L.S. Datta S. Melzer A.C. et al.Rationale and design of the lung cancer screening implementation: evaluation of patient-centered care study.Ann Am Thorac Soc. 2017; 14: 1581-1590Crossref PubMed Scopus (12) Google Scholar as well as current qualitative work with clinicians offering LCS,33Melzer A.C. Golden S.E. Ono S.S. Datta S. Crothers K. Slatore C.G. What exactly is shared decision-making? A qualitative study of shared decision-making in lung cancer screening.J Gen Intern Med. 2020; 35: 546-553Crossref PubMed Scopus (20) Google Scholar that found these three domains to be main themes. They are also the core domains of SDM as recommended by Centers for Medicare and Medicaid Services, American Thoracic Society, and American College of Chest Physicians guidelines.5Moyer V.A. Screening for lung cancer: U.S. Preventive Services Task Force recommendation statement.Ann Intern Med. 2014; 160: 330-338Crossref PubMed Google Scholar,21Wiener R.S. Gould M.K. Arenberg D.A. et al.An official American Thoracic Society/American College of Chest Physicians policy statement: implementation of low-dose computed tomography lung cancer screening programs in clinical practice.Am J Respir Crit Care Med. 2015; 192: 881-891Crossref PubMed Scopus (173) Google Scholar,22Detterbeck F.C. Mazzone P.J. Naidich D.P. Bach P.B. Screening for lung cancer: diagnosis and management of lung cancer: American College of Chest Physicians evidence-based clinical practice guidelines.Chest. 2013; 143: e78S-e92SAbstract Full Text Full Text PDF PubMed Scopus (352) Google Scholar We conducted a prospective, qualitative study to evaluate patients' experiences after a clinical visit where a clinician considered a patient for LCS with an LDCT scan (methodology previously published).32Miranda L.S. Datta S. Melzer A.C. et al.Rationale and design of the lung cancer screening implementation: evaluation of patient-centered care study.Ann Am Thorac Soc. 2017; 14: 1581-1590Crossref PubMed Scopus (12) Google Scholar We recruited patients from three medical centers with established LCS programs: the Veterans Affairs (VA) Portland Health Care System (Portland, OR), the Minneapolis VA Medical Center (Minneapolis, MN), and the Duke University Medical Center (Durham, NC). We obtained institutional review board approval at each site (VA Portland, #3482; Minneapolis VA, #4645-B; Duke, #Pro00073394). The baseline interview occurred after a clinician considered a patient eligible for, and before the patient received, an LDCT scan (if the patient decided to undergo screening). We contacted potential participants after documentation or personal confirmation from the relevant clinician that screening was discussed with the patient. This interaction is commonly referred to as the "SDM discussion," but because one of our goals was to determine if patients interpret this interaction as a "discussion," we hereafter refer to it as the "LCS decision interaction." On the basis of our knowledge of each site's LCS program and our recruitment strategy that has been reported previously,32Miranda L.S. Datta S. Melzer A.C. et al.Rationale and design of the lung cancer screening implementation: evaluation of patient-centered care study.Ann Am Thorac Soc. 2017; 14: 1581-1590Crossref PubMed Scopus (12) Google Scholar,33Melzer A.C. Golden S.E. Ono S.S. Datta S. Crothers K. Slatore C.G. What exactly is shared decision-making? A qualitative study of shared decision-making in lung cancer screening.J Gen Intern Med. 2020; 35: 546-553Crossref PubMed Scopus (20) Google Scholar we believe that almost all participants spoke with an LCS coordinator (or equivalent) before ultimately deciding to accept or decline the LDCT imaging. In brief, both the Minneapolis and Portland VA sites use clinical reminders in the electronic medical record to identify potentially eligible patients. The primary care provider (PCP) then introduces LCS to the patient, and refers patients to the LCS coordinator. At Duke, the patient flow to the LCS coordinator can happen in multiple ways, but the patients included in this study were first referred by their PCP to a smoking cessation counselor (either an advanced practice nurse or certified physician's assistant) who acted as the LCS coordinator. Of importance for this analysis, the smoking cessation coordinators at Duke performed the same duties as the dedicated LCS coordinators at the VA facilities and are referred to as such. LCS coordinators performed the decision-making interaction and ordered the LDCT scans for patients who agreed to screening. Although it was impossible to confirm for each participant, LCS coordinators at all three sites reported routinely providing decision aids to patients considering LCS (e-Appendix 1, based on clinician interviews).33Melzer A.C. Golden S.E. Ono S.S. Datta S. Crothers K. Slatore C.G. What exactly is shared decision-making? A qualitative study of shared decision-making in lung cancer screening.J Gen Intern Med. 2020; 35: 546-553Crossref PubMed Scopus (20) Google Scholar We included patients who were eligible for LCS on the basis of their local institution's criteria (similar to US Preventive Services Task Force eligibility criteria),32Miranda L.S. Datta S. Melzer A.C. et al.Rationale and design of the lung cancer screening implementation: evaluation of patient-centered care study.Ann Am Thorac Soc. 2017; 14: 1581-1590Crossref PubMed Scopus (12) Google Scholar with enrollment limited to English speakers. We developed a semistructured interview guide (e-Appendix 2) based on a model of PCC (Fig 1)24Mead N. Bower P. Patient-centredness: a conceptual framework and review of the empirical literature.Soc Sci Med. 2000; 51: 1087-1110Crossref PubMed Scopus (1889) Google Scholar with a focus on information exchange, patient as person, and sharing of power and responsibility through SDM. We did not focus on decisional regret after the LDCT imaging as this aspect will be investigated in subsequent analyses of interviews conducted after the LDCT imaging results are received.32Miranda L.S. Datta S. Melzer A.C. et al.Rationale and design of the lung cancer screening implementation: evaluation of patient-centered care study.Ann Am Thorac Soc. 2017; 14: 1581-1590Crossref PubMed Scopus (12) Google Scholar Participants self-reported demographic characteristics, comorbidities, and smoking status. All interviews were conducted by an experienced qualitative analyst (S. E. G.) primarily by phone, lasting approximately 30 minutes each. Each participant is identified in this article by a randomly assigned number identifier after each quotation. We quantified the amount of knowledge a participant had about LCS by determining if she/he could respond correctly to at least one of the following questions that related to information found on decision aids: (1) Please name a benefit of undergoing LCS; and (2) Please name a risk of undergoing LCS. When querying about the decision-making interaction, we described SDM as: "when the clinician provides information, asks about your values and preferences, you respond and ask any questions of your own, then you both discuss and come to a decision together." We described SDM as a process and discussed if it occurred and how the decision was actually made (eg, patient and clinician vs clinician alone). We used conventional content analysis34Hsieh H.F. Shannon S.E. Three approaches to qualitative content analysis.Qual Health Res. 2005; 15: 1277-1288Crossref PubMed Scopus (21529) Google Scholar and a PCC model to guide our analysis. We achieved saturation of the three main themes.35Patton M. Designing qualitative studies.in: Qualitative Research & Evaluation Methods. 3rd ed. Sage Publications, Thousand Oaks, CA2002: 209Google Scholar,36Pope C. Ziebland S. Mays N. Analysing qualitative data.in: Pope C. Mays N. Qualitative Research in Health Care. 3rd ed. Blackwell Publishing, Malden, MA2006: 63Crossref Scopus (214) Google Scholar We used ATLAS.ti 7.1.7 (ATLAS.ti GmbH) to organize data and support analysis. The qualitative analyst (S. E. G.) first read each completed transcript to become familiar with the content and develop a preliminary codebook, although some preliminary codes were prespecified as key concepts based on the interview guide. Coding was completed by two reviewers (S. E. G., S. G. T.), with another experienced qualitative analyst (S. S. O.) reviewing every fifth transcript (10%). We discussed the findings and tabulated, refined, and recoded transcripts as needed. We resolved differences through consensus. We interviewed 51 participants; 43 (84%) who elected to pursue screening and eight (16%) who did not (e-Fig 1). Our interviews of patients who declined screening may not have reached saturation. Most participants were white (80%) and male (76%) (Table 1). There were no thematic differences by location, except that participants from Duke often received smoking cessation materials at the same time as information about LCS and frequently recalled receiving only the cessation materials. The time between the decision interaction and interview varied by site; however, we did not find any qualitative differences based on site.Table 1Self-reported Patient Characteristics: n = 51CharacteristicNo. (%)aPercentages represent nonmissing data. or Mean (SD)Accepted LDCT imaging, No. (%)43 (84)Treatment location, No. (%) VA Portland Health Care System19 (39) VA Minneapolis18 (35) Duke University14 (26)Days after SDM (interview), mean (SD) VA Portland Health Care System20.5 (16.6) VA Minneapolis75.8 (60.6) Duke University10.4 (4.9) All sites35.6 (27.4)Age, mean (SD), y63 (5.83)Sex, No. (%) Male39 (76)Race/ethnicity, No. (%) White41 (80) Black/African American6 (12) Hispanic2 (4) Refused2 (4)Marital status, No. (%) Married18 (35) Not married33 (65)Smoking status, No. (%) Current smoker33 (65) Former smoker18 (35)Average cigarettes per day, No. (%) 11-2028 (55) 21-3014 (27) 31 or more9 (18)Education, No. (%) High school or less20 (39) Some college or vocational work26 (51) College graduate or more5 (10)Employment status, No. (%) Retired, disabled, and/or currently not working31 (61) Employed (full time, part time, and/or irregular work)20 (39)Income, No. (%) $60,000 or more12 (23)Comorbidities (self-reported), No. (%)bPatients had the option of choosing more than one comorbidity. COPD14 (31) Depression19 (40) Posttraumatic stress disorder10 (22) Asthma3 (7)LDCT = low-dose CT imaging; SDM = shared decision-making; VA = Veterans Affairs.a Percentages represent nonmissing data.b Patients had the option of choosing more than one comorbidity. Open table in a new tab LDCT = low-dose CT imaging; SDM = shared decision-making; VA = Veterans Affairs. More than three-quarters of the participants reported that their PCP was responsible for the LCS decision interaction. Almost all reported that they did not view the interaction with their provider as a "discussion." Participants recalled similar amounts of information regardless of who offered or discussed LCS. A typical response when asked if they could recall the interaction was: I don't remember much about what [the clinician] said… (10) Just over one-half of participants remembered receiving a decision aid. Of the 28 participants who reported receiving a decision aid 17 read it and of those, 10 reported it was helpful (Table 2). Participants overall could not recall much information about the harms of LCS: I just don't see a downside to it. (23)Table 2Selected QuotationsSubject IDQuotationInformation Exchange1Not really, I don't remember…. There was nothing more in [the decision aid] than when I talked over the phone to the gal who first set me up.5I'm not a well reader so I kinda get bored after a bit…. I don't know if [the decision aid] is confusing or if it's me that's being lazy.6[The decision aid] just explained to me why you're doing the study and the benefit of it and what not. And other than that, I mean… I think that's all it is.14I did look at [the materials] but I really didn't pay that much attention.21[The risks] are minimal other than the emotional.Patient as Person10I just got the impression from the conversation I had with [my clinician] that well, okay if we do see something we're not sure what it is, we're going to have to investigate that and everything like that. So, I'm a little bit timid about whether or not they make the right call.20It's up to the doctor to know the patient well enough to be able to tell if that's the person that wants to be led or wants to simply be informed to be able to make their own decision.23Yes, it is very safe to say… I extremely trust [my doctor].26They've been trained… and I'm putting my trust in their hands.31Everything in life is 50/50. It's either gonna [be cancer] or it ain't. So worrying about it isn't going to do a damn bit any good. It will put even more gray hair on my head than I already have.Decision-making3I am firm believer in teamwork. I think the biggest factor is educating myself.28I'm not the one that needs a lot of [information]. Give me just one sentence like, "Hey, you should have it done because…" and I'll do it.21No, I don't want a doctor that makes a decision for me. I think that's something we have to agree on. They might be able to convince me to do something, but I need to have input!31… [My doctor] presented [LCS] and said you know, "some people like it, some people don't. There's advantages and disadvantages to it." She explained them and gave me the pamphlet and I brought it home and talked it over with the little missus and we decided that it wasn't something that we wanted to do.LCS = lung cancer screening. Open table in a new tab LCS = lung cancer screening. We directly queried participants if clinicians should provide more information to patients about LCS or if they had lingering questions. All participants were satisfied with the amount of information received. They also said it, "sounds okay," if patients do not know much information as long as they are satisfied with the decision-making process. We asked participants why they were satisfied despite not knowing much and they overwhelmingly responded that they were confident they could obtain more information if needed. No participants reported that their clinician explicitly asked about their values and preferences, or about how much information they actually wanted. Participants were not disturbed by this exclusion since they felt that their PCP implicitly understood their values and preferences (Table 2). Almost one-half reported that they already had at least some distress (none severe) while anticipating the LDCT imaging results, mostly regarding a cancer diagnosis: I am apprehensive [about the results] because yeah, if I've got cancer then I've got numbered days. (19) On occasion, participants reported mild distress about anticipating the results from the possibility of having a pulmonary nodule (Table 2). Those participants who reported they were not distressed agreed that it was due to trust in their clinician and/or the health-care system to follow up and take car
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