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Available online at www.sciencedirect.com
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Decision-making and cancer screening: A qualitative study of older adults with multiple chronic conditions Cary P. Grossa,b,⁎, Terri R. Frieda,b , Mary E. Tinettia,b , Joseph S. Rossa,b , Inginia Genaoa,b , Sabina Hossaina,b , Elizabeth Wolf a,b , Carmen L. Lewisb,c,1 a
Cancer Outcomes, Public Policy, and Effectiveness Research (COPPER) Center, Yale Cancer Center, USA Sections of General Internal Medicine and Geriatrics, Department of Internal Medicine, Yale University School of Medicine, USA c Division of General Medicine, University of Colorado School of Medicine, USA b
AR TIC LE I N FO
ABS TR ACT
Article history:
Objective: To understand how older persons with multiple chronic conditions (MCC) approach
Received 23 June 2014
decisions about cancer screening.
Received in revised form
Materials and Methods: We conducted interviews with adults > 65 years old with at least
29 October 2014
two chronic conditions who were taking ≥ five medications daily. Patients were first asked
Accepted 1 December 2014
how age and multimorbidity influence their cancer screening decisions. After showing
Available online 17 December 2014
them an educational prompt that explained the relationship between life expectancy and the benefits of cancer screening, respondents were then asked about screening in the
Keywords:
context of specific health scenarios. Using grounded theory, three independent readers
Cancer screening
coded responses for salient themes. Sample size was determined by thematic saturation.
Geriatrics
Results: Most respondents (26 of 28) initially indicated that their overall health or medical
Decision-making
conditions do not influence their cancer screening decisions. After viewing the educational
Heuristics
prompt, respondents described two broad approaches to cancer screening in the setting
Risk assessment
of increasing age or multi-morbidity. The first was a “benefits versus harms” approach in which participants weighed direct health benefits (e.g. reducing cancer incidence or mortality) and harms (e.g. complications or inconvenience). The second was a heuristic approach. Some heuristics favored screening, such as a persistent belief in unspecified benefits from screening, value of knowledge about cancer status, and not wanting to “give up”, whereas other heuristics discouraged screening, such as fatalism or a reluctance to learn about their cancer status. Conclusions: When considering cancer screening, some older persons with MCC employ heuristics which circumvent the traditional quantitative comparison of risks and benefits, providing an important challenge to informed decision making. © 2014 Elsevier Ltd. All rights reserved.
⁎ Corresponding author at: 333 Cedar Street, PO Box 208025, New Haven, CT 06520-8025, USA. Tel.: + 1 203 688 8588; fax: +1 203 688 4092. E-mail addresses: [email protected] (C.P. Gross), [email protected] (T.R. Fried), [email protected] (M.E. Tinetti), [email protected] (J.S. Ross), [email protected] (I. Genao), [email protected] (S. Hossain), [email protected] (E. Wolf), [email protected] (C.L. Lewis). 1 Division of General Internal Medicine, Department of Medicine, University of Colorado School of Medicine, Mail Stop B180, Academic Office 1, Room 8415, 12631 E. 17th Ave., Aurora, CO 80045. Tel.: +1 303 724 8285; fax: + 1 303 724 2270.
http://dx.doi.org/10.1016/j.jgo.2014.12.001 1879-4068/© 2014 Elsevier Ltd. All rights reserved.
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1. Introduction Increasing age and the presence of multiple chronic conditions (MCC) are associated with a diminishing benefit from cancer screening.1–3 Because the time at risk for developing cancer is decreased, patients with shorter life expectancies are less likely to benefit from screening.4,5 Additionally, older and sicker patients may be more likely to experience screening-related harms.6 Despite guideline recommendations to align the use of cancer screening tests with likelihood of benefit, studies have consistently demonstrated “overuse” of cancer screening tests among older persons with multimorbidity.1,7–12 Patient demand likely contributes to screening overuse. Attitudes of older persons regarding cancer screening appear to be positive, with most individuals desiring screening.13–16 However, little research has examined the basis for these positive attitudes and the decision-making process of cancer screening in older persons. Some evidence indicates that the public may not be aware of potential harms that result from cancer screening.17 One approach to addressing this mismatch between the desire for cancer screening and the likelihood of benefit is to better inform older patients about the risks and benefits. Studies in other clinical settings have demonstrated that patient education can decrease utilization.18,19 Although prior work has elicited older persons' opinions about cancer screening, it is unclear whether they understand why screening may not be beneficial in the context of MCC.20 Therefore, we conducted a qualitative study of how older persons with MCC approach cancer screening, that incorporated an educational intervention designed to explain the importance of life expectancy and health status on the potential benefits of screening.
2. Methods Participants were identified from an academic Internal Medicine clinic and an independent retirement community. They had to be at least 65 years of age and self-report having at least two chronic illnesses, and taking at least five prescription medications daily. The participant population was constructed using purposive sampling to ensure heterogeneity with regard to race and recent screening test use. Participants who had a cancer diagnosis within the previous five years or who had evidence of cognitive impairment as determined by the Short Portable Mental Status Questionnaire, were excluded.21 Prior to initiating the study, it was approved by Yale University's Human Investigations Committee. The semi-structured interviews lasted about 20–25 min and were recorded and transcribed verbatim. The interview guide included items assessing participants' health conditions and severity, and an educational tool that described the purpose of cancer screening and the relation between life expectancy and potential to benefit from screening (Appendix A). This tool was developed using an iterative process, incorporating cognitive testing. After viewing the prompt, patients were asked about their feelings toward stopping screening if they had a limited life expectancy, or significant impairments to their daily functioning. Specifically, the instrument addressed a
clinical scenario: “… a patient who is older and has very bad lung disease, just walking to his front door makes him feel tired and breathless. His doctor believes that he will only live for a couple more years.” The instrument also included questions addressing screening decisions as applied in general, to a generic patient: “… why patients or doctors might decide to stop screening for cancer for people who are older or have serious illness” as well as “What other reasons can you think of that patients might choose not to do screening test for cancer.” In addition, more specific items regarding why the respondent him or herself might or might not elect to stop screening were included in the interview. Consistent use of the discussion guide, independent professional preparation of the transcripts, and standardized coding and analysis of the data were all employed.22–25 Data collection and analysis were an iterative process; an in-depth, grounded theory approach was utilized by three independent coders to identify salient themes.26 The coding structure was reviewed by the full study team for logic and breadth, and modified in an iterative manner. The final sample size was determined by thematic saturation.
3. Results Of the 28 participants, 23 were female and the majority was 65–75 years old (Table 1). Prior to viewing the educational prompt, the vast majority of participants (26 of 28; 96%) responded “no” when asked whether their overall health or medical conditions influence their cancer screening decisions. After viewing the educational prompt, respondents were asked whether medical conditions or health status would influence their own decision to undergo screening, even if they had a limited life expectancy. About 25% of the sample indicated that their health would influence their screening decision, while 14 people (52% of the sample) indicated that their health would not influence their screening decisions, and the remaining 25% were undecided. We found that participants adhered to at least one of two approaches when considering cancer screening. The “benefits vs. harms” approach was more structured and cognitive,
Table 1 – Participant characteristics. Characteristic
Number (%)
Sex Female Male
23 5
Age 65–75 76–85 >85 Unknown
16 1 6 5
(57%) (4%) (21%) (18%)
Race African American Caucasian Asian American Other Not reported
10 3 1 1 13
(36%) (11%) (4%) (4%) (46%)
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while the second approach was more intuitive, based on the use of heuristics rather than on a consideration of data. These heuristics were cognitive short-cuts that participants used to reach their decision about screening.
3.1. Benefits vs. Harm Approach When participants used the “benefits vs. harms” approach they thought about the impact of screening on their health in terms of positive consequences (benefits) and the potential for adverse consequences (harms; Table 2). Major “benefit” domains were the perceived risk of developing cancer including family history, and the benefits of early detection. Three domains comprised the harms of screening. Within the domain of “prior experience with screening”, participants discussed their own uncomfortable/painful experiences with cancer screening. This included responses such as, “I'm surprised I didn't have a tear or something. I mean, when I had my kids, I didn't hurt that bad…” A second domain involved prior personal experiences with adverse events or complications suffered during screening.
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For instance, one participant reported that “I had screening for colon cancer and the last time they did it on me…I had a seizure.” The third domain was “other logistical priorities superseding screening.” Patients focused on pragmatic considerations that increased the burdens of screening, including difficulty with transportation and the need to attend to other priorities deemed more important than screening. Cost was cited in two different domains. First, some participants cited that they may not have (or want to spend) additional money for screening tests. Alternatively, one patient expressed a societal perspective, saying “[they shouldn't be] spending exorbitant amounts of money on keeping me alive longer when there are so many younger people on whom I think the money should be spent.”
3.2. Incorporating Age and Multiple Chronic Conditions After viewing the educational prompt, some participants cited the effects of MCC on screening benefit; one participant stated, “… with all the other problems why would the screening help.” Others referred to the greater importance of
Table 2 – Benefits vs. harms approach. Benefits of screening Perception of being at risk for colon cancer Benefit of early detection
“My mother died of colon cancer so I figured since it seemed to be something that cancer seems to run in our family in one form or another and it would be safer to get it done.” “…It is better to have screening because then you would catch the cancer early.…I think that is a very good test that they can find cancer before it spreads..”
Harms of screening Discomfort/unpleasant nature of test
Prior adverse experience with testing (not physical discomfort) Concern about complications
“I'm surprised I didn't have a tear or something. I mean, when I had my kids, I didn't hurt that bad. They put me through torment hell when they give me that examination; that's the truth.” “… a lot of people say they went and “oh I didn't feel mine, but they give me a shot or they give something that kill the nerve.” They didn't give me nothing. Nothing, I mean nothing at all. … I mean, I never hurt so bad in my days, since I'm born in the world.” “I told them no, never again, because it hurt me so bad. The way she did the machine, squeezing, oh my god, I don't know why I didn't holler while I was there. But I just made myself not to complain too much, and I said no, never again. And I haven't taken one since.” “I think I don't know, I think it may be disgusting. That's the only reason why I didn't get it that thing can be disgusting.” “I had screening for colon cancer with the last time they did it on me, we tried to do it, I had a seizure.” “Well one particular reason [not to get screened] was I have a friend whose husband had screening then they punctured his rectum.” “I am 76 years old. My tissues are thin. It goes up your rectum with this little instrument and they could easily tear something up there and if that happens, they are going to have to operate on me. I do not feel that I may be able to survive that operation.”
Effect of age/health status on screening benefits and harms Lack of benefit
Other health priorities supersede screening Other logistical priorities supersede screening Cost — personal perspective Cost — societal perspective
“How much longer do I have, how much longer can I be here, you know, If you find cancer in my colon, how long do I have, am I going to let you operate? There is certain things that I feel that if I subject myself to, I cannot make it through that, so I will not subject myself to it.” “If I am older and have no more than five years to live, I probably would not go through it, you know I feel don't even (think it's) worth it.” “The current problems I have right now, that are on my plate, are such that the outlook is very pessimistic, I do not need to tackle another problem.” “Additional burden on the family” “It would be much harder for my daughter to be here, she probably could arrange it, but it is difficult, so I am just not looking into it, I am just putting it on the back burner.” “..might not have the money, again economics is a big factor.” “…spending exorbitant amounts of money for keeping me alive longer when there are so many younger people on whom I think the money should be spent.”
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other medical conditions, which would supersede screening: “I have got enough on my plate right now … I do not need to tackle another problem.” Concern about an increased risk of screening-related complications because of their age or health status was also cited by some participants; as one participant said, “I am 76 years old. My tissues are thin. It goes up your rectum with this little instrument and they could easily tear something….”
3.3. Heuristics Favoring Screening Five heuristic domains favored screening: belief in benefits from screening; value of knowledge about cancer status; not wanting to “give up”; prognostic skepticism; and enthusiasm for screening as part of routine health practices (Table 3). Regarding the first domain, some expressed the belief that the test must have some benefit even when presented with the information that it would not improve life expectancy or decrease the likelihood that cancer would cause health problems. As one participant expressed, “If you had reason for getting these screens then I think if you stop, then you really might be in danger.” Some participants expressed the value of knowing their cancer status, regardless of whether this knowledge would alter their treatment or clinical outcomes. They were avid for information about their body and overall health, regardless of age or other chronic medical conditions, making comments such as, “Well I think, if I had cancer, if the doctor told me tomorrow I had cancer, I would want to know more about it. And I would want to be treated whether it would save my life or not.”
Prognostic skepticism also affected decisions. When considering that patients who are older or sicker are less likely to benefit from cancer screening, some participants did not find the statistics personally applicable and rejected the idea of applying probabilities to their own decision-making. One participant stated, “You can be in poor health and still… live a long time. You can be in good health, and go away right away.” Finally, some participants expressed enthusiasm for screening as part of their routine health care, without focusing on specific cancer-related benefits (Table 3). Screening was conceptualized as something that one has to do, with one participant stating, “The way I'd stop is to die, I guess,” while another stated: “I don't think any doctor will stop me from having that test, I surely don't think so.”
3.4. Heuristics Discouraging Screening Three heuristic domains discouraged screening (Table 3). For the first category, fear of being diagnosed with cancer, patients might decline screening due to concerns that additional information (i.e. the screening test results) would be undesirable and anxiety-provoking. Some participants simply did not want to know or look for any type of medical problems. For others, the rationale for avoiding information was more specific to cancer: “Well, a lot of them are afraid you are going to find it. That's a lot of people who are afraid of cancer…. they would rather not know they got it.” A second heuristic was the feeling of being too “tired out” or overwhelmed by other factors to even think about cancer screening: “Well I think perhaps by then I would have given up on [screening] if I would just felt that weak.” Another
Table 3 – Heuristic approaches. Heuristics that favor screening Belief that test must have benefit “If you had reason for getting these screens then I think if you stop, then you really might be in danger.” “Because I'm thinking maybe they would find something that would help. You know, the more you find out, I feel like it would help me.” Desire for knowing whether “Because I don't know anything else that would make me feel better than to know that I'm healthy.” cancer is present “[Screening] would be so wise you know if that is inside of you, you should always know what is happening inside of you.” “At least [screening for cancer] would clear my mind that that's not part of the ailment.” “I would benefit real good. This way, I'll know. I'll know if I have to have an operation, I'll know if I got cancer or if I don't, you know. I would know how to prepare my life.” “Not giving up” “I feel like (stopping screening) would be giving up.” Prognostic skepticism “You can be in poor health and still be, live a long time. You can be in good health, and go away right away.” (i.e. “statistics don't apply to me”) “No. I believe that one really doesn't know for certain what the outcome is, and I don't think we should play God. So, I think whatever measures are reasonable… to do it.” Unbridled enthusiasm for “So much reading and talking about it everyone saying it is the thing to do, you should do it every year.” screening as part of routine “The way I'd stop is to die, I guess.” “I don't think any doctor will stop me from having that test, I surely don't think so.”
Heuristics that discourage screening Doesn't want to know/doesn't want to look for trouble Ready to go/ “tired out” Fatalism
“Well, a lot of them are afraid you are going to find it. That's a lot of people are afraid of cancer…. they rather not know they got it.” “To me some of them I think is afraid of those treatments they get, a lot of people are afraid of that chemo.” “Well I think perhaps by then I would have given up on (screening) if I would just felt that weak.” “You see the faith I have in God I guess makes me a lot different to some people to others. That way it was intended for it to happen. …I think it's just their time to go.” “Because we have certain amount of life span to live, the Lord say if we have strength you can live to three score and ten. So if I … am 90 years old, I would not bother.”
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participant expressed the concept in this manner: “Sometimes you just get tired of things, and he will figure [you aren't] going to get better anyhow, so [screening] wouldn't make any difference.” Third, some participants invoked a belief in the “will of the Lord” or fatalism, suggesting that their outcomes are predetermined, and that screening would not change them: “Because we have certain amount of life span to live, the Lord say if we have strength you can live to three score and ten. So if I … am 90 years old, I would not bother.”
4. Discussion We found that older persons with MCC employed two distinct thought processes in their approach to cancer screening. When our participants used the “benefits vs. harms” approach, they focused on the experience of undergoing a test, and the resulting direct impact on their health or financial well-being. This approach reflects the “data-driven” perspective that serves as a foundation for patient education and informed decision-making. Although the heuristic approach represents a marked departure from this traditional risk and benefits approach, the use of heuristics is consistent with current literature describing how people actually approach many decisions.27 That is, in contrast to the deliberate weighing of risks and benefits, people's thinking is actually often intuitive and based on emotion.28 It is important to note that participants used these heuristics even after receiving an educational prompt providing them with information about the decreased benefits of screening in the context of advanced age and multimorbidity. Our findings corroborate previous research showing that older adults favor continuous cancer screening,20 and provide objective data in support of theoretical concepts on cancer risk perception.29 These findings suggest that education alone may be insufficient to change older persons' behaviors regarding their own screening decisions. Important heuristics included a strong belief in cancer screening tests as beneficial above and beyond any cited evidence about benefits and risks. That is, there appeared to be an unwavering belief that “it's gotta be helpful somehow” to undergo screening. This attitude may arise from aggressive “pro-screening public health messaging campaigns”. Unfortunately, the emphasis on promoting cancer screening for age-eligible populations has overshadowed the need to develop appropriate educational interventions for patients unlikely to benefit from screening. Targeted educational efforts for older adults, and particularly for those with multiple morbidities, may offset the (strictly) positive view of cancer screening used to promote screening programs in younger adults. Future work should explore the impact of public service messages regarding cancer screening and whether they foster unrealistic expectations about screening benefits. Alternative approaches in educating patients could be helpful in this regard; some evidence indicates that materials that encourage central processing (i.e. problem solving, comprehension) may result in changing attitudes toward behaviors.30 Educational materials that are targeted based on individual characteristics such as health state may increase motivation to engage with the
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information leading to central processing. Further, simplifying these materials to decrease cognitive load may encourage central processing rather than peripheral processing or a heuristic approach.27 There are important limitations to consider. Although we continued interviews until thematic saturation, it is unclear that our participants or interview locations are representative of other patient populations. Further, the majority of our participants were female, reflecting the underlying demographics of the recruitment locations. Additionally, the respondents varied widely in their level of education and familiarity with health care. As a result, understanding of screening and other concepts discussed in the interviews was variable. Although this reflects the variability across patients in actual practice, future work should explore whether approaches to screening vary according to patient demographics, health literacy, or other factors. Limiting use of cancer screening by people for whom risks outweigh the benefits will allow patients to avoid unnecessary risk, discomfort, cost, and inconvenience. In this setting, the clinician's goal is to explain to the patient why a certain choice is more likely to provide greater clinical utility (i.e. not screening when clinical benefits are unlikely to accrue) than an alternative choice (i.e. to continue cancer screening).31,32 However, a physician's recommendation against screening, although potentially supported by clinical evidence, goes against prevailing practice patterns and may also go against older persons' expectations that they need screening. As a result, provider driven recommendations to ‘just say no’ to older adults with multimorbidity are unlikely to be successful if those older adults are not open to this information. Our findings highlight a key challenge in aligning screening test utilization with evidence, and with patient preferences. When considering cancer screening in the setting of increased age and multimorbidity, older persons consider not only the potential benefits and harms of screening, they also employ heuristics. Efforts to address overuse of screening, and ensuring that patients are able to make informed decisions will need to identify mechanisms to identify and address commonly-used heuristics that pre-empt informed decision-making. Using the domains identified in this study will be useful to guide future work to inform older persons and address the mismatch between screening behavior and likely benefit.
Funding This work was funded by the Agency for Healthcare Research and Quality grant 5R21HS018598.
Disclosures and Conflict of Interest Statements Drs. Gross and Ross have received support from Medtronic, Inc and Johnson and Johnson, Inc to develop methods of clinical trial data sharing. Dr. Gross has received research support from 21st Century Oncology.
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Author Contributions Concept and design: C Gross, T Fried, M Tinetti, I Genao, J Ross, C Lewis Data collection: S Hossain, E Wolf Analysis and interpretation of data: C Gross, T Fried, C Lewis Manuscript writing and approval: C Gross, T Fried, M Tinetti, I Genao, J Ross, C Lewis, S Hossain, E Wolf
Appendix A. Script and Visual Aids As mentioned earlier one of the goals of this study is to learn more about how patients' think about cancer screening. You probably already know what a cancer screening test is. It is a test that doctors can order to look for cancer while it is still very small and not causing any symptoms. For example, you may be familiar with mammograms; they are tests that women get periodically to check for breast cancer in the very early stages before a woman has experienced any symptoms from it. If doctors can find cancers while they are still small and have not yet spread, then they are more likely to be able to cure it. This is because if cancer is found early it is easier to treat. Although most people might think that everyone should always be screened for cancer with many tests, it is not that simple. Many people may benefit from screening for cancer, but I want to talk to you about situations in which people may not benefit from these tests. (see addendum 3 figures) The first thing to know about cancer is that it may grow very slowly. (Turning to Fig. 1a) In this figure, we have illustrated how cancers start out small without causing symptoms. After five years, the cancer will have grown large enough to cause symptoms and start affecting your health.
a
Fig. 2 – Figure demonstrating that early detection of cancer by screening test can detect a tumor prior to onset of symptoms.
(Turning to Fig. 1b) So, from this figure it is important to see that cancer takes a long time to grow and cause problems. In fact, it can actually take 5 years for a small early cancer to grow large enough to start affecting your health. Do you have any questions about this figure or anything that we have discussed up until this point? (Turning to Fig. 2) This figure shows us that a screening test allows us to detect a small cancer before it has progressed to a larger cancer that can affect your health. So, since cancer takes so long to grow, and it can be in your body for so long without you knowing it, your doctor might recommend a screening test periodically to make sure there is not a small cancer developing. Do you have any questions about this figure or anything that we have discussed up until this point? (Turning to Fig. 3) This figure shows us that by detecting cancer early, it can be treated while it is still small. When cancer is small and has not yet had the chance to spread, it is easier to treat and patients have a better chance of curing it. Therefore, by finding cancer early we can treat it earlier and have a better chance of a cure. Do you have any questions about this figure or anything that we have discussed up until this point?
b
Fig. 1 – Figure demonstrating the association between tumor growth, symptoms, and health impact.
Fig. 3 – Figure demonstrating that early detection can lead to treatment prior to symptoms, and improve health outcomes.
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a
b
Fig. 4 – Figure demonstrating that in some instances, a patient who has a small cancer may die before their cancer would have caused symptoms or health problems.
I have just described to you the benefits of cancer screening, but sometimes doctors and their patients may decide to stop screening for cancer. (Turning to Fig. 4a) This figure illustrates an example of when a doctor and their patient might decide to stop cancer screening. Imagine a patient that is very old and ill and is not expected to live past 5 years. This is a patient in which we may not want to continue screening for cancer. (Turning to Fig. 4b) As you can see, if the patient passes away in less than five years when the cancer is still small and not causing them any problems, the cancer will never have been a problem during their lifetime, so why look for it and subject them to tests that will not help them in any way?
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27. Kahneman D. Thinking, fast and slow. 1st ed. Farrar, Straus and Giroux; 2011. 28. Lowenstein G, Weber E, Hsee C, Welch N. Risks as feelings. Psychol Bull 2001;127:267–286. 29. Peters E, McCaul KD, Stefanek M, Nelson W. A heuristics approach to understanding cancer risk perception: contributions from judgment and decision-making research. Ann Behav Med Feb 2006;31(1):45–52. 30. Cacioppo J, Petty R, Feinstein J, Jarvis W, Blair G. Dispositional differences in cognitive motivation: the life and times of individuals varying in need for cognition. Psychol Bull 1996;119(2):197–253. 31. Whitney SN, McGuire AL, McCullough LB. A typology of shared decision making, informed consent, and simple consent. Ann Intern Med Jan 6 2004;140(1):54–59. 32. Walters S, Winslow M, Collins K, Robinson T, Green T, Madan J, et al. Health care professionals' preferences for extending mammographic breast screening to the over 70s. J Geriatr Oncol 2011;2(1):1–10.
Available online at www.sciencedirect.com
ScienceDirect
Decision-making and cancer screening: A qualitative study of older adults with multiple chronic conditions Cary P. Grossa,b,⁎, Terri R. Frieda,b , Mary E. Tinettia,b , Joseph S. Rossa,b , Inginia Genaoa,b , Sabina Hossaina,b , Elizabeth Wolf a,b , Carmen L. Lewisb,c,1 a
Cancer Outcomes, Public Policy, and Effectiveness Research (COPPER) Center, Yale Cancer Center, USA Sections of General Internal Medicine and Geriatrics, Department of Internal Medicine, Yale University School of Medicine, USA c Division of General Medicine, University of Colorado School of Medicine, USA b
AR TIC LE I N FO
ABS TR ACT
Article history:
Objective: To understand how older persons with multiple chronic conditions (MCC) approach
Received 23 June 2014
decisions about cancer screening.
Received in revised form
Materials and Methods: We conducted interviews with adults > 65 years old with at least
29 October 2014
two chronic conditions who were taking ≥ five medications daily. Patients were first asked
Accepted 1 December 2014
how age and multimorbidity influence their cancer screening decisions. After showing
Available online 17 December 2014
them an educational prompt that explained the relationship between life expectancy and the benefits of cancer screening, respondents were then asked about screening in the
Keywords:
context of specific health scenarios. Using grounded theory, three independent readers
Cancer screening
coded responses for salient themes. Sample size was determined by thematic saturation.
Geriatrics
Results: Most respondents (26 of 28) initially indicated that their overall health or medical
Decision-making
conditions do not influence their cancer screening decisions. After viewing the educational
Heuristics
prompt, respondents described two broad approaches to cancer screening in the setting
Risk assessment
of increasing age or multi-morbidity. The first was a “benefits versus harms” approach in which participants weighed direct health benefits (e.g. reducing cancer incidence or mortality) and harms (e.g. complications or inconvenience). The second was a heuristic approach. Some heuristics favored screening, such as a persistent belief in unspecified benefits from screening, value of knowledge about cancer status, and not wanting to “give up”, whereas other heuristics discouraged screening, such as fatalism or a reluctance to learn about their cancer status. Conclusions: When considering cancer screening, some older persons with MCC employ heuristics which circumvent the traditional quantitative comparison of risks and benefits, providing an important challenge to informed decision making. © 2014 Elsevier Ltd. All rights reserved.
⁎ Corresponding author at: 333 Cedar Street, PO Box 208025, New Haven, CT 06520-8025, USA. Tel.: + 1 203 688 8588; fax: +1 203 688 4092. E-mail addresses: [email protected] (C.P. Gross), [email protected] (T.R. Fried), [email protected] (M.E. Tinetti), [email protected] (J.S. Ross), [email protected] (I. Genao), [email protected] (S. Hossain), [email protected] (E. Wolf), [email protected] (C.L. Lewis). 1 Division of General Internal Medicine, Department of Medicine, University of Colorado School of Medicine, Mail Stop B180, Academic Office 1, Room 8415, 12631 E. 17th Ave., Aurora, CO 80045. Tel.: +1 303 724 8285; fax: + 1 303 724 2270.
http://dx.doi.org/10.1016/j.jgo.2014.12.001 1879-4068/© 2014 Elsevier Ltd. All rights reserved.
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1. Introduction Increasing age and the presence of multiple chronic conditions (MCC) are associated with a diminishing benefit from cancer screening.1–3 Because the time at risk for developing cancer is decreased, patients with shorter life expectancies are less likely to benefit from screening.4,5 Additionally, older and sicker patients may be more likely to experience screening-related harms.6 Despite guideline recommendations to align the use of cancer screening tests with likelihood of benefit, studies have consistently demonstrated “overuse” of cancer screening tests among older persons with multimorbidity.1,7–12 Patient demand likely contributes to screening overuse. Attitudes of older persons regarding cancer screening appear to be positive, with most individuals desiring screening.13–16 However, little research has examined the basis for these positive attitudes and the decision-making process of cancer screening in older persons. Some evidence indicates that the public may not be aware of potential harms that result from cancer screening.17 One approach to addressing this mismatch between the desire for cancer screening and the likelihood of benefit is to better inform older patients about the risks and benefits. Studies in other clinical settings have demonstrated that patient education can decrease utilization.18,19 Although prior work has elicited older persons' opinions about cancer screening, it is unclear whether they understand why screening may not be beneficial in the context of MCC.20 Therefore, we conducted a qualitative study of how older persons with MCC approach cancer screening, that incorporated an educational intervention designed to explain the importance of life expectancy and health status on the potential benefits of screening.
2. Methods Participants were identified from an academic Internal Medicine clinic and an independent retirement community. They had to be at least 65 years of age and self-report having at least two chronic illnesses, and taking at least five prescription medications daily. The participant population was constructed using purposive sampling to ensure heterogeneity with regard to race and recent screening test use. Participants who had a cancer diagnosis within the previous five years or who had evidence of cognitive impairment as determined by the Short Portable Mental Status Questionnaire, were excluded.21 Prior to initiating the study, it was approved by Yale University's Human Investigations Committee. The semi-structured interviews lasted about 20–25 min and were recorded and transcribed verbatim. The interview guide included items assessing participants' health conditions and severity, and an educational tool that described the purpose of cancer screening and the relation between life expectancy and potential to benefit from screening (Appendix A). This tool was developed using an iterative process, incorporating cognitive testing. After viewing the prompt, patients were asked about their feelings toward stopping screening if they had a limited life expectancy, or significant impairments to their daily functioning. Specifically, the instrument addressed a
clinical scenario: “… a patient who is older and has very bad lung disease, just walking to his front door makes him feel tired and breathless. His doctor believes that he will only live for a couple more years.” The instrument also included questions addressing screening decisions as applied in general, to a generic patient: “… why patients or doctors might decide to stop screening for cancer for people who are older or have serious illness” as well as “What other reasons can you think of that patients might choose not to do screening test for cancer.” In addition, more specific items regarding why the respondent him or herself might or might not elect to stop screening were included in the interview. Consistent use of the discussion guide, independent professional preparation of the transcripts, and standardized coding and analysis of the data were all employed.22–25 Data collection and analysis were an iterative process; an in-depth, grounded theory approach was utilized by three independent coders to identify salient themes.26 The coding structure was reviewed by the full study team for logic and breadth, and modified in an iterative manner. The final sample size was determined by thematic saturation.
3. Results Of the 28 participants, 23 were female and the majority was 65–75 years old (Table 1). Prior to viewing the educational prompt, the vast majority of participants (26 of 28; 96%) responded “no” when asked whether their overall health or medical conditions influence their cancer screening decisions. After viewing the educational prompt, respondents were asked whether medical conditions or health status would influence their own decision to undergo screening, even if they had a limited life expectancy. About 25% of the sample indicated that their health would influence their screening decision, while 14 people (52% of the sample) indicated that their health would not influence their screening decisions, and the remaining 25% were undecided. We found that participants adhered to at least one of two approaches when considering cancer screening. The “benefits vs. harms” approach was more structured and cognitive,
Table 1 – Participant characteristics. Characteristic
Number (%)
Sex Female Male
23 5
Age 65–75 76–85 >85 Unknown
16 1 6 5
(57%) (4%) (21%) (18%)
Race African American Caucasian Asian American Other Not reported
10 3 1 1 13
(36%) (11%) (4%) (4%) (46%)
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while the second approach was more intuitive, based on the use of heuristics rather than on a consideration of data. These heuristics were cognitive short-cuts that participants used to reach their decision about screening.
3.1. Benefits vs. Harm Approach When participants used the “benefits vs. harms” approach they thought about the impact of screening on their health in terms of positive consequences (benefits) and the potential for adverse consequences (harms; Table 2). Major “benefit” domains were the perceived risk of developing cancer including family history, and the benefits of early detection. Three domains comprised the harms of screening. Within the domain of “prior experience with screening”, participants discussed their own uncomfortable/painful experiences with cancer screening. This included responses such as, “I'm surprised I didn't have a tear or something. I mean, when I had my kids, I didn't hurt that bad…” A second domain involved prior personal experiences with adverse events or complications suffered during screening.
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For instance, one participant reported that “I had screening for colon cancer and the last time they did it on me…I had a seizure.” The third domain was “other logistical priorities superseding screening.” Patients focused on pragmatic considerations that increased the burdens of screening, including difficulty with transportation and the need to attend to other priorities deemed more important than screening. Cost was cited in two different domains. First, some participants cited that they may not have (or want to spend) additional money for screening tests. Alternatively, one patient expressed a societal perspective, saying “[they shouldn't be] spending exorbitant amounts of money on keeping me alive longer when there are so many younger people on whom I think the money should be spent.”
3.2. Incorporating Age and Multiple Chronic Conditions After viewing the educational prompt, some participants cited the effects of MCC on screening benefit; one participant stated, “… with all the other problems why would the screening help.” Others referred to the greater importance of
Table 2 – Benefits vs. harms approach. Benefits of screening Perception of being at risk for colon cancer Benefit of early detection
“My mother died of colon cancer so I figured since it seemed to be something that cancer seems to run in our family in one form or another and it would be safer to get it done.” “…It is better to have screening because then you would catch the cancer early.…I think that is a very good test that they can find cancer before it spreads..”
Harms of screening Discomfort/unpleasant nature of test
Prior adverse experience with testing (not physical discomfort) Concern about complications
“I'm surprised I didn't have a tear or something. I mean, when I had my kids, I didn't hurt that bad. They put me through torment hell when they give me that examination; that's the truth.” “… a lot of people say they went and “oh I didn't feel mine, but they give me a shot or they give something that kill the nerve.” They didn't give me nothing. Nothing, I mean nothing at all. … I mean, I never hurt so bad in my days, since I'm born in the world.” “I told them no, never again, because it hurt me so bad. The way she did the machine, squeezing, oh my god, I don't know why I didn't holler while I was there. But I just made myself not to complain too much, and I said no, never again. And I haven't taken one since.” “I think I don't know, I think it may be disgusting. That's the only reason why I didn't get it that thing can be disgusting.” “I had screening for colon cancer with the last time they did it on me, we tried to do it, I had a seizure.” “Well one particular reason [not to get screened] was I have a friend whose husband had screening then they punctured his rectum.” “I am 76 years old. My tissues are thin. It goes up your rectum with this little instrument and they could easily tear something up there and if that happens, they are going to have to operate on me. I do not feel that I may be able to survive that operation.”
Effect of age/health status on screening benefits and harms Lack of benefit
Other health priorities supersede screening Other logistical priorities supersede screening Cost — personal perspective Cost — societal perspective
“How much longer do I have, how much longer can I be here, you know, If you find cancer in my colon, how long do I have, am I going to let you operate? There is certain things that I feel that if I subject myself to, I cannot make it through that, so I will not subject myself to it.” “If I am older and have no more than five years to live, I probably would not go through it, you know I feel don't even (think it's) worth it.” “The current problems I have right now, that are on my plate, are such that the outlook is very pessimistic, I do not need to tackle another problem.” “Additional burden on the family” “It would be much harder for my daughter to be here, she probably could arrange it, but it is difficult, so I am just not looking into it, I am just putting it on the back burner.” “..might not have the money, again economics is a big factor.” “…spending exorbitant amounts of money for keeping me alive longer when there are so many younger people on whom I think the money should be spent.”
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other medical conditions, which would supersede screening: “I have got enough on my plate right now … I do not need to tackle another problem.” Concern about an increased risk of screening-related complications because of their age or health status was also cited by some participants; as one participant said, “I am 76 years old. My tissues are thin. It goes up your rectum with this little instrument and they could easily tear something….”
3.3. Heuristics Favoring Screening Five heuristic domains favored screening: belief in benefits from screening; value of knowledge about cancer status; not wanting to “give up”; prognostic skepticism; and enthusiasm for screening as part of routine health practices (Table 3). Regarding the first domain, some expressed the belief that the test must have some benefit even when presented with the information that it would not improve life expectancy or decrease the likelihood that cancer would cause health problems. As one participant expressed, “If you had reason for getting these screens then I think if you stop, then you really might be in danger.” Some participants expressed the value of knowing their cancer status, regardless of whether this knowledge would alter their treatment or clinical outcomes. They were avid for information about their body and overall health, regardless of age or other chronic medical conditions, making comments such as, “Well I think, if I had cancer, if the doctor told me tomorrow I had cancer, I would want to know more about it. And I would want to be treated whether it would save my life or not.”
Prognostic skepticism also affected decisions. When considering that patients who are older or sicker are less likely to benefit from cancer screening, some participants did not find the statistics personally applicable and rejected the idea of applying probabilities to their own decision-making. One participant stated, “You can be in poor health and still… live a long time. You can be in good health, and go away right away.” Finally, some participants expressed enthusiasm for screening as part of their routine health care, without focusing on specific cancer-related benefits (Table 3). Screening was conceptualized as something that one has to do, with one participant stating, “The way I'd stop is to die, I guess,” while another stated: “I don't think any doctor will stop me from having that test, I surely don't think so.”
3.4. Heuristics Discouraging Screening Three heuristic domains discouraged screening (Table 3). For the first category, fear of being diagnosed with cancer, patients might decline screening due to concerns that additional information (i.e. the screening test results) would be undesirable and anxiety-provoking. Some participants simply did not want to know or look for any type of medical problems. For others, the rationale for avoiding information was more specific to cancer: “Well, a lot of them are afraid you are going to find it. That's a lot of people who are afraid of cancer…. they would rather not know they got it.” A second heuristic was the feeling of being too “tired out” or overwhelmed by other factors to even think about cancer screening: “Well I think perhaps by then I would have given up on [screening] if I would just felt that weak.” Another
Table 3 – Heuristic approaches. Heuristics that favor screening Belief that test must have benefit “If you had reason for getting these screens then I think if you stop, then you really might be in danger.” “Because I'm thinking maybe they would find something that would help. You know, the more you find out, I feel like it would help me.” Desire for knowing whether “Because I don't know anything else that would make me feel better than to know that I'm healthy.” cancer is present “[Screening] would be so wise you know if that is inside of you, you should always know what is happening inside of you.” “At least [screening for cancer] would clear my mind that that's not part of the ailment.” “I would benefit real good. This way, I'll know. I'll know if I have to have an operation, I'll know if I got cancer or if I don't, you know. I would know how to prepare my life.” “Not giving up” “I feel like (stopping screening) would be giving up.” Prognostic skepticism “You can be in poor health and still be, live a long time. You can be in good health, and go away right away.” (i.e. “statistics don't apply to me”) “No. I believe that one really doesn't know for certain what the outcome is, and I don't think we should play God. So, I think whatever measures are reasonable… to do it.” Unbridled enthusiasm for “So much reading and talking about it everyone saying it is the thing to do, you should do it every year.” screening as part of routine “The way I'd stop is to die, I guess.” “I don't think any doctor will stop me from having that test, I surely don't think so.”
Heuristics that discourage screening Doesn't want to know/doesn't want to look for trouble Ready to go/ “tired out” Fatalism
“Well, a lot of them are afraid you are going to find it. That's a lot of people are afraid of cancer…. they rather not know they got it.” “To me some of them I think is afraid of those treatments they get, a lot of people are afraid of that chemo.” “Well I think perhaps by then I would have given up on (screening) if I would just felt that weak.” “You see the faith I have in God I guess makes me a lot different to some people to others. That way it was intended for it to happen. …I think it's just their time to go.” “Because we have certain amount of life span to live, the Lord say if we have strength you can live to three score and ten. So if I … am 90 years old, I would not bother.”
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participant expressed the concept in this manner: “Sometimes you just get tired of things, and he will figure [you aren't] going to get better anyhow, so [screening] wouldn't make any difference.” Third, some participants invoked a belief in the “will of the Lord” or fatalism, suggesting that their outcomes are predetermined, and that screening would not change them: “Because we have certain amount of life span to live, the Lord say if we have strength you can live to three score and ten. So if I … am 90 years old, I would not bother.”
4. Discussion We found that older persons with MCC employed two distinct thought processes in their approach to cancer screening. When our participants used the “benefits vs. harms” approach, they focused on the experience of undergoing a test, and the resulting direct impact on their health or financial well-being. This approach reflects the “data-driven” perspective that serves as a foundation for patient education and informed decision-making. Although the heuristic approach represents a marked departure from this traditional risk and benefits approach, the use of heuristics is consistent with current literature describing how people actually approach many decisions.27 That is, in contrast to the deliberate weighing of risks and benefits, people's thinking is actually often intuitive and based on emotion.28 It is important to note that participants used these heuristics even after receiving an educational prompt providing them with information about the decreased benefits of screening in the context of advanced age and multimorbidity. Our findings corroborate previous research showing that older adults favor continuous cancer screening,20 and provide objective data in support of theoretical concepts on cancer risk perception.29 These findings suggest that education alone may be insufficient to change older persons' behaviors regarding their own screening decisions. Important heuristics included a strong belief in cancer screening tests as beneficial above and beyond any cited evidence about benefits and risks. That is, there appeared to be an unwavering belief that “it's gotta be helpful somehow” to undergo screening. This attitude may arise from aggressive “pro-screening public health messaging campaigns”. Unfortunately, the emphasis on promoting cancer screening for age-eligible populations has overshadowed the need to develop appropriate educational interventions for patients unlikely to benefit from screening. Targeted educational efforts for older adults, and particularly for those with multiple morbidities, may offset the (strictly) positive view of cancer screening used to promote screening programs in younger adults. Future work should explore the impact of public service messages regarding cancer screening and whether they foster unrealistic expectations about screening benefits. Alternative approaches in educating patients could be helpful in this regard; some evidence indicates that materials that encourage central processing (i.e. problem solving, comprehension) may result in changing attitudes toward behaviors.30 Educational materials that are targeted based on individual characteristics such as health state may increase motivation to engage with the
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information leading to central processing. Further, simplifying these materials to decrease cognitive load may encourage central processing rather than peripheral processing or a heuristic approach.27 There are important limitations to consider. Although we continued interviews until thematic saturation, it is unclear that our participants or interview locations are representative of other patient populations. Further, the majority of our participants were female, reflecting the underlying demographics of the recruitment locations. Additionally, the respondents varied widely in their level of education and familiarity with health care. As a result, understanding of screening and other concepts discussed in the interviews was variable. Although this reflects the variability across patients in actual practice, future work should explore whether approaches to screening vary according to patient demographics, health literacy, or other factors. Limiting use of cancer screening by people for whom risks outweigh the benefits will allow patients to avoid unnecessary risk, discomfort, cost, and inconvenience. In this setting, the clinician's goal is to explain to the patient why a certain choice is more likely to provide greater clinical utility (i.e. not screening when clinical benefits are unlikely to accrue) than an alternative choice (i.e. to continue cancer screening).31,32 However, a physician's recommendation against screening, although potentially supported by clinical evidence, goes against prevailing practice patterns and may also go against older persons' expectations that they need screening. As a result, provider driven recommendations to ‘just say no’ to older adults with multimorbidity are unlikely to be successful if those older adults are not open to this information. Our findings highlight a key challenge in aligning screening test utilization with evidence, and with patient preferences. When considering cancer screening in the setting of increased age and multimorbidity, older persons consider not only the potential benefits and harms of screening, they also employ heuristics. Efforts to address overuse of screening, and ensuring that patients are able to make informed decisions will need to identify mechanisms to identify and address commonly-used heuristics that pre-empt informed decision-making. Using the domains identified in this study will be useful to guide future work to inform older persons and address the mismatch between screening behavior and likely benefit.
Funding This work was funded by the Agency for Healthcare Research and Quality grant 5R21HS018598.
Disclosures and Conflict of Interest Statements Drs. Gross and Ross have received support from Medtronic, Inc and Johnson and Johnson, Inc to develop methods of clinical trial data sharing. Dr. Gross has received research support from 21st Century Oncology.
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Author Contributions Concept and design: C Gross, T Fried, M Tinetti, I Genao, J Ross, C Lewis Data collection: S Hossain, E Wolf Analysis and interpretation of data: C Gross, T Fried, C Lewis Manuscript writing and approval: C Gross, T Fried, M Tinetti, I Genao, J Ross, C Lewis, S Hossain, E Wolf
Appendix A. Script and Visual Aids As mentioned earlier one of the goals of this study is to learn more about how patients' think about cancer screening. You probably already know what a cancer screening test is. It is a test that doctors can order to look for cancer while it is still very small and not causing any symptoms. For example, you may be familiar with mammograms; they are tests that women get periodically to check for breast cancer in the very early stages before a woman has experienced any symptoms from it. If doctors can find cancers while they are still small and have not yet spread, then they are more likely to be able to cure it. This is because if cancer is found early it is easier to treat. Although most people might think that everyone should always be screened for cancer with many tests, it is not that simple. Many people may benefit from screening for cancer, but I want to talk to you about situations in which people may not benefit from these tests. (see addendum 3 figures) The first thing to know about cancer is that it may grow very slowly. (Turning to Fig. 1a) In this figure, we have illustrated how cancers start out small without causing symptoms. After five years, the cancer will have grown large enough to cause symptoms and start affecting your health.
a
Fig. 2 – Figure demonstrating that early detection of cancer by screening test can detect a tumor prior to onset of symptoms.
(Turning to Fig. 1b) So, from this figure it is important to see that cancer takes a long time to grow and cause problems. In fact, it can actually take 5 years for a small early cancer to grow large enough to start affecting your health. Do you have any questions about this figure or anything that we have discussed up until this point? (Turning to Fig. 2) This figure shows us that a screening test allows us to detect a small cancer before it has progressed to a larger cancer that can affect your health. So, since cancer takes so long to grow, and it can be in your body for so long without you knowing it, your doctor might recommend a screening test periodically to make sure there is not a small cancer developing. Do you have any questions about this figure or anything that we have discussed up until this point? (Turning to Fig. 3) This figure shows us that by detecting cancer early, it can be treated while it is still small. When cancer is small and has not yet had the chance to spread, it is easier to treat and patients have a better chance of curing it. Therefore, by finding cancer early we can treat it earlier and have a better chance of a cure. Do you have any questions about this figure or anything that we have discussed up until this point?
b
Fig. 1 – Figure demonstrating the association between tumor growth, symptoms, and health impact.
Fig. 3 – Figure demonstrating that early detection can lead to treatment prior to symptoms, and improve health outcomes.
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a
b
Fig. 4 – Figure demonstrating that in some instances, a patient who has a small cancer may die before their cancer would have caused symptoms or health problems.
I have just described to you the benefits of cancer screening, but sometimes doctors and their patients may decide to stop screening for cancer. (Turning to Fig. 4a) This figure illustrates an example of when a doctor and their patient might decide to stop cancer screening. Imagine a patient that is very old and ill and is not expected to live past 5 years. This is a patient in which we may not want to continue screening for cancer. (Turning to Fig. 4b) As you can see, if the patient passes away in less than five years when the cancer is still small and not causing them any problems, the cancer will never have been a problem during their lifetime, so why look for it and subject them to tests that will not help them in any way?
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