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The New Zealand Medical Journal

 Journal of the New Zealand Medical Association, 05-June-2009, Vol 122 No 1296

Patients’ attitudes to the use of placebos: results from a New Zealand survey
Guo-Feng Chen, Malcolm H Johnson
Abstract
Aims To examine how amenable patients are to the use of placebos in clinical practice, their willingness to participate in a placebo-controlled clinical trial (PCT), and to examine patients’ beliefs about the placebo effect.
Methods A cross-sectional questionnaire survey was administered to 211 general practice patients of two primary care clinics in socioeconomically divergent areas of the Auckland region, New Zealand. The questionnaire obtained self-report of willingness to accept various clinical uses of placebo as measured by the Attitudes to Placebo Treatments Scale (APTS), willingness to participate in a PCT including reasons for or against participation, and beliefs about the placebo effect.
Results The APTS score (M=22.34, SD=7.93) for the entire sample showed that patients were accepting of placebo use in certain clinical situations, even the use of placebo as a diagnostic tool. Patients seem to consider placebo use more appropriate when it is for the benefit of the patient, at the patient’s request, or when there seems to be no available alternate treatment. Placebo use was considered inappropriate when its use was seen to be for the benefit(s) of the physician or where placebo use seemed dangerous. 59% of the patients surveyed indicated willingness to participate in a PCT.
Conclusion Many patients are amenable to the use of placebos, suggesting that the major issues of placebo use (deception and lack of informed consent) are tolerated by the patients surveyed. Many were prepared to participate in a PCT particularly in order to support the development of new treatment and help other patients. However, patients seem to have misguided beliefs about the placebo effect, underestimating the effectiveness of the placebo and attributing placebo effects to personality. Generally, patients lack understanding of the placebo effect.

The administration of placebo as an intervention in clinical practice has been well-documented. Studies have shown that many physicians do not hesitate to administer a placebo intervention in various clinical situations.1–6 In a Danish study of 545 clinicians, as many as 86% reported use of placebo interventions at least once, and 48% to have used placebo interventions more than ten times within a year 4, while 60% of a group of 89 clinicians in Israel used placebos and over 30% did so more than once a month.5 In a very recent study of a United States sample of internists and rheumatologists about half of the 679 respondents acknowledged prescribing placebo treatment.6
Although apparently quite widely occurring, the use of placebo interventions in clinical practice is generally regarded as unethical because it fails to include informed consent, and often involves deceit of a patient.7 Unfortunately, we have little information about the attitudes of patients to placebo treatment or their understanding of the construct. The limited literature suggests that along with health professionals, patients are not well informed and generally lack awareness of the placebo effect.3,8,9
In one study surveying 300 rheumatology inpatients about their beliefs regarding the placebo effect in the treatment of chronic pain, the authors found that patients had little knowledge of the placebo effect and tended to underestimate it, and concluded that more attention should be directed to better understand patients’ views of the placebo construct.8
As evidence grows for a biologically active basis for placebo action mediated by expectation and conditioning processes in conditions such as pain,10–13 Parkinson’s disease,14–17 and depression,18–21; along with evidence that much of the efficacy of some “real” treatments is attributable to placebo effects,22–24 arguments for the use of placebo in clinical practice are likely to grow.10,25–27 However, even if health professionals are ready to “exploit” placebo power, the question of whether placebo administration is acceptable to patients and the impact that placebo administration might have on the healing encounter is unknown.
Without sound knowledge of how patients generally view the use of placebos, no one can answer this question with certainty. Clearly, we need additional information to predict the likely impact of the use of placebos on patients’ perceptions of their medical experience. Therefore, shifting the research focus to examine patients’ attitudes to placebo use will benefit the existing literature.
At this point in time, the one circumstance in which placebo can be ethically administered is in the context of a clinical trial in which the participant is informed about the possibility of receiving a placebo rather than the procedure or pharmaceutical being investigated.10,28,29 Although there has been much recent discussion regarding the ethics of placebo administration in this circumstance,29–31 there is little systematic evidence regarding consumer views of placebo use, other than one qualitative study of Japanese laypersons that found the use of placebo was related to more negative attitudes toward participating in medical research.32
We examined whether patients were amenable to the use of placebo in various clinical situations, their willingness to participate in a PCT including their reasons for or against participation, and their beliefs about the placebo effect.

Methods

Questionnaire—We developed a questionnaire on beliefs about placebo and attitudes to the use of placebos in clinical practice and in clinical research. We sought information on basic demographics, willingness to participate in a PCT, attitudes to the use of placebos, and beliefs about the placebo effect. Placebo was briefly defined in the questionnaire as: ‘an inactive treatment such as a sugar pill that looks like the real pill and is given in the same way as a real pill’. Additionally, we asked whether patients had chronic or acute conditions.
Attitudes to the use of placebo were investigated using the APTS, a 10-item questionnaire adapted from an earlier study examining doctors’ attitudes to the deliberate use of placebo as treatment.1 However, the earlier study only examined the APTS as individual items. For the present study we wished to accumulate an overall score.
For each of the ten items, participants are asked to express what they believe is the right action for a medical practitioner to take. Prior to the main statistical analyses, the factor structure of the APTS was examined using principal components analysis. Initial results using varimax rotation suggested a two factor solution but with five items loading above .35 on both factors and eigenvalues of 3.27 and 0.34 for the factors.
As the scree plot and eigenvalues suggested a single factor, an oblique rotation (direct oblimin) was used. From this analysis, it was concluded that a single factor solution with nine items that had an eigenvalue of 3.81 and explained 42 % of the total variance was appropriate. Factor loadings are shown in Table 2. Item 1 had an extremely low factor loading compared to the other nine items and was not included when the total score was calculated.
The Cronbach’s alpha for the APTS is .822. The individual scores are summed to give an overall score ranging from 9 to 45. A higher score would mean that the participant is more amenable to the use of placebos.
Recruitment—Consecutive general practice patients waiting to see their doctors were recruited from two clinics with different socio-economic populations in the Auckland area of New Zealand. The inclusion criteria for participation were; (1) patients had to be over 18 years old; (2) patients were required to be literate in English. Of the approximately 440 patients approached who consented to participate, 211 returned completed questionnaires, a response rate of 48%.
Statistical methods—Statistical analysis was carried out using version 12 of the Statistical Package for Social Science (SPSS). The significance level was set at .05 for all statistical tests. P-values less than 0.05 and 0.01 were reported. To compare group differences in means of the APTS, independent samples t tests were used. The associations between continuous variables of interest were determined using Pearson correlation coefficients. Factor analysis was used to examine the psychometric properties of the APTS.

Results

Table 1 shows the basic demographics of the entire sample. The uneven gender ratio probably reflects the general pattern that females visit their physicians for advice and treatment more frequently than males.33,34 The age of the sample no doubt results from the impact of age on health. The number reporting tertiary level education (47%) is slightly higher than the 40% of adults that reported having tertiary qualifications in the 2006 New Zealand census,35 perhaps because some people will engage in tertiary education without receiving a qualification.
Table 1. Demographic data for the total sample
Variables
Frequency
(%)
Mean age (SD in years)
Male
Female
49.7
54.4
48.3
(17.4)
(18.2)
(16.9)
Gender
Males
Female

49
162

(23)
(77)
Medical condition
Acute
Chronic

92
119

(44)
(56)
Education
Some high school
Finished high school
Tertiary level

88
24
98

(42)
(11)
(47)
Frequency—The results of the responses to the individual items on the APTS for the entire sample, expressed as percentages are shown in Table 2 while Table 3 presents the means and standard deviations of the APTS. Items 1, 3 and 9 were found to be the most appropriate uses of placebo. In item 1, 27% would definitely consider use in this way, while over 78% would consider use in this way on at least rare occasions. In item 9, over 32% would definitely consider use in this way, while over 68% would consider use in this way on at least rare occasions.
In item 3, over 53% would consider use in this way on at least rare occasions. Items 4, 6 and 10 were found to be the most inappropriate uses of placebo. In item 4, over 72% would definitely not consider use in this way, while 82% would either consider it definitely not appropriate or only as a last option. In item 6, over 36% would definitely not consider use in this way, while over 64% would either consider it completely inappropriate or only as a last option. Finally, in item 10, over 48% would definitely not consider use in this way, while over 71% would either consider it completely inappropriate or only as a last option.
Examination of individual scoring patterns for the APTS showed only one participant considered all uses of placebo were definitely not appropriate and one considered that all uses were definitely appropriate. While there was a tendency for participants to be either more or less agreeable to the various uses of placebo, 117 participants discriminated the various possible uses and responded definitely appropriate to at least one use and definitely not appropriate to another.
Table 3. Means and standard deviations of the APTS of the whole sample, by gender and by medical condition
Variables
Mean APTS scores
(SD)
t test
Entire sample
Gender:
Male
Female
Medical condition:
Acute
Chronic
22.34

24.31
21.75

21.78
22.77
(7.93)

(8.37)
(7.72)

(7.68)
(8.12)



P<.05


NS
Comparisons of group differences were made for gender and medical conditions. The mean and standard deviation of the APTS score for the entire sample was 22.34 and 7.93 respectively. Male participants (M=24.31, SD=8.37) had significantly higher mean APTS scores than female participants (M=21.75, SD=7.72), t (209) =1.99, p<.05. However, chronic and acute patients did not significantly differ on the APTS scores.
Table 4 presents the correlations between the variables total APTS scores, age, and education. Age correlated positively with total APTS scores (r=0.14, p<0.05), and level of education correlated negatively with total APTS scores (r=-0.29, p<0.01).
Table 4 Intercorrelations between the APTS and demographic variables
Variables
(1)
(2)
(3)
(1) APTS
--


(2) Age
.137*
--

(3) Education
-.287**
-.409**
--
Willingness to participate in a placebo-controlled trial—Table 5 shows the responses of willingness to participate in a hypothetical PCT. Overall, 59% of the entire sample would be willing to participate in a PCT. The reasons most often given were:
  • The wish to support the growth of new treatments/help other patients;
  • The possibility of remaining unmedicated; and
  • Believing that even a placebo may help them.
The reasons most often given by unwilling participants were:
  • Wanting to know if they were really receiving medication;
  • Fearing that not receiving medication may worsen their condition or slow their improvement; and
  • Knowing that long-term drug treatment is required.
Eighty seven percent of the patients stated that they would not lose trust in their physician if asked to participate in a PCT. No significant findings were found for the influence of sociodemographic variables - gender, medical condition, age, or education on the decision to participate or not in a clinical trial.
Patients’ beliefs about the placebo effect—Table 6 shows the responses to patients’ beliefs about the placebo effect. Over 65% were unsure that placebos would work in general. More interestingly, less than 5% either agreed completely or agreed for the most part that placebos, in general can cause bad side effects. Less than 17% either agreed completely or agreed for the most part that a placebo can provide complete pain relief. Over 21% agreed completely or agreed for the most part that the effect of a placebo can last as long as that of the real treatment. Less than 9% either disagreed completely or disagreed for the most part that the effectiveness of a placebo was dependent on the personality of the patient. Over 5% either agreed completely or agreed for the most part that two placebos can be more effective than one.
Table 5. Willingness to participate in a placebo-controlled trial for the entire sample
Table 6. Patients’ beliefs about the placebo effect
Item
Belief
Agree completely
Agree mostly
Unsure
Disagree mostly
Disagree completely
1
Placebos work in general
1.9
17.9
65.2
10.2
4.8
2
Generally, placebos can cause bad side effects
0.5
4.3
37.2
35.3
22.7
3
A placebo can provide complete pain relief
2.5
14.4
47.0
19.8
16.3
4
The effect of a placebo can last as long as that of the real treatment
3.9
17.5
56.1
13.7
8.8
5
The effectiveness of a placebo is dependent on the personality of the patient
18.1
47.1
26.7
5.7
2.4
6
Two placebos can be more effective than one
1.0
4.4
49.3
23.3
22.0

Discussion

Principal findings—The present study is the first to utilize the individual items in a scale, and is the first to be used with a patient population. The high reliability coefficient of 0.82 for the APTS suggests that it was appropriate to use with a patient population. The mean score of 22.34 (out of 45) for the entire sample provided evidence that overall, patients were quite conservative about the use of placebos. However, examining the individual items on the APTS (Table 2), it was clear that patients in the present study were amenable to the deliberate use of placebo manipulations in some situations although their lack of knowledge regarding the finer details of the placebo effect provides a context for this finding.
Interestingly, males had a significantly higher overall score than females (24.3 and 21.8), suggesting that male patients in general are more likely to view the use of deliberate placebo manipulations as more appropriate than female patients.
Two interesting but not unexpected patterns emerged from examining the individual items on the APTS. Firstly, placebo use was considered more appropriate when it was used for the benefit of the patient, was at their request, or when there seemed to be no available alternate treatment. Secondly, placebo use was considered inappropriate when it was used for the benefit(s) of the physician or in situations where it seemed use was dangerous and without possible benefits to the patient.
Overall, on four of the ten items, over 50% of the participants surveyed would consider the use of placebo on at least rare occasions, and on three other items over 40% would consider the use of placebo on at least rare occasions. These results clearly show that many patients are amenable to the use of deliberate administration of placebo in some circumstances.
Even though the use of a placebo as a diagnostic tool is dubious, over 51% of the patients surveyed would consider use in this way on at least rare occasions as revealed by responses to item 2. This indicates that patients are unaware that use of placebo as a diagnostic tool is ineffective and inappropriate. The percentage of patients that responded definitely not appropriate to the items ranged from 16.2% to 72.0%.
The percentage of patients that responded definitely appropriate to the items ranged from 4.3% to 32.5%, which may reflect a degree of conservatism on the issue of placebo use.
Theoretical framework—The concept of paternalism is defined as an action taken by one person in what he takes to be the best interest of another without the explicit consent of the person to be benefited.9 The results from the present study indicated that in many situations patients appear to be paternalistic in their attitudes to the deliberate use of placebo manipulations. Interestingly, it has been argued that acceptance of a placebo by a physician can encourage other kinds of deception in medicine.36
This might suggest that patients who are accepting of the use of placebos are likely to be accepting of other kinds of deception in medicine. However, the primary question in how patients react to complex situations such as placebo interventions is whether the primary expectation of the patient is “First, tell me the truth” or “First make me feel better.”9
One explanation for why so many patients in the present study considered the use of placebos to be appropriate could be because patients’ judgments are based on the primary expectation of making the patient feel better. The majority of the placebo manipulations on the APTS are suggested with the benefits of the patient in mind. Thus, it is conceivable that a large proportion of the patients surveyed believed that placebo manipulations would in some way benefit the patients involved.
Willingness to participate in a PCT—The present study found that 59% of the patients surveyed were willing to participate in a hypothetical PCT. This finding is considerably higher than that of the 44% found in the sample of schizophrenia patients.37
In our study, one cannot preclude the possibility that approving participation may represent an altruistic, socially desirable response, particularly as participants were not actually asked to participate. This is reflected by the fact that all of the participants who reported preparedness to participate would do so to support the development of new treatments/help other patients. This is interesting, because the concepts of contributing to medical knowledge and having the opportunity to help other patients in research trials are typically underemphasised in participant information and consent forms.38
The present finding would strongly suggest that covering these areas more fully in consent explanations may facilitate patient involvement in PCTs. Of equal importance, more explicit focus on the altruistic aspects of participation should clarify the meaning and purpose of these trials and may guide patients to a more informed level of understanding from which their decisions can be made. For example, it would be inappropriate for researchers to emphasize the benefits of the trial without also acknowledging the personal risks involved for each patient.
It is encouraging to note that only 9% would participate to please their physicians, and only 18% would participate to talk to their physicians more often. These results indicate to some extent that patients are quite independent in their decision making regarding participation in a PCT. The fact that only 13.5% of the patients surveyed would lose trust in their physician if asked to take part in a PCT further suggests that patients are generally open to discussions about such trials.
Beliefs about the placebo effect—The finding that only 5% believed that placebos can cause bad side effects is significant because this would suggest that up to 95% of those patients involved in placebo trials that experience a marked improvement or side effects may conclude that they are receiving the active drug. Interestingly, only 8% disagreed that the effectiveness of a placebo was dependent on the personality of the patient. Such beliefs may be perpetuated by the general view that placebos would only cure illnesses that are all-in-the mind. These findings are consistent with a previous study examining rheumatology inpatients’ beliefs about the placebo effect.8 Overall, the results clearly indicate that patients are not well informed and have misconceptions about the placebo effect.
Strengths and weaknesses of study—The findings from the present study are limited by a number of issues. Firstly, the study is geographically restricted, as only two health clinics were sampled in the Auckland region albeit from different socio-economic areas. Secondly, there may be bias in those that chose to complete the questionnaire.
Finally, caution is warranted in interpreting these findings, as a problem inherent in all research using open questionnaires is that the response possibilities are specified and that the respondents may be biased to give socially acceptable answers. For example, in this study we asked patients to respond to a theoretical situation. Were they offered a placebo in a genuine clinical situation their response might of course be quite different and future research might fruitfully take up the challenge of such an investigation.
Implications—Many studies have shown that placebo manipulations are widely utilized in medical practice. However, some researchers have advocated banning the use of placebos because of the deception involved in administration and the possible harm to the physician-patient relationship.10,39
The present study reveals that many patients are amenable to the use of placebo manipulations particularly when they are used at the patient’s request, for the benefit of the patient or when there is no other available alternate treatment. Obviously, from a patient’s point of view, there must be occasions when an appropriate prescribed placebo will be less harmful and perhaps more beneficial than a complex and incompletely understood drug. For example, when the physician is dealing with patients with a history of substance abuse or when patients have to be withdrawn from certain addictive drugs.
In such cases, giving placebo without obtaining informed consent, may well contribute to the patient’s well-being, and in addition would not imply that the physician is withholding a possibly beneficial medical treatment. However, discovery of placebo use could still contribute to loss of confidence by the patient in the medical practice and the widespread use of placebos in clinical practice without informed consent could undermine the contribution of expectation to therapeutic outcome not only for placebos but also for “real” therapeutics.
The findings from the present study strongly support the need to examine important issues of deception, informed consent and appropriateness of placebo use in research and in clinical practice. Programs to educate patients should be developed to overcome the current misperception and misunderstanding of placebos. Similar surveys in other geographical areas may reveal cross-cultural differences, while similar studies on specific patient populations may also reveal interesting differences or similarities.
Competing interests: None known.
Author information: Guo-Feng Chen, Masters Student, Department of Psychological Medicine; Malcolm H Johnson, Senior Lecturer in Health Psychology, Department of Psychological Medicine; Faculty of Medical and Health Sciences, University of Auckland
Correspondence: Malcolm H Johnson, Department of Psychological Medicine, Faculty of Medical and Health Sciences, University of Auckland, Private Bag 92019, Auckland, New Zealand. Email: mh.johnson@auckland.ac.nz
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