Second opinions in oncology: the experiences of patients attending the Sydney Cancer Centre

Seeking a second opinion occurs in most fields of medicine. A telephone survey of 2274 people in the United States in 1999 revealed that one in every five people who had visited a health professional in the past year had sought a second opinion.1 In another study, 56.1% of 1020 people who self-reported having survived a cancer reported having sought at least one second opinion.2 The reports from these studies do not document what patients believed to constitute a second opinion. We propose that a second opinion comprises the seeking (patient- or physician-initiated) of an opinion from a second health professional of the same specialty as one who has already given an opinion.

There are few reports on second-opinion seeking, and most relate to doctor-initiated review of anatomical pathology specimens or results of imaging studies.3,4 A recent report on the results of a round-table discussion on second opinions discusses the reasons why patients seek second opinions from medical specialists and includes comments on discrepancies (mostly regarding pathology) between first and second opinions.5

Some patients in Australia are aware of their right to seek a second opinion, and many patients consult with more than one family doctor. The National Breast and Ovarian Cancer Centre recommends that patients consider seeking a second opinion,6 and the New South Wales Department of Health Patient Rights Charter states that the public health services will “assist you to obtain a second opinion”.7 The Consumers’ Health Forum of Australia website does not mention patients’ rights to a second opinion.8

The growth of the Internet has provided a new means for patients to seek health information, and identify questions for doctors. It has been reported that patients with cancer in the United Kingdom use the Internet to find second opinions.9 In the US, patients may self-refer for a second opinion, and an industry of providing remote second opinions has developed.10

To better understand the frequency, goals and outcomes of second-opinion consultations, we studied patients who presented to the Sydney Cancer Centre for a first consultation with a nominated medical oncologist and who indicated that they were seeking a second opinion.

Between January 2006 and January 2008, 1892 new outpatients were seen by medical oncologists at the Sydney Cancer Centre. After reviewing registration forms and speaking to patients about the context in which they had seen a medical oncologist previously, 123 (6.5%) were categorised as seeking a second opinion. Fifteen patients declined to participate in the study because they were not interested (5), too unwell (6) or had poor English comprehension (4). One patient was excluded due to having seen a surgeon previously (not a medical oncologist), and another was seeking a third opinion but could not be contacted by telephone. Five had been referred specifically for enrolment in a particular clinical trial. The remaining 101 patients consented to participate in the study, 77 of whom completed the questionnaire (76%); their median age was 55 years, and 59 (77%) were women (of whom 42 had breast cancer). These data contrast with those for the 1892 new patients seen in the study period, for whom the median age was 60 years, and 57% were women. Of the 77 participants, 53 reported that only English was spoken at home, 26 had a university degree (Box 1), and 53 had started treatment recommended by their first oncologist.

Patients could select more than one reason for seeking a second opinion. The most common reasons were: requiring more information about treatment options or decisions (54 patients); seeking reassurance that diagnosis or treatment already suggested was appropriate (47); requiring more information about their cancer (25); and dissatisfaction with the level of information or communication received so far (24).

Most patients (70/77) had sought a second opinion from a specific oncologist. Patients reported several reasons (and often more than one) for selecting the specific oncologist: recommended by a specialist (20 patients), by a friend (19), by a general practitioner (15), by a relative (13), and by a nurse or someone else from the hospital (6). Five patients identified the specialist using the Internet. The patients and the second-opinion oncologists had different recollections of the content of the consultation (Box 2). However, there was agreement relating to discussion of treatment options.

Sixty-four patients reported that they received new information during the second-opinion consultation. For 45 of these patients, the new information related to treatment options, and for 34 patients, the new information related to prognosis or the future (Box 3).

Fifty-one patients responded to the question that explored differences between their first- and second-opinion consultations. Twenty-four patients reported that the second-opinion consultation was longer than the first, 27 reported that the second-opinion oncologist gave them greater confidence, 26 reported that the second-opinion oncologist answered concerns, and 24 reported that the second-opinion oncologist made them feel more confident (Box 4). For this group of 51 patients, significant associations with reported differences in the second-opinion consultations were detected for education level and sex. A larger proportion of patients who completed secondary education reported that the second-opinion oncologist made them feel more confident than those who reported completing tertiary education (67% v 36%; χ21 = 4.29; P = 0.046). A larger proportion of female patients than male patients reported that the second-opinion oncologist made them feel more confident (61% v 30%; χ21 = 4.65; P = 0.048).

A significantly larger proportion of patients who reported dissatisfaction with the level of information or communication received so far reported that the second-opinion oncologist answered their concerns, compared with those patients who did not report this dissatisfaction (92% v 37%; χ21 = 11.92; P = 0.001). Also, a larger proportion of patients who reported dissatisfaction with the level of information or communication received so far reported that the second-opinion oncologist listened more, compared with those who did not report dissatisfaction, but this trend was not statistically significant (62% v 32%; χ;21 = 3.65; P = 0.098).

Two of 77 patients did not complete all the questions about multidisciplinary team care. Of those who did, 46 were aware of multidisciplinary teams and 55 were aware of treatment guidelines; however, only 15 patients had read treatment guidelines. Forty-seven patients reported that they believed that the first-opinion oncologist discussed their case with a multidisciplinary team and/or that the second-opinion oncologist would do so, and 62 reported that they believed discussion of cases like theirs with a multidisciplinary team was a good idea.

Most of the study participants (62/77) believed that they were making a choice between doctors, and 50 believed that they were making a choice between treatments. The second-opinion consultation resulted in a change either in treatment or in the supervising oncologist for 39 of the 77 patients. Twenty-two patients intended to continue to see the second oncologist and receive different treatment to that proposed by the first oncologist, while 10 patients planned to stay with the first oncologist but with a different treatment. Seven patients planned to switch to the second oncologist but continue to receive the originally recommended treatment. Thirty-three patients reported that their second-opinion oncologist offered to send them a copy of their letter after the consultation.

In our study, a small proportion of patients who registered to see a medical oncologist at the Sydney Cancer Centre (6.5%) stated that they were seeking a second opinion. Participants in our study commonly reported that their second consultation provided new information. They were also more likely to be women, and they were more likely to have a university degree than the overall Australian population (18%).12

Second-opinion seeking by patients with cancer raises the broader issue of what contributes to a good medical consultation. In line with previous findings,11 it appears that younger, more educated and female patients with cancer prefer more detailed information, and when these expectations are not met, they are inclined to seek a second opinion. The doctor’s communication style, personal characteristics and clinic schedule are also likely to have a strong influence on patients’ perceptions of their status in the consultation. Our results cannot be used to determine whether particular oncologists’ consultation styles contribute to patients’ decisions to seek a second opinion. Studying the subset of oncologists whose patients seek a second opinion more commonly than average is a topic for future research. Health system factors may also contribute. Allocating adequate time for consultations with new patients, and ensuring availability of relevant patient information are likely to be important. Almost half of the participants in our study perceived that their second-opinion consultation was longer than their first.

There are few reports on patients who seek second opinions from medical specialists. In a retrospective audit of outpatient referrals to the internal medicine outpatient clinic at the University Hospital Groningen, Groningen, the Netherlands,13 117 female and 84 male patients who had visited the outpatient clinic for a second medical opinion were identified. Most (86%) were referred for a diagnostic problem. A new diagnosis was established in about 10% of cases.

In a questionnaire-based study of socio-demographic and clinical characteristics of 212 consecutive patients with cancer who sought a second surgical opinion (defined as patients who took the initiative for the second consultation themselves after being seen by a cancer surgeon in a general or university hospital), satisfaction with the first specialist, motivation for the second opinion, need for information, preference for participation in decisions, and hope for and expectation of a different second opinion were assessed.14 Most patients were women (82%), of whom 76% were diagnosed with breast cancer, and most were seeking reassurance and more certainty about their treatment (62%). However, 38% had negative experiences or unfulfilled needs arising from their first-opinion consultation.

In our study, the most common reasons identified by patients for seeking a second opinion related to satisfying unmet information expectations after the first consultation, and seeking validation, or reassurance, that the original advice they had been given was correct. It is difficult to determine whether the unmet information needs imply inadequate oncologist communication skills (and consultation methods), incomplete recall on the part of the patient or insufficient time allocated for the consultation.

The second-opinion consultation appeared to provide several benefits to patients. Most second-opinion seeking patients reported that they received new information at the second consultation; this was mainly related to treatment options (70%) and the future or prognosis (53%). The second-opinion oncologist also appeared to make some patients — those who were less educated and those dissatisfied with the level of communication in their first consultation — feel more confident.

The cost of funding second opinions must be acknowledged, as patients who stated that they were seeking a second opinion accounted for 6.5% of new medical oncology consultations in our study. Medicare has recently introduced an extra rebate for consultations lasting more than 45 minutes. With this increased rebate for longer consultations, time pressures may become less of an issue, but only if the clinic schedules include extra time for new patients. However, the rebate for longer consultations applies to the management of complex cases, with multisystem problems, and is not automatically applicable to long consultations for patients with high information needs.

In our study, the second-opinion consultation resulted in changes in treatment for 42% of patients. This finding is in line with a study of surgical oncology patients that showed that the second surgical opinion was identical to the first opinion for 68% of patients, there was a minor discrepancy between opinions for 16% of patients, and there was a major discrepancy between opinions for 16% of patients.15 It is not possible to discern whether the changed treatment and/or recommendations in either study were based on presentation of new information or influenced by a more collaborative approach to decision making during the second-opinion consultation. The significance of differences in treatment recommendations in our study has not been explored.

Most second-opinion seeking patients in our study were aware of multidisciplinary teams and of treatment guidelines, but few had read treatment guidelines. These findings are disturbing. How accessible are treatment guidelines to patients with cancer? What will be the impact of the rapid expansion of multidisciplinary team meetings on second-opinion seeking that is initiated by cancer patients? Other authors have examined whether patient knowledge of adherence to guidelines by clinicians affects the desire of a patient to seek a second opinion and concluded that implementation of guidelines will not eliminate the need for second-opinion consultations.16

The generalisability of our findings is unclear. We believe that our results have implications beyond the field of oncology and recommend that additional studies of second-opinion seeking in specialist medical practice be undertaken. We speculate that more patients will seek second opinions specifically to access “new” drugs or particular clinical trial protocols, and these issues should be addressed.