Pediatric Hematology and Oncology, Early Online:1–6, 2014 C Informa Healthcare USA, Inc. Copyright  ISSN: 0888-0018 print / 1521-0669 online DOI: 10.3109/08880018.2014.987938

ORIGINAL ARTICLE

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Seeking a Second Opinion in Pediatric Oncology Oz Mordechai, Sharon Tamir, and Myriam Weyl-Ben-Arush Department of Pediatric Hematology Oncology, Rambam Health Care Campus, Haifa, Israel

Objectives: The goal of this study was to identify second opinion consultations by physicians and to determine patient and family factors that appeared to contribute to a second opinion being sought. Methods: One hundred and fifty consecutive parents of children with cancer recently treated in our Department of Pediatric Hematology Oncology were interviewed by telephone. The questionnaire included epidemiological data, details about the disease, timing of the second opinion consultation, reasons for seeking a second opinion, and the outcome of the consultation. Results: Thirty-seven (24.7%) parents sought a second opinion. Advice was sought from other physicians in the hospital or at other clinics. There was a correlation to a higher socioeconomic status (P = .003) and to the number of educational years (P = .001). Most of the parents sought a second opinion because they wanted confirmation about the treatment protocol and the professional level of the hematologist oncologist/surgeon and the institution. Conclusions: Second opinion consultations were not uncommon and were mainly secondary to the desire for reassurance. Pediatric oncologists should ensure that patients and their families feel comfortable requesting a second opinion consultation. Keywords cancer, pediatric oncology, second opinion

INTRODUCTION Only a few publications specifically describe second opinion in oncology patients [1–8]. In 1992, 56% of 1,500 adult cancer survivors in the United States reported having obtained at least one second opinion [4]. In the Netherlands and other Western countries, these needs are acknowledged as patients’ rights and are embodied in new laws on Medical Treatment Enactment [9–11]. No international studies have been performed in pediatric oncology to understand the reasons for seeking a second opinion. Mellink et al. reported 212 patients treated in a surgical oncology department seeking a second opinion [5]. Most patients needed more information, even if the first physician provided very broad explanations. Sometimes there was a bad contact with the first physician or a misunderstanding in the explanations delivered by the first physician, or a lack of trust or communication difficulties [1, 2]. Mellink and colleagues reported on discrepancies between physicians leading to modifications of treatment [6]. Tattersall et al. [7] studied 123 patients seeking a second opinion in the Sydney Cancer Center and found that the patients were seeking reassurance and validation of the information they had received at the diagnosis by their first physicians. Young Received 7 March 2014; accepted 11 November 2014. Address correspondence to Prof. Myriam Weyl Ben-Arush, Department of Pediatric Hematology Oncology, Meyer Children’s Hospital, Rambam Health Care Campus, POB 9602, Haifa 31096, Israel. E-mail: m [email protected]



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O. Mordechai et al.

people, women and well-educated people were those who needed more medical information [8]. Patient dissatisfaction may also be a reason for seeking a second opinion [8]. Previous studies on seeking a second opinion emphasize the additional burden to the health-care system [12–14]. Those studies were carried out in countries where people are covered by national health insurance. In our country, some of the second consultations are paid for by national insurance, and sometimes the parents asked for private consultations. Moumjid et al. [14] reported the need for a second opinion in patients treated by strict protocols. In Israel, most children are treated by internationals protocols and almost all centers deliver the same protocol, so most parents just need confirmation of the diagnosis and the advice of a more reputable or a religious authority [15]. An “informed parent” may question the quality of the evidence on which practice guidelines are based and search for a second opinion to obtain better quality and transparent clinical guidelines. In order to better understand the behavior of the parents in our institution, we performed a retrospective study aimed at investigating the epidemiology and motivations of the families who sought a second opinion. PATIENTS AND METHODS We developed a parent questionnaire (Appendix) that sought demographic and other characteristics of the sick child, exploring the context of the cancer, the treatment, and the reasons for seeking a second opinion. Seeking a second opinion was defined as meeting with a secondary physician either at our institution or others. Patients were selected consecutively and asked by telephone to select one or more answers from a range of specific options. They were asked whether they were seeking a second opinion because they required more information about the disease of their child, about treatment options or decisions; whether they were dissatisfied with the information or communication received so far; or because they were seeking reassurance that the diagnosis or treatment already suggested was appropriate. The use of complementary alternative medicine and the internet was also evaluated. Local Helsinki committee approval was obtained. Statistical Analysis Summary statistics were used to describe respondent characteristics and referral practices. Demographic and other characteristics of the parents who sought a second opinion and completed the questionnaire were analyzed using descriptive statistics. The Pearson chi square test, or the exact Fisher’s test, where appropriate, were used to compare outcomes from the questions. The subgroups sizes were small, as we avoided making a Type I error by selecting a lower significance level of the test, e.g. by rejecting the null hypothesis when P < .01 instead of P < .05. All analyses were performed using SPSS for Windows, version 21 (SPSS Inc, Chicago, Ill, USA). RESULTS One hundred and fifty consecutive parents of children with cancer recently treated in our Department of Pediatric Hematology Oncology completed the questionnaire by telephone (Table 1). Of these, 37 (24.7%) parents had sought a second opinion, 20 after diagnosis but before treatment, 13 during therapy, and 4 after therapy completion. Most of the parents agreed together to go for a second opinion (28) and 15 included Pediatric Hematology and Oncology

Seeking a Second Opinion in Pediatric Oncology TABLE 1.



Demographic Characteristic of Study Participants Percent (%)

Mean (±STD)

Age of parent

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41.48 (±8.1) Gender of Parent Male Female Family status Married Divorced Widow Other Ethnic origin Jewish Arabic Religious life Secular Religious Years of education

34.7 65.3 88 6.7 0.7 4.7 50 50 44.7 55.3 13.6 (±3.2)

Child age 11.3 (±6.6) Disease stage 3.32 (±1.1) Place of residence Urban Rural Working Yes No

55.3 44.7 68 32

the child in the decision. There was a correlation between higher socioeconomic status (P = .003) and the number of educational years to the decision to go for a second opinion (P = .001). Most of the parents who went for a second opinion also used the internet as a data source, but using the internet did not correlate with the decision (P = .157). There was no correlation between the age of parents, age of the sick child, family status, place of residence (urban vs. rural), disease group, stage of disease or using CAM (complementary alternative medicine or integrative health) on the decision to go for a second opinion. Non-religious parents went for a second opinion more often (P = .003). Twentysix of 75 Jewish parents went for a second opinion, versus 11 of 75 Arabic parents (P = .031). Twenty-eight families went to Israeli physicians for a second opinion and 12 families consulted with physicians abroad, as some families went both. Twenty-six parents paid for the consultation and 21 parents were satisfied with the second opinion versus 11 parents who found it was not effective (P < .001). Twenty-five of 37 parents who went for a second opinion reported that they received more information regarding the disease or therapy. Thirteen parents were advised to change the therapy and to stay in the second institution, but they all preferred to stay in the original department. Nine parents found the second opinion unsettling, and there was a correlation with the time of the process—parents who sought a second opinion during the diagnosis period found it more confusing, compared to parents who went during therapy (P < .001). The parents who received an offer to stay in the other clinic were much more confused about the second opinion (P < .001). C Informa Healthcare USA, Inc. Copyright 



O. Mordechai et al.

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DISCUSSION The main reason for seeking a second opinion in our study was confirmation of diagnosis or treatment rather than dissatisfaction with the opinion of the first pediatric oncologist. Most of the parents were demanding of more medical information and more details on treatment. We identified some factors that can contribute to the process, such as higher socio-economic state, education and secular families. Confirmation about the treatment protocol and the professional level of the hematologist oncologist or the surgeon were the main reasons for seeking a second opinion. Most of the parents advise other families to consult in order to feel confident with the therapeutic decision of their treating pediatric oncologist. We also identified a small group of parents who found the second opinion consultation to be confusing, mostly because of timing (during diagnosis) and also because of receiving an offer to stay in the other clinic. Quantitative data indicate that parental psychosocial distress is at its highest at the time of diagnosis, but decreases and approaches normal levels at 1 year post-diagnosis [16]. Similarly, Ley reported that only 30–50% of medical information is really understood by patients [17]. This study has strengths and limitations: the overall response rate was high and we succeeded to identify some important factors. The subgroups sizes were small and there are some potential biases, such as reporting bias, recall bias, and cultural bias. In order to be fully informed and therefore appropriately involved in the decisionmaking process, families may require access to additional clinicians who can provide further information and reassurance that the treatment regimen they will, are or have utilized is correct. Second opinion consultations were not uncommon and were mainly secondary to the desire for such reassurance. Pediatric oncologists should ensure that patients and their families feel comfortable requesting a second opinion consultation. Declaration of Interest The authors declare that they have no conflicts of interest. The authors alone are responsible for the content and writing of the paper. REFERENCES [1] Sikora K. Second opinions for patients with cancer. Br Med J. 1995;311:1179–1180. [2] Macdonald EA. Second opinions in oncology: Nuisance or opportunity? Clin Oncol. (R Coll Radiol.). 1997;9:418–420. [3] Heimpel H, Hess CF, Hohenberger W, et al. Second opinion in der Onkologie. Onkologie. 1999;22:246–250. [4] Hewitt M, Breen N, Devesa S. Cancer prevalence and survivorship issues: analyses of the 1992 National Health Interview Survey. J Natl Cancer Inst. 1999;91:1480–1486. [5] Mellink WA, Dulmen AM, Wiggers T, et al. Cancer patients seeking a second surgical opinion: results of a study on motives, needs, and expectations. J Clin Oncol. 2003;21:1492–1497. [6] Mellink WA, Henzen-Logmans SC, Bongaerts AH, et al. Discrepancy between second and first opinion in surgical oncological patients. Eur J Surg Oncol. 2006;32:108–112. [7] Tattersall MH, Dear RF, Jansen J, et al. Second opinions in oncology: the experiences of patients attending the Sydney Cancer Centre. Med J Aust. 2009;91:209–212. [8] Tam KF, Cheng DK, Ng TY, Ngan HY. The behaviors of seeking a second opinion from other healthcare professionals and the utilization of complementary and alternative medicine in gynecologic cancer patients. Support Care Cancer. 2005;13:679–684. [9] Sutherland HJ, Llewellyn-Thomas HA, Lockwood GA, et al. Cancer patients: Their desire for information and participation in treatment decisions. J R Soc Med. 1989;82:260–263. [10] Ong LM, Visser MR, Lammes FB, de Haes JC. Doctor-patient communication and cancer patients’ quality of life and satisfaction. Patient Educ Couns. 2000;41:145–156. Pediatric Hematology and Oncology

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Seeking a Second Opinion in Pediatric Oncology



[11] Jones R, Pearson J, McGregor S, et al. Cross sectional survey of patients’ satisfaction with information about cancer. Br Med J. 1999;319:1247–1248. [12] Weyl Ben Arush M, Geva H, Ofir R, et al. Prevalence and characteristics of complementary medicine used by pediatric cancer patients in a mixed western and middle-eastern population. J Pediatr Hematol Oncol. 2006;28:141–146. [13] Sato T, Takeichi M, Hara T, Koizumi S. Second opinion behaviour among Japanese primary care patients. Br J Gen Pract. 1999;49:546–550. [14] Moumjid N, Gafni A, Bremond A, Carrere MO. Seeking a second opinion: Do patients need a second opinion when practice guidelines exist? Health Policy. 2007;43–50. [15] Sapir R, Catane R, Kaufman B, et al. Cancer patient expectations of and communication with oncologists and oncology nurses: the experience of an integrated oncology palliative care service. Supportive Cancer Care. 2000;8:458–463. [16] Levinson W, Roter DL, Mullooly JP, Dull VT, Frankel RM. Physician-patient communication, the relationship with malpractice claims among primary care physician and surgeons. J Am Med Assoc. 1997;277:553–559. [17] Ley P. Recall by patients. In: Baum A, ed. Cambridge Handbook of Psychology, Health and Medicine. Cambridge, UK: Cambridge University Press; 1997:315–317.

Appendix—Questionnaire 1. 2. 3. 4. 5. 6. 7. 8. 9. 10. 11. 12. 13. 14. 15. 16. 17. 18. 19. 20. 21. 22. 23.

24. 25. 26. 27. 28.

Age Gender: male/female Family status: a. married b. divorced c. separated d. different Religion: a. Jewish, b. Moslem, c. Christian, d. Druze, e. Different Religious life style of family: a. secular, b. traditional, c. religious, d. ultra-religious Place of dwelling: a. city, b. large village, c. small village, d. moshav, e. kibbutz, f. community settlement Place of birth Year of immigration (Aliyah) Years of education Are you working? Yes No If yes, percentage of position: part time, full time Your profession What is your spouse’s profession? How many children are there in the family? Age of sick child What is the diagnosis? Stage of illness Date of diagnosis During the diagnostic process, did you think of going for a second opinion? Yes/no Were you afraid to go for a second opinion? Yes/no Did you go for a second opinion consultation? Yes/no If you did not go for second opinion; what were the reasons: a. personal, b. economic, c. other If your answer was positive, when did you go for the second opinion? a. during the diagnostic process, b. during the treatment period, c. towards the end of treatment, d. during relapse Were both parents in agreement that you should go for second opinion? Yes/no Was the child part of the decision making about going for a second opinion? Yes/no Did you go for a second opinion in Israel? Yes/no Did you go for a second opinion abroad? Yes/no Who participated in the second opinion consultation? A. parents/parent, b. grandparents, c. other family members, d. friends, e. others

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O. Mordechai et al.

29. Did your primary oncologist at the hospital recommend that you go for second opinion consultation? Yes/no 30. If your answer is negative, who recommended that you go? A. another physician, b. rabbi or religious person, c. family members, d. friends, e. your physician in your community 31. Was the treatment course recommended by the second opinion different than the one offered in the pediatric oncology ward? Yes/no 32. Was it helpful to go for a second opinion? Yes/no 33. Was it more confusing for you? Yes/no 34. Did the second opinion physician offer that you stay for treatment at his hospital? Yes/no 35. Did you get more medical information from the second opinion consultation? Yes/no 36. Did you go for a second opinion to more than one physician? Yes/no 37. In your opinion, how did your primary care physician in the ward react to your asking for a second opinion? Good/not good 38. Did you pay for the second opinion privately? Yes/no 39. Would you recommend other families go for a second opinion? Yes/no 40. Do you think you would turn to unconventional medicine during your treatment course? Yes/no. If yes, which? 41. Have you surfed the internet to find information? Yes/no 42. If so, in which languages? A. English, b. Hebrew, c. Arabic, d. Russian, e. other Thank you for your cooperation.

Pediatric Hematology and Oncology

Seeking a second opinion in pediatric oncology.

The goal of this study was to identify second opinion consultations by physicians and to determine patient and family factors that appeared to contrib...
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