J Canc Educ DOI 10.1007/s13187-015-0841-0
Patient-Physician Communication and Knowledge Regarding Fertility Issues from German Oncologists’ Perspective—a Quantitative Survey Dorit Buske 1 & Annekathrin Sender 2 & Diana Richter 2 & Elmar Brähler 2 & Kristina Geue 2
# American Association for Cancer Education 2015
Abstract Many people diagnosed with haematologic malignancies are of child-bearing age. Typical treatment courses pose a high risk of infertility, and a lot of people affected by this are in the midst of starting or growing their families. Thus, it is crucial that they are well informed about fertility preservation options and can discuss these with an oncologist early on in the development of their treatment plans. Unfortunately, however, this does not always happen. One hundred twenty oncologists from 37 German adult clinical facilities were surveyed regarding their discussions with young patients about fertility, family planning, and fertility preservation. Almost all of them said that they consider fertility preservation to be an important issue. They also reported several factors as having an influence on the likelihood and practicability of discussing these subjects. Most knew about the existence of cryoconservation of germ cells and the use of GnRH analogues (95 %), but only half of them claimed to have a thorough understanding of these options. Many said they would like to learn more about this and that informational brochures could be helpful. Even though many oncologists do have good working knowledge of the subject, patients of reproductive age are not yet consistently given comprehensive information about the options available to them. To Electronic supplementary material The online version of this article (doi:10.1007/s13187-015-0841-0) contains supplementary material, which is available to authorized users. * Kristina Geue [email protected] 1
Krankenhaus Grimma, Grimma, Germany
2
Department of Medical Psychology and Medical Sociology, University of Leipzig, Philipp-Rosenthal-Str. 55, 04103 Leipzig, Germany
improve oncologists’ knowledge of reproductive medicine, cooperation with fertility specialists should be facilitated, and informational leaflets should be made available both to patients and their medical care providers. Keywords Fertility preservation . Haematology . Child-bearing age . Oncologist attitudes . Physician-patient communication . Cancer treatment
Introduction The development of new therapies has increased survival time for young adults with malignant haematologic diseases [1]. Therefore, aspects of quality of life for this group are increasingly coming into focus. Haematologic neoplasms are among the most frequent malignancies in patients up to the age of 40 [2], and as of yet, survival is often achieved at the cost of gonadotoxic therapies that can impair fertility [3]. For instance, the risk of infertility after stem cell transplantation is sometimes as high as 100 % [3]. Of course, at the time of diagnosis and start of therapy, the survival of the patient is given the highest priority, while fertility preservation is assigned medium priority at most [4, 5]. Postponement of parenthood to later years in the general population increases the number of young oncologic patients who have not yet finished family planning at the time of diagnosis [6]. According to a study by Geue et al., about 58 % of childless cancer patients reported a strong desire to have children of their own [7]. For many of these patients, the threat of infertility is perceived nearly as seriously as that of the cancer diagnosis itself and places them under further psychological stress [6]. The use of fertility preservation measures can counteract this problem [8]. Patient awareness of these risks and possibilities is highly dependent on patient-physician
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communication. Though oncologists fear further stressing young patients by discussing infertility [9], patients themselves have indicated that such discussions helped them feel optimistic about their future, according to a study by Achille et al. [10]. To date, many studies have investigated the communication behaviour of healthcare professionals. Recent studies show that the majority of oncologists state that they always discuss fertility during informed consent discussions or that it should always be mentioned [11]. In a paper by Goodwin et al. [12], nearly all of the oncologists (93 %) surveyed reported discussing the effects of cancer therapy on future fertility with their patients. However, Geue et al. [7] surveyed 149 patients and reported that only 60 % of them remembered having discussed this topic with their oncologists. Cancer patients want clear and explicit communication, and complained that fertility was mentioned too late and too superficially [4, 5, 10] in the process of their treatments. The guidelines of the German (DGHO) [13] and the American oncology society (ASCO) [14] both recommend discussing the threat to fertility with every patient of reproductive age. Studies, however, have shown that there are factors that increase or decrease the likelihood of these discussions taking place. Gilbert et al. [11], for example, found prognosis and age of the patient to be such factors. Goodman et al.’s study [15] showed that referrals to fertility counselling depended on ethnicity, age, parenthood status, and tumour entity. Other explanations given for not discussing fertility were poor prognosis and the oncologist’s judgement that treatment should not be postponed for any reason. [16]. Furthermore, communication about fertility is uncomfortable for medical professionals when they feel insecure about their level of knowledge about reproductive medicine [9, 11, 15]. Most of previous studies existing on the subject investigated paediatric oncologists and therefore focussed on aspects specific to children [9, 12]. Often a qualitative design with small case numbers was used [4, 10]. Most studies were conducted in English-speaking countries and are not comparable to German conditions and the specifics of its healthcare system whereby health insurance is compulsory for most people at a fee determined by the person’s income but independent of other criteria like health status. Current policies in Germany require that patients pay out of pocket for the retrieval and storage of gametes, but health insurance providers are required to cover the costs of GnRH analogues and fertility treatment for married couples. Cryopreservation costs about 3000 € for oocytes and 350 € for sperm with an annual storage fee of 250 € ([7] and references therein). Another factor at play is the German embryo protection law (‘Embryonenschutzgesetz’) that prohibits freezing embryos as well as surrogate motherhood. This means cryoconservation of oocytes and ovarian tissue is the only legal option women have for storing gametes. Both methods are recommended for women up to the age of 35.
The present study aims to investigate German oncologists’ perspective on physician-patient communication in the field of adult haemato-oncology regarding family planning, fertility, and fertility preservation in young adults. The questions of interest are as follows: Are there factors that lessen the likelihood of discussing fertility even though requirements to do so with every patient are already in place? How knowledgeable are oncologists about fertility? What can be improved to support oncologists in this area?
Methods Study Design We reached out to oncologists working in the field of adult haemato-oncology to request their participation in the present cross-sectional study. A standardized email introducing the aims of the study was sent to 37 university hospital haemato-oncologic departments and 39 German Society of Hematology and Oncology (DGHO)-certified oncology centres. Contact data was obtained from the hospitals’ websites. The emails and questionnaires were sent to consultants along with a request to forward the mail to all oncologists working in the facility and to encourage them to complete the questionnaire. Questionnaires could be returned by email or anonymously via mail or fax. Oncologists who wished to have a printed questionnaire could receive it by mail. To increase the return rate, the facilities were reminded of the survey up to three times. Data was collected between November 2011 and June 2012. Measures The questionnaire contained self-developed items based on former studies [12, 16, 17] and was administered in German. We mostly used multiple choice and Likert scale questions. Some questions were open-ended. Before sending it out, we discussed the questionnaire with three haematologists who confirmed user comprehension. Cronbach’s alpha was used to estimate the reliability of the questionnaire. We determined Cronbach’s alpha for the most important questions of each of the main parts. Sociodemographic items we included were oncologists’ gender and year of birth, as well as facts about their qualifications and professional experience. The questionnaire consists of the following four main parts: 1.) Communication. This part contained general questions such as the following: Whether, when, and how often the oncologists discuss fertility issues with their patients, and how important they personally consider these issues to be: How important do you think patients’ desire to
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have a child/fertility/fertility preservation is? Possible answers were not/hardly/somewhat/considerably/very. Cronbach’s alpha for these three items is 0.844. We also wanted to know how the oncologists experience such discussions: In my experience, communicating with patients about their family planning and fertility is__________. The respondents could choose on a scale from −2 (uncomfortable for example) to 2 (comfortable for example) with five ranks in six items. Cronbach’s alpha of these six items is 0.762. 2.) Patient factors. We asked the respondents to decide how the provided patient factors influence the likelihood of discussing fertility with them: Please rate to what extent the patient characteristics listed below increase or decrease the likelihood of your discussing fertility issues with them. Possible answer items were more likely/independent/less likely. Cronbach’s alpha for these 17 characteristics is 0.446, which is in accordance to the heterogeneous nature of this question’s sub-items. 3.) Knowledge. First, oncologists were asked whether they are familiar with specific fertility preservation measures; and second, how much they know about them: Which fertility preservation options are you familiar with and how much do you know about them? The answer items were known/unknown and nothing/a little/a lot. We included six different measures of fertility preservation. The results for Cronbach’s alpha were 0.583 for the first part of the question and 0.850 for the second. 4.) Referral and desired support. Oncologists were asked whether they refer young patients to reproductive medicine facilities, and how satisfied they are with the cooperation with these facilities. We also asked them to rate the helpfulness of nine different types of physicianpatient communication support: How helpful are the options below in supporting patient-physician communication about family planning and fertility? The possible answers were: It would not/hardly/partially/considerably/greatly help me, if a reproductive medicine specialist (for example) was present. Cronbach’s alpha for the total of the nine different items is 0.731. We compressed the items ‘not’ and ‘hardly’ as well as ‘considerably’ and ‘strongly’ for the analysis resulting in a three rank scale. Items as well as answers are shown in the tables and in the supplement.
Analysis The statistical analysis was performed using the software package SPSS 20.0. Descriptive statistics were calculated (frequencies, means and standard deviations) and sample characteristics were defined. The internal reliability was estimated by
calculating Cronbach’s alpha for the main parts of the questionnaire.
Results Sample Characteristics Oncologists from 37 of the 76 facilities we contacted (49 %) returned completed questionnaires. Of these facilities, 25 were university hospitals. We could not determine an exact return rate because we do not know whether the consultants we contacted forwarded the email with the questionnaire or how many oncologists received the email when it was forwarded. An average of three oncologists (minimum 1; maximum 7) per responding hospital filled in the questionnaire. A total of 121 questionnaires were completed and available for analysis. One was excluded because the oncologist stated he/she was not confronted with issues of fertility and patients’ desire to have a child. Fifty-one female and 69 male respondents working in adult haemato-oncology departments filled in the 120 forms included in our analysis. Their ages ranged from 27 to 63 years with a mean age of 37.6 years. They had an average professional experience of 10.0 years; 51 of them were still in their speciality training. Eighty percent of the forms came from oncologists working at university hospitals. Details on the sociodemographic characteristics of the participants can be found in Table S1 in the supplement. Communication The majority of the oncologists rated the topics fertility (89.2 %), the desire to have a child (85.8 %), and fertility preservation (92.5 %) as important (Figure S3). About two thirds of the oncologists stated they always discuss possible fertility impairment (65.8 %) and fertility preservation (65.3 %) with young haemato-oncologic patients. A quarter of the oncologists mentioned fertility impairment resulting from treatment (27.5 %) and fertility preservation (26.3 %) in most of the cases. The majority of the oncologists (59.2 %) mentioned fertility once during the course of treatment. Almost a quarter (24.2 %) addressed the issue two times. Normally (84.2 %), possible fertility impairment was discussed during the informed consent discussion prior to the first treatment. The most frequently cited reasons for not mentioning fertility impairment were palliative situations (N=11), an urgent indication for therapy (N=9), strong anticipated psychological stress for the patients (N=5), and chemotherapy had already taken place. Another part of the questionnaire investigated how oncologists experience discussions with patients about their desire to have a child, fertility, and fertility preservation. Almost half
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of the oncologists (42.9 %) considered this communication to be difficult, and a quarter of them (25.2 %) felt it to be a burden. The majority of the oncologists (94.1 %) thought these discussions were important, and two thirds of them (67.2 %) considered them to be successful. For details, see table S2 in the supplement. Patient Factors Table 1 shows which patient characteristics increase or decrease the likelihood of oncologists initiating a discussion about fertility. Discussions about family planning are less likely to take place when patients are older than 35 (47 %) and have a poor prognosis (62.7 %). In contrast, discussions are more likely to occur when patients are younger than 35 (81.5 %), have a good prognosis (64.4 %), and a high risk of infertility (61.9 %). Other factors (gender, relationship, parental status, financial situation, HIV, homosexuality, psychological condition) are mainly classified as having no influence on the likelihood of discussions about fertility taking place. Knowledge of the Oncologists All of the oncologists we surveyed were familiar with cryoconservation of spermatozoa, and half of them (49.6 %) stated having good knowledge about this fertility-preserving measure. The best-known fertility preservation measure for women was GnRH analogues (95.0 %) and cryoconservation
of oocytes (97.5 %) and ovarian tissue (87.9 %) (Table 2). In total, one third of the oncologists (37.3 %) felt well or verywell informed about fertility preservation measures. Referral and Desired Support Nearly all oncologists (96.6 %) referred young cancer patients concerned about their fertility to other facilities or departments (gynaecology, andrology, fertility centres). Seventy-five percent of oncologists were very satisfied with the cooperation with these facilities. According to the oncologists, cooperation could be improved by better communication (N=8), more information or training (N=8), and shorter wait times on weekends (N=5). Consultations with reproductive specialists (40 %), more information about methods in reproductive medicine (50 %), written information for patients (48.3 %), and the presence of the patient’s partner (43.3 %) were regarded as helpful supports for discussions about fertility and the desire to have a child. In contrast, the presence of nursing staff (90 %), reproductive medicine specialists (44.1 %), or psychologists (65 %) during the discussion, as well as communication training (45.8 %) were not considered helpful (Table 3).
Discussion Communication
Table 1 Please rate to what extent the patient characteristics listed below increase or decrease the likelihood of your discussing fertility issues with them. (N=120) Discussions:
More likely Independent Less likely (%) (%) (%)
Female Male Under 35 years Over 35 years In a relationship Single Already a parent Childless Good financial situation
35.3 15.3 81.5 7.6 4.2 34.5 4.2 40.3 8.5
63.0 76.3 16.8 45.4 84.9 64.7 67.2 58.9 90.7
1.7 8.4 1.7 47.0 10.9 0.8 28.6 0.8 0.8
Bad financial situation Poor prognosis Good prognosis HIV positive Homosexual Poor psychological condition Good psychological condition High risk of infertility
0.8 5.1 64.4 3.4 1.7 3.4 41.0 61.9
92.4 32.2 35.6 67.0 63.8 54.7 57.3 37.3
6.8 62.7 0 29.6 34.5 41.9 1.7 0.8
The aim of this study was to evaluate physicians’ communication with young adult haemato-oncologic cancer patients about the topics of fertility, family planning, and fertility preservation. In our study, most oncologists assigned a high priority to these subjects and said it is important to discuss family planning and fertility preservation. Although 96 % of the oncologists in the study by Küçük et al. stated that ‘fertility preservation should be prioritized when planning a course of treatment’, only 40 % reported discussing fertility preservation ‘as a routine procedure’ [17]. In contrast, the majority of our respondents reported that they routinely discuss aspects of fertility with their patients. Almost half (42.9 %) of our respondents said discussing fertility preservation with patients is difficult for them. A qualitative study by Quinn et al. [9] has identified several factors that contribute to this unease. The same study also stated that physicians’ personal discomfort reduces the likelihood of them initiating fertility discussions. The most significant hindering factor was ‘lack of knowledge or training’. Further, below we describe several types of support oncologists that should be provided to help reduce their discomfort in these situations.
J Canc Educ Table 2 Which fertility preservation options are you familiar with and how much do you know about them? (N=120)
Known
Knowledge
Yes (%)
No (%)
Nothing (%)
A little (%)
A lot (%)
100.0 54.7
0 45.3
5.1 57.8
45.3 33.9
49.6 8.3
97.5 87.9 55.1 95.0
2.5 12.1 44.9 5.0
13.7 31.0 59.1 8.7
66.6 53.5 30.0 44.3
19.7 15.5 10.9 47.0
Male Cryoconservation of sperm Cryoconservation of testis tissue Female Cryoconservation of oocytes Cryoconservation of ovarial tissue Relocation of ovaries Gonad protection by GnRH analogues
About two thirds of the oncologists in the study by Quinn et al. [9] reported that they generally consider the discussions they have with patients about fertility preservation to be successful. This is in accordance with patients’ perception in a different study by Geue et al. [7]. Patient Factors The oncologists we surveyed reported that the following patient characteristics reduce the likelihood of discussing fertility with them: age of 35 years or above and poor prognosis. Patients younger than 35 years, with a good prognosis, or a high risk of infertility were approached more often about this subject. Other factors did not influence the likelihood of discussions about fertility. Clear discrepancies appear when these results are compared to those obtained from patient interviews. The likelihood of initiating fertility discussions increases for most oncologists (81.5 %) if a patient is younger than 35 years old. Almost half of the oncologists (47 %) said older age is an inhibiting factor. Although defining the age of 35 as a threshold is very questionable, it is in fact in accordance with Fertiprotekt recommendations for women. Yee et al. surveyed Table 3 How helpful are the options below in supporting patient-physician communication about family planning and fertility? (N=120)
men who banked sperm before cancer treatment. 39.2 % were older than 30. One patient was even over 50 [18]. In 2011, the mother of every fifth baby born in Germany was 35 years or older (German Federal Statistical Office, personal communication). Furthermore, the risk of infertility is higher for older than for younger women [2]. As such, discussing fertility with cancer patients in this age bracket is not only relevant, it has increased urgency. Most oncologists (62.7 %) agreed that discussing patients’ fertility with them is less likely if their prognosis is poor. This is concordant with many other studies [4, 9, 11]. The nurses interviewed by King et al. found the idea of offering fertility preservation options to patients who might not survive difficult. Another challenge is discussing what will happen with preserved sperm or ova in case of death. Posthumous reproduction is a field with many legal and ethical problems that trouble oncologists [19]. In a study by Schover et al., 60 % of young cancer patients wanted to have a child even if they were to die young. Their findings [20] indicate that cancer diagnosis does not diminish the desire to have children. One motivation driving this is the desire, when facing one’s own mortality [21], to leave a part of oneself in this world.
It would help me, if…
Presence A reproductive medicine specialist was present. A nurse was present. The patient’s partner was present. Other relatives were present. A psychologist was present. Information/training I had more exchange with reproductive physicians. I had more information on methods used in reproductive medicine. I had more information leaflets for my patients. Communication training was offered.
Not/hardly (%)
Partially (%)
Considerably/ greatly (%)
44.1 90.0 18.3 67.5 65.0
30.0 9.2 38.3 24.2 29.2
25.9 0.8 43.3 8.3 5.8
15.8 22.5
44.2 27.5
40.0 50.0
24.2 45.8
27.5 31.7
48.3 22.5
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Oncologists discuss fertility issues more often if there is a high risk of infertility. In accordance with this finding, a study by Anderson et al. confirms that a low risk of infertility reduces the likelihood that a discussion about fertility will take place [22]. In a study by Goodwin et al., 63.3 % of oncologists reported discussing infertility with all patients at risk of infertility [12]. However, the risk of infertility varies from one chemotherapeutic regimen to the next [23]. It remains difficult to estimate a patient’s individual risk of infertility. Furthermore, some of the male patients who were interviewed by Peddie et al. were glad to have stored sperm irrespective of how high their risk of infertility might be. The likelihood of relapse necessitating a second-line therapy and potentially affecting fertility is impossible to predict [4]. These imponderables increase the importance of discussing fertility preservation with every patient irrespective of what their individual risk of infertility is estimated to be. Oncologists’ Knowledge of Fertility Preservation Methods In general, oncologists know more about fertility preservation for males than for females. It is therefore difficult to comprehensively inform patients about cryoconservation of oocytes when two thirds of oncologists know little about it. Patients seem to notice this uncertainty and often want to consult a reproductive expert additionally even if they have completed their family planning [5]. Geue et al. also confirmed that consulting a reproductive expert was more satisfying for patients than discussing it with their oncologists only [7]. Quinn et al. [9] stated that the less knowledge a physician has about reproductive medicine, the higher the barrier is to them discussing this topic. This not only refers to theoretical knowledge but also to practical aspects like being familiar with an appropriate fertility clinic and its contact person [12]. Referral and Desired Support Nearly all oncologists (96.6 %) in our study said they refer patients who want to have a child to reproductive facilities. Because a large percentage of them work at university hospitals (80 %), this often means the university hospital’s own fertility department is the address of choice. The great distances and bureaucratic expenditure that played a large role in Gilbert et al.’s study [11] did not constitute a problem in ours. Almost all German university hospitals take part in Fertiprotekt, a network of university and nonuniversity facilities in Germany, Austria, and Switzerland that aims to provide fertility counselling to every cancer patient of childbearing age. Oncologists said the following things would provide meaningful support for patient-physician communication about this topic: more exchange with physicians working in reproductive medicine, more information about methods used in
reproductive medicine, and information leaflets. This desire for more information and exchange was also reported in other studies [9, 12]. A study by Goodmann et al. [15] showed how important good cooperation with a reproductive facility can be. Patients suffering from breast cancer were referred ten times more often than patients with other malignancies because of better cooperation between gynaecologists and the fertility department. Shimizu et al. showed that reproductive specialists are willing to treat young breast cancer patients. However, because of their lack of specialization in cancer, they did want more information exchange with oncologists [24]. Studies by Adams [16] and Küçük [17] show that, while most oncologists would like to learn more about fertility preservation, only a minority of them value communication training. The patients investigated by Bastings et al. [25] were mostly content with the discussions they had had about fertility preservation with their oncologists, but they also had suggestions for improvements. The main criticisms were that no psychological counselling was offered, and that the discussions were too short and superficial. The shortcomings which made it more difficult for these patients to make decisions about fertility preservation are things that could potentially be improved by communication training. Other studies done mostly among paediatric oncologists report that physicians do, in fact, desire more such training [11, 12]. Perhaps this is because it is explicitly required in paediatric settings that fertility be discussed with both children and parents. Caregivers might consider this to be more difficult and, as such, to necessitate more training. An especially large proportion of medical professions find it helpful to have information leaflets that can be handed out to patients [10, 17]. According to Küçük et al. [17], the likelihood of fertility discussions occurring increases when doctors have information leaflets available on the subject. Patients interviewed by Lee et al. [5] reported that information leaflets can serve as a basis for further discussions but that they also felt burdened by them sometimes. Another factor respondent ranked as helpful was the presence of the patient’s partner during discussions about fertility. This is consistent with former studies which found that women in particular often helped facilitate their partner’s decision to bank sperm [10]. Limitations Because this is a cross-sectional study, it only reflects the selfassessment of the oncologists who took part. More difficult to conduct prospective studies involving audio or video recordings of physician-patient communication may appear be more objective at first glance. The oncologists’ awareness of being recorded could however distort their behaviour. It is of note that most of the respondents we surveyed were quite young. The topic of fertility might feel more personal for young
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physicians because they are in training, and founding a family is a current theme at their stage of life. Furthermore, most of the respondents were working at university hospitals. Standards of counselling may be higher in these facilities. Another limitation of our study is the possibility of selection bias. It is possible that the respondents who were already sensitized to and interested in this topic were more apt to participate in the study. The influence of social desirability must also be mentioned. Every oncologist knows about the principles of informed consent that require a comprehensive discussion of risks and side effects of planned therapies, among them the possible impairment of fertility. This might have led to an overestimation of the real rate of discussing fertility in informed consent discussions. Self-developed questionnaire items impede comparison with other studies but are currently common practice in this field of research.
5.
6. 7.
8.
9.
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11.
Conclusion Guidelines already require physicians to discuss fertility, family planning, and fertility preservation with every cancer patient of reproductive age they treat. The results of our study also illustrate that oncologists working in adult haematooncology are indeed aware of the significance of the subject. Nevertheless, there are patient characteristics that influence the likelihood of these discussions actually taking place. Further studies are necessary to investigate patients’ opinions and desires concerning discussions between them and their oncologists about family planning, and whether the measures we suggest really can improve and support that communication. Acknowledgment We thank all participating oncologists for filling in the questionnaire. This study was supported by the German Josè Carreras Leukaemia Foundation. Conflict of Interest All authors declare no conflict of interest.
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Patient-Physician Communication and Knowledge Regarding Fertility Issues from German Oncologists’ Perspective—a Quantitative Survey Dorit Buske 1 & Annekathrin Sender 2 & Diana Richter 2 & Elmar Brähler 2 & Kristina Geue 2
# American Association for Cancer Education 2015
Abstract Many people diagnosed with haematologic malignancies are of child-bearing age. Typical treatment courses pose a high risk of infertility, and a lot of people affected by this are in the midst of starting or growing their families. Thus, it is crucial that they are well informed about fertility preservation options and can discuss these with an oncologist early on in the development of their treatment plans. Unfortunately, however, this does not always happen. One hundred twenty oncologists from 37 German adult clinical facilities were surveyed regarding their discussions with young patients about fertility, family planning, and fertility preservation. Almost all of them said that they consider fertility preservation to be an important issue. They also reported several factors as having an influence on the likelihood and practicability of discussing these subjects. Most knew about the existence of cryoconservation of germ cells and the use of GnRH analogues (95 %), but only half of them claimed to have a thorough understanding of these options. Many said they would like to learn more about this and that informational brochures could be helpful. Even though many oncologists do have good working knowledge of the subject, patients of reproductive age are not yet consistently given comprehensive information about the options available to them. To Electronic supplementary material The online version of this article (doi:10.1007/s13187-015-0841-0) contains supplementary material, which is available to authorized users. * Kristina Geue [email protected] 1
Krankenhaus Grimma, Grimma, Germany
2
Department of Medical Psychology and Medical Sociology, University of Leipzig, Philipp-Rosenthal-Str. 55, 04103 Leipzig, Germany
improve oncologists’ knowledge of reproductive medicine, cooperation with fertility specialists should be facilitated, and informational leaflets should be made available both to patients and their medical care providers. Keywords Fertility preservation . Haematology . Child-bearing age . Oncologist attitudes . Physician-patient communication . Cancer treatment
Introduction The development of new therapies has increased survival time for young adults with malignant haematologic diseases [1]. Therefore, aspects of quality of life for this group are increasingly coming into focus. Haematologic neoplasms are among the most frequent malignancies in patients up to the age of 40 [2], and as of yet, survival is often achieved at the cost of gonadotoxic therapies that can impair fertility [3]. For instance, the risk of infertility after stem cell transplantation is sometimes as high as 100 % [3]. Of course, at the time of diagnosis and start of therapy, the survival of the patient is given the highest priority, while fertility preservation is assigned medium priority at most [4, 5]. Postponement of parenthood to later years in the general population increases the number of young oncologic patients who have not yet finished family planning at the time of diagnosis [6]. According to a study by Geue et al., about 58 % of childless cancer patients reported a strong desire to have children of their own [7]. For many of these patients, the threat of infertility is perceived nearly as seriously as that of the cancer diagnosis itself and places them under further psychological stress [6]. The use of fertility preservation measures can counteract this problem [8]. Patient awareness of these risks and possibilities is highly dependent on patient-physician
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communication. Though oncologists fear further stressing young patients by discussing infertility [9], patients themselves have indicated that such discussions helped them feel optimistic about their future, according to a study by Achille et al. [10]. To date, many studies have investigated the communication behaviour of healthcare professionals. Recent studies show that the majority of oncologists state that they always discuss fertility during informed consent discussions or that it should always be mentioned [11]. In a paper by Goodwin et al. [12], nearly all of the oncologists (93 %) surveyed reported discussing the effects of cancer therapy on future fertility with their patients. However, Geue et al. [7] surveyed 149 patients and reported that only 60 % of them remembered having discussed this topic with their oncologists. Cancer patients want clear and explicit communication, and complained that fertility was mentioned too late and too superficially [4, 5, 10] in the process of their treatments. The guidelines of the German (DGHO) [13] and the American oncology society (ASCO) [14] both recommend discussing the threat to fertility with every patient of reproductive age. Studies, however, have shown that there are factors that increase or decrease the likelihood of these discussions taking place. Gilbert et al. [11], for example, found prognosis and age of the patient to be such factors. Goodman et al.’s study [15] showed that referrals to fertility counselling depended on ethnicity, age, parenthood status, and tumour entity. Other explanations given for not discussing fertility were poor prognosis and the oncologist’s judgement that treatment should not be postponed for any reason. [16]. Furthermore, communication about fertility is uncomfortable for medical professionals when they feel insecure about their level of knowledge about reproductive medicine [9, 11, 15]. Most of previous studies existing on the subject investigated paediatric oncologists and therefore focussed on aspects specific to children [9, 12]. Often a qualitative design with small case numbers was used [4, 10]. Most studies were conducted in English-speaking countries and are not comparable to German conditions and the specifics of its healthcare system whereby health insurance is compulsory for most people at a fee determined by the person’s income but independent of other criteria like health status. Current policies in Germany require that patients pay out of pocket for the retrieval and storage of gametes, but health insurance providers are required to cover the costs of GnRH analogues and fertility treatment for married couples. Cryopreservation costs about 3000 € for oocytes and 350 € for sperm with an annual storage fee of 250 € ([7] and references therein). Another factor at play is the German embryo protection law (‘Embryonenschutzgesetz’) that prohibits freezing embryos as well as surrogate motherhood. This means cryoconservation of oocytes and ovarian tissue is the only legal option women have for storing gametes. Both methods are recommended for women up to the age of 35.
The present study aims to investigate German oncologists’ perspective on physician-patient communication in the field of adult haemato-oncology regarding family planning, fertility, and fertility preservation in young adults. The questions of interest are as follows: Are there factors that lessen the likelihood of discussing fertility even though requirements to do so with every patient are already in place? How knowledgeable are oncologists about fertility? What can be improved to support oncologists in this area?
Methods Study Design We reached out to oncologists working in the field of adult haemato-oncology to request their participation in the present cross-sectional study. A standardized email introducing the aims of the study was sent to 37 university hospital haemato-oncologic departments and 39 German Society of Hematology and Oncology (DGHO)-certified oncology centres. Contact data was obtained from the hospitals’ websites. The emails and questionnaires were sent to consultants along with a request to forward the mail to all oncologists working in the facility and to encourage them to complete the questionnaire. Questionnaires could be returned by email or anonymously via mail or fax. Oncologists who wished to have a printed questionnaire could receive it by mail. To increase the return rate, the facilities were reminded of the survey up to three times. Data was collected between November 2011 and June 2012. Measures The questionnaire contained self-developed items based on former studies [12, 16, 17] and was administered in German. We mostly used multiple choice and Likert scale questions. Some questions were open-ended. Before sending it out, we discussed the questionnaire with three haematologists who confirmed user comprehension. Cronbach’s alpha was used to estimate the reliability of the questionnaire. We determined Cronbach’s alpha for the most important questions of each of the main parts. Sociodemographic items we included were oncologists’ gender and year of birth, as well as facts about their qualifications and professional experience. The questionnaire consists of the following four main parts: 1.) Communication. This part contained general questions such as the following: Whether, when, and how often the oncologists discuss fertility issues with their patients, and how important they personally consider these issues to be: How important do you think patients’ desire to
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have a child/fertility/fertility preservation is? Possible answers were not/hardly/somewhat/considerably/very. Cronbach’s alpha for these three items is 0.844. We also wanted to know how the oncologists experience such discussions: In my experience, communicating with patients about their family planning and fertility is__________. The respondents could choose on a scale from −2 (uncomfortable for example) to 2 (comfortable for example) with five ranks in six items. Cronbach’s alpha of these six items is 0.762. 2.) Patient factors. We asked the respondents to decide how the provided patient factors influence the likelihood of discussing fertility with them: Please rate to what extent the patient characteristics listed below increase or decrease the likelihood of your discussing fertility issues with them. Possible answer items were more likely/independent/less likely. Cronbach’s alpha for these 17 characteristics is 0.446, which is in accordance to the heterogeneous nature of this question’s sub-items. 3.) Knowledge. First, oncologists were asked whether they are familiar with specific fertility preservation measures; and second, how much they know about them: Which fertility preservation options are you familiar with and how much do you know about them? The answer items were known/unknown and nothing/a little/a lot. We included six different measures of fertility preservation. The results for Cronbach’s alpha were 0.583 for the first part of the question and 0.850 for the second. 4.) Referral and desired support. Oncologists were asked whether they refer young patients to reproductive medicine facilities, and how satisfied they are with the cooperation with these facilities. We also asked them to rate the helpfulness of nine different types of physicianpatient communication support: How helpful are the options below in supporting patient-physician communication about family planning and fertility? The possible answers were: It would not/hardly/partially/considerably/greatly help me, if a reproductive medicine specialist (for example) was present. Cronbach’s alpha for the total of the nine different items is 0.731. We compressed the items ‘not’ and ‘hardly’ as well as ‘considerably’ and ‘strongly’ for the analysis resulting in a three rank scale. Items as well as answers are shown in the tables and in the supplement.
Analysis The statistical analysis was performed using the software package SPSS 20.0. Descriptive statistics were calculated (frequencies, means and standard deviations) and sample characteristics were defined. The internal reliability was estimated by
calculating Cronbach’s alpha for the main parts of the questionnaire.
Results Sample Characteristics Oncologists from 37 of the 76 facilities we contacted (49 %) returned completed questionnaires. Of these facilities, 25 were university hospitals. We could not determine an exact return rate because we do not know whether the consultants we contacted forwarded the email with the questionnaire or how many oncologists received the email when it was forwarded. An average of three oncologists (minimum 1; maximum 7) per responding hospital filled in the questionnaire. A total of 121 questionnaires were completed and available for analysis. One was excluded because the oncologist stated he/she was not confronted with issues of fertility and patients’ desire to have a child. Fifty-one female and 69 male respondents working in adult haemato-oncology departments filled in the 120 forms included in our analysis. Their ages ranged from 27 to 63 years with a mean age of 37.6 years. They had an average professional experience of 10.0 years; 51 of them were still in their speciality training. Eighty percent of the forms came from oncologists working at university hospitals. Details on the sociodemographic characteristics of the participants can be found in Table S1 in the supplement. Communication The majority of the oncologists rated the topics fertility (89.2 %), the desire to have a child (85.8 %), and fertility preservation (92.5 %) as important (Figure S3). About two thirds of the oncologists stated they always discuss possible fertility impairment (65.8 %) and fertility preservation (65.3 %) with young haemato-oncologic patients. A quarter of the oncologists mentioned fertility impairment resulting from treatment (27.5 %) and fertility preservation (26.3 %) in most of the cases. The majority of the oncologists (59.2 %) mentioned fertility once during the course of treatment. Almost a quarter (24.2 %) addressed the issue two times. Normally (84.2 %), possible fertility impairment was discussed during the informed consent discussion prior to the first treatment. The most frequently cited reasons for not mentioning fertility impairment were palliative situations (N=11), an urgent indication for therapy (N=9), strong anticipated psychological stress for the patients (N=5), and chemotherapy had already taken place. Another part of the questionnaire investigated how oncologists experience discussions with patients about their desire to have a child, fertility, and fertility preservation. Almost half
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of the oncologists (42.9 %) considered this communication to be difficult, and a quarter of them (25.2 %) felt it to be a burden. The majority of the oncologists (94.1 %) thought these discussions were important, and two thirds of them (67.2 %) considered them to be successful. For details, see table S2 in the supplement. Patient Factors Table 1 shows which patient characteristics increase or decrease the likelihood of oncologists initiating a discussion about fertility. Discussions about family planning are less likely to take place when patients are older than 35 (47 %) and have a poor prognosis (62.7 %). In contrast, discussions are more likely to occur when patients are younger than 35 (81.5 %), have a good prognosis (64.4 %), and a high risk of infertility (61.9 %). Other factors (gender, relationship, parental status, financial situation, HIV, homosexuality, psychological condition) are mainly classified as having no influence on the likelihood of discussions about fertility taking place. Knowledge of the Oncologists All of the oncologists we surveyed were familiar with cryoconservation of spermatozoa, and half of them (49.6 %) stated having good knowledge about this fertility-preserving measure. The best-known fertility preservation measure for women was GnRH analogues (95.0 %) and cryoconservation
of oocytes (97.5 %) and ovarian tissue (87.9 %) (Table 2). In total, one third of the oncologists (37.3 %) felt well or verywell informed about fertility preservation measures. Referral and Desired Support Nearly all oncologists (96.6 %) referred young cancer patients concerned about their fertility to other facilities or departments (gynaecology, andrology, fertility centres). Seventy-five percent of oncologists were very satisfied with the cooperation with these facilities. According to the oncologists, cooperation could be improved by better communication (N=8), more information or training (N=8), and shorter wait times on weekends (N=5). Consultations with reproductive specialists (40 %), more information about methods in reproductive medicine (50 %), written information for patients (48.3 %), and the presence of the patient’s partner (43.3 %) were regarded as helpful supports for discussions about fertility and the desire to have a child. In contrast, the presence of nursing staff (90 %), reproductive medicine specialists (44.1 %), or psychologists (65 %) during the discussion, as well as communication training (45.8 %) were not considered helpful (Table 3).
Discussion Communication
Table 1 Please rate to what extent the patient characteristics listed below increase or decrease the likelihood of your discussing fertility issues with them. (N=120) Discussions:
More likely Independent Less likely (%) (%) (%)
Female Male Under 35 years Over 35 years In a relationship Single Already a parent Childless Good financial situation
35.3 15.3 81.5 7.6 4.2 34.5 4.2 40.3 8.5
63.0 76.3 16.8 45.4 84.9 64.7 67.2 58.9 90.7
1.7 8.4 1.7 47.0 10.9 0.8 28.6 0.8 0.8
Bad financial situation Poor prognosis Good prognosis HIV positive Homosexual Poor psychological condition Good psychological condition High risk of infertility
0.8 5.1 64.4 3.4 1.7 3.4 41.0 61.9
92.4 32.2 35.6 67.0 63.8 54.7 57.3 37.3
6.8 62.7 0 29.6 34.5 41.9 1.7 0.8
The aim of this study was to evaluate physicians’ communication with young adult haemato-oncologic cancer patients about the topics of fertility, family planning, and fertility preservation. In our study, most oncologists assigned a high priority to these subjects and said it is important to discuss family planning and fertility preservation. Although 96 % of the oncologists in the study by Küçük et al. stated that ‘fertility preservation should be prioritized when planning a course of treatment’, only 40 % reported discussing fertility preservation ‘as a routine procedure’ [17]. In contrast, the majority of our respondents reported that they routinely discuss aspects of fertility with their patients. Almost half (42.9 %) of our respondents said discussing fertility preservation with patients is difficult for them. A qualitative study by Quinn et al. [9] has identified several factors that contribute to this unease. The same study also stated that physicians’ personal discomfort reduces the likelihood of them initiating fertility discussions. The most significant hindering factor was ‘lack of knowledge or training’. Further, below we describe several types of support oncologists that should be provided to help reduce their discomfort in these situations.
J Canc Educ Table 2 Which fertility preservation options are you familiar with and how much do you know about them? (N=120)
Known
Knowledge
Yes (%)
No (%)
Nothing (%)
A little (%)
A lot (%)
100.0 54.7
0 45.3
5.1 57.8
45.3 33.9
49.6 8.3
97.5 87.9 55.1 95.0
2.5 12.1 44.9 5.0
13.7 31.0 59.1 8.7
66.6 53.5 30.0 44.3
19.7 15.5 10.9 47.0
Male Cryoconservation of sperm Cryoconservation of testis tissue Female Cryoconservation of oocytes Cryoconservation of ovarial tissue Relocation of ovaries Gonad protection by GnRH analogues
About two thirds of the oncologists in the study by Quinn et al. [9] reported that they generally consider the discussions they have with patients about fertility preservation to be successful. This is in accordance with patients’ perception in a different study by Geue et al. [7]. Patient Factors The oncologists we surveyed reported that the following patient characteristics reduce the likelihood of discussing fertility with them: age of 35 years or above and poor prognosis. Patients younger than 35 years, with a good prognosis, or a high risk of infertility were approached more often about this subject. Other factors did not influence the likelihood of discussions about fertility. Clear discrepancies appear when these results are compared to those obtained from patient interviews. The likelihood of initiating fertility discussions increases for most oncologists (81.5 %) if a patient is younger than 35 years old. Almost half of the oncologists (47 %) said older age is an inhibiting factor. Although defining the age of 35 as a threshold is very questionable, it is in fact in accordance with Fertiprotekt recommendations for women. Yee et al. surveyed Table 3 How helpful are the options below in supporting patient-physician communication about family planning and fertility? (N=120)
men who banked sperm before cancer treatment. 39.2 % were older than 30. One patient was even over 50 [18]. In 2011, the mother of every fifth baby born in Germany was 35 years or older (German Federal Statistical Office, personal communication). Furthermore, the risk of infertility is higher for older than for younger women [2]. As such, discussing fertility with cancer patients in this age bracket is not only relevant, it has increased urgency. Most oncologists (62.7 %) agreed that discussing patients’ fertility with them is less likely if their prognosis is poor. This is concordant with many other studies [4, 9, 11]. The nurses interviewed by King et al. found the idea of offering fertility preservation options to patients who might not survive difficult. Another challenge is discussing what will happen with preserved sperm or ova in case of death. Posthumous reproduction is a field with many legal and ethical problems that trouble oncologists [19]. In a study by Schover et al., 60 % of young cancer patients wanted to have a child even if they were to die young. Their findings [20] indicate that cancer diagnosis does not diminish the desire to have children. One motivation driving this is the desire, when facing one’s own mortality [21], to leave a part of oneself in this world.
It would help me, if…
Presence A reproductive medicine specialist was present. A nurse was present. The patient’s partner was present. Other relatives were present. A psychologist was present. Information/training I had more exchange with reproductive physicians. I had more information on methods used in reproductive medicine. I had more information leaflets for my patients. Communication training was offered.
Not/hardly (%)
Partially (%)
Considerably/ greatly (%)
44.1 90.0 18.3 67.5 65.0
30.0 9.2 38.3 24.2 29.2
25.9 0.8 43.3 8.3 5.8
15.8 22.5
44.2 27.5
40.0 50.0
24.2 45.8
27.5 31.7
48.3 22.5
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Oncologists discuss fertility issues more often if there is a high risk of infertility. In accordance with this finding, a study by Anderson et al. confirms that a low risk of infertility reduces the likelihood that a discussion about fertility will take place [22]. In a study by Goodwin et al., 63.3 % of oncologists reported discussing infertility with all patients at risk of infertility [12]. However, the risk of infertility varies from one chemotherapeutic regimen to the next [23]. It remains difficult to estimate a patient’s individual risk of infertility. Furthermore, some of the male patients who were interviewed by Peddie et al. were glad to have stored sperm irrespective of how high their risk of infertility might be. The likelihood of relapse necessitating a second-line therapy and potentially affecting fertility is impossible to predict [4]. These imponderables increase the importance of discussing fertility preservation with every patient irrespective of what their individual risk of infertility is estimated to be. Oncologists’ Knowledge of Fertility Preservation Methods In general, oncologists know more about fertility preservation for males than for females. It is therefore difficult to comprehensively inform patients about cryoconservation of oocytes when two thirds of oncologists know little about it. Patients seem to notice this uncertainty and often want to consult a reproductive expert additionally even if they have completed their family planning [5]. Geue et al. also confirmed that consulting a reproductive expert was more satisfying for patients than discussing it with their oncologists only [7]. Quinn et al. [9] stated that the less knowledge a physician has about reproductive medicine, the higher the barrier is to them discussing this topic. This not only refers to theoretical knowledge but also to practical aspects like being familiar with an appropriate fertility clinic and its contact person [12]. Referral and Desired Support Nearly all oncologists (96.6 %) in our study said they refer patients who want to have a child to reproductive facilities. Because a large percentage of them work at university hospitals (80 %), this often means the university hospital’s own fertility department is the address of choice. The great distances and bureaucratic expenditure that played a large role in Gilbert et al.’s study [11] did not constitute a problem in ours. Almost all German university hospitals take part in Fertiprotekt, a network of university and nonuniversity facilities in Germany, Austria, and Switzerland that aims to provide fertility counselling to every cancer patient of childbearing age. Oncologists said the following things would provide meaningful support for patient-physician communication about this topic: more exchange with physicians working in reproductive medicine, more information about methods used in
reproductive medicine, and information leaflets. This desire for more information and exchange was also reported in other studies [9, 12]. A study by Goodmann et al. [15] showed how important good cooperation with a reproductive facility can be. Patients suffering from breast cancer were referred ten times more often than patients with other malignancies because of better cooperation between gynaecologists and the fertility department. Shimizu et al. showed that reproductive specialists are willing to treat young breast cancer patients. However, because of their lack of specialization in cancer, they did want more information exchange with oncologists [24]. Studies by Adams [16] and Küçük [17] show that, while most oncologists would like to learn more about fertility preservation, only a minority of them value communication training. The patients investigated by Bastings et al. [25] were mostly content with the discussions they had had about fertility preservation with their oncologists, but they also had suggestions for improvements. The main criticisms were that no psychological counselling was offered, and that the discussions were too short and superficial. The shortcomings which made it more difficult for these patients to make decisions about fertility preservation are things that could potentially be improved by communication training. Other studies done mostly among paediatric oncologists report that physicians do, in fact, desire more such training [11, 12]. Perhaps this is because it is explicitly required in paediatric settings that fertility be discussed with both children and parents. Caregivers might consider this to be more difficult and, as such, to necessitate more training. An especially large proportion of medical professions find it helpful to have information leaflets that can be handed out to patients [10, 17]. According to Küçük et al. [17], the likelihood of fertility discussions occurring increases when doctors have information leaflets available on the subject. Patients interviewed by Lee et al. [5] reported that information leaflets can serve as a basis for further discussions but that they also felt burdened by them sometimes. Another factor respondent ranked as helpful was the presence of the patient’s partner during discussions about fertility. This is consistent with former studies which found that women in particular often helped facilitate their partner’s decision to bank sperm [10]. Limitations Because this is a cross-sectional study, it only reflects the selfassessment of the oncologists who took part. More difficult to conduct prospective studies involving audio or video recordings of physician-patient communication may appear be more objective at first glance. The oncologists’ awareness of being recorded could however distort their behaviour. It is of note that most of the respondents we surveyed were quite young. The topic of fertility might feel more personal for young
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physicians because they are in training, and founding a family is a current theme at their stage of life. Furthermore, most of the respondents were working at university hospitals. Standards of counselling may be higher in these facilities. Another limitation of our study is the possibility of selection bias. It is possible that the respondents who were already sensitized to and interested in this topic were more apt to participate in the study. The influence of social desirability must also be mentioned. Every oncologist knows about the principles of informed consent that require a comprehensive discussion of risks and side effects of planned therapies, among them the possible impairment of fertility. This might have led to an overestimation of the real rate of discussing fertility in informed consent discussions. Self-developed questionnaire items impede comparison with other studies but are currently common practice in this field of research.
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Conclusion Guidelines already require physicians to discuss fertility, family planning, and fertility preservation with every cancer patient of reproductive age they treat. The results of our study also illustrate that oncologists working in adult haematooncology are indeed aware of the significance of the subject. Nevertheless, there are patient characteristics that influence the likelihood of these discussions actually taking place. Further studies are necessary to investigate patients’ opinions and desires concerning discussions between them and their oncologists about family planning, and whether the measures we suggest really can improve and support that communication. Acknowledgment We thank all participating oncologists for filling in the questionnaire. This study was supported by the German Josè Carreras Leukaemia Foundation. Conflict of Interest All authors declare no conflict of interest.
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