J Genet Counsel DOI 10.1007/s10897-014-9723-6

PROFESSIONAL ISSUES

Interdisciplinary Education for Genetic Counselors: Developing the Concept and Assessing the Need in Australasia Kirsty J. Mann & Jessica A. Taylor & Paul A. James & Clara Gaff

Received: 18 July 2013 / Accepted: 9 April 2014 # National Society of Genetic Counselors, Inc. 2014

Abstract Interdisciplinary teams are increasingly common in healthcare as a means of improving patient care and there is consensus in the literature that a formalized framework of interdisciplinary education for health professionals is an advantageous means of professional development. To our knowledge no such application to genetic counseling has been reported. Prompted by limited direct exposure to the oncology processes discussed during genetic counseling sessions, two genetic counselors completed an interdisciplinary education exercise by observing various oncology settings. As intended we gained a deeper understanding of the: (1) Roles of other health professionals within the oncology interdisciplinary team, (2) Patient experience of cancer screening and treatment, and (3) Clinical processes relevant to cancer genetic counselors’ discussions. In addition, further benefits resulted from (4) Insight into how patients and referring providers utilize the FCC within wider oncology care and (5) Strengthening of relationships between the FCC and other oncology-related teams. The observation experience and resulting learnings are described in this paper. To investigate wider application of this novel initiative, a survey of Australasian genetic counselors was conducted, finding that

Kirsty J. Mann and Jessica A. Taylor are joint first authors This manuscript has not been published previously and is not currently under consideration for publication elsewhere. Confidentiality has been maintained by the use of pseudonyms in this manuscript. K. J. Mann (*) : J. A. Taylor : P. A. James Genetic Medicine and Familial Cancer Centre, Royal Melbourne Hospital, C/o Post Office, Grattan Street Parkville, Melbourne, VIC 3050, Australia e-mail: [email protected] C. Gaff Department of Medicine and Paediatrics, University of Melbourne, Melbourne, Australia

genetic counselors mostly source knowledge about oncology procedures through indirect means and that, overall, anecdotal descriptions from patients were the most common information source (74 %). Over 95 % of respondents expected that interdisciplinary observations would be a beneficial part of their professional development and almost 90 % expected the program to be potentially feasible in their workplace. These findings indicate there is a role for interdisciplinary education to be considered as a formal continual learning tool for genetic counselors. Keywords Genetic counseling . Interdisciplinary education . Interprofessional education . Cancer genetic counseling . Professional development . Australasia

Introduction Interdisciplinary teams are increasingly common in healthcare as a means of improving patient care (Petri 2010; Pruthi et al. 2007; Thistlethwaite and Moran 2010; Zwarenstein et al. 2009). Similarly, genetics services both in Australasia and internationally are becoming more interdisciplinary in nature as they employ a range of specialists to complement the team (Balkite and Smith 2009; HGSA 2008). With increasing prevalence of collaborative approaches in healthcare, there is a trend towards interdisciplinary education (also called interprofessional education) being recommended for all health care professionals (Dufrene 2012; Hall and Weaver 2001; Petri 2010; Thistlethwaite and Moran 2010). Interdisciplinary education is defined as “occasions when two or more professionals learn with, from, and about each other to improve collaboration and the quality of care”, with the underlying aim being to respect, understand, and support the roles of other professionals (Thistlethwaite and Moran 2010, p. 503). Dufrene (2012) reviewed the literature evaluating different

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methods of interdisciplinary education for health professionals in training and found reports of didactic teaching, simulation/laboratory methods, and teaching in a clinical setting. The overarching outcome reported by researchers in the review was an increased understanding of the roles of others and how to develop effective collaborative processes. In 2008, a special issue of the Journal of Genetic Counseling was dedicated to the subject of genetic counselors educating others about genetics, including clinical staff (Gaff et al. 2008). This special issue highlighted that genetic counselors are committed to education of health professionals although there is potential for more reciprocal learning. Despite consensus in the literature that a formalized framework of interdisciplinary education is an advantageous means of professional development for health professionals (Dufrene 2012; Hall and Weaver 2001; Thistlethwaite and Moran 2010), to our knowledge no application to genetic counselors has been shared in the literature. This suggests a possible deficit in opportunity for genetic counselors to access formal interdisciplinary education. Interdisciplinary education deserves attention since continual learning and professional development are both valued and required throughout a genetic counselor’s career (Gettig and Greendale 2009; Human Genetics Society of Australasia (HGSA) 2010). Practicing genetic counselors in Australasia must be graduates of an accredited graduate program, which includes both formal teaching and experiential learning of the core genetic counseling skills through clinical placement (Sahhar et al. 2013). Accreditation standards broadly state that students should learn to function as a part of a multidisciplinary health care team during clinical placement (HGSA 2011). While the American genetic counseling graduate program requirements are slightly more specific by encouraging “clinical experiences with non-genetics providers” to augment clinical training (Accreditation Council of Genetic Counseling 2013, p. 24), neither standards specifically dictate that interdisciplinary education should be incorporated into a genetic counselor’s training. Following employment as a genetic counselor in Australasia, full certification is awarded by HGSA upon a set of requirements being met (McEwen et al. 2013). Continuing education reports are to be submitted to HGSA annually by both certified genetic counselors and those working towards certification. Any learning experience that contributes to professional development may be included, a proportion of which is expected to be attendance of formal courses, meetings, or conferences. Reports should include some continuing education external to the genetic counselors’ place of employment and be accompanied by a description of the impact on clinical practice. Following certification, there is a process for Maintenance of Professional Standards (MOPS) to be completed every 5 years (HGSA 2010). The workplace of genetic counselors in Australasia are genetics services predominantly located in publicly-funded

tertiary hospitals in the capital cities, with outreach services provided to smaller cities and towns by the main center in each metropolitan area. Cancer genetic counselors may work in specialist Familial Cancer Centers (FCC) as part of a team of Clinical Geneticists, Medical Oncologists, Nurses, Gastroenterologists, Breast Surgeons, and Gynecologists. While cancer genetics services are not uniform across Australasia, co-counseling is generally provided by genetic counselors during consultations. FCC staff interact with the wider oncology team by participating in oncology interdisciplinary meetings to discuss treatment plans for individual patients. Oncology care in Australasia is offered in both the public and private setting; referrals to FCC services are received from both sectors. Teaching hospitals in Australia typically have a comprehensive oncology service on site, however, some subspecialties such as radiation therapy may be outsourced. Non-teaching hospitals vary in the oncology services available on site. Genetics services are often distinct clinical departments. Consequently in their training and workplace genetic counselors seldom have direct exposure to the medical environments in which their interdisciplinary colleagues provide clinical care (with the exception of prenatal genetic counselors, many of whom would have witnessed an amniocentesis or chorionic villus sampling procedure). This differs from other health care professionals such as nurses who are usually expected to work in a vast range of medical environments during their training. It also seems discordant with the expectation that a genetic counselor’s specialist knowledge increases and the fact that they increasingly work alongside other health professionals within interdisciplinary settings like oncology or cardiology (Balkite and Smith 2009). However, the specific skills genetic counselors may require in specialized practice or the effectiveness of current genetic counseling training in meeting these needs do not appear to have been defined. During specialized cancer genetic counseling sessions, patients often describe their experience in the oncology system. Frequently, procedures such as colonoscopy, risk-reducing prophylactic surgery, and breast Magnetic Resonance Imaging (MRI) are the subject of discussion during a genetic counseling session at a FCC, because these management strategies are commonly part of recommendations following individual risk assessment. The recommendation is often accompanied by a referral to relevant specialists to oversee these procedures. We (the first authors) became conscious we had a limited understanding of the wider medical system in which we work, and a desire to experience firsthand the real life nature of medical environments outside our department instead of an intangible and ambiguous conceptualization. We sought to overcome some of the obscurity of these medical practices that we so often referred to and had not ever seen firsthand. To do this, we put in place a series of observations in

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various oncology settings. Through these observations we aimed to gain a deeper understanding of the: 1. Roles of other health professionals within the oncology interdisciplinary team. 2. Patient experience in the context of cancer screening and treatment. 3. Clinical processes relevant to cancer genetic counselors’ discussions We selected observation as a way of learning because the experiential learning model used in medical training advocates that learning should occur in a real life context rather than through theory (Yardley et al. 2012), and exercises that aid to clarify differing roles in an interdisciplinary team are encouraged (Mariano 1989; Orchard et al. 2005). Our selected approach also resembles an example of teaching in a clinical setting from Kipp et al. (2007) cited by Dufrene’s (2012) review of interdisciplinary education. This described a group of students from different faculties (nursing, medicine, pharmacy, and nutrition) who were placed together in a clinical environment to help increase their knowledge of diabetes management. It was found that 75 % of the students had an increased understanding of the roles of other professionals in diabetic care through this exercise. In order to understand whether this need is shared by other genetic counselors and to investigate if others would benefit from the wider application of this novel initiative, we surveyed Australasian genetic counselors . Specifically, we aimed to (1) understand how genetic counselors most commonly source knowledge about clinical aspects of patient care and roles of other interdisciplinary team members, including direct exposure to the clinical environments in which they take place, and (2) explore views on the perceived benefits of an interdisciplinary education program and feasibility of such a program in the workplace. In this paper we describe the process and learning points from our observations in oncology followed by a summary of the results of the survey. Interdisciplinary Education by Way of Observation: Concept Evolution We originally conceived the idea of observing oncology care as a professional development exercise in early 2011. Our FCC operates within The Royal Melbourne Hospital, a state funded tertiary public hospital, which is a major teaching hospital of the University of Melbourne. Specialists such as breast surgeons, medical oncologists, and gastroenterologists are frequently present for part of each consultation as needed. We considered the oncology-related surveillance and procedures most frequently discussed in our FCC setting, namely c o l o n o s c o p y, g a s t r o s c o p y, a n d c h e m o t h e r a p y. Mammography, breast MRI, prophylactic surgery, radiation

therapy, radiology consultation, psycho-oncology consultation, and clinical trials were also listed as relatively regular topics of discussion and were reserved for possible future observations (less easily accessible). We then identified senior clinicians involved with the key areas of interest and affiliated with our general tertiary adult hospital and the adjacent women’s hospital. We wrote to clinicians formally requesting permission to observe their practice in their respective areas. Upon receiving their responses, we devised a schedule of observations which took place on average fortnightly over a 4 month period in 2011 (see Table 1). Following each observation, learning points were recorded by the observer. These points specifically focused on the content of the appointment, documented new knowledge that would not typically have been encountered in our usual roles, described how the information appeared to impact patients, and listed areas of learning that would influence our clinical practice. When the same clinician was observed by both counselors at separate times, comparisons were made about each experience. Observations were not intended to be the subject of research but rather for our own education. We present the learning points in the next section. Learning Points from the Observation Exercise All clinicians approached gave us permission to observe in their respective specialty practice. We observed a total of nine clinicians, and observations of each individual ranged from one to seven consultations. The program also encompassed observation of colonoscopy, gastroscopy, chemotherapy and wound care procedures (see Table 1). Learning points from the observation exercise fulfilled the intended aims and in addition, the observations yielded information on: 4. Insight into the how referrers and patients utilize the FCC and integrate the service into wider oncology care

Table 1 Description and number of observations of medical consultations and procedures Specialist observed

Number of Number of Number and type clinicians consultations of procedures observed

Medical Oncologist

2

15

Breast Surgeon

4

5

Gynecological Oncologist 1 Gastroenterologist 1

2 1

Breast Care Nurse Total

4 25

1 9

1 chemotherapy session 1 wound care procedure 10 colonoscopies 3 gastroscopies 15

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5. Strengthening of relationships between the FCC and other oncology-related teams The following observations illustrate our experience for each of the five learning points. 1. The roles of other health professionals within the oncology interdisciplinary team It was evident that the framing of questions asked by each clinician were influenced by their specialist role. Knowing that medical oncologists, for example, place an emphasis on treatment discussions, physical examination, and changes in health status, it was intriguing to hear how consideration of co-morbidities such as heart problems, diabetes, weight, past surgeries, medications, and other health risks can factor into decisions about appropriate treatments such as chemotherapy. On some occasions we had the opportunity to debrief with clinicians following the clinic; learning that specific questions asked by the clinician had deeper intention than might have been realized to the untrained individual. After we observed a review appointment, for example, the oncologist explained her line of questioning as a means of assessing for signs of metastases. The questions differed depending on which part of the body (lungs, brain, liver, or bone) was being assessed. This has influenced how we react to reports of health in genetic consultations. For instance, when a cancer patient reported feeling unusually short of breath when walking (raising the question of lung metastasis), the genetic counselor raised this with the consulting clinician so he could judge whether further assessment was required. This depicts the complementary roles within an interdisciplinary team. If it had not been for the experience of observing the oncologist querying the presence of the same symptom in his usual role (in the oncology clinic), the genetic counselor may not have realized the need for investigation. 2. The patient experience in the context of cancer screening and treatment Improved understanding of the patient perspective was evident in three main ways. First, by watching pertinent medical information being communicated to a patient for the first time, we gained a better appreciation of the immediate responses to this information by the individual. For example, “Mark” with Familial Adenomatous Polyposis (FAP),appeared unconcerned when receiving a diagnosis of bowel cancer. Similarly, patients’ reactions to hearing the likelihood of surviving their cancer were varied, and at times surprising to us. Second, we gained an increased appreciation of the various decisions a patient is required to make throughout their cancer journey and the level of autonomy they have in making those

decisions. Examples included conversations about types of breast surgery (conservative or radical surgery), weighing up whether to undergo chemotherapy and/or radiation therapy, and the different factors that can influence these decisions. One woman, “Cheryl,” expressed strong dissatisfaction with the side effects of her treatment. Her oncologist acknowledged her concerns and explained the proven benefits of the treatment before negotiating a different dosage. Third, we further realized the time commitment away from daily life that a cancer diagnosis requires and the length of waiting times for consultations in a busy publicly-funded outpatient clinic for a relatively short appointment. 3. Clinical processes relevant to cancer genetic counselors’ discussions The greatest amount of time was spent observing gastrointestinal investigations. Upon observation of endoscopic screening of individuals at a genetically increased risk of developing gastrointestinal cancers, we were both initially surprised at the high number of health professionals required for endoscopy and the extensive equipment used. The gastroenterologist highlighted to us anatomy visible during colonoscopy and outlined the preparation and potential risks associated with endoscopy. We witnessed polyp specimen collection during the endoscopy and how these correspond to both the endoscopic and histopathology reports. During one of the observations, a suspected cancerous lesion was identified in “Mark” with FAP, which allowed us to visualize the subtle macroscopic differences between a possible cancer and a polyp. Our clinical knowledge also increased in the breast and gynecology specialties. To illustrate, “Michelle,” a patient with breast cancer, was concerned about the possibility of not being able to feel a local recurrence after bilateral mastectomy and reconstruction with implants. The consulting clinician clarified that implants are placed behind the muscle so that any remaining breast tissue cells are directly under the skin surface making examination straightforward, providing Michelle with much reassurance. Our understanding of prophylactic bilateral salpingo-oophorectomy was also consolidated when hearing the gynecological oncologist’s explanation to his patient about the anatomy and function of the peritoneum and the reason it is not removed with the ovaries and Fallopian tubes. In addition, we heard his description of risks to be considered prior to prophylactic surgery, including risks of hemorrhage, piercing major arteries or adjacent organs, finding an occult cancer and possibility of reverting to an open surgery in laparoscopic procedures, and noted the sensitive yet frank language he used with his patient. As a result of the exposure we had to the medical oncology unit, the pharmaceutical names and characteristics of different chemotherapy treatments have become more

Interdisciplinary Education for Genetic Counselors

familiar. This has led to improved understanding when reading correspondence from medical oncologists regarding FCC patients, and during discussions with patients or clinicians about treatment. 4. Insight into how patients and referring providers utilize the FCC within wider oncology care It was useful to witness how referrals to the FCC were introduced to a patient, the time points that referral was considered and the level of information provided about our service before their contact with our service. It was particularly helpful to understand the way discussion of treatmentfocused genetic testing is woven into discussing the overall treatment plan. In the context of all the topics covered over an entire appointment, family history was a minor aspect to cover, but was nevertheless considered important. In one instance our presence prompted a request for advice regarding the appropriateness of FCC referral, and clarification resulted in the referral being made; three other patients were referred during our time observing. Furthermore, on five occasions during observation the specialist inquired if patients had acted upon prior referral to the FCC and revisited this if necessary. The observations prompted us to consider ways that genetic counselors could integrate more smoothly and supportively during a patient’s cancer journey. One resulting initiative was to tailor our referral process to the specific needs of the breast and gynecology services by creating a specialized referral template and enabling patients with ovarian cancer to be triaged more appropriately. This has in turn made the information given in referrals more meaningful and triage more time efficient. 5. Strengthening of relationships between the FCC and other oncology-related teams The interactions resulting from the observation exercise have served an additional purpose of re-establishing and improving communication and rapport between FCC staff and other oncology departments. Our interest in understanding the roles of other medical specialists was reciprocated by the specialists we observed. For instance, we were invited by the Breast Care Nurses to re-educate breast cancer specialists about the requirements for urgent FCC referrals at the breast cancer interdisciplinary team meeting. Tailoring our referral process also acted as a means of strengthening our relationships with specialist staff. By proactively opening the lines of communication and encouraging transparency, specialists have been more comfortable to voice their own needs to the FCC. This has led to engaging medical specialists to hear their views about ways to improve communication of urgent genetic test results.

Survey Study Population We were interested to obtain the views of genetic counselors who currently work or have previously worked in the area of cancer genetics. All individuals registered with the Australasian Society of Genetic Counsellors (ASGC) membership (n=282, excluding the authors) were sent an email invitation to complete the survey. A reminder email was sent approximately 1 week prior to closing of the survey. All responses were anonymous. ASGC census data at the time of recruitment indicated that at least 39 % (n=110) of individuals registered with the ASGC would spend some time in a given month practicing cancer genetic counseling. Data Collection A survey tool was administered online (http://www. surveymonkey.com) to maximize the response rate, and distributed to ASGC members in October 2012 following Human Research Ethics Committee approval granted through The Royal Melbourne Hospital (Project number QA2012116). The survey consisted of 21 multiple choice questions (see Appendix 1) designed to address the research questions quantitatively; three free text fields provided opportunities for comments. An interdisciplinary team was defined in the survey as a team whose members work together closely and communicate frequently to optimise patient care. The domains of information elicited include collected demographics (Questions 1–2) and genetic counselors’ current frequency of interaction with interdisciplinary team members (Question 3), mechanisms by which genetic counsellors learn about oncology-related clinical processes including: colonoscopy, breast MRI, chemotherapy, and cancer risk-reducing surgery (Questions 5–8). Likert scales queried participants’ understanding of specific aspects of each of the same four procedures (Questions 9–12). This provided a way of testing the relationship between knowledge sources and reports of perceived understanding of each procedure. Similarly, Questions 13 and 14 asked about the participants’ general understanding of the impact of these procedures on a patient and about the roles of five oncology health professionals. Questions 16–20 gauged the participants’ views about the perceived benefit, interest, ideal timing, and workplace feasibility of an interdisciplinary education by way of observing consultations and procedures. Survey Data Analysis Data were anonymous, however individual responses could be linked which aided in extracting relationships between

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answers provided throughout the survey. Trends were analyzed both overall and following stratification of respondents according to years of experience. Quantitative data analysis was performed for Questions 5–13, with continuous variables compared by Student’s t-test and proportions by chi-square (Χ2) testing with SSPS (Version 20) and Microsoft Excel. Sources of knowledge from Questions 5–8 were categorized into one of three groups for analysis. Direct knowledge was defined as that obtained as a result of an individual’s firsthand experience, and was divided into two further categories: embodied knowledge and observed knowledge. Embodied knowledge was considered to mean an individual’s lived experience of personally undergoing a procedure. Observed knowledge is that obtained from having observed the procedure firsthand. The third group was indirect knowledge gained from secondhand sources and included: formal teaching during genetic counseling training, informal teaching from FCC clinical staff, anecdotal descriptions from patients, literature such as fact sheets, and other media such as the internet and television. For questions that used a Likert scale (9–14), responses were grouped as either limited understanding (=1–3) or detailed understanding (=4 or 5) for analysis. Data collected for the six aspects of medical procedures listed in Questions 9–12 were combined to give a global score to represent level of understanding. Content analysis as described by Liamputtong (2009) was used to assign qualitative comments from Question 17 into predetermined categories, and to identify whether any new benefits emerged. The predetermined categories were the potential benefits listed in Question 16. Comments from Question 20 were similarly analysed according to predetermined categories regarding feasibility from Question 19. The final free text question (Question 21) was designed to provide an opportunity for general comments. Qualitative data in the form of verbatim quotes relating to each category are presented.

attendance at interdisciplinary team meetings can be found in Table 2. Notably, 60 % of respondents attend interdisciplinary team meetings at least once per month. Sources and Types of Knowledge of Oncology Procedures Figure 1 and Table 3 summarize how genetic counselors obtained their knowledge of colonoscopy, breast magnetic resonance imaging (MRI), chemotherapy and cancer riskreducing surgery. Participants could select more than one knowledge source (therefore the sum of knowledge sources does not total 100 %). Anecdotal descriptions from patients was reported as the most common source of indirect knowledge across all four procedures (average of 74 %), and teaching during genetic counseling training was the least commonly reported source (average 38 %). When comparing direct observation of the four interventions, respondents were most likely to have seen chemotherapy (35 %) and least likely to have seen a breast MRI (5 %). Only two respondents had observed three or more procedures. Of note, 25 % of participants had personally undergone a colonoscopy, compared to 20 % who had observed the procedure. Self-reported Understanding of Oncology Procedures The average proportion of counselors reporting direct knowledge of the interventions increased progressively from 5 % at less than 1 year of experience to 39 % for counselors more than 5 years from qualification [p v