Factors In uencing Communication Quality for Successful Fertility Preservation Counselling for Adolescent and Young Adult Cancer Patients and Their Care Givers in Korea

Yoo Sub Shin Yonsei University College of Medicine Mi Na Park Yonsei Cancer Center Seung Min Hahn Yonsei University College of Medicine Seung Yeon Kwon Yonsei University College of Medicine Won Kee Ahn Yonsei University College of Medicine Chuhl Joo Lyu Yonsei University College of Medicine Jung Woo Han (  jwhan@yuhs.ac ) Yonsei University College of Medicine https://orcid.org/0000-0001-8936-1205


Introduction
The preservation of fertility is an issue of high priority among adolescent and young adult patients with cancer or cancer survivors for their future quality of life [1]. Health care providers should discuss fertility preservation (FP) with patients and refer them to reproductive specialists [2]. Various strategies such as sperm cryopreservation or hormonal gonadal protection for men and embryo or oocyte cryopreservation for women are commonly employed. Details on the role and limitations of these preservation options should be discussed during FP discussion sessions [2].
institutional review board at Severance Hospital, YUHS (IRB no. 4-2019-0868). All participants provided informed consents of this study.

Measures
The survey was categorized into three sections: background information and demographics, characteristics of FP discussion, and quality of FP discussions and communications. Subsequently, we assessed whether demographics or characteristics of the discussion affected respondents' evaluation of FP discussion sessions. The questions were constructed based on guidelines and previous reports on facilitation of appropriate communication and improved quality of FP discussions [2,5,13].

Background information
The questions identi ed potential demographic factors that may in uence respondents' experience of FP discussions. Questions pertained to the guardian's relationship with the patient, previous knowledge of FP, and the main decision maker regarding FP.

Characteristics of FP discussion sessions
The survey evaluated the structure of the discussion. Characteristics assessed were the total number of discussions held, duration of each discussion, the identity of the information provider, the provider's gender, and the timing of the discussion.
Satisfaction scores and quality of FP discussion sessions The overall satisfaction and subcategories of satisfaction were measured on a scale of 1-7, where 7 indicates the highest satisfaction. The subcategory includes satisfaction associated with the quality of information, the quality of communication, and the patient or caregiver expectation on the future quality of life through the FP process.

Statistical analysis
A survey of 34 pairs of patients and their guardians was completed and the results analyzed. Descriptive analysis evaluated the demographics of the patients and their guardians. Data are presented as the median with interquartile range (IQR), percentage or mean ± standard deviation. Wilcoxon rank sum test was used for non-parametric variables (characteristics of FP discussion and demographics) to evaluate for differences in participants' evaluation of FP discussions. All statistical analysis was performed using R Statistical Software version 3.6.3 (Foundation for Statistical Computing, Vienna, Austria).

Demographics
A total of 34 pairs of patients and their guardians were contacted during in-hospital or out-patient clinic visits. Of them, 34 patients and 32 corresponding guardians completed the survey (two guardians did not Out of 34 participant patients, 32 responded that they had attended at least one discussion session prior to FP (Table 2). Only one discussion session was conducted for 17 patients (53%), and more than one session was conducted for the others. The options of FP were discussed before the start of cancer treatment for 29 (86%) patients; however ve patients attended discussions after the start of cancer chemotherapy. Each discussion session was held for less than 10 minutes for 28 patients (87%). Only one patient (3%) attended a session that lasted between 20-30 minutes. There was no session with a duration of 30 minutes or longer.  (3) Others 0 (0) Acronyms and abbreviations: FP, fertility preservation The main counselors at the discussion were either gynecologists (N = 19), others (N = 9), pediatric hematology-oncology specialists (N = 3), and residents in pediatrics (N = 2), or a nurse (N = 1). Patients who responded with "others" to this question, mostly referred to their own guardians as their main counselor. Nineteen (59%) counselors were of the same gender as the patients.
Twenty-one (64%) patients reported that the discussion was held at their bedside in a multi-beds hospital room, while only nine (27%) patients attended the discussion in a private setting (private room, infertility clinic, outpatient ward). A private setting indicates a place where there is no possibility of the discussion being overheard by others not involved in the oncofertility process.
Most discussions (N = 25, 76%) took place solely through verbal communication, without the use of memos, notes, information sheets, pamphlets, or internet resources.
Overall, less than half of the patients (N = 14, 47%) reported that they understood the concept of FP su ciently to make proper decisions to proceed or not, after the rst discussion session. Six (19%) patients reported they did not understand FP at all, even after the completion of all FP discussion sessions.

Fertility Preservation Discussion Characteristics: Responses from Guardians
All 32 guardians reported that they attended FP discussions before deciding on FP. Twenty-seven guardians (87%) reported the patients went through the discussion before cancer treatment. Seventeen guardians (53%) reported the session was held only once.
Of the 32 guardians, 26 (81%) reported that discussions were held for less than 10 minutes. Only one guardian (3%) attended a discussion session lasting over 30 minutes.
Fourteen (44%) guardians discussed FP at the patient's bedside, and fourteen (44%) guardians discussed the issue in a private setting. Four guardians (13%) attended the discussion at a hospital hallway. Most discussions were delivered solely through verbal communication (88%).

Satisfaction of Fertility Preservation Discussion
All 10 questions averaged a score higher than 4, which means higher than average, indicating that patients and guardians were generally satis ed with the counseling process (Table 3). Patients were mostly satis ed with the discussion sessions. They reported highest satisfaction with the protection of the patients' privacy (Question 9, 5.84 ± 1.16) and a respectful attitude during the discussion process (Question 10, 6.03 ±1.08). Low levels of satisfaction were found with additional available information provided (Question 5, 5.13 ± 1.75). They did not report other suitable referrals to professionals regarding FP issues rather than FP discussion (Question 7, 4.19 ± 1.74).
The overall satisfaction rate was higher among patients who were counseled by doctors (gynecologists, pediatric hema-oncologists, residents) than respondents who were counseled by nurses or other counselors ( Fig. 1-A, p = 0.015).

Guardians' Responses
Responses from guardians showed trends similar to patients' responses. Guardians were mostly satis ed with how the consult took place, represented in privacy and respectfulness; questions 9 and 10 (5.69 ±1.23; 5.72 ±1.37, respectively). The lowest scoring responses were identical with that of the patient's, represented in quantity of information and suitable referrals (Question 5, 4.69 ±1.91). They did not report the need for other referrals despite of FP discussion (Question 7, 4.62 ±1.93).
Guardians who were counseled by doctors showed higher overall satisfaction compared with guardians counseled by nurses or other counselors ( Fig. 1-B, p = 0.01).

Factors affecting respondent satisfaction
Communication Quality: Impact by the type of information providers Patients counseled by doctors rather than other types of health care providers reported greater satisfaction with the quality of information delivered ( Fig. 1-C, p = 0.001) and the quality of communication ( Fig. 1-D, p = 0.001). However, guardians did not report any statistically signi cant difference based on the type of provider.

Communication quality: Additional communication tools
Guardians who were provided with additional communication tools (pamphlets, notes, internet sources, and others) about FP, were more satis ed with the quality of information they received than the respondents who were provided with only verbal information sources (Fig. 2-A, p = 0.04). However, the responses from patients did not show any statistically signi cant differences on the information quality based on the type of information provided (Fig. 2-B, p = N.S.).

Communication Quality: Number of Consult Sessions
Compared with others, patients (15/32, 46.8%) who attended two or more consults reported that the consults were easier to understand ( Fig. 2-A, p = 0.017). Guardians (15/32, 47%) who attended two or more discussions also reported that information quality ( Fig. 2

Discussion
This study evaluated the quality of FP discussions based on their speci c detailed features and satisfaction rates measured by the respondents-AYA patients and their guardians in Korea. We discovered that both patients and guardians were generally satis ed with the FP discussion, although several improvements can be made to better the quality of FP discussions.
The FP discussions in this study were commonly held in hospital hallways or at the patient's bedside in the presence of other patients. This meant that unrelated people could potentially overhear the details of their discussion. AYA patients have unique medical and psychosocial concerns, and they have to be provided with age-appropriate information, education and discussion [13,14]. Therefore, an environment wherein their privacy is not protected should be avoided. Nevertheless, and strikingly, patients and guardians reported high levels of satisfaction with the respect they received and the protection of their privacy during the discussion (represented in questions 9 and 10). Moreover, respondents did not report different satisfaction rates between private rooms and relatively public spaces. This perception of privacy in the hospital environment is considered partly as the result of cultural difference [15]. Generally, most patients attending FP discussion, report that the communication is emotionally supportive for them. However, some patients experience negative feelings such as humiliation, psychological stress, or emotional challenges during FP discussion [12]. A substantial proportion of the patients prefer the conversation to be held in a private environment without the presence of their parents [16]. Although satisfaction was not different whether the privacy was protected or not in this study, medical privacy should be protected in general [17,18]. Therefore, the setting for discussion should be improved for better quality of FP discussions.
In this study, respondents were more satis ed when FP discussions were provided by a doctor than provided by other types of counselors. This might be because pediatric or medical oncologists, and/or the gynecologists met patients in fertility preservation clinics. Thus, they delivered up-to-date knowledge and a rich experience on the strengths and weaknesses of FP during the counseling sessions. This may explain why patients who were counseled by physicians reported they received greater quality of information and good communication quality during the FP discussion in our study. The reason the patients and guardians favored the physicians rather than other type of providers might be the consideration of authority or power in the medical practice environment. There are differences in the success and effectiveness of FP discussions based on the identity of the counselor. The helpfulness of discussion is generally rated high with professionals including oncologists and gynecologists rather than with general practitioners or counselors [19]. Although FP success rates were irrelevant to the identity of the counselor, the completeness of the information content affected the success rate of FP [13].
Respondents who were counseled more than once expressed greater quality of FP discussion in this study. A single session of discussion may not only provide insu cient details on fertility preservation but also risk bombarding the patients with too much information at once. Considering the brief window of time available for patients between the diagnosis of cancer and chemotherapeutic treatment, an establishment of an e cient referral protocol that patients can follow may overcome this problem. The important thing is not only the number of discussions, but the quality of information and education delivered to the patients and families. To facilitate effective and high-quality communication, it is important to use various types of education materials. A study by Bradford et al. showed that a bundled intervention including a set protocol for referrals improved the documented outcomes for FP [20].
Developed set protocols are being increasingly introduced, such as the Pathways protocol set for female cancer patients by Woodard [22,23]. Likewise, our study showed that respondents who were offered additional educational tools such as notes, pictures, pamphlets, or internet sources reported greater quality of information.
To enhance the FP discussion, a multidisciplinary team should be organized [24]. Physicians and trainees on FP should also be provided with learning sessions. The referral pathway also has to be modi ed and improved according to the results and feedback obtained from this survey. In this study, in most cases, the number of discussions was less than two and the duration of each discussion was less than 10 minutes. The types of main counselors were diverse across study participants. A substantial proportion of patients and guardians had not heard of FP options previously. Collectively, these ndings meant that most of the patients and guardians were new to the concept of FP when the cancer was diagnosed, and the FP discussions for each patient and family were not provided in a multidisciplinary manner; rather, there was one-way transmission of information from the counseling personnel to the patient or guardian.
Importantly, these circumstances might not be able to provide discussions regarding fertility issues speci c to psychosocial support. Many medical institutions and professionals experience barriers during FP discussions in real world situations due to the lack of up-to-date knowledge on FP by clinicians, the limited time available for FP discussion before the start of the cancer treatment, and the limited FP options for female cancer patients [7]. The patients also need emotional support during the decisionmaking process regarding this sensitive topic [5]. For the FP discussion to be more effective, all the above issues should be acknowledged and improved.
This study has limitations, one of which is that the validity of our data is limited by the small sample size.

Consent for publication
Informed consent for publication submission was obtained from all individual participants included in the study.

Con ict of interest/Competing interest
None of the authors have any con icts of interest or competing interest to declare.  Factors in uenced by additional discussion sessions. A. Patients responded that they were able to better understand the concept of FP when additional discussion sessions were held (p = 0.017). Moreover, guardians experienced greater communication quality (Fig 3-B, p = 0.024) and information quality (Fig 3-C, p = 0.044) with additional discussion sessions