Abstract
Background:
Thyroid cancer is the most common endocrine neoplasm in China. Questions regarding the extent of patient involvement in shared decision-making (SDM) processes persist; this is particularly pertinent to patients considering treatment options for low-risk papillary thyroid cancer (PTC). In this study, we aimed to explore Chinese young adults’ experiences of SDM relating to the choice of treatment for low-risk PTC.
Methods:
The study used a qualitative descriptive design and semistructured interviews. Interviews were conducted with 24 patients (ages ranging from 18 to 38 years; 4 men and 20 women) diagnosed with low-risk (PTC) between March 2023 and May 2024. Twenty-two of 24 patients’ tumor size measured 1 cm or smaller; the largest tumor size measured 1.47 cm. Reflexive thematic analysis was used to identify key themes from the transcribed interviews.
Results:
The analysis revealed that the SDM experiences of young patients with low-risk PTC involve four themes: challenges in information sharing; reasons for information seeking; factors influencing decision making; and self-positioning in treatment decision making. Three self-positions relating to treatment decision making were identified. These included dependent positioning, which reflects a “paternalistic” decision-making pattern; collaborative positioning, reflecting a “sharing” of decision making; and autonomous positioning, reflecting an increased sense of personal responsibility for both managing their health and engagement in decision making. Limited treatment options being offered, overuse of medical terminology, and communication gaps between clinicians and patients were the main challenges described during the information-sharing process. Information that needs persisting after physician-patient consultations resulted in active information-seeking behavior. The key variables identified in this study that potentially affected the decision-making process were future personal considerations, language used to discuss cancer, and negative emotions.
Conclusions:
These results highlight the necessity of adopting flexible strategies when supporting collaborative treatment decision making in the context of the doctor-patient interaction for low-risk PTC. Based on these findings, clinicians can take measures to enhance the quality of SDM by inquiring about patients’ role preferences, providing details of the full range of treatment options, and encouraging patients to share their preferences and concerns relating to possible treatment options.
Introduction
Global thyroid cancer rates soared in 2022, with China reporting half of all new cases. 1,2 At the time of diagnosis, a “one size fits all” approach to surgical intervention often leads to overtreatment, significantly impacting patients’ quality of life and increasing disease burden for patients, especially those with low-risk papillary thyroid cancer (PTC). 3,4 In a U.S. study of 1028 survivors, which compared older thyroid cancer survivors (adults ≥40 years) and young adults (17–39 years), young adults had a different symptom and complaints profile, with more complaints that related to general psychological issues, headaches, chilliness, and their scars. 5 Guidelines now advocate tailored approaches, including active surveillance, hemithyroidectomy, and total thyroidectomy, reflecting individual risk factors, values, and available options. 6 Therefore, for patients with low-risk PTC, treatment decisions should be individualized.
Shared decision making (SDM) plays a critical role for patients with low-risk PTC in this context. SDM is well acknowledged as a critical component for optimal patient-centered care, 7,8 occurring when patients partner with their physician and are fully informed of possible treatment options, with their personal preferences and values fully integrated into the decision-making process. 9 –11 In a systematic review and meta-ethnography (2023) 12 and a scoping review (2022), 13 challenges and factors of SDM within low-risk thyroid cancer were identified. Notably, none of the included articles were from China, highlighting a gap in the literature.
Bomhof-Roordink et al. 14,15 highlighted that SDM is a dynamic process with active roles for both the oncologist and patient. Stiggelbout et al. described steps that include informing the patient that their opinion is important; providing the patient with the opportunity to articulate their preferences and respecting the patient’s wish to make a decision; and discussing patient’s decisional role preference. However, in a real-world clinical practice, authors noted that all these steps happen to a limited extent. 16 Previous studies show that most patients with cancer desire an active or shared role in decision making. 17 –20 Doubleday et al. in a U.S.-based qualitative study, including both patients and surgeons, found that patients with low-risk PTC preferred to make a treatment decision after considering the surgeon’s recommendations. 21 Therefore, we were interested in understanding how Chinese young adults with low-risk PTC position their role within SDM.
This qualitative study aims to obtain a deeper understanding of the experiences of shared treatment decision making from the perspective of Chinese young adults with low-risk PTC and to explore their self-positioning roles within this process. The goal is to provide insights that can enhance the quality of SDM and ensure that treatment decisions align with patients’ values and preferences in the Chinese context.
Methods
Participants and setting
Purposive sampling was used to recruit young patients with low-risk PTC from the outpatient departments of thyroid surgery wards of two tertiary hospitals. The inclusion criteria for participants were (1) 15–39 years of age, (2) diagnosed with PTC according to the criteria of the American Thyroid Association and less than 1.5 cm in size, 22,23 and (3) having more than one treatment option. Participants with metastatic disease were excluded. Data saturation 24 informed the sample size; data saturation is the number of interviews conducted where any further data collection was deemed not to produce further insights and was found to be reached after 21 participants. Three additional patients were interviewed to ensure data saturation was achieved.
Study information leaflets with opportunities to ask questions were provided by the researchers. Patients interested in participating then left their personal information with the researchers. Onsite clinicians reviewed the patients’ medical records to confirm eligibility to participate and informed the research team. Subsequently, written consent was obtained from all eligible and interested participants who were 18 years of age and older. The interviews were organized for another day suited to the participant. Ethics approval for this research and the methodology described in this article was received from the School of Nursing of Yangzhou University (YZUHL20230099).
Interview design and data collection
The semistructured interviews were completed between March 2023 and May 2024. Twenty-four participants were recruited from the hospital setting. Six interviews were conducted face-to-face, and 18 interviews were conducted through WeChat. WeChat is one of the most popular social media platforms in China. 25 The authors then ensured participants’ safety and privacy when using WeChat by verifying their identity, reaffirming consent, facilitating debriefing at the end of the mobile call, and withdrawal of researchers from participants’ WeChat contact list, following the recommendations of Zhang and Quan-Haase (2022). 26 One-to-one in-person interviews were conducted in a private area of the lounge of the hospital ward. Two women, experienced qualitative researchers (M.D.), and registered nurses (XG and HZ) conducted the interviews. Interview questions were informed by the literature and related to SDM, 27 the process of communicating with clinicians about treatment opinions, 28 perceptions about being informed about diagnosis and treatment options, 29 concerns about the information shared in the context of decision making, and the participant’s role in SDM. 30 Before the formal interview, we pre-interviewed 10 patients and revised the interview questions (Supplementary Data S2). Data from these 10 patients were not included in the analysis. With participant permission, all interviews were conducted in Mandarin and audio recorded. Each interview lasted between 28 and 70 minutes. XG and HZ transcribed the interviews within 24 hours, and WW checked the transcript quality.
Data analysis
Braun and Clarke’s 31 –33 approach to inductive reflexive thematic analysis was used to identify the themes within transcripts; this analysis was conducted by two authors (X.G. and H.Z.). Two researchers conducted data analysis independently, and when disagreements arose, a third person participated in discussions to reach consensus. The steps of the data analysis process are outlined within Supplementary Data S3. Data analysis was facilitated using NVivo Version 12 software by QSR International. An example of the analytic process is provided as Supplementary Data S4. All interviews, original transcriptions, and data analysis were conducted in Mandarin. To ensure linguistic fidelity and enhance the trustworthiness of this study, key themes, subthemes, and exemplar quotations were translated into English independently by X.G. (a fluent English and Chinese speaker) and independently back-translated by P.Z. (a qualitative expert with a PhD completed in Nursing in the United States), confirming the retention of meaning. In addition, other research members checked the translated content, further bolstering the rigor and trustworthiness of our findings. Trustworthiness was also enhanced through detailed and exhaustive descriptions, peer oversight, and debriefing around the application of methods used and data analysis, as well as the provision of an audit trail. 34,35
Results
Interviews were conducted with 24 participants (ages ranged from 18 to 38 years). Thirty patients initially expressed interest in participating in the study; however, 4 men and 20 women patients ultimately completed the study (80%). Two patients dropped out before the interview due to other commitments; no cause was given for the nonparticipation of the remaining four patients. The demographics of included participants are shown in Table 1. The analysis of thyroid cancer patients’ narratives led to the following four themes (Table 2).
Participant Characteristics
Endoscopic partial thyroidectomy is a minimally invasive video-assisted thyroidectomy.
Popular social media platforms for online interview.
Themes and Supporting Quotes
Challenges in information sharing
Limited options discussed and information provided by clinician(s) leading toward one treatment
Some patients mentioned that clinicians shared guiding information without fully disclosing the available alternatives. When discussing treatment decisions with patients, doctors tend to steer patients toward surgery because its risk of recurrence is always lower compared to other treatment options. However, some patients believe that clinicians need to balance the organization, clinical expertise, and responsibilities, as well as the patient’s perspective when providing guidance.
Medical terminology being difficult to interpret and anxiety provoking
Most patients expressed confusion and anxiety when clinicians used too much medical terminology. “The clinician shared a lot of medical terminology with me, which made me very anxious” (P17). Patients have difficulty understanding such shared information, creating a communication gap between clinicians and patients. Thus, some patients said that they are unable to fully grasp key information to actively participate in healthcare decisions, which makes them more anxious.
Clinicians have a lot of knowledge, but sometimes do not communicate the relevant information effectively
One patient used the psychological term, “The curse of knowledge” (P2), to describe the cognitive bias that occurs when clinicians communicate with patients under the assumption that the patient has specialized background knowledge. Another patient pointed out that clinicians need to improve their communication skills to share clear and understandable information.
Reasons for information seeking
Information needs not being met by clinician(s) to enable treatment decisions
Most of the patients expressed that they would like to receive more information from their clinicians, but some patients experienced that their clinicians were too busy or that their concerns were not taken seriously by clinicians. Patients realize that the information they receive from their doctors is not comprehensive enough, which stimulates their information-seeking behavior. Some patients believe that by proactively seeking information, they can more effectively participate in SDM with healthcare professionals.
Fear of the unknown can be alleviated by access to information
Fear of the unknown often gives people “unlimited imagination space,” patients said that when they heard the word “cancer” without knowing the relevant information, their brains always associated this with “death,” and fear and anxiety came into their hearts. After their clinician fully informed them about the disease and possible treatments, the patients said that this feeling of panic dissipated and their trust in their clinician was strengthened.
The conflict between the label of “good cancer” and patients’ concerns about “cancer”
Patients experienced a conflict between clinicians’ description that thyroid cancer is a “good cancer” and their own concerns about having cancer. This disparity prompted patients to seek more information to reconcile these conflicting perceptions and find a resolution. Some patients became more aggressive in seeking information, as they wanted to solve this “little trouble” as soon as possible.
Factors influencing decision making
Future life and health consideration
Patients make treatment decisions taking into account factors related to their future life and health, such as potential recurrence, quality of life, and life events (such as pregnancy). For example, “In 2019, it [tumor] was found to be 0.31 cm, and active surveillance was recommended by the doctor. The average annual growth of about 0.03 cm, this year the size of the tumor is 0.45 cm, because I want to prepare for pregnancy, so I decided to do the surgery. And the reason for choosing the endoscope is that it can reduce the scar on my neck.” (P12) Some patients seem to be aware of the possibility of overdiagnosis, so they chose active surveillance as they perceive surgery could affect their quality of life.
Cancer terminology makes patients lean toward surgery
The word “cancer” influences the choice of surgery for some patients, who instinctively wish to remove the cancer from the body. As P11 stated, “I know thyroid cancer is a good cancer, but it is still a cancer, and if it stays in my body, the risk is very high. I just want to remove it surgically to prevent future problems.”
Decision fatigue, confusion, and uncertainty when presented with too many treatment options or conflicting information
Some patients questioned the information provided by their clinician after receiving a second opinion from several clinicians at some other hospitals, leading them to be unsure whether to continue their own information seeking or rely on their clinician. Others pointed out the struggles with unreliable sources of information, highlighting a critical issue of inadequate and conflicting information, leading to a lack of confidence in treatment decision making.
Self-positioning in treatment decision making
Dependent positioning in decision making with reliance on clinician
Some patients positioned themselves as relying on the authoritative hospital and experienced clinicians to make a decision. This was identified by using phrases such as “defer to the clinician” (P4), “so [I] just listen to the clinician” (P22) and “go straight to the most authoritative hospital” (P5). These patients preferred for the clinician to make the decision, rather than being involved in the decision themselves.
Collaborative positioning in decision making with the clinician as partner
Many patients described their relationship with clinicians by using words such as partnership, which facilitated SDM. “I feel like I have a partnership with my clinician” (P20), “I think we are partners” (P11). Participants indicated that they would seek disease-related information through multiple platforms, including TikTok, Baidu (such as Google), and Red platform (such as Instagram). After gathering a lot of information, the final plan would be discussed with clinicians.
Autonomous positioning in decision making with the patient taking a more active role
Some patients took an active role when asked about their decision-making roles. This was identified by using sentences such as “I’m responsible for my future” (P13), “It’s my right” (P24). They felt responsible for managing their health and integrated a variety of information sources, including clinicians, online resources, and academic papers, to determine their treatment based on the clinician’s input. However, these patients were not completely independent in their decision making, although they had decided on their preferred treatment plan, in which the clinician played a supportive role.
Discussion
The qualitative data describe how low-risk patients with PTC position themselves in SDM and the challenges and factors influencing this experience. “Positions” are collections of beliefs that people have with respect to the rights and responsibilities to act in certain ways. Individuals can choose to exercise these rights and responsibilities. 36,37 In this study, we identified three preference “positions” similar to the results in Genius’s (2013) qualitative study. 30 Self-positioning reflect patients’ preferences, values, and understanding; clinicians understanding of these is important to assist in conducting subsequent consultations effectively. Previous studies have shown that only 63% of patients have their role preferences met in SDM. 38 Clinicians need to acknowledge and support patients in their preferred positioning in SDM. 39
Dependent positioning may reflect a paternalistic approach to decision making where the physician is assumed to know the best treatment for the patient. 40,41 However, this self-positioning may indicate limited autonomy due to internalized patriarchal values, prevailing paternalistic culture, and social hierarchy. 42 –44 Feinberg (1986) categorized paternalism into two forms: “soft” paternalism, where the preferences of a nonautonomous patient (i.e., without decision-making capacity) are not integrated into decision making, and “hard” paternalism, where the preferences of an autonomous patient (i.e., with decision-making capacity) are considered. In our study some participants’ experiences reflected the latter. 45 Therefore, the achievement of SDM requires respecting and restoring patients’ autonomy. 44 Our study findings also reflect some Chinese people’s traditional respect for the expert knowledge of the clinician, as noted in the study by Wong et al. 46
Others have found that younger patients are more likely to participate in decision making, showing strong autonomy or a preference for cooperative decision making. 47,48 Unlike the traditional Chinese emphasis on collectivism and family involvement, 49 this may reflect the gradual increase in individualistic values in modern Chinese society. Although some clinicians still practice paternalistic decision making, 50 the implementation of SDM in clinical practice should become more important in the face of this changing trend.
Within our study, we found some communication challenges between clinicians and patients. Some patients were presented with limited and biased treatment options, as reported by Berger and Doubleday. 51,52 Some patients struggled to understand medical terminology and this induced anxiety, as noted by Nickel et al. 53,54 Thus, clinicians need to convey medical information accurately, comprehensively, and impartially to patients and provide decision-aid tools to facilitate patient understanding. 15,55
The gap in information provision during the information-sharing phase prompted patients to seek additional information and second medical opinions 56 to enable their participation in decision making. This is somewhat unique to the Chinese context as patients can fairly easily access clinicians in different public hospitals. In addition, addressing fear of the unknown and competing beliefs pertaining to cancer are precursors to information-seeking activities. 57,58 Unlike in Western countries, social media in China is frequently used both to obtain information and to share stories. Responses on social media offered supportive comments with widespread use of positive emojis. This leads to a wider sense of social support.
Patients consider various factors in deciding their treatment options. 59 In Chinese culture, cancer is strongly associated with death and is considered inauspicious and unlucky. 60 Consequently, cultural taboos and the rejection of cancer significantly influence patients’ treatment decisions. Furthermore, while the diversity of information channels facilitates better decision making, it also induces negative emotions. 61 Chinese people may exhibit a strong need for certainty and thoroughness when making decisions. This behavior can result in decision fatigue. Patients may struggle to discern their preferences, underscoring the importance of decision aids and emotional support in SDM from multiple sources. 62,63
To the best of our knowledge, this is the first qualitative study to identify three self-positioning roles of Chinese thyroid cancer patients in SDM, complementing the existing literature in oncology on sharing decision making. 14,15 However, our study did not explore the motivation behind the self-positions. Future research should investigate predictive factors and mechanisms to support these positions to enhance SDM implementation. Our data, being retrospective, may be subject to recall bias, and the study was limited to one Chinese province, focusing on younger patients, which may not represent the broader population. Older people traditionally preferred patriarchal decision-making patterns, but a new study suggests a growing preference for SDM among them. 64 In addition, the province is the second largest province in terms of economy, similar to other developed provinces, but perhaps different from less developed parts of China. Future research should include a broader age range and healthcare providers, and adopt multicenter, mixed-method approaches to comprehensively understand the SDM experiences of low-risk patients with PTC.
Conclusions
In summary, our study identifies three self-positions for low-risk patients with PTC in SDM: dependent, collaborative, and autonomous. These roles reflect patients’ preferences for involvement in treatment decisions. Based on these findings, clinicians should inquire about patients’ role preferences, and respect their choices during the SDM process. In addition, clinicians should provide comprehensive treatment information and options to enable SDM.
Footnotes
Acknowledgments
We would like to thank all the patients who participated in this project. Thanks to all the authors for their contributions. Thanks to Yatong Wu for the contribution to the grammar check of this study.
Authors’ Contributions
X.G.: Conceptualization and methodology (equal), data collection (lead), software (supporting), and writing—original draft (lead) and reviewing and editing (supporting). P.Z.: Conceptualization and methodology (equal), data collection (supporting), and writing—review and editing (supporting). H.Z.: Data collection (lead), formal analysis (supporting), and writing—review and editing (supporting). W.W. and Y.D.: Software (lead) and writing—review and editing (supporting). M.Q. and G.S.: Software (supporting) and writing—review and editing (supporting). Q.Z.: Conceptualization (supporting) and writing—review and editing (supporting). J.H.: Methodology (supporting) and writing—review and editing (lead).
Author Disclosure Statement
All authors have declared no potential conflicts of interest, agreed to be accountable for all aspects of the work, and endorsed the version to be published.
Funding Information
This research was funded by the
Supplementary Material
Supplementary Data S1
Supplementary Data S2
Supplementary Data S3
Supplementary Data S4