Decisional Conflicts in Patients With Low-Risk Papillary Thyroid Microcarcinomas Considering Active Surveillance

Key Points

Questions

What decisional conflicts do patients with low-risk papillary thyroid microcarcinomas experience when considering active surveillance as an alternative to surgery, and how do these decisional conflicts develop?

Findings

In this qualitative survey study of 31 patients, participants reported that they experienced decisional conflicts leading to decision difficulty and psychological problems in decision preparation, decision making, and decision implementation. The antecedents of the decisional conflicts include personal influencing factors, system-level influencing factors, and relational-situational context.

Meaning

Strengthening educational and supportive interventions for individuals, health professionals, and health systems can help reduce decisional conflicts.

This qualitative survey study examines patients’ experience of decisional conflict when considering active surveillance as an alternative to surgery for low-risk papillary thyroid microcarcinomas.

Abstract

Importance

Internationally, active surveillance has been shown to be beneficial and safe in the management of low-risk papillary thyroid microcarcinomas. However, choosing active surveillance is a difficult treatment decision for patients with low-risk papillary thyroid microcarcinomas.

Objective

To identify and analyze the antecedents and mediating processes of decisional conflicts when patients consider active surveillance as an alternative to surgery.

Design, Setting, and Participants

In this qualitative study, semistructured interviews were conducted between April 2023 and December 2023 at 3 tertiary hospitals in China. Thirty-one participants who were diagnosed with low-risk papillary thyroid microcarcinomas, who had experienced considering active surveillance as an alternative to surgery and who scored above 25 on the decision conflict scale were purposively recruited. Inductive content analysis led to emergent themes. Data analysis was performed from April 2023 to February 2024. Methods used to protect the trustworthiness of the study results included audit trails and member checks.

Main outcomes and Measures

Patients’ experience of decisional conflicts and the antecedents and mediating processes relating to these decisional conflicts.

Results

Among 31 participants (median [range] age, 39.2 [22-63] years; 22 [71%] were female and 9 [29%] were male), 3 themes were classified: (1) decisional conflicts in decision preparation, (2) decisional conflicts in decision-making, and (3) decisional conflicts in decision implementation. The patient’s experiences of decisional conflicts were diverse and occurred throughout the entire decision-making process. The antecedents of the decisional conflicts included personal influencing factors, system-level influencing factors, and the relational-situational context. Patients with low-risk papillary thyroid microcarcinomas interacted with these antecedents in the process of decision-making and eventually failed to mediate, leading to decisional conflicts.

Conclusions and relevance

This qualitative study found that patients with low-risk papillary thyroid microcarcinomas experienced clinically significant decisional conflicts and experienced considerable challenges and psychological problems in decision-making. The antecedents of decisional conflicts and accompanying mediating processes can provide guidance for individuals, health care professionals, and health care systems to provide decision support for patients with low-risk papillary thyroid microcarcinomas.

Introduction

More than half of differentiated thyroid cancers diagnosed in China are low-risk papillary thyroid microcarcinomas, and the incidence of these cancers is increasing annually.^1,2 Surgery and active surveillance as the management of low-risk papillary thyroid microcarcinomas have shown similar survival rates,^3,4 and active surveillance is widely recommended internationally as a first-line management option.^5,6

Unfortunately, active surveillance has encountered some potential resistance since it was formally incorporated into the guidelines and implemented.⁷ Patients with low-risk papillary thyroid microcarcinomas often reject active surveillance for the reason of being afraid of cancer and feeling that it is hard not to proceed with invasive treatments after receiving that diagnosis.^8,9 Despite data from China showing that active surveillance is feasible in China, with the benefit of reducing surgical complications and medical burden,^10,11 many patients with low-risk papillary thyroid microcarcinomas in China who are suitable for active surveillance are hesitant or even resistant to active surveillance.^12,13 The reasons for this could be multifactorial, including the later implementation of active surveillance in China relative to other countries; the quality of evidence and medical protocols and standards supporting the active surveillance approach for papillary thyroid microcarcinomas are not clear; and information on the risks and benefits of active surveillance is complex to communicate.^10,14

Worldwide studies have shown that patients with low-risk thyroid microcarcinomas often face decisional conflicts when considering treatment options.^15,16 Decisional conflict refers to an individual’s struggles and state of uncertainty when faced with different risks, potential losses, anticipated regrets, and multiple choices that challenge their life values and can leave patients wavering between choices, delaying decisions, experiencing emotional distress and other negative aftereffects.^17,18 To our knowledge, few studies have explored decisional conflict from patient perspectives when considering active surveillance as an alternative to surgery. The aim of this study was to explore patients’ experience of decisional conflict when considering active surveillance as an alternative to surgery.

Methods

Inclusion Criteria

Participants were recruited from the outpatient departments linked to the endocrinology and thyroid of 3 tertiary care hospitals located across Jiangsu province in China. To be included, participants older than 18 years who were able to speak in Chinese, were diagnosed with low-risk papillary thyroid microcarcinomas according to American Thyroid Association guidelines,⁵ or were highly suspected by a professional clinician to have a low-risk papillary thyroid microcarcinoma based on ultrasonographic imaging with a maximum nodule diameter of 1 cm or smaller,^19,20 had experienced considering active surveillance as an alternative to surgery within 2 years of diagnosis, and were required to complete a Decision Conflict Scale questionnaire with a score of 25 or more (ie, clinically significant decision conflict).²¹ Patients with a history of thyroid or other tumors were excluded. Purposeful sampling enabled the most representative cases who met our inclusion criteria to be included.

Written informed consent was provided by all participants, and the study received ethical approval from the ethics committee of the Nursing School of Yangzhou University (YZUHL20230046). The study adhered to the Consolidated Criteria for Reporting Qualitative Research (COREQ) reporting guidelines.²²

Data Collection

The individual one-off interviews were conducted in a private area in the outpatient lounge. The participants were interviewed after completing an outpatient consultation with a specialist, confirming their medical diagnosis and knowing that they needed to make a decision. Participants completed the sociodemographic survey and the Decision Conflict Scale before the interview. The Decision Conflict Scale is a 16-item scale that assesses patient uncertainty about medical decisions.²¹ Potential participants with a score of 25 or less were excluded from this study (n = 61). Two had registered nurse interviewers (Q.Z., X.G.) following a preguided question schedule to conduct a direct interview. The interviewers were women and had no relationship with the patients prior to the interviews. The interview questions were developed based on our understanding of the existing literature and feedback from 4 psychologists and specialists in thyroid surgery and endocrinology. We piloted the interview schedule with a small number of patients (n = 3) and further modified the interview outline (eAppendix in Supplement 1). These pilot research interviews were not included in the data analysis. The interview data were translated verbatim within 24 hours. Participants were numbered from 1 to 31 before encoding to ensure anonymity. All participant details, including sex, age, and treatment choice, were presented anonymously; for example, participant 12 was female, in their mid 20s, and chose surgery (F, mid 20s, surgery).

Data Analysis

The anonymous transcripts in Chinese were aggregated by Q.Z. and then imported into NVivo software (version 12, QSR International). Four authors (Q.Z., X.G., S.L., and R.F.) used inductive content analysis and a constant comparative methodology to present themes and subthemes.^23,24 The data analysis was conducted in 4 steps informed by the methods of Elo and Kyngäs²⁵ (eTable in Supplement 1). The point at which gathering more data revealed no new data units or new subthemes about the decisional conflict was reached after 28 interviews. Saturation was reached when responses given in 3 further interviews confirmed earlier findings.²⁶ We collected data from 31 participants.

The transcripts analyzed were all in Chinese. English translations of themes and statements were checked by Q.Z. and X.G., who are fluent English speakers. The audit trail included a chronological record of the analysis, providing a documentary evidence analysis of the sequence of analytic steps from the first step and through all stages.²⁷ Member checks were performed by respondents (n = 31), and all but 2 confirmed that the results were consistent with their views. Data analysis was performed from April 2023 to February 2024.

Results

Participants

Of the 35 potential participants, 31 (88.5%) patients chose to participate (median [range] age, 39.2 [22-63] years; 22 women [71%]; 9 men [29%]). Overall, 23 participants (74%) were married, and 17 participants (55%) had college degrees. A total of 19 (60%) participants chose surgery. The participants’ characteristics are detailed in the Table.²⁸ The interviews lasted between 40 and 120 minutes.

Table. Demographics of Study Participants (N = 31).

Characteristic	No. (%)
Age, median (range), y	39.2 (22-63)
Sex
Female	22 (71)
Male	9 (29)
Median time to diagnose the disease (range), mo	6.5 (1-24)
Highest level of education
Technical school	4 (13)
Junior college	10 (32)
Undergraduate or Masters degree	17 (55)
Median size of thyroid nodule, (range), mma	8.1 (5-10)
Marital status
Single	6 (20)
Married	23 (74)
Divorced	2 (6)
Recruitment siteb
Hospital 1	18 (58)
Hospital 2	8 (26)
Hospital 3	5 (16)
Mean score of DCS (range)	39.3 (26.56-60.9)
Model of initial detectionc
Physical examination finding	27 (88)
Imaging finding	2 (6)
Case finding at screening	2 (6)
The final decision choiced
Total thyroidectomy	5 (16)
Thyroid lobectomy/partial thyroidectomy	14 (44)
Active surveillance	8 (25)
No decision made	4 (15)

Abbreviation: DCS, decision conflict scale.

^a Ultrasonographic examination report.

^b Hospital 1: the First Affiliated Hospital with Nanjing Medical University; hospital 2: Northern Jiangsu People’s Hospital; hospital 3: Affiliated Hospital of Yangzhou University.

^c How the patient was diagnosed with papillary microcarcinoma from information discussed during the interview based on Singh-Ospina’s definition of mechanism detection.²⁸

^d These participants were asked about their final decision approximately 1 month after completing the interview through the use of phone calls or text messages, which were not representative of these patients’ long-term treatment options.

Themes and Subthemes

The 3 major themes of decisional conflicts were described: decisional conflicts in decision preparation, decisional conflicts in decision making, and decisional conflicts in decision implementation (additional statements are available in the Box). These decisional conflicts were further differentiated into their antecedents, mediating processes, and consequences (Figure).

Box. Decisional Conflicts.

Decisional Conflicts in Decision Preparation

Conflict between patients’ pursuit of information about active surveillance and their lack of ability to appraise the information sourced

• “The information on the TikTok [a short video social software] was very mixed, and I do not know which information was true and which was false.” Participant 5 (F, 30s, surgery)

• “I have seen information about overtreatment on the Internet, and I have hesitated to treat it.” Participant 12 (F, 20s, surgery)

Conflict between the pursuit of an optimum decision and lack of belief in one’s own decision-making ability

• “I do not know if I can make the best choice, you know? The doctors said I was the one making the decision.” Participant 1 (F, 30s, surgery)

• “I want professional experts to help me make a choice, not throw this problem at me.” Participant 2 (F, 30s, surgery)

Conflict between patients’ need to clarify the diagnosis and lack of easy-to-understand test results

• “The result of puncture was suspected papillary carcinoma, while the genetic test results were good, it is hard to choose.” Participant 20 (F, 40s, active surveillance)

• “I found I could not read the ultrasound report at all.” Participant 29 (F, 40s, active surveillance)

Decisional Conflicts in Decision-Making

Conflict between weighing pros and cons of active surveillance and patients’ unclear preferences

• “What God gives, you know, is the best. But if it [cancer] grows and metastasizes, I am going to experience more trauma. That was a tough choice.” Participant 8 (F, 30s, surgery)

Conflict between the patient’s choice and the advice of others relating to active surveillance

• “My mother called me over 30 times to get me into surgery. Even though I wanted to consider active surveillance.” Participant 30 (F, late 20s, no decision made)

Conflict between the subjective perspective of patients wanting to choose active surveillance and the objective medical environment and opinion

• “The doctor in Hong Kong suggested that I could have surgery, the doctor in the mainland suggested that I could observe for a period.” Participant 11 (M, late 40s, surgery)

• “The sonographer suggested active surveillance, the surgeon suggested surgery.” Participant 6 (F, 40s, surgery)

Conflict between living with poor health behaviors and lack of optimistic beliefs about survival with active surveillance for cancer

• “My usual lifestyle was not healthy, I struggled with this decision.” Participant 17 (M, 20s, surgery)

Decisional Conflicts in Decision Implementation

Conflict between implicit obligation to guard family member’s health and the ongoing potential risks of active surveillance

• “I told my daughter I was in good health. I feel sorry for her for worrying about me not having the surgery.” Participant 26 (F, 60s, active surveillance)

Conflict between living with active surveillance and the disease progression evidenced by test results

• “The tumor grade of the nodule is getting worse. I kind of regret not having it removed sooner.” Participant 25 (M, 30s, active surveillance)

Conflict between belief in active surveillance and lack of psychological support

• “I need psychological support from a professional team for active surveillance.” Participant 4 (F, 40s, active surveillance)

• “This decision is complicated and not easy for me, and I am eager for the help of the medical staff.” Participant 15 (F, 30s, active surveillance)

Figure. Antecedents, Mediating Processes, and Decisional Conflicts in Patients Making Decisions Relating to Active Surveillance as a Treatment Option for Low-Risk Thyroid Microcarcinomas.

Theme 1: Decisional Conflicts in Decision Preparation

This theme incorporates 3 subthemes: the conflict between the patients’ pursuit of information about active surveillance and their lack of ability to appraise the information sourced; the conflict between the pursuit of an optimum decision and lack of belief in one’s own decision-making ability; and the conflict between their need to clarify the diagnosis and lack of easy-to-understand test results.

Conflict Between Patients’ Pursuit of Information About Active Surveillance and Their Lack of Ability to Appraise the Information Sourced

Patients said they usually sought information on the internet about treatment choices. However, the information about active surveillance sourced from the internet and the media was often complex, contradictory, and difficult to understand. Most patients reported difficulty in identifying information to inform decision making to help them prepare for active surveillance. As participant 13 reported:

“I read a lot of text [about active surveillance] in the RED [a Chinese social media app], but the opinions were different, and I did not understand it very well.” Participant 13 (F, 40s, surgery).

Conflict Between the Pursuit of an Optimum Decision and Lack of Belief in One’s Own Decision-Making Ability

Most patients expressed that their goal was choosing the best decision. However, they usually questioned their ability to make the best decision. As participant 2 said:

“Before making the decision, I felt the doctor was very professional and I thought his decision was better than mine. I do not know if I’m capable of making the best choice.” Participant 2 (F, 30s, surgery).

Conflict Between Patients’ Need to Clarify the Diagnosis and Lack of Easy-to-Understand Test Results

Some patients expressed the complexity of the results reported by ultrasonography, the results of fine-needle puncture, and the results of genetic testing presented conflicts in terms of finalizing the treatment decision for patients. For example, participant 18 stated:

“The grading and size of the nodules were different in 2 ultrasound examinations at 2 hospitals. These test results are hard to understand.” Participant 18 (F, 20s, surgery).

Theme 2: Decisional Conflicts in Decision Making

This theme reflects 4 subthemes: conflict between weighing pros and cons of active surveillance and patients’ unclear preferences; conflict between the patient’s choice and the advice of others relating to active surveillance; conflict between the subjective perspective of patients wanting to choose active surveillance and the objective medical environment and opinion; and the conflict between living with poor health behaviors and lack of optimistic beliefs about survival with active surveillance for cancer.

Conflict Between Weighing Pros and Cons of Active Surveillance and Patients’ Unclear Preferences

Most patients contemplated the benefits and risks of the active surveillance primarily and usually were unable to clarify what was most important to them and finally got stuck in a difficult decision-making situation. Participant 1 stated:

“I am happy when I think about active surveillance, you know, nobody wants to have surgery. But I am also worried about it [cancer] growing and metastasizing. It is such a hard choice.” Participant 1 (F, 30s, surgery).

Conflict Between the Patient’s Choice and the Advice of Others Relating to Active Surveillance

The study found some patients’ own choices of considering active surveillance were inconsistent with the advice of people around them, such as parents, partners, and friends. As participant 3 described:

“I have always considered active surveillance because I feel healthy and have no discomfort. But my father and wife did not support me, and they told me to have the surgery anyway.” Participant 3 (M, 40s, surgery).

Conflict Between the Subjective Perspective of Patients Wanting to Choose Active Surveillance and the Objective Medical Environment and Opinion

Physicians in different specialties gave different medical opinions about active surveillance to a few patents and left them in a difficult decision-making position. For example, participant 31 stated:

“I had seen 2 experts in this field recently, and their opinions were somewhat different. One expert suggested that I can observe, the other expert suggested that I puncture.” Participant 31 (M, late 40s, no decision made).

Conflict Between Living With Poor Health Behaviors and Lack of Optimistic Beliefs About Survival With Active Surveillance for Cancer

Some patients said their unhealthy lifestyles had left them worried about survival with cancer creating conflict in their decision to potentially choose active surveillance. Participant 9 explained:

“The doctor said I can choose active surveillance, but I work under great pressure and stay up late recently, I do not have confidence in cancer survival. I am struggling with the choice.” Participant 9 (M, 40s, surgery).

Theme 3: Decisional Conflict in Decision Implementation

This theme reflects 3 subthemes: conflict between the implicit obligation to guard family member’s health and the ongoing potential risks of active surveillance; conflict between living with active surveillance and the disease progression evidenced by test results support; and conflict between belief in active surveillance and lack of psychological support.

Conflict Between Implicit Obligation to Guard Family Member’s Health and the Ongoing Potential Risks of Active Surveillance

Some patients believed that active surveillance would bring the risk and potential burden of tumor recurrence to their family. Patients often felt guilty after proceeding with active surveillance instead of surgery. Participant 19 stated:

“My family was worried about me, which made me feel a little guilty to them. You know, if I cut it [the cancer] off, they would not be so worried.” Participant 19 (M, 60s, active surveillance).

Conflict Between Living With Active Surveillance and the Disease Progression Evidenced by Test Results

A few patients who chose active surveillance experienced decision regrets after the outcomes of nodular enlargement, tumor metastasis and other outcomes that were different from their expectations. Participant 22 stated:

“In my ultrasound examination 2 years ago, only 1 side of the thyroid gland had nodules, and now the other side also has nodules. It is progressing, and I kind of regret it [active surveillance].” Participant 22 (F, late 30s, surgery).

Conflict Between Belief in Active Surveillance and Lack of Psychological Support

Some patients expressed their desires that professional physicians and medical teams would provide them with sufficient psychological support to reinforce their belief about active surveillance. For example, participant 21 explained:

“I was very happy when the doctor told me it was safe to choose surveillance. I saw the doctor as my savior. I hoped he would give me more comfort and encouragement instead of just telling me how to do.” Participant 21 (F, 30s, active surveillance).

Discussion

To our knowledge, this is the first qualitative study to explore the decisional conflicts experienced by patients with low-risk papillary thyroid microcarcinomas when considering active surveillance as an alternative to surgery in China. We have found that patients’ failure to interact with individual, system-level and relational-situational factors led to decisional conflicts, which led to decision-making difficulties, decision delays, and negative emotions relating to treatments.

This study found that Chinese patients have difficulties in appraising the information sources about active surveillance. Research from Doubleday et al,²⁹ analyzed 60 websites relating to low-risk thyroid cancer treatment and found that the information pertaining to active surveillance was outdated, incomplete, of average quality, and 90.9% of websites scored unsuitable in literacy. Authors noted that less than one-third of websites (31.8%) discussed all 3 treatment options (total thyroidectomy, lobectomy, and active surveillance). These findings are similar to the current situation of online information about low-risk thyroid cancer treatment in China. China’s future policy and practice should be committed to improving and refining the information on the internet and the media for the treatment of low-risk thyroid cancer, which can help patients improve their knowledge and reduce conflicts from decision-making information.

An important finding of this study is that Chinese patients have difficulty in weighing the pros and cons of active surveillance and clarifying their preferences. In a systematic review and meta-ethnography,³⁰ Yang et al noted that some clinicians also had difficulty eliciting patient preferences and values about treatment decisions. A study³¹ involving 112 dyads of clinicians and patients revealed that unclear personal values and the perception that an ineffective decision was made were both positively correlated with personal uncertainty. These findings are consistent with the finding of our study that patients with low-risk thyroid cancer in China have difficulty in clarifying their preferences about treatment decision, although the data from Chinese patients have been less reported. Studies have shown that some tools, including patient concerns inventory^32,33 and decision aids, have been developed to help patients clarify their own decision-making preferences and values and increase patients’ decision certainty.³⁴ In the future, China should develop suitable decision aids for China’s national conditions to help patients clarify their decision-making preferences by assisting patients in effective decision-making communication and reducing the difficulty of weighing the pros and cons of active surveillance caused by unclear preferences.

We observed that most patients with low-risk thyroid microcarcinomas questioned their own decision-making abilities. Despite international guidelines recommending shared decision-making (SDM) for these patients, achieving it remains a challenge.^5,35,36 It is difficult for patients to fully understand all treatment methods and the uncertainty of results in the short time of a medical consultation.³⁷ These findings suggest that patients who experience high decisional conflict may need more time, attention, and help in the decision-making process.¹⁸ In addition, the study revealed that both clinicians and patients agreed that the support provided by family and friends throughout the progression of the disease is critical, especially in China, a country that attaches great importance to family.^37,38 To our knowledge, SDM and interprofessional SDM (IP-SDM) are widely used in the complex decision-making process of patients, and have achieved positive results.^39,40Therefore, the application of effective and scientific decision models may be beneficial to improve the level of decisional esteem and reduce decisional conflict in patients with low-risk thyroid cancer.

A new finding of our study is that Chinese patients experience cancer concerns similar to other patients,⁴¹ and patients also experienced decisional conflicts related to Chinese culture during active surveillance. Traditional Chinese values such as Confucianism placed a strong emphasis on love and obligation to parents and mutual support among kinship groups.⁴² In China, this seemingly noninterventional management of active surveillance can be misunderstood as a lack of love and obligation for the family. In addition, patients in the study reported a lack of support from their professional medical team for adhering to the belief in active surveillance. Research shows that many patients believe clinicians focus on physical health and scan results and lack information about long-term effects.⁴³ Therefore, support and encouragement from family members for patients during active surveillance, and thoughtful active surveillance care and psychological support from a professional medical team are crucial for reducing conflicts during the implementation of active surveillance.

Research has shown that decision making in patients with thyroid cancer is complex, and many factors influence decision making, such as treatment effectiveness, the benefit-harm balance, and the long-term consequences of treatment on functionality.⁴⁴ In addition, Henry et al¹⁵ noted that risk factors associated with the level of distress experienced by patients with thyroid cancer include an uncertain and ambiguous decision-making background. These studies were similar to the antecedents found in our study that led to decision-making conflicts in patients. A review showed that patients’ coping styles, emotional regulation, self-esteem, social supports, and health literacy shape their degree of resilience and vulnerability in response to the disease. China’s future policy and practice should be committed to attenuating these undesirable factors and promoting a successful mediation process that may reduce decisional conflicts.

Limitations

This study has limitations. The relationship between the degree and dimension of decisional conflict and the qualitative outcome of decisional conflict is still unclear. Future quantitative studies on decisional conflict in a large sample of patients with low-risk papillary thyroid microcarcinomas are needed. The participants in this study were all from Jiangsu province, China, which is a major economic province with the nation’s second-highest total gross domestic product in China. The results may not represent the current situation in less developed areas of China and also may not be applicable to other contexts outside of China. Thus, more data from other regions and countries may be needed. Finally, the relationship between the psychological problems of decisional conflict and health outcomes in patients with low-risk papillary thyroid microcarcinomas remains unclear. Therefore, longitudinal studies on patients with low-risk papillary thyroid microcarcinomas with decisional conflicts are needed to clarify the effects of decisional conflicts on patient outcomes and provide evidence for clinical nursing work.

Conclusions

The results of this qualitative study indicated that patients with low-risk papillary thyroid microcarcinomas who had clinically significant decisional conflicts experienced challenges and psychological problems related to treatment decisions. The conflicts outlined herein also provide insight into the difficult choices that patients have had between active surveillance and surgery. Decisional conflicts in these decision-making processes deserve attention. The antecedents of decisional conflicts and accompanying mediating processes provide guidance for individuals, health care professionals, and health care systems to provide decision support for patients with low-risk papillary thyroid microcarcinomas. Future studies should explore the effects of decisional conflict on patients’ final decision making with the goal of promoting patients’ wise decision making.

Supplement 1.

The interview outline

eTable. Inductive content analysis steps

Supplement 2.

Data Sharing Statement