Purpose
The aim of this study was to better understand the concept of patient activation in patients with cancer by identifying its dimensions and attributes and clarifying its definition through concept analysis.
Methods: This concept analysis study used the method of Walker and Avant (2019), and systematically reviewed dictionary entries and 30 studies in various academic fields.
Results: The concept of patient activation in patients with cancer was found to have four attributes: seeking health information, participating in treatment decision-making, confidence in health care, self-management behaviors. The antecedents identified were cancer history, fear of recurrence, information and resources provided by healthcare professionals, access to healthcare providers, negative perceptions of cancer, social support, and sociodemographic status. The consequences were appropriate treatment implementation, satisfaction with treatment, improved physical and mental health conditions, improved quality of life, reduced healthcare costs, and reduced stress.
Conclusion: The development of patient activation measurements tailored to the characteristics of the disease and the goal of strengthening the role of patients, as well as the development and implementation of policies, programs, and guidelines to promote patient activation, will improve the medical experience and outcomes of cancer patients and adopt a more person-centered treatment approach.
The aim of this study was to better understand the concept of patient activation in patients with cancer by identifying its dimensions and attributes and clarifying its definition through concept analysis.
This concept analysis study used the method of Walker and Avant (2019), and systematically reviewed dictionary entries and 30 studies in various academic fields.
The concept of patient activation in patients with cancer was found to have four attributes: seeking health information, participating in treatment decision-making, confidence in health care, self-management behaviors. The antecedents identified were cancer history, fear of recurrence, information and resources provided by healthcare professionals, access to healthcare providers, negative perceptions of cancer, social support, and sociodemographic status. The consequences were appropriate treatment implementation, satisfaction with treatment, improved physical and mental health conditions, improved quality of life, reduced healthcare costs, and reduced stress.
The development of patient activation measurements tailored to the characteristics of the disease and the goal of strengthening the role of patients, as well as the development and implementation of policies, programs, and guidelines to promote patient activation, will improve the medical experience and outcomes of cancer patients and adopt a more person-centered treatment approach.
Cancer is the leading cause of death in Korea, with mortality rising by 0.6% from the previous year, resulting in 161.1 deaths per 100,000 individuals [1]. In 2020, this disease was responsible for one in every six deaths globally, totaling nearly 10 million fatalities [2]. Despite this high mortality rate, the combination of early detection and advancements in treatment has improved life expectancy and survival rates for patients. Therefore, cancer survivors are now living longer post-treatment, as evidenced by the increase in the 5-year survival rate from 54.1% in 2001~2005 to 71.5% in 2016~2020 [3].
As long-term cancer treatment often consists of brief outpatient clinic visits, patients and their families increasingly bear the day-to-day responsibility of managing the disease [4]. Cancer patients undergoing surgery, chemotherapy, or radiation therapy typically encounter a range of physical, psychological, and social challenges. They are required to take an active role in managing symptoms, following complex treatment plans, and minimizing the risk of disease recurrence [4, 5, 6]. Thus, there is a growing need for patients to self-manage their care, spanning from prevention to end-of-life considerations. This includes early detection, diagnosis, treatment, and survivorship, often with limited guidance or oversight from healthcare professionals [4].
Interest, motivation, and voluntary participation are necessary for cancer patients to effectively manage their treatment consistently. Hibbard et al. [7] identified this concept as patient activation. Patient activation is a critical element in the approach to health behaviors, emphasizing an individual's knowledge, skills, and confidence in managing their health [7]. A higher level of patient activation is associated with more proactive self-management and regular cancer screenings in cancer patients [8]. Recent studies show that cancer survivors with higher levels of activation tend to eat healthier, have a better understanding of their diagnosis, adhere more closely to treatment plans, and are more adept at handling treatment side effects [9]. This increased activation also influences their trust in healthcare professionals and their decision-making processes [10], as well as positively affecting psychological factors such as anxiety, depression, stress, and quality of life [11, 12]. Additionally, these patients are nearly twice as likely to avoid hospital readmission within 30 days of discharge [13], and they experience fewer emergency room visits, lower healthcare costs, and reduced mortality rates. These findings underscore the importance of patient activation in the health management of cancer patients.
However, the terms "patient activation" and "patient participation" are often used interchangeably, although they represent distinct concepts and are not clearly defined [14]. Patient activation focuses on the patient's willingness and capacity to take charge of their own health and healthcare, while patient participation encompasses a wider range of activities, including activation. It refers to the patient's engagement in behaviors such as obtaining preventive care or participating in regular physical activity [14, 15]. Patient activation is distinct from patient participation, since "patient activation" implies a more active role in health behaviors.
Previous domestic and international research has revealed a lack of clarity in identifying and defining the characteristics of patient activation concepts. While studies on patient activation have been conducted internationally across a range of chronic diseases, such as diabetes and chronic obstructive pulmonary disease [16, 17], there remains a research gap concerning cancer patients [9]. Therefore, it is crucial to understand what patient activation entails within the context of cancer nursing.
This study conducted a systematic conceptual analysis of "patient activation in cancer patients" utilizing Walker and Avant's method [18] to elucidate and structure the concept as it is currently understood in academic circles. The research also sought to establish a theoretical foundation for nursing practice and research by delineating its operational definition in the context of cancer patients' self-management. The specific objectives of this study were as follows: first, to determine the antecedents, influencing factors, attributes, and consequences associated with the concept of patient activation in cancer patients; second, to clarify alternative terms and concepts related to patient activation; and third, to tailor the definition of patient activation to the unique circumstances of cancer patients.
This study employed Walker and Avant's concept analysis method [18] to investigate the concept of patient activation. Instead of conducting field research, it focused on analyzing existing scholarly words for definitions, purposes, relationships, processes, and criteria of the concept. The study began with a comprehensive literature review to grasp the extent of the concept's usage. This was followed by identifying the antecedents and attributes of the concept in each document and confirming the findings to carry out the concept analysis.
The subjects of this study were dictionary definitions, theories, and prior research on "patient activation in cancer patients." This study included research and academic journal articles in Korean or English that focused on patient activation in cancer patients. It excluded unrelated studies, those with inappropriate participants—such as those not exclusively concentrating on chronic disease or cancer patients—and dissertations or conference materials, including poster presentations.
Two researchers and a librarian conducted literature searches to gather data. We sourced international literature from PubMed, the Cumulative Index of Nursing and Allied Health Literature (CINAHL), Web of Science, and Scopus. Domestic literature was obtained from the Research Information Service System (RISS), Korean Studies Information Service System (KISS), DBpia, and ScienceON. We did not limit the search period, and the keywords used were "Cancer OR Neoplasm" AND "Patient activation." We validated the data collection using EndNote 20 and Excel. Initially, we identified 1,182 documents in the international literature, including 163 from PubMed, 431 from CINAHL, 276 from Web of Science, and 223 from Scopus. In the domestic literature, 1 RISS, 86 KISS, 1 DBpia, and 1 ScienceON were found (Table 1). We removed 439 duplicates. After reviewing the titles and abstracts, we excluded 646 articles for reasons such as irrelevance to the research purpose, inappropriate participant focus (e.g., on chronic disease patients), or being conference presentations (including poster presentations). Following a full-text review, we excluded an additional 67 articles for not analyzing the concept of patient activation, lacking a sole focus on cancer patients, or being dissertations. Ultimately, we selected 30 documents for analysis (Figure 1, Appendix 1).
Figure 1
Flowchart of study selection.
Table 1
Search Strategies Applied to Online Databases
The data for this study were analyzed using the concept analysis procedure outlined by Walker and Avant [18], which was grounded in a comprehensive literature review. The research team selected the concept of patient activation in cancer patients, defined the objectives, and explored how the concept is applied within the literature. To facilitate a systematic and reliable concept analysis, a data table was constructed to document the type of literature, its meaning, and the attributes of the concept. This table included the author's name, types of literature (such as books, journal articles, dissertations), categories of literature (including dictionary definitions, nursing research, and other academic research), databases used, publication dates, research designs, applications of the concept, its attributes, and its antecedents and consequences. The researchers independently compiled the data and engaged in discussions about the selection and analysis of the data to distill the meaning and attributes of the concept. They continued this process until they reached a consensus. The process also involved consultations with doctoral students enrolled in nursing theory development courses that included concept analysis, as well as with professors who had extensive experience in concept analysis and the development of nursing theories. These measures were taken to ensure the reliability and validity of the research.
Regarding the dictionary definition of "patient activation," the term "patient" is written in Hanja (Chinese characters used in Korean) as "患者," meaning "a person suffering from illness," and "activation" is written as "活性化," meaning "the act of a molecule or atom becoming active by receiving light or energy" or "to actively initiate or promote a function or activity" [19]. In English dictionaries, "patient" is defined as "a person who is receiving medical care, or who is cared for by a specific doctor or dentist when necessary," and "activation" is defined as "the act of making something start or start working" [20]. Thus, "patient activation" implies initiating actions for those in need of medical treatment.
Patient activation emerged as a concept in the field of health education in 1975, focusing on the relationship between consumers and their engagement in managing their health [21]. Hibbard et al. [7] developed the Patient Activation Measure (PAM) based on the chronic illness care model, which emphasizes patient-centered management and the importance of having activated patients [22]. They defined patient activation as the state in which individuals possess the knowledge, skills, behavior, and confidence necessary to manage their own health. This concept has been applied across various fields, including the development of tools. In Korea, researchers have assessed patient activation among chronic disease patients over the age of 65, examining factors such as social support, disease awareness, response and coping strategies, and self-management potential. They also explored its relationship with quality of life [23]. Internationally, the concept has been utilized in contexts such as health locus of control [24], self-efficacy in self-management behaviors [25], and various aspects of health communication [26].
The PAM was originally developed with 22 items [7] dealing with health knowledge, telemedicine, and medical policy services. It measures four distinct sub-areas: the patient's belief in the importance of their role, the knowledge and confidence required to take action, the adoption of lifestyle changes, and the maintenance of behavioral change. The PAM 13, a condensed version created in 2005, utilizes a 1-4 point Likert scale, where higher scores reflect greater patient-centered care and activation for health behaviors [27]. Initially, it was applied to adults over the age of 45 [27] and has been subsequently researched in various populations, including the elderly [28].
The term "activation" in psychology, which originated from classical behaviorism, focuses on increasing the frequency of adaptive behaviors while reducing those that impede reward acquisition. This approach emphasizes the context in which behaviors occur and the values that patients aspire to achieve in those situations. It involves the strategic planning and execution of alternative, more adaptive behaviors in place of the maladaptive ones previously employed, with the goal of realizing these values [13, 29].
The concept of patient activation, as popularized by Hibbard et al. [7], was first applied in the management of diabetes in 1991 [30]. Research focusing on patients with diabetes [17] utilized patient activation to encourage selfcare, highlighting the necessity for systematic programs that integrate the principles of patient activation. A study involving hospitalized elderly patients [31] found that patient activation played a crucial role in effective post-discharge care and the performance of health behaviors. Furthermore, the level of patient activation was closely associated with the patients' perceptions of person-centered care provided by nurses during their hospital stay. In the context of chronic disease management [32], enhancing the patient's role is vital for improving their physiological, psychosocial, and behavioral health outcomes. Healthcare providers are encouraged to tailor their support to match the varying levels of patient activation among individuals. Additionally, research on cancer patients undergoing chemotherapy [33] revealed that those with higher levels of activation experienced fewer sleep disturbances. This suggests a need for developing tools to assess patient activation in such populations, even though patient activation is not a direct factor affecting sleep disturbances.
① Asking questions to healthcare professionals about treatment [A3,A26,A29].
② Participating in treatment decision-making [A1,A5,A9,A13,A18,A20,A29].
③ Seeking information about patient care [A2,A3,A20,A26].
④ Reducing negative emotions and increasing positive ones [A19].
⑤ Maintaining healthy lifestyle habits [A11,A16].
⑥ Monitoring physical and psychological symptoms [A4,A6,A9].
⑦ Performing self-management [A4,A6,A9,A10,A30].
⑧ Conducting regular cancer screenings [A9,A15].
⑨ Discussing screening results with healthcare providers [A9,A15].
⑩ Having confidence in health management [A22,A24].
⑪ Believing that personal actions can impact health [A22].
The key attributes of patient activation in cancer patients were identified through a literature review based on the provisional attributes: health information seeking, participation in treatment decision-making, confidence in health care, and self-management behaviors.
(1) Attribute 1: health information seeking (①,③)
(2) Attribute 2: participation in treatment decision-making (②,⑨)
(3) Attribute 3: confidence in health care (⑩,⑪)
(4) Attribute 4: self-management behaviors (④,⑤,⑥,⑦,⑧)
The model case in this study clearly illustrates all the attributes of patient activation in cancer patients as identified through a literature review [18].
Ms. A, a 55-year-old woman, was diagnosed with thyroid cancer during a routine health screening a year ago and subsequently underwent a thyroidectomy. Initially, the diagnosis came as a shock to her. However, she drew comfort from her acquaintances who pointed out that thyroid cancer generally has a higher cure rate compared to other cancers. Encouraged by this knowledge and her own positive outlook, she found the confidence to maintain good health practices (Attribute 3). After her surgery, Ms. A proactively sought information about thyroid cancer. She turned to the internet and various books to educate herself on the condition and its long-term management (Attribute 1). In discussions with her doctor, she addressed the necessity of lifelong medication, emphasizing the importance of taking hormonal medications consistently and on schedule, ensuring adequate rest and sleep, and sustaining healthy lifestyle habits. She has been punctual in taking her prescribed hormone medication, has adhered to dietary recommendations, and ensures she gets at least 7 hours of sleep each night (Attribute 4). Additionally, Ms. A has been vigilant in monitoring any symptoms, such as fatigue or numbness in her hands and feet and has regularly brought these to her doctor's attention during outpatient visits. She sought to understand whether these symptoms were lifestyle-related and learned that they are common after surgery due to decreased calcium and hormone levels. As a result, she has adjusted her medication dosage in response to blood test results (Attributes 2, 4). Ms. A has meticulously kept a diary to track all her health management activities (Attribute 4).
This model case depicts a patient who is confident in her ability to manage her health, actively seeks information about her condition, consults with medical professionals about symptoms and concerns, and participates in treatment plan decision-making, exemplifying all aspects of patient activation.
A borderline case contains the majority, but not all, of the attributes of interest [18]. Mr. B, a 43-year-old man, recently began experiencing symptoms of indigestion and weight loss, leading to a diagnosis of stomach cancer. Following a gastrectomy, he is currently undergoing chemotherapy. As a young father, he is determined to fight his illness for the sake of his family. He actively engages with healthcare professionals to understand the necessary precautions and potential side effects of his treatment, and he is learning how to manage them (Attribute 1). He also runs a blog and has joined an online self-care community where he shares his experiences with the disease and receives support from fellow gastric cancer patients (Attribute 2). Recognizing the role of diet and exercise in his recovery, Mr. B consciously avoids salty and greasy foods, despite his preference for them, and commits to daily walks of over 30 minutes with his family (Attribute 4). However, the long-term chemotherapy has led to fatigue, pain, and nausea, which he regularly discusses with his doctor. Even with prescribed medications, Mr. B experiences anxiety and feels overwhelmed by the fluctuating nature of his symptoms and overall health. "I am afraid that these changes are related to a recurrence or metastasis, and I do not know how long I will have to continue this treatment.." he expressed. Before his diagnosis, Mr. B had no significant underlying health conditions and considered himself healthy. The stark contrast between his past and current health status has been challenging for him to come to terms with, resulting in a considerable decline in his self-esteem.
This borderline case presents a patient who proactively seeks health information from medical professionals and actively participates in making treatment decisions, while consistently managing self-care. However, the patient faces challenges in maintaining confidence in their health management due to ongoing side effects.
A contrary case serves to illustrate what a concept is not by presenting a contrasting example. This approach aids analysts in gaining a clearer understanding of the concept [18].
Ms. C, a 42-year-old woman, was diagnosed with breast cancer and underwent surgery a year ago. Postoperatively, she was required to complete 30 sessions of radiation therapy and to take tamoxifen every evening. Despite experiencing radiation-induced skin discoloration and burn-like symptoms, she has chosen not to use the prescribed ointment. In an effort to prevent recurrence, the hospital provided education on the importance of adhering to medication schedules, engaging in regular exercise, and abstaining from alcohol and processed foods. Nevertheless, Ms. C has been noncompliant with this guidance, expressing her belief that such measures are troublesome. She rationalizes, "It is fine to eat just one cup of instant noodles. There's no point in trying to get healthy since I'm already sick. Missing one day of medication won't make a difference."
This case exhibits none of the characteristics typically associated with patient activation, including the pursuit of health information, involvement in making treatment decisions, confidence in health care, and engagement in self-management behaviors such as monitoring symptoms or upholding healthy lifestyle habits.
A related case appears to resemble the concept of patient activation at first glance; however, upon closer scrutiny, it becomes apparent that it presents distinct viewpoints and is missing the core attributes identified in our study. By thoroughly examining the interconnected web of related concepts, this type of case yields a valuable understanding of the fundamental and non-fundamental attributes of the concept [18].
Ms. D, a 69-year-old woman with diabetes and hypertension, was diagnosed with colon cancer six months ago and underwent a rectal resection. She is hospitalized every two weeks for three days to receive chemotherapy. Prior to hospital admission, both Ms. D and her son, who is her primary caregiver, were tested for Coronavirus Disease 2019 (COVID-19). She was admitted after her test results came back negative. However, her discharge was delayed due to high blood sugar levels, which required medication therapy for glucose control as prescribed by her physician. After completing chemotherapy, her glucose levels stabilized, enabling her to return home.
Antecedents are events or conditions that precede patient activation in cancer patients, serving to validate the foundational assumptions of the concept. Consequences, on the other hand, are events or conditions that arise as a result of patient activation, suggesting additional avenues for research into the concept [18].
In this study, the identified antecedents included a history of cancer [A2], fear of recurrence [A21], information and resources provided by healthcare professionals [A2, A6], access to healthcare providers [A2,A21], negative perceptions of cancer [A8,A28], social support [A1,A23, A27], and sociodemographic status [A21,A23,A27] (Figure 2).
Figure 2
Conceptual structure of the patient activation among patients with cancer.
The consequences identified were appropriate treatment implementation [A9,A29], satisfaction with treatment [A9,A29], improved physical and mental health conditions [A4,A7,A13,A19,A25], improved quality of life [A14,A19,A23,A27,A29], reduced healthcare costs [A12], and reduced stress [A17] (Figure 2).
Empirical referents are categories or distinctions that elucidate the occurrence of a concept, not the concept itself, but are directly related to its defined attributes [17]. In this study, empirical referents that correspond to the attributes of patient activation were identified in the work of Vohra et al. [A27]. Their research showed that 56 patients with pancreatic cancer improved their mental and physical quality of life by maintaining lifestyle habits and confidence in their ability to manage their health while addressing their health problems and symptoms. Similarly, Brunet et al. [A3] conducted a qualitative study with 17 cancer survivors, demonstrating how seeking information about their disease empowered them to manage their condition and treatment-related issues. This process enhanced their knowledge, skills, and confidence in making informed choices and decisions.
The PAM developed by Hibbard et al. [7] is a widely used tool in healthcare for assessing patient activation. Originally, it was a 22-item scale designed for patients with chronic diseases. In 2005, it was condensed to a 13-item version (PAM-13), which categorizes the stages of patient activation into: belief in the importance of the patient's role, confidence and knowledge to take action, actual performance of the behavior, and maintaining the behavior under stress [7, 27]. The PAM-13 encompasses several attributes identified in this study; however, it does not include "health information seeking," suggesting that the empirical referents for cancer patient activation are consistent with the concept's attributes, but not exhaustive.
Treatment and health management for cancer patients vary based on the stage and progression of their disease. It is essential for patients to actively participate in their healthcare and treatment process to achieve better health outcomes. Recognizing this, patient activation has been the subject of research across vadecision-making rious populations. Numerous studies have shown that patient activation can enhance adherence to treatment and positively affect the quality of life for cancer patients. However, the majority of research has been concentrated on patients with chronic diseases, making it challenging to identify the unique characteristics of patient activation in the context of cancer. Additionally, there is a scarcity of conceptual analysis studies on patient activation among cancer patients within the nursing field. Therefore, the aim of this study was to elucidate the meaning and attributes of patient activation in cancer patients through a focused conceptual analysis.
The attributes of patient activation in cancer patients identified through the literature review and conceptual analysis include "health information seeking," "participation in treatment decision-making," "confidence in health care," and "self-management behaviors." "Health information seeking" is a notable distinction from the commonly utilized PAM 13. It represents the initial attribute where patients proactively seek information and inquire about their treatment. This attribute relates to understanding knowledge about their illness and treatment options, actively asking questions even without prompting, and establishing a collaborative relationship with healthcare professionals. These characteristics can lead to increased treatment satisfaction, especially when healthcare professionals provide information and resources, as well as consistent access to healthcare providers. Moreover, this attribute enables patients to anticipate, prevent, or manage potential side effects or complications from treatment. In this context, the ability to search for diverse information and critically evaluate the search results is crucial for "health information seeking" [34]. Consequently, the formation of self-help groups among cancer patients to exchange information can be beneficial not only for symptom management but also for providing emotional and physical support, thereby improving the health outcomes of cancer patients.
The second attribute is "participation in treatment decision-making," which entails sharing information about one's health status and treatment options with medical professionals and working together to identify the most appropriate course of action. Effective and open communication between healthcare providers and patients is essential, and it involves providing information and resources that enable patients to make informed decisions. For instance, healthcare professionals should solicit and respect patients' opinions to aid in formulating treatment decisions, while patients are expected to be knowledgeable about their illness and the available treatment options. Patients with higher levels of activation tend to react more positively to medical information provided by healthcare providers [34] and are more likely to feel that their treatment plans are informed and align with their values [A9]. This collaborative approach to decision-making honors patients' rights and responsibilities and is a cornerstone of patient-centered care. Consequently, healthcare professionals can lay the groundwork for patients to make informed decisions, thereby deepening their understanding of their condition and their ability to participate actively in treatment choices. It is also crucial for medical professionals to encourage patients to feel confident in their decisions and, when necessary, to seek advice from other specialists or family members. To achieve this, educational or coaching programs designed to increase patient activation in cancer patients should be developed and implemented.
The third attribute is "confidence in health care." This concept refers to the belief that one's actions can influence one's health and the conviction that one can comprehend and manage one's health status [A22]. Even under stress, cancer patients with high levels of activation retain their confidence to alter or sustain their lifestyle habits [A8,A24]. The way cancer is perceived is pivotal in nurturing this confidence. Positive thoughts and beliefs about cancer are associated with increased patient activation. Patients who view cancer as a matter of fate exhibit higher activation levels [A8,A28], while those who are preoccupied with concerns about recurrence and the uncertainties of the future tend to show lower activation [A21]. Therefore, it is essential to consider cancer patients' perceptions of the disease to foster confidence in self-management. Patients should be encouraged to maintain a positive outlook on their health and life, to trust in their capacity to achieve their goals, and to feel empowered to confront and surmount obstacles. Developing such confidence necessitates support [A23,A27], which can be offered through various sources, including family, friends, caregivers, and social networks. This support helps cancer patients to become more confident in actively engaging in their health management, ultimately improving their quality of life.
The fourth identified attribute is "self-management behaviors," which are particularly crucial for cancer patients. Given the need for long-term treatment and continuous health management, these patients must actively manage symptoms and sustain healthy lifestyle practices. Research on cancer patients indicates that those with higher levels of patient activation tend to be nonsmokers, engage in regular exercise, and exhibit better medication adherence [A7,A9]. Additionally, they self-monitor and manage side effects, consistently attend hospital appointments for preventive treatments, and utilize health management services [7, 35, A9].
Compared to research on patients with chronic kidney disease [36] or osteoarthritis [37], the importance of preventing or managing disease-related symptoms, along with activation that encourages changes in health behaviors, is particularly critical for cancer patients who are undergoing diverse and complex treatments. Prior studies have demonstrated that effective self-management can improve physical and psychological health as well as quality of life [A7,A19,A30]. Consequently, patient activation may serve as a viable self-management strategy in clinical practice. This approach necessitates an assessment of individual activation levels and the tailoring of self-management interventions and support to meet patientspecific needs.
The goal of this study was to improve our understanding and clarify the concept of patient activation in cancer patients and to contribute to the creation of relevant assessment tools. The results suggest that initiatives such as decision-making coaching, which explore the precursors and characteristics of patient activation in cancer care, could lead to improved physical and mental health outcomes, ultimately improving the quality of life for these patients. From a theoretical perspective, this conceptual analysis expands our knowledge and establishes a foundation for the development of models and theories related to patient activation. In terms of research, this study highlights the need to adapt and refine the PAM to better reflect the unique aspects of cancer patients' experiences. In a practical sense, the insights gained from this study offer a framework for implementing patient-centered nursing practices and for the development of educational programs and guidelines aimed at empowering patients and fostering patient activation.
However, the findings of this study have limited generalizability because it only included Korean and English studies based solely on titles and abstracts. While domestic and international research was included, concepts were only extracted from international literature, necessitating caution when applying these concepts across different socio-cultural contexts. Moreover, Walker and Avant's [18] conceptual analysis method, which was used in this study, has limitations in developing and analyzing concepts for nursing phenomena. For various conceptual analyses, a more comprehensive approach combining theoretical and practical stages may be required.
This study employed Walker and Avant's method of concept analysis [18] to systematically review research across various academic disciplines. It identified key attributes of patient activation in cancer patients, which include "health information seeking," "participation in treatment decision-making," "confidence in health care," and "self-management behaviors." The antecedents of patient activation were determined to be a history of cancer, fear of recurrence, the provision of information and resources by healthcare professionals, consistent access to healthcare providers, perceptions of cancer, social support, and sociodemographic status. The consequences of patient activation were found to include appropriate treatment implementation, satisfaction with treatment, improved physical and mental health conditions, improved quality of life, reduced healthcare costs, and reduced stress.
The findings of this study have theoretical implications for the development of additional concepts related to patient activation among cancer patients, offering guidance for future theoretical models or development. From a research perspective, the study suggests the creation of patient activation instruments specifically designed for the unique aspects of cancer patient care, as well as the execution of qualitative research to deepen our understanding of cancer patients' experiences and the processes they undergo in relation to patient activation. Practically speaking, these insights highlight the necessity to devise and apply policies, programs, and guidelines that promote patient activation. The aim is to strengthen the role of patients, thereby improving their healthcare experiences and outcomes, and advancing more patient-centered approaches to treatment.
CONFLICTS OF INTEREST:The authors declared no conflict of interest.
AUTHORSHIP:
Study conception and design acquisition - JSY and LES.
Data collection - JSY and LES.
Analysis and interpretation of the data - JSY and LES.
Drafting and critical revision of the manuscript - JSY and LES.
A1. Acquati C, Hibbard JH, Miller-Sonet E, Zhang A, Ionescu E. Patient activation and treatment decision-making in the context of cancer: examining the contribution of informal caregivers' involvement. Journal of Cancer Survivorship. 2022; 16(5):929-39. https://doi.org/10.1007/s11764-
A2. Bernat JK, Coa K, Blanch-Hartigan D. Cancer survivors as activated patients: exploring the relationship between cancer history and patient activation. Journal of Psychosocial Oncology. 2017;35(2):239-47. https://doi.org/10.1080/07347332.2016.1265624
A3. Brunet J, Wurz A, Srivastava D. The process of self-management: a qualitative case study reporting on cancer survivors' and program staff's experiences within one self-management support intervention. Health Education & Behavior. 2020;47 (4):592-601. https://doi.org/10.1177/1090198120902029
A4. Cansiz G, Donmez AA, Kapucu S, Borman P. The effect of a self-management lymphedema education program on lymphedema, lymphedema-related symptoms, patient compliance, daily living activities and patient activation in patients with breast cancer-related lymphedema: a quasi-experimental study. European Journal of Oncology Nursing. 2022;56: 102081. https://doi.org/10.1016/j.ejon.2021.102081
A5. Chawak S, Chittem M, Dhillon H, Huilgol N, Butow P. Treatment-related communication experiences and expectations among Indian cancer patients receiving radiation therapy and their family members: a qualitative study. Patient Education and Counseling. 2022;105(9):2913-22. https://doi.org/10.1016/j.pec.2022.05.003
A6. Cooley ME, Abrahm JL, Berry DL, Rabin MS, Braun IM, Paladino J, et al. Algorithm-based decision support for symptom self-management among adults with cancer: results of usability testing. BMC Medical Informatics and Decision Making. 2018;18(1):1-20. https://doi.org/10.1186/s12911-
A7. Greene J, Hibbard JH, Greene J, Hibbard JH. Why does patient activation matter? an examination of the relationships between patient activation and health-related outcomes. Journal of General Internal Medicine. 2012;27(5):520-6. https://doi.org/10.1007/s11606-
A8. Hay JL, Zabor EC, Kumar J, Brennessel D, Kemeny MM, Lubetkin EI. Cancer beliefs and patient activation in a diverse, multilingual primary care sample. Psychooncology. 2016;25(9):1071-8. https://doi.org/10.1002/pon.4196
A9. Hibbard JH, Mahoney E, Sonet E. Does patient activation level affect the cancer patient journey? Patient Education and Counseling. 2017;100(7):1276-9. https://doi.org/10.1016/j.pec.2017.03.019
A10. Howell D, Pond GR, Bryant-Lukosius D, Powis M, McGowan PT, Makuwaza T, et al. Feasibility and effectiveness of self-management education and coaching on patient activation for managing cancer treatment toxicities. Journal of the National Comprehensive Cancer Network. 2023;21(3): 247-56. https://doi.org/10.6004/jnccn.2022.7095
A11. Hubner J, Welter S, Ciarlo G, Kasmann L, Ahmadi E, Keinki C. Patient activation, self-efficacy and usage of complementary and alternative medicine in cancer patients. Medical Oncology. 2022;39(12):1-5. https://doi.org/10.1007/s12032-
A12. Jansen F, Coupe VMH, Eerenstein SEJ, Leemans CR, Verdonck-de Leeuw IM. Costs from a health care and societal perspective among cancer patients after total laryngectomy: are they related to patient activation? Supportive Care in Cancer. 2018;26:1221-31. https://doi.org/10.1007/s00520-
A13. Jiang S, Hong YA. Mobile-based patient-provider communication in cancer survivors: the roles of health literacy and patient activation. Psycho-Oncology. 2018;27(3):886-91. https://doi.org/10.1002/pon.4598
A14. Kanu C, Brown CM, Rascati K, Moczygemba LR, Mackert M, Wilfong L. Are health literacy and patient activation related to health outcomes in breast cancer patients? Health Literacy Research and Practice. 2021;5(3):e171-8. https://doi.org/10.3928/24748307-
A15. Katz ML, Fisher JL, Fleming K, Paskett ED. Patient activation increases colorectal cancer screening rates: a randomized trial among low-income minority patients. Cancer Epidemiol Biomarkers & Prevention. 2012;21(1):45-52. https://doi.org/10.1158/1055-
A16. Lemanska A, Poole K, Manders R, Marshall J, Nazar Z, Noble K, et al. Patient activation and patient-reported outcomes of men from a community pharmacy lifestyle intervention after prostate cancer treatment. Support Care Cancer. 2022; 30(1):347-58. https://doi.org/10.1007/s00520-
A17. Maarschalkerweerd P, Rademakers J, Rijken M. Cancer survivors' activation to self-management and its relationship with participation in paid work and work-related problems. Psycho-Oncology. 2017;26(11):1881-7. https://doi.org/10.1002/pon.4400
A18. Mayer DK. How do we encourage patient engagement?. Clinical Journal of Oncology Nursing. 2014;18(5):487-8. https://doi.org/10.1188/14.CJON.487-
A19. Mazanec SR, Sattar A, Delaney CP, Daly BJ. Activation for health management in colorectal cancer survivors and their family caregivers. Western Journal of Nursing Research. 2016;38(3):325-44. https://doi.org/10.1177/0193945915604055
A20. Munkhtogoo D, Nansalmaa E, Chung KP. The relationships of health literacy, preferred involvement, and patient activation with perceived involvement in care among Mongolian patients with breast and cervical cancer. Patient Education & Counseling. 2022;105(1):158-65. https://doi.org/10.1016/j.pec.2021.05.010
A21. O'Malley D, Dewan AA, Ohman-Strickland PA, Gundersen DA, Miller SM, Hudson SV. Determinants of patient activation in a community sample of breast and prostate cancer survivors. Psycho-Oncology. 2018;27(1):132-40. https://doi.org/10.1002/pon.4387
A22. Palmer NRA, Kent EE, Forsythe LP, Arora NK, Rowland JH, Aziz NM, et al. Racial and ethnic disparities in patient-provider communication, quality-of-care ratings, and patient activation among long-term cancer survivors. Journal of Clinical Oncology. 2014;32(36):4087-96. https://doi.org/10.1200/jco.2014.55.5060
A23. Post KE, Berry DL, Shindul-Rothschild J, Flanagan J. Patient engagement in breast cancer survivorship care. Cancer Nursing. 2021;44(5):e296-302. https://doi.org/10.1097/ncc.0000000000000853
A24. Salgado TM, Mackler E, Severson JA, Lindsay J, Batra P, Petersen L, et al. The relationship between patient activation, confidence to self-manage side effects, and adherence to oral oncolytics: a pilot study with Michigan oncology practices. Support Care Cancer. 2017;25(6):1797-807. https://doi.org/10.1007/s00520-
A25. Smith SG, Curtis LM, Wardle J, von Wagner C, Wolf MS. Skill set or mind set? associations between health literacy, patient activation and health. PLoS One. 2013;8(9):e74373. https://doi.org/10.1371/journal.pone.0074373
A26. Tolotti A, Barello S, Vignaduzzo C, Liptrott SJ, Valcarenghi D, Nania T, et al. Patient engagement in oncology practice: a qualitative study on patients' and nurses' perspectives. International Journal of Environmental Research and Public Health. 2022;19(18):11644. https://doi.org/10.3390/ijerph191811644
A27. Vohra Y, Brown CM, Moczygemba LR, Wilfong L. Evaluating the relationship between patient activation and health-related quality of life (HRQOL) in patients with pancreatic cancer (PwPC). Support Care Cancer. 2023;31(3):191. https://doi.org/10.1007/s00520-
A28.Welter S, Keinki C, Ahmadi E, Huebner J. Lay etiology, self-efficacy and patient activation among cancer patients. Cancer Investigation. 2021;39(3):219-28. https://doi.org/10.1080/07357907.2021.1878528
A29.Westman B, Bergkvist K, Karlsson Rosenblad A, Sharp L, Bergenmar M. Patients with low activation level report limited possibilities to participate in cancer care. Health Expectations. 2022;25(3):914-24. https://doi.org/10.1111/hex.13438
A30. Yahaya NA, Abdullah KL, Ramoo V, Zainal NZ, Wong LP, Danaee M. Effects of self-care education intervention program (SCEIP) on activation level, psychological distress, and treatment-related information. Healthcare. 2022;10(8):1572. https://doi.org/10.3390/healthcare10081572