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Open Access

Peer-reviewed

Research Article

Experiences and perceptions of patients with ankylosing spondylitis: A systematic review and meta-synthesis of qualitative studies

  • Yu Li,

    Roles Conceptualization, Data curation, Formal analysis, Methodology, Visualization, Writing – original draft, Writing – review & editing

    Affiliation School of Nursing, Zhejiang Chinese Medical University, Hangzhou, Zhejiang Province, China

    ⨯
  • Dongchi Ma,

    Roles Data curation, Formal analysis, Methodology, Visualization, Writing – review & editing

    Affiliation School of Nursing, Zhejiang Chinese Medical University, Hangzhou, Zhejiang Province, China

    ⨯
  • Lili Yang

    Roles Project administration, Visualization, Writing – review & editing

    yanglili@zcmu.edu.cn

    Affiliation School of Nursing, Zhejiang Chinese Medical University, Hangzhou, Zhejiang Province, China

    ⨯

Abstract

Objectives

The systematic evaluation of relevant qualitative studies on the experiences of patients with ankylosing spondylitis provides a foundation for the clinical development of personalized disease management programs for this patient category.

Methods

Multiple databases, including PubMed, Web of Science, Embase, Cochrane Library, CINAHL, Scopus, CNKI, Wanfang, CBM, and VIP, were searched for qualitative research literature on the experiences of patients with ankylosing spondylitis from the inception of databases to March 2024. Eligible studies were included, and quality was assessed using the quality evaluation standard of qualitative research at the Joanna Briggs Institute (JBI), Australia (2016). The results were integrated using the meta-aggregation approach.

Results

A total of 11 papers were included in the review. Four themes and 10 subthemes were synthesized: (1) difficulties in diagnosis and treatment; (2) effects of disease symptoms; (3) maladjustment of social roles; and (4) lack of support for disease response.

Conclusion

Medical staff should leverage the advantages of the Internet to enhance knowledge and education on ankylosing spondylitis. They should focus on patients’ mental health, assist in active self-management, provide personalized interventions, promote recovery, and improve the quality of life for patients. Additionally, society should offer a diverse range of support.

Citation: Li Y, Ma D, Yang L (2024) Experiences and perceptions of patients with ankylosing spondylitis: A systematic review and meta-synthesis of qualitative studies. PLoS ONE 19(10): e0311798. https://doi.org/10.1371/journal.pone.0311798

Editor: Sham Santhanam, Kauvery Hospital, INDIA

Received: June 19, 2024; Accepted: September 25, 2024; Published: October 17, 2024

Copyright: © 2024 Li et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

Data Availability: All relevant data are within the manuscript and its Supporting information files.

Funding: The author(s) received no specific funding for this work.

Competing interests: The authors have declared that no competing interests exist.

Introduction

Spondyloarthritis (SpA) is a general term for inflammatory immune-mediated diseases, which can be categorized into axial spondyloarthritis (axSpA) and peripheral spondyloarthritis (pSpA) based on their manifestations [1]. AxSpA primarily involves the sacroiliac joints and spine, including non-radiographic axial SpA (nr-axSpA) and ankylosing spondylitis (AS). PSpA is characterized by peripheral arthritis, enthesitis, and dactylitis, and includes psoriatic arthritis, reactive arthritis, and arthritis associated with inflammatory bowel disease (IBD) [2–4].

AS, a type of axSpA, is characterized by significant structural changes in the sacroiliac joints visible on radiographs [5]. The disease is primarily influenced by genetic and environmental factors. Current research indicates that both autoinflammatory and autoimmune factors may play consecutive roles in the pathogenesis of AS, with the concept of an autoimmune response involving specific autoantibodies gaining traction. AS prevalence varies globally, being highest in North America, followed by Europe, Asia, Latin America, and Africa, with a male-to-female ratio of approximately 3:1 [5, 6]. However, recent studies suggest that misdiagnosis of inflammatory back pain, variability in the global distribution of human leukocyte antigen B27 (HLA-B27), and cultural biases contribute to the underdiagnosis of AS in women [7].

AS is characterized by inflammatory damage to the mid-axis skeleton, including the spine, sacroiliac joints, and spinal attachment points, leading to progressive loss of joint function, chronic back pain, spinal dyskinesia, and extra-skeletal organ complications [8, 9]. Patients typically experience low back pain of varying intensity at night and morning stiffness, which usually subsides with activity. Since patients are generally under 45 years of age and in the prime of their careers, chronic low back pain significantly impacts their work and creates a financial burden [10]. One major reason for the extended diagnosis delay (DD) compared to other rheumatic diseases is that the early stages of AS are challenging to detect using X-rays [11, 12]. AS progresses slowly, has a long disease duration, and has a high disability rate.

Through a systematic review of the literature, researchers have determined that TNF inhibitors (TNFi), IL-17 inhibitors (IL-17i), JAK inhibitors (JAKi), and nonsteroidal anti-inflammatory drugs (NSAIDs) are efficacious and safe for treating ankylosing spondylitis. Health education and exercise programs have also proven effective [13, 14]. Additionally, traditional Chinese therapies such as cupping, moxibustion, and turmeric extract have emerged as significant research trends in recent years [15–18]. Despite recent advancements in treatments, there is no cure, requiring patients to manage the disease for many years. This chronic condition often leads to social isolation, increased negativity, and decreased quality of life [19]. Studies have shown that depression and anxiety are the most common psychological characteristics of AS patients [20], and AS may also be associated with the development of schizophrenia (SCZ) and anorexia nervosa (AN) [21].

Focusing on patients’ experiences and perspectives on illness is critically important in modern healthcare [22]. Patients’ experiences and perspectives enable healthcare providers to fully understand the impact of disease on patients’ quality of life, allowing for the development of more personalized treatment plans. Understanding patients’ experiences of illness can help identify deficiencies in the healthcare process, promote improvements and innovations in healthcare services, enhance the overall quality of healthcare, and contribute to the advancement of the medical field [23]. Therefore, emphasizing patients’ experiences and perspectives is not only a sign of respect and care for the patients themselves but also holds significant importance in improving medical outcomes and fostering medical progress [24].

Current research on AS is predominantly quantitative. In recent years, there has been growing interest in the experiences of AS patients in various countries. However, a single qualitative study is often insufficient to provide effective guidance for clinical practice or patient self-management [25]. Consequently, this study employs a pooled and integrated approach to systematically elucidate the inner experiences of AS patients. This approach provides a foundation for clinical staff to develop coping strategies and construct personalized patient care management plans.

Materials and methods

Protocol registration and reporting

The review protocol was registered in the International Prospective Register of Systematic Reviews (PROSPERO) database (CRD42024548012). We adhered to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) [26] guidelines and the Enhancing Transparency in Reporting the Synthesis of Qualitative Research (ENTREQ) [27] statement.

Inclusion criteria

The inclusion criteria for this study followed the PICoS principle. Population: patients diagnosed with AS. Interest of phenomena: the experiences and feelings of AS patients. Context: the environments in which patients were treated, lived, and worked after being diagnosed with AS. Study design: all types of qualitative research, including but not limited to phenomenology, grounded theory, narrative research, ethnography, etc.

Data sources and search strategy

Qualitative research on the experiences and perceptions of AS patients was comprehensively searched in the databases of PubMed, Web of Science, Embase, Cochrane Library, CINAHL, Scopus, CNKI, Wanfang, CBM, and VIP. To ensure the inclusion of all relevant literature, the references of the included articles were also traced. The details of our search strategy are presented in S1 Appendix.

Study selection

Two researchers who had received training in qualitative research and evidence-based nursing courses independently screened the literature, extracted the data, and then cross-checked. If the opinions could not be agreed upon, the third researcher was asked to assist in the determination. Literature screening steps: import the literature into EndNote X9; eliminate duplicate literature; according to the inclusion and exclusion criteria; read the title and abstract; and exclude the literature not related to the topic.

Assessment of methodological quality

Two researchers independently evaluated the quality of the included literature according to the Joanna Briggs Institute Library (JBI) evidence-based health care center qualitative research quality evaluation standard (2016 edition). After completing the evaluation, the results were compared, and a third researcher assisted in resolving any discrepancies. This qualitative assessment consists of 10 items, each evaluated as ’yes,’ ’no,’ or ’unclear.’ The evaluation results are quantified, with ’yes’ scoring 1 point, and ’no’ or ’unclear’ scoring 0 points, resulting in a total possible score of 10 points.

Data extraction

Two researchers independently extracted the information using the JBI general information extraction form. The extraction primarily included the first author’s name, year of publication, country, research method, data collection method, study population, phenomenon of interest, and main findings. In cases of discrepancies, a third researcher made the final decision.

Data synthesis

The data is synthesized through the JBI aggregation method in three steps. In the first phase, all results from the included studies were extracted with descriptions, and the credibility of the results for each study was assessed. In the second phase, categories were developed for the extracted results, with at least two findings per category. In the third phase, these categories were synthesized into a new set of combined results. The use of meta-aggregation allows for a synthesis of the experiences and feelings of people with ankylosing spondylitis, independent of bias, ego, or external factors.

Credibility assessment of integration results

The confidence level of the integration results was evaluated using the ConQual approach [28]. Based on the reliability and confidence assessments, the quality level of the body of evidence was determined, indicating whether the quality was reduced or maintained.

Results

Study selection

As shown in Fig 1, the initial search yielded a total of 624 papers. After eliminating duplicates using EndNote X9, 577 papers remained. From these, 36 papers were initially screened based on titles and abstracts, and 11 papers were retained after full-text reading, re-screening, and quality evaluation. These studies, published between 2008 and 2022, were conducted in seven countries: China, the United States, Iran, Denmark, Turkey, the United Kingdom, and Norway. All studies were qualitative in nature. A total of 160 patients were interviewed, including 103 men and 57 women [29–39]. Study characteristics are reported in Table 1.

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Fig 1. PRISMA flowchart of initial searches and inclusion.

https://doi.org/10.1371/journal.pone.0311798.g001

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Table 1. Study characteristic.

https://doi.org/10.1371/journal.pone.0311798.t001

Methodological quality of studies

The results of the quality appraisal of included studies are presented in Table 2. A total of 11 papers were included, all scoring between 7 and 10. The primary issue was that the studies did not describe the theoretical background of the researchers or elaborate on the interplay between the researchers and the studies.

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Table 2. Results of the critical appraisal of the studies included.

https://doi.org/10.1371/journal.pone.0311798.t002

Confidence in the findings

ConQual was used to assess the confidence of the integration results. Of the four integrated results, one theme was rated as having high confidence, while three themes were rated as having moderate confidence. As shown in Table 3.

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Table 3. ConQual summary of the findings.

https://doi.org/10.1371/journal.pone.0311798.t003

Main findings

In the 11 studies, we extracted a total of 40 findings, classified and grouped them by similar meanings, ultimately forming 10 subthemes and integrating 4 themes. As shown in Table 4.

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Table 4. Detailed thematic synthesis.

https://doi.org/10.1371/journal.pone.0311798.t004

Difficulties in diagnosis and treatment.

Medical experience twists and turns. AS is characterized by an insidious onset, with early symptoms that are not obvious enough for detection. Patients in the early stages often ignore minor symptoms [38]. These insufficiently obvious symptoms can lead to diagnostic difficulties, delays, and even misdiagnosis by doctors [36, 39]. Additionally, patients face multiple referrals, which significantly drain their time and energy [39].

The dilemma of pain medication use. Taking pain medication can reduce pain and help patients maintain a normal life, but the side effects often reduce compliance. Patients need medication to accomplish work tasks and improve sleep quality in their daily lives [32, 37]. However, the side effects of the medication are a cause for concern [31]. Moreover, online information about medication use is inconsistent, making it difficult for patients to recognize their effectiveness [39].

Effects of disease symptoms.

The diagnosis of the disease resulted in a negative emotional state. Patients typically experience numerous negative emotions after being diagnosed with the disease, including confusion, fear, pessimism, helplessness, frustration, and even depression. Some patients experience confusion about their future, facing difficulties in finding a partner and securing employment, and feeling reluctant to remain dependent on their parents. Upon learning that the disease is hereditary, they become concerned about its impact on the next generation [39]. Some patients become emotionally unstable, start to become irritable, and some even reach moderately severe depression [29, 36].

Pain brings challenges to daily life. The disease significantly limits patients’ daily life and work due to chronic pain. During painful episodes, patients may be unable to use the toilet independently or walk normally [29, 35]. Prolonged pain reduces sleep quality, lowers tolerance, and affects sexual life [29, 31, 37]. Some patients even lose their jobs due to the pain [36].

Fatigue affects the quality of life. Fatigue caused by the disease can lead to physical discomfort and affect the quality of life. The fatigue that accompanies the disease is usually chronic, and this fatigue can lead to discomfort in certain organs of the patient’s body [30, 31]. Fatigue can also have some other effects, such as a lack of energy, decreased self-image management ability, memory loss, etc. [32, 35].

Maladjustment of social roles.

Weakened family functioning. In the family system, the original roles and functions of family members are affected by the limitations of the disease. Male patients often struggle to accept unemployment, influenced by the education they received in childhood [33]. Unmarried female patients plan to expedite marriage and childbearing [29]. Married women who have given birth are no longer interested in having more children [29]. The hereditary nature of the disease affects couples’ willingness to have children [38].

Career planning was disrupted. The physical limitations imposed by the disease often disrupt patients’ original career plans and reduce their occupational choices. Some patients are unable to continue their previous work [38]. Due to a lack of physical endurance, some patients cannot handle long working hours or participate in full-time employment [35, 36].

There is social isolation. The emergence of social isolation in patients is both passive and active. Patients actively avoid socializing with friends due to physical sensitivity and a desire to avoid contact with the outside world [29, 37]. When friends do not understand the disease, patients may be excluded from group activities [38]. In severe cases, the patient’s original social connections may be severed [29, 35].

Lack of support for disease response.

Lack of emotional support. When it comes to emotional support, patients typically receive insufficient assistance from various sources. For example, they experience a lack of understanding from colleagues, trust from parents, tolerance from friends, and support from partners [33, 36, 39].

Lack of social support. Patients face challenges such as employment and treatment without adequate social support to find solutions. When seeking help at an employment center, they often have to expend considerable effort explaining their situation to the staff [34]. Although hydrotherapy has a significant curative effect, its cost is high [31]. Additionally, some patients feel that mutual aid associations provide limited assistance [33].

Discussion

In this study, it is evident that both healthcare professionals and the public have an insufficient understanding of AS. A lack of awareness among healthcare professionals hinders accurate disease diagnosis and may compromise the effectiveness of subsequent treatment [11]. Similarly, the public’s unfamiliarity with AS can lead to misconceptions about patients, which negatively impacts patient responses to the disease and undermines social harmony. Therefore, it is important to enhance knowledge of the disease. Healthcare professionals can establish a dedicated group focused on AS health literacy to promote the concept that ’everyone is the first person responsible for their own health.’ This initiative can leverage the internet along with print, screen, and mobile media to provide the public with information through texts, posters, and videos, thus enhancing the impact of disease education [40, 41]. Additionally, it is crucial to address the health knowledge needs of remote areas by using traditional methods such as newspapers, publications, and books, and by actively organizing activities such as health clinics and health science education in villages. These efforts will enable more people to obtain, understand, and use information to maintain their health, thereby raising the overall health literacy of the population.

Psychological instability is a common problem in patients with AS, and interventions for psychiatric symptoms should be considered in treatment [42]. Healthcare professionals should provide timely dyadic coping interventions for diagnosed patients with partners to improve patients’ psychological capital and reduce communication problems within the couple [43]. It is important to explain to patients and their families the significance of mental health in alleviating disease symptoms. They should be informed that persistent sadness, irritability, loss of interest in activities, sleep disorders, etc., require evaluation by a psychiatrist and active intervention for psychological issues [44]. Both AS and depression can manifest with pain and fatigue, making it crucial to identify depression through other symptoms to prevent missing the intervention period. Moreover, peer support programs can be beneficial during the early stages of coping following diagnosis, aiding patients in better adjusting to life with the disease [45]. Healthcare professionals can use social media to establish online communication platforms to help alleviate patient anxiety. The mHealth management platform should be introduced to AS patients who seek hospital consultations [46, 47]. Health education should also be provided to patients with limited knowledge of Chinese medicine techniques, informing them about therapies that effectively alleviate symptoms, such as Taiji spine-strengthening exercises and Eight-Duan Brocade [48]. Patients severely affected by their illnesses during the working day should be instructed in joint home-workplace exercise methods to enhance physical functioning and reduce work-related disabilities [49]. For patients unaccustomed to exercising, it is recommended to use wearable technology to assist in combining home exercises to improve symptoms of discomfort [50]. Patients should also be instructed in alternative therapies, such as aromatherapy, music therapy and cognitive-behavioral therapy, to relieve pain, reduce negative emotions, and improve quality of life [51, 52].

Disease-induced impairment of physical activity can lead to unemployment and increased financial stress [53]. The community can provide employment protection for patients with similar chronic diseases by clarifying their working abilities and offering suitable positions. The ’five-society linkage model’—consisting of the community, medical social workers, community volunteers, community social organizations, and community charitable resources—can be applied to provide health follow-ups [54], establish rehabilitation clubs, and create communication platforms for patients and their families. This ensures continuous support and attention from social organizations. To address the public’s lack of understanding of AS, which hinders patient rehabilitation, the community should fully utilize the linkage model of the five societies to play a pivotal role. First, community managers should conduct periodic disease education programs for residents to enhance health literacy and increase public understanding and acceptance of patients. Second, community volunteers should be encouraged to offer services such as daily care and rehabilitation support. When necessary, patients’ financial burdens can be alleviated through public welfare projects, fundraising, and other initiatives. Additionally, medical staff can develop online remote or group personalized intervention programs to expand the coverage of patients who can receive intervention [31].

A summary of potential solutions to the current problems identified in this study is shown in Table 5.

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Table 5. Potential solutions to the current problems.

https://doi.org/10.1371/journal.pone.0311798.t005

Strengths and limitations

This study systematically integrates research on the experiences of people with AS at home, in daily life, and at work. Integrating the patient’s experiences and perspectives enables healthcare professionals to comprehend the patient’s challenges, thereby forming the foundation for developing an individualized intervention plan.

However, this study has some limitations: it lacks a specific analysis of heterogeneity from the perspective of local culture, such as religious beliefs, economic development, and medical care levels. Future research should conduct more in-depth analyses from these perspectives to provide clinical staff with a more comprehensive and reliable basis for managing patients with ankylosing spondylitis.

Implications and conclusion

AS, a chronic inflammatory autoimmune disease, is difficult to diagnose, which affects the optimal time for treatment. The chronic pain and fatigue caused by AS limit patients’ physical, psychological, and social functioning, increase their economic burden, reduce their quality of life, and negatively impact their families and society. Healthcare professionals should leverage the Internet to enhance public awareness and inclusion of AS, prioritize the mental well-being of diagnosed patients, support active self-management, deliver personalized interventions, and promote rehabilitation and overall quality of life improvement. The community should leverage its strengths to effectively disseminate knowledge about diseases and create an optimal environment for patient rehabilitation.

Supporting information

S1 Appendix. Search strategy.

https://doi.org/10.1371/journal.pone.0311798.s001

(DOCX)

S2 Appendix. PRISMA checklist.

https://doi.org/10.1371/journal.pone.0311798.s002

(DOCX)

S1 Table. All studies identified in the literature search.

https://doi.org/10.1371/journal.pone.0311798.s003

(DOCX)

S2 Table. All data extracted from the primary research.

https://doi.org/10.1371/journal.pone.0311798.s004

(DOCX)

Acknowledgments

We would like to thank Prof. Yunxian Zhou, School of Nursing, Zhejiang University of Traditional Chinese Medicine, for her advice on qualitative research methodology.

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