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Coping with chronic periprosthetic joint infection after failed revision of total knee and hip arthroplasty: a qualitative study on patient’s experiences in treatment and healing

  • Vincent Tilo Krenn ,

    Roles Conceptualization, Data curation, Formal analysis, Investigation, Methodology, Project administration, Validation, Writing – original draft, Writing – review & editing

    vincent.krenn@charite.de

    Affiliations Center for Musculoskeletal Surgery, Charité-Universitätsmedizin Berlin, Corporate Member of Freie Universität Berlin, Humboldt-Universität zu Berlin, and Berlin Institute of Health, Berlin, Germany, Empowerment Research Institute GmbH, Magdeburg, Germany

  • Maria Sarah Bönigk,

    Roles Formal analysis, Methodology, Validation, Writing – original draft, Writing – review & editing

    Affiliation Center for Musculoskeletal Surgery, Charité-Universitätsmedizin Berlin, Corporate Member of Freie Universität Berlin, Humboldt-Universität zu Berlin, and Berlin Institute of Health, Berlin, Germany

  • Andrej Trampuz,

    Roles Conceptualization, Project administration, Writing – original draft, Writing – review & editing

    Affiliation Center for Musculoskeletal Surgery, Charité-Universitätsmedizin Berlin, Corporate Member of Freie Universität Berlin, Humboldt-Universität zu Berlin, and Berlin Institute of Health, Berlin, Germany

  • Martin Liebisch,

    Roles Formal analysis, Validation, Writing – original draft, Writing – review & editing

    Affiliation Faculty of Psychology, Sigmund Freud University, Vienna, Austria

  • Carsten Perka,

    Roles Conceptualization, Project administration, Writing – original draft, Writing – review & editing

    Affiliation Center for Musculoskeletal Surgery, Charité-Universitätsmedizin Berlin, Corporate Member of Freie Universität Berlin, Humboldt-Universität zu Berlin, and Berlin Institute of Health, Berlin, Germany

  • Sebastian Meller

    Roles Conceptualization, Project administration, Writing – original draft, Writing – review & editing

    Affiliation Center for Musculoskeletal Surgery, Charité-Universitätsmedizin Berlin, Corporate Member of Freie Universität Berlin, Humboldt-Universität zu Berlin, and Berlin Institute of Health, Berlin, Germany

Abstract

Periprosthetic joint infections (PJI), along with the extensive medical and surgical interventions required for treatment, impose a substantial psychological burden on patients. Given the need for patients to adapt to long-term physical limitations and ongoing medical challenges, this qualitative study aims to explore the nature of psychological coping amongst patients with chronic cases of PJI. A total of 18 patients (8 men and 10 women, aged 55 to 92) who underwent a total knee or hip arthroplasty revision due to chronic PJI were recruited at a single academic institution between August 2022 and July 2023. Semi-structured interviews were conducted at two timepoints and analyzed using thematic analysis. We identified the nature of coping with PJI as patients’ process-orientation towards healing. This encapsulates constant adaptation to challenges and losses in day-to-day life, managing expectations and proactively developing a sense of self-efficacy during treatment and healing. Patients expressed uncertainty and unpredictability to treatment trajectories and getting a feeling of being stuck, where health and well-being oscillates between progression and regression. These experiences contributed to unstable relationships with healthcare practitioners which were influenced by loss of trust and perceived treatment failures. A holistic view on patients, taking them seriously in their concerns and providing clear information were identified as crucial factors in shaping a positive patient-physician relationship. Acknowledging the fluctuating nature of chronic PJI treatment, physicians should adopt a process-oriented approach that promotes step-by-step healing while maintaining a positive patient-physician relationship. Recognizing the profound psychological impact, we propose the establishment of a new subdiscipline, namely ‘Psycho-Endoprosthetics’, to facilitate interdisciplinary collaborations for research and practice in septic surgery.

Introduction

Total joint arthroplasties (TJA) of the hip and knee have markedly improved quality of life for millions by alleviating pain, restoring physical function and autonomy. In Germany, approximately 230,000 hip and 170,000 knee TJAs were performed in 2016, with an expected increase of 23% for hip and 45% for knee replacements by 2040 [1]. In the United States, projections anticipate an increase of 284% in hip and 401% in knee TJAs [2]. Despite the success of these procedures, periprosthetic joint infections (PJI) remain a rare but severe complication, often resulting in the removal of the implant, persistent pain, immobility, prolonged hospital stays, and the need for intensive antibiotic treatments with substantial side effects [3]. The incidence of PJI ranges from 0.5% to 2.6% for primary TJAs, presenting a lifelong risk of hematogenous infection at 0.07% per prosthesis per year, and is responsible for 15% to 25% of all revision surgeries [4]. While diagnostic and treatment strategies for PJI have advanced considerably [5], the post-treatment patient outcomes remain uncertain, especially due to the unclear length of recovery and the variability in regaining post-operative quality of life. Therefore, patients not only grapple with physical limitations but also endure significant psychological challenges [3,68] and sometimes face permanent disabilities [6,7]. Despite interdisciplinary advances in the clinical care of PJI, the psychosocial impact of PJI, particularly in chronic cases, is often underemphasized by treating physicians and remains not fully understood. Research has primarily focused on the immediate medical responses and short-term recovery processes of patients who have undergone one- or two stage revision surgery [8,9], largely overlooking the long-term psychological adjustments patients must make in order to integrate physical, mental and social consequences of chronic PJI into their lives —a highly individual process that can span over years and may be prolonged due to reinfection. Further studies on the burden of PJI have examined the implications for mental health, assessing outcome measures like depression, anxiety, and overall psychological distress [3,6]. However, there remains a significant gap in understanding the coping strategies that patients develop to manage the ongoing challenges posed by chronic PJI. This study addresses this gap by exploring the coping mechanisms that patients with chronic PJI employ to navigate their daily lives and manage the extensive repercussions of their condition. By deploying a qualitative approach, this research aims to deepen our understanding of the nuanced ways in which patients adapt to the complexities of living with a chronic PJI. Insights gleaned from this study are expected to inform better clinical practices and improve support systems, ultimately enhancing the well-being and quality of life for patients suffering from this debilitating condition. The overarching research question is stated as: What is the nature of coping with chronic PJI within the context of treatment and healing?

Materials and methods

Following ethics board approval (EA4/040/14), we conducted a qualitative interview study including 18 patients who underwent revision surgery after the diagnosis of PJI at our specialized department. Data acquisition was performed once a week in a private treatment room at our specialized department in a single academic institution between August 2022 and October 2023. Patients were included consecutively after they provided informed consent to share their treatment and healing experiences with PJI.

Each participant was diagnosed by our infectious team, which applied the modified EBJIS criteria for diagnosing PJI [10]. PJIs were classified into high-grade and low-grade categories based on the virulence of the primary pathogen isolated. PJIs were categorized as polymicrobial if multiple pathogens were isolated from tissue cultures. Our protocol for microbiological culture involved obtaining five separate tissue samples from the deep surgical site and culturing the supernatant after sonication of the infected implants. An additional tissue sample from the affected peri-implant site was sent for histopathological examination, which was analyzed to verify and further assess the stratification into low- and high-virulence microbial pathogens [11,12].

First-stage procedure entailed thorough debridement and implant removal. Afterwards, all patients received targeted (pathogen-specific) antibiotic therapy averaging a period of six weeks, initially intravenous in the hospital, followed by oral after discharge. The determined interval before re-implantation was based on various factors such as the physical examination, overall infectious history, condition of the wound as well as laboratory and histopathological findings. Additional debridements carried out during this period were accordingly documented. During second-stage surgery, antibiotic treatment was tailored to the identified microbial pathogens [11]. Diagnosis and management of reinfections followed the above mentioned criteria [10], and were further aligned with the Delphi consensus criteria for PJI treatment failure [12].

Inclusion criteria encompassed patients with chronic PJIs following initial total knee or hip arthroplasty that were unsuccessfully treated beforehand with either one- or two stage revision surgery. Additionally, patients who had previously undergone one- or two-stage revision surgeries for septic or aseptic causes at external facilities, were also included. Exclusion criteria were termed as: (1) acute PJIs with early postoperative onset, (2) patients who underwent part of their two-stage revision at an extern institution, (3) patients who either died or explicitly pulled out of the study, (4) patients with a critical health status that were either physically or mentally not able to participate, (5) patients under 18 years of age, (6) patients that were unable to provide informed consent.

Semi-structured interviews were conducted with a flexible approach to the interview guide (see S1 File), providing an overarching framework for predefined topics while allowing patients to address subjects personally significant to them. To do justice to the diverse treatment experiences patients with PJI had, the first interview guide focused on questions concerning how to overcome challenges, what support was needed and what expectations they had throughout the treatment journey. Since patients were at differing stages of treatment at the time point of the interview, the questions concerning challenges, support and expectations addressed their current state, past situations, and potential future trajectories. The follow-up interview centered around changes that occurred in the meantime, how they were dealt with and how patients see themselves moving onward despite the restrictions. All interviews were conducted by researcher VK either on the spot after recruitment or later at the ward, at the patients’ homes or via telephone. Verbal and written informed consent were obtained in person from each patient at the outpatient clinic before the interview and refers to the conduction, audio-recording, transcription of the interview and publication of interview extracts in an anonymized manner. Each patient had the opportunity to ask research project specific questions before and after the interview. Patients were informed that they could stop the interview at any time without any repercussions or the need to provide an explanation. If patients showed signs of substantial emotional distress or seemed overwhelmed during the interview, the interviewer offered breaks or, with the patient’s consent, ended the interview early with an opportunity to reschedule. After the interview, patients were asked if they would be interested in a follow-up interview six months later. Patients received a list of local support resources including counseling services and crisis hotlines and were assured that these resources were available should they need additional support after the interview. They were also encouraged to reach out to the research team with any further questions.

A total of 18 participants (see Table 1) were initially interviewed, among whom 15 were interviewed at the follow-up six months after the initial interview (3 in person and 12 via telephone). The final sample size was determined once thematic saturation was reached within analysis. This guarantees the robustness of the findings and maximizes the data’s potential for achieving the research aim [13]. Drop-outs in the follow-up were caused in one case due to the worsening of the overall status and in two other cases due to the impossibility of reaching the participants. The whole research team deemed the six-month follow-up interval as an optimal opportunity to account for potential changes in participants’ circumstances that allowed to further examine development of coping strategies. By conducting two interviews, we intended to capture patients’ reflections on the healing and treatment journey by providing an opportunity to refer to an oversee able period of time. Additionally, interviews at two timepoints enabled patients to clarify and expand on their earlier responses, ensuring the data accurately captured their experiences. This also gave patients an opportunity to introduce new topics or share experiences they might have missed or felt unsure about discussing during the initial interview. Through this approach, we gained a longitudinal perspective on patients’ experiences that allowed us to track changes and understand evolving patterns over time. Exploring topics more deeply in this way can lead to the discovery of more detailed and complex insights since in qualitative research the experiential narrative and thus the analytical basis is created in the dialogue between interviewer and interviewee. After audio-recording the interviews were pseudonymized, transcribed with the software f4transkript, anonymized and imported in the software for qualitative data-management namely MAXQDA, which was used for the coding procedure. Data collection and analysis were conducted simultaneously and in a circulative manner.

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Table 1. Demographic data and characteristics of medical history.

https://doi.org/10.1371/journal.pone.0319509.t001

The methodology of thematic analysis (TA) provides the opportunity for a relativistic inductively oriented analysis. Grounded in an experiential framework we focused on amplifying the voices of lived experiences. TA captures both semantic and latent meanings and offers a comprehensive approach that includes descriptive and interpretative accounts of the data [14,15]. A six phase TA was undertaken to explore patterns of shared meaning across data. The six phases were applied in a distinct yet recursive manner [14]. The first step of TA involved familiarization with the data by thoroughly reading and re-reading the interviews by researchers VK, ML and MB. In the second step, we performed an inductive, data-driven coding process by assigning codes to one or two-sentence segments from the transcripts, reflecting an exploratory approach. Throughout this process, inductive codes were continually developed until all expressions related to the lived experiences of patients with PJI were identified and labeled. VK, ML, and MB independently coded 20% of the interviews. The codes were then reviewed, compared, and discussed by the team until a consensus was reached. Subsequently, VK and ML coded the remaining 80% of the interviews separately, followed by another round of review, comparison, and discussion to reach agreement. The codes were then printed and preliminarily grouped. In the third phase, all codes were categorized by VK and MB into initial themes that encapsulated the phenomena under investigation. These themes captured significant aspects of the data by portraying patterns of shared meaning embedded within the dataset [14,15]. Phase four involved reviewing and refining the themes, which were performed by VK and MB. By revisiting the themes in relation to the context of the coded sentences provided by the transcripts, an initial thematic map (see S2 Fig) was developed, visually representing the identified themes and their interrelationships. The interview transcripts and coded segments were re-examined to ensure coherence, leading to iterative adaptations of the thematic map. After capturing all phenomena associated with chronic PJI, the focus was narrowed according to the research question. Themes were reassembled and refined within the thematic map, with repeated reviews of the interview transcripts and coded segments to ensure coherence and contextual accuracy. Afterwards, final themes and subthemes were defined and named. Subthemes were identified as key concepts within their respective overarching theme. The refinement of initial themes into final themes was based on several criteria: reflection of shared patterns across the dataset, illumination of the research topic and its contextualization, non-redundancy, sufficient meaningful data to support the theme, presence of a central organizing concept, clear boundaries of the theme (for inclusion and exclusion), coherence of the theme (avoiding overly broad themes). The importance of a theme was determined not only by its prevalence but also by its salience and significance in addressing the research question. The final themes generated in this process represent the outcome of the analysis (see Fig 1). Phase five was undertaken by researchers VK and MB and focused on the refinement, renaming, and redefinition of the final themes to enhance their clarity and informative value. Lastly, phase six encompassed the writing process, which integrated the final themes into a coherent overall narrative and connected our findings to the existing literature [14]. Subsequently, lively and convincing segments from the transcripts were extracted for each theme and subtheme.

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Fig 1. Final thematic map illustrating the two main themes along with their subordinate subthemes.

https://doi.org/10.1371/journal.pone.0319509.g001

Results

Through a detailed examination of the data, we identified key areas of analytical interest. We started by constructing a thematic map that captured all relevant aspects in the broader context of individuals’ lived experiences with PJI. Focusing specifically on our research question, we analyzed how patients developed coping mechanisms to navigate challenges in day-to-day life. To contextualize these developmental processes of coping, our attention was directed towards aspects that shape the treatment experiences of PJI patients. Upon reviewing the codes, coded data segments, and the entire dataset, we shifted our attention towards the latent meanings of the expressions related to the themes. We identified a logic pattern pertaining the nature of coping mechanisms that seemed to encapsulate distinctive notions associated with managing the illness. Consequently, we formulated an analytical framework centered around two main themes: (1) process-orientation as the nature of coping with PJI, (2) the impact of fluctuating treatment circumstances and trajectories during the treatment process and respectively three subthemes within each theme (see Fig 1).

Theme 1: Process-orientation as the nature of coping with PJI

Across our data, a process-orientated approach was crucial for patients in developing effective coping strategies to address the challenges and burdens associated with PJI. This approach reflects how the patients view both treatment and healing as an ongoing, iterative process. We identified three key elements that collectively form this process-oriented mindset: (1) Adaptation to daily challenges and losses, (2) Active expectation management, (3) Self-efficacy as a key resource for navigating treatment and healing.

1) Adaptation to daily challenges and losses.

Patients often emphasized the profound impact of PJI on various aspects of their personal lives, leading to substantial losses. These challenges included difficulties in maintaining social connections, shaping relationships, pursuing hobbies, adhering to daily routines, finding living arrangements and maintaining mobility in public (see Table 2 for illustrative quotations). These difficulties contributed to a profound sense of disconnection from ‘normal’ life.

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Table 2. Disconnection from ‘normal’ life.

https://doi.org/10.1371/journal.pone.0319509.t002

Patients across the data developed individual coping strategies to manage existential losses and adapt to changing circumstances in daily life, as presented in Table 2. Especially when confronted with the possibility of permanent disability, an active approach to restoring functionality, self-esteem and a sense of control proved crucial for initiating positive changes (see Table 3 for quotations).

2) Active expectation management.

Patients frequently expressed the importance of a step-by-step approach to support a holistic healing process. For example, Tina (see Table 4) highlights the value of setting realistic and practical subgoals to effectively manage expectations to navigate healing and restore well-being.

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Table 4. Acceptance of restrictions make space for new adjustments.

https://doi.org/10.1371/journal.pone.0319509.t004

The quotations in Table 4 underscore the crucial role of managing expectations in the personal healing process. Through expectation management, patients develop a sense of acceptance for the current, altered status. Tina, Lars, Mona and Frida (see Table 4) illustrate a focus on resources rather than deficits. These patients shift their focus from the overarching goal of regaining pre-infection physical functioning to preserving specific, personally significant or self-defining aspects in day-to-day life that matter most to them right now (see excerpts in Table 5).

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Table 5. Redirecting focus from medical to personal goals.

https://doi.org/10.1371/journal.pone.0319509.t005

3) Self-efficacy as a key resource for navigating treatment and healing.

Across the data, patients develop a sense of control during their treatment and healing process, which is closely linked to perceptions of self-efficacy —the belief in their ability to successfully execute actions necessary to overcome challenges. Patients frequently described scenarios in which they assertively addressed challenges by actively taking charge of their situation. These actions often directly influenced both the treatment process and its outcomes. In doing so, these individuals proactively took steps towards maintaining and promoting their self-efficacy. Conversely, self-efficacy can empower patients to engage in active behaviors they believe will positively affect their situation. Therefore, we view self-efficacy as a foundational element for proactive patient participation in treatment. This is illustrated by individual quotations in Table 6, which highlight this process-oriented perspective and active role in their personal treatment and healing processes.

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Table 6. Proactively restoring control and regaining self-efficacy.

https://doi.org/10.1371/journal.pone.0319509.t006

The expressions of Georg, Irene, and Ute demonstrate a strong sense of self-awareness, emphasizing the importance of engaging in self-reflection during treatment. This process is crucial for recognizing personal strengths, resources, and motivators, which in turn actively enhance well-being. They engaged in anticipating individual stressors and finding ways to manage them effectively. Additionally, another source of self-efficacy and even optimism in challenging situations can be traced to the patient’s past. Since many patients frequently derive a sense of self-efficacy from previous adverse life events or challenges they successfully navigated before the onset of PJI. These past experiences serve as the basis for resiliency when faced with challenges accompanied by PJI. Consider the following extracts in Table 7:

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Table 7. Mobilizing strength from critical past experiences.

https://doi.org/10.1371/journal.pone.0319509.t007

Theme 2: Fluctuating treatment circumstances and trajectories.

Across our data, we identified a shared pattern related to the fluctuating treatment circumstances and trajectories associated with PJI. These fluctuations highlight the complex and often unpredictable nature of the disease, which significantly impacts overall disease management. To better contextualize the developmental process of coping with PJI challenges, we focused on three facets of the treatment experience that are particularly relevant for PJI patients: (1) uncertainty and unpredictability, (2) the ‘In-Between State’, and (3) an unstable patient-physician relationship during treatment.

1) Uncertainty and unpredictability.

Patients often highlighted the notion of unpredictability during the treatment process, laced with uncertainty and frequent changes in recommendations for medical interventions and professional opinions. These aspects of PJI treatment exemplify how coping skills are actively developed in response, and as a protection against, the often occurring fluctuations throughout treatment and healing. Consider the following excerpts in Table 8:

Mona characterized her treatment as a trial-and-error process and expressed frustration with the fundamental lack of clear information. After receiving inconsistent recommendations from various physicians, she ultimately chose to reject further surgeries and take charge of her own treatment decisions. Similarly, Edgar described the decision-making aspect within treatment as a highly individual process influenced by a variety of factors, emphasizing the inner struggle patients may experience when deciding whether to undergo surgery. Patients frequently encounter these bifurcations along their treatment journey, necessitating decision-making that surpasses their own experiences, skills, and knowledge as laypersons. This often reinforces their sense of dependency on medical professionals in a field where treatment options and decisions can be multidirectional and unclear.

2) ‘In-Between State’.

Patients frequently describe feeling stagnation or being stuck in their treatment journey, experiencing what we characterize as an ‘In-Between State’, which we describe as a continuous back-and-forth movement of their perceived health status. This state results in a sensation of ‘hanging in there’ or ‘holding on to it’, where moments of perceived progress are frequently followed by regression, and vice versa. In daily life, this ebb and flow leads to emotional fluctuations, wavering between optimism or hope, and resignation or despair. Thus, patients also oscillate between accepting and denying their current status, ultimately exemplifying the internal struggle of living with chronic PJI. Consider Table 9 for illustrative excerpts:

3) Unstable patient-physician relationships.

Many patients reported experiencing ineffective or even incorrect treatments, which severely undermined their trust in healthcare providers and their sense of being in ‘good hands’ (see Table 10). This rupture of trust not only undermines patients confidence in medical care but also impacts their decision-making regarding treatment, which in turn can ultimately influence treatment outcomes after PJI.

Throughout our data analysis, we found that patients often reported periods of losing trust in their physicians, followed by moments of rebuilding that trust later in their treatment journey. Trust emerged as a central component of the patient-physician relationship, particularly in the long and intricate healing and treatment processes associated with PJI, where both patients and physicians can be faced with challenging treatment trajectories. The complexity and extended duration of these treatment journeys can increase the risk for disruptions in the patient-physician relationship, making it essential to actively work on rebuilding trust later as treatment progresses. Consider Table 11 for illustrative quotations:

Throughout the data, patients frequently shared feelings of not being taken seriously by healthcare providers and not being adequately informed about the next steps in their treatment. Some expressed concerns that they were viewed merely as an “interesting” case or condition, rather than being seen as whole individuals with the full range of experiences and suffering related to the disease. Consider Table 12 for excerpts:

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Table 12. Patient-physician relationship shaping factors.

https://doi.org/10.1371/journal.pone.0319509.t012

Taken together, these excerpts encapsulate the central aspects of the patient-physician relationship that are particularly distinctive in the treatment journey of PJI patients. These factors include the dynamics of trust, characterized by its loss, perceived treatment failures, and eventual restoration of trust as treatment progresses. Conversely, adopting a holistic approach —acknowledging patient concerns and providing detailed information— can be crucial in fostering a positive patient-physician relationship.

Discussion

Our qualitative interview study explored the multifaceted nature of coping with chronic PJI within the context of treatment and healing. We found that patients develop a process-oriented mindset, which plays a central role in managing both the physical and emotional burdens of the disease. This approach involves a continuous adaptation to daily challenges and losses, active expectation management by shifting the focus from medical to personal goals, and the development of self-efficacy —a self-directed process through which patients take control of their treatment and healing journey. These coping strategies are shaped by the fluctuating nature of treatment circumstances and trajectories that these patients face. This encompasses navigating the uncertainty and unpredictability of their illness, dealing with the strain of unstable patient-physician relationships, and enduring what we have termed an ‘In-Between State’, where patients oscillate between hope and despair, progression and regression of their perceived health status. These challenges create a complex environment for PJI patients, necessitating the development of coping strategies that reflect the personal resilience required to manage chronic PJI.

Drawing a bigger picture: contextualizing process-orientation and fluctuating treatment circumstances

Process-orientation refers to continuous adaptation to daily challenges arising from physical constraints and losses of routines, relationships, activities, living arrangements and participation in public life. Patients perceived these challenging circumstances as a disconnection from ‘normal’ life, leaving them uncertain about whether they could ever regain their pre-infection lifestyle. When faced with potential long-term disability, preserving self-esteem and functionality becomes crucial for adapting to PJI. This can involve finding ways to navigate day-to-day life, such as managing household tasks with walking aids or participating in leisure activities despite mobility restrictions or pain. Small changes in routines —like memorizing tripping hazards at home or accepting help from others— can have a significant impact for patients’ well-being.

A second facet of process-orientation is characterized by active expectation management, where patients redirect their focus from medical to personal goals. This approach reflects a deliberate shift away from the hope of a complete cure, instead placing emphasis on living a fulfilled present life by reintegrating personally meaningful and self-defining aspects that were overshadowed by the PJI (e.g., conducting a choir from a wheelchair or preserving a small involvement in family gardening projects). Patients thereby develop a sense of acceptance for current restrictions, creating space for further adjustments while recognizing and leveraging personal resources rather than focusing on deficits, regardless of their severity.

Lastly, the third aspect of process-orientation centers around self-efficacy as a key resource for navigating the treatment and healing process in a self-determined manner. Patients foster this by proactively regaining control over their personal and medical decisions. They often addressed challenging situations during treatment by actively taking charge, whether by demanding information or changing physicians after ineffective treatment, thereby directly influencing their outcomes. In doing so, they not only develop but also preserve a significant sense of self-efficacy. Furthermore, patients managed to mobilize strengths from critical past experiences, that had been successfully overcome, and therefore took on an active role in their current treatment and healing journey.

These coping processes are deeply influenced by the unique treatment context of PJI. Along this journey, patients frequently face complex decisions, such as deciding in favor or against another revision surgery, that exceed their knowledge and experience as laypersons. In a field where the outcome of treatment decisions is often unclear and recommendations vary among healthcare practitioners, patients experience a profound sense of unpredictability and uncertainty regarding their care. This uncertainty leads patients to oscillate between phases of perceived progress and regression, creating what we term an ‘In-Between State’—a condition that is characterized by fluctuation feelings and swinging between optimism and resignation.

Patients also reported instances of ineffective or incorrect treatment, which further undermined their trust in healthcare providers and disrupted the patient-physician relationship. Trust eroded further when patients felt that their symptoms were dismissed or when they lacked clear information concerning their future prospects. Conversely, patients with PJI benefit from a holistic, patient-centered approach where transparency and empathy are prioritized. This fosters the rebuilding and maintenance of trust, which is central to a positive patient-physician relationship [16,17].

Our study reveals a novel perspective on the fluctuating trust between patients with PJI and their physicians, highlighting the instability of patient-physician relationships throughout the treatment process. This finding is particularly relevant in the context of evolving health care systems in developed countries, where patients are increasingly viewed as autonomous actors. In such systems, treatments are no longer perceived as a one-size-fits-all solution, but rather as individualized journeys, significantly influenced by the quality of the patient-physician relationship [16]. Trust plays a pivotal role in patient decision-making, especially when facing complex decisions such as whether to proceed with additional operations. This process is heavily influenced by patients’ trust in the effectiveness of treatment and confidence in the healthcare providers [1719]. The frequent experiences of ineffective treatments among our cohort underscore the critical and fragile nature of trust, as its loss and subsequent efforts to regain it become central to the PJI treatment experiences. This aligns with existing knowledge, which emphasizes the significant impact of trust on the health of chronic patients, noting that these communication-based effects are not facilitated by a single clinician-patient encounter but rather reflect cumulative experiences over time [20].

Our findings also underscore the importance of a process-oriented mindset in managing PJI, as proposed by existing coping theories [21] that emphasize the importance of assessing one’s own resources adequately and adapting actively when coping with chronic illnesses [22, 23]. Thus, a process-oriented approach shifts the focus from the often unpredictable long-term goal of complete recovery to more immediate, manageable objectives that patients can influence directly. This differs significantly from the traditional outcome-focused model prevalent in somatic medicine, where success is measured by the resolution of symptoms or reaching pre-illness functioning. Instead, our study highlights how a process-oriented approach can mitigate feelings of powerlessness, since regaining pre-infectious outcomes is not always possible [9]. By promoting a more active, self-efficacious stance among patients, this approach enhances their immediate quality of life.

Implications for research and practice

To enhance the integration of our findings into clinical practice, healthcare providers should consider conveying a process-oriented perspective on healing that emphasizes ongoing adaptation and active patient involvement. Encouraging patients to set personal, manageable goals and supporting them in regaining a sense of control can improve their overall engagement in treatment and healing. Additionally, fostering transparent communication and trust between patients and physicians is crucial, particularly in managing expectations and addressing the fluctuating nature of PJI recovery. Transparent communication plays a pivotal role in building this trust and ensuring that care is truly patient-centered [20,21]. Implementing these strategies could significantly enhance patient care by aligning treatment with patients’ physical and psychological needs, ultimately leading to better health outcomes [18].

The psychological impact of PJI has been linked to the experiences of oncology patients, as highlighted by Knebel and colleagues [3]. Since the 1970s, Psycho-Oncology has become a firmly integrated part of oncological care, providing support to patients, survivors and relatives through networks like the International Psycho-Oncology Society [24]. Considering the conclusive research on the mental burden of PJI [3,68] and the void of strategies for addressing it —an issue that extends to infectious musculoskeletal diseases in general [7]— we propose the establishment of a new subdiscipline within endoprosthetics: ‘Psycho-Endoprosthetics’. A structured approach would pave the road for the creation of national and international networks focused on research and practice, laying the groundwork for essential systematic studies and the integration of tailored psychosocial support for PJI patients.

Limitations

While our study offers valuable insights, several limitations must be considered. Conducted within a single center, the findings may have limited transferability to other clinical settings. Furthermore, the context in which the interviews were conducted —within the same department responsible for patients’ treatment— may have introduced a tendency towards social desirability bias, with patients potentially framing their responses to be favorable to their caregivers. In qualitative research, contextualization is crucial, and results are deeply intertwined with specific environments, which limits broad generalization. Nevertheless, the study achieved thematic saturation, and the rigorous application of triple and double coding procedures enhanced the robustness of the analysis. The follow-up interviews, which tracked patients’ developments and experiences over six months, also added depth to the data. We acknowledge potential sources of bias inherent in our study design, particularly the risk of recall bias, given the lengthy treatment journeys of the patients, which may have affected their ability to accurately remember past events. However, the longitudinal approach used is particularly well-suited to explore the complex healing journey in chronic PJI treatment. We are cognizant that due to our focus on chronic cases, our sample exhibits great variability regarding treatment stages, the number of revision surgeries and the overall duration of therapy. While such variability might be seen as a limitation in positivistic research, where the minimization of diverging interindividual variables tends to be the goal, it is considered a strength in qualitative study designs. This diversity enabled us to explore the wide range of experiences and perspectives that accompany PJI, enriching our study’s findings. The study’s strengths suggest that despite the context-specific nature of our findings, they may provide transferable insights for other long-term care contexts.

Conclusions

From the patient’s standpoint, PJIs lead to irreversible life change that significantly affect their perceived quality of life and well-being independent of their infection status [7,25]. While the necessity of psychological support for PJI patients has been voiced before [6,9] and is strongly encouraged by our findings, there is currently no established framework for delivering this care. As a result, the responsibility for providing psychosocial guidance falls largely on physicians. Therefore, we strongly recommend that practitioners promote a process-oriented mindset early in the treatment process. This approach should be initiated right from the start of treatment in a preventive manner and maintained throughout follow-up appointments, whether the patient is still undergoing active treatment or not. Understanding that PJI as an illness extends beyond the treatment period —with the possibility of both physiological and psychological challenges persisting despite the achievement of medical goals— can sensibilize partitioners for the holistic healthcare needs of PJI patients.

Our data suggests that patients, whether at the beginning of their treatment journey or after being cured of the infection, should have the opportunity to address the impact of PJI on their lives. As the psychological toll of PJI requires broader recognition, we propose the establishment of a new subdiscipline, namely ‘Psycho-Endoprosthetics’. This initiative would facilitate more effective dissemination of knowledge and interdisciplinary collaboration in the field of PJI. Thereby addressing the critical need to incorporate mental health professionals into the interprofessional team for PJI care.

Acknowledgments

We are deeply grateful to the patients for their time, openness, and willingness to participate in this study. We would also like to express our gratitude to Lea Schulte for her invaluable support and assistance in conducting this research. Her expertise and dedication have significantly contributed to the success of this project. Additionally, we extend our appreciation to the team of the septic surgery department for their essential contributions and collaboration.

ChatGPT-4 was utilized during the review process to refine the original text, for which the authors take full responsibility.

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