Giving an account of patients' experience: A qualitative study on the care process of hip and knee osteoarthritis

Abstract Introduction Despite the publication of clinical practice guidelines, the quality of the care process as experienced by patients with osteoarthritis (OA) appears suboptimal. Hence, this study investigates how patients with OA experience their disease and care process, highlighting potential elements that can enhance or spoil it, to optimise their quality of care. Methods A qualitative study based on semi‐structured interviews. Patients with hip and knee OA in Italy were interviewed. The interview guide was created by a pool of health professionals and patients. The interviews were analysed through a theme‐based analysis following a philosophy of descriptive phenomenological research. Results Our analysis revealed seven main themes: (1) Experiencing a sense of uncertainty, as interviewees perceived treatment choices not to be based on medical evidence; (2) Establishing challenging relationships with the self and the other, as they did not feel understood and felt ashamed or hopeless about their condition; (3) Being stuck in one's own or the health professionals' beliefs about the disease management, as a common thought was the perception of movement as something dangerous together with a frequent prescription of passive therapies; (4) Dealing with one's own attitudes towards the disease; Understanding (5) the barriers to and (6) the facilitators of the adherence to therapeutic exercise, which revolve around the therapy cost, the time needed and the patients' willingness to change their life habits and (7) Developing an uneasy relationship with food since the diet was considered as something that “you force yourself to follow” and overeating as a way “to eat your feelings”. Conclusion The lack of clear explanations and a negative attitude towards first‐line nonsurgical treatments (mainly physical exercise), which are considered as a way to fill the time while waiting for surgery, underlines the importance of providing patients with adequate information about OA treatments and to better explain the role of first‐line intervention in the care of OA. This will enhance patient‐centred and shared decision‐making treatments. Patient Contribution Patients with hip and knee OA participated in creating the interview and contributed with their experience of their care process.


| INTRODUCTION
The care process is often a complex and intimate experience as lived by patients. Caring is one of the expressions of the ontology of human beings since people are dependent on one another. 1,2 Due to its grounded origin in anthropology, the care process can be considered as a 'ritual' performed around the patient. 3 It is a complex psychosocial context with a nonspecific effect on patients' brain that can amplify or reduce the specific effect of the treatment, tapping into people's beliefs, expectations and feelings. [3][4][5] An example of this complexity can be found in the care of individuals with hip and knee osteoarthritis (OA).
OA is the most common form of arthritis and one of the foremost causes of compromised health-related quality of life worldwide. 6,7 Its first-line intervention includes therapeutic exercises and education programmes, often delivered by physiotherapists, and diet when needed. [8][9][10][11] Therefore, this intervention is grounded on highly demanding nonsurgical treatments in terms of patients' compliance and on a cultural change at the individual and societal levels that need to accept and foster the importance of these interventions. 12,13 To answer this need, several national and international clinical practice guidelines (CPGs) were published all over the world. [8][9][10][11] However, different international studies brought to the forefront that only one-third of patients are receiving the recommended first-line interventions. [14][15][16] Basedow and Esterman 14 analysed the appropriateness of OA care through the synthesis of quality indicators retrieved from global medical records, administrative databases and patient questionnaires and interviews. These indicators are generally expressed as pass-rates, and they concluded that the quality of OA care was suboptimal for all treatment domains, with first-line interventions reaching the lowest pass-rate. 14 The reasons behind the failure of the implementation of first-line interventions are several. They include, among others, patients' preferences, beliefs and experiences about their disease and the care process behind it. 4 In the healthcare setting of musculoskeletal conditions, such as OA, efforts on assessing and understanding patients' experience could help health policy-makers foster improvements in healthcare providers' interpersonal aspects and patients' expectations on how healthcare should be delivered. 17 Therefore, it is essential to investigate the experience of people with OA about their disease, focussing on the care process they received, exploring their experiences, preferences and beliefs, so as to highlight potential elements that affect it, both positively or negatively. For what concerns the Italian healthcare system, it provides its citizens with universal coverage essentially free of charge. 18 However, Italy lacks national CPGs for OA management that are officially recognised by the Italian Higher Institute of Health. This results in the absence of a standardised care process for this disease. Therefore, health professionals can only rely on international CPGs, which we showed elsewhere to be scarcely followed by Italian physiotherapists. 19 Hence, this qualitative study explored the experience of people with OA about the care process they received in Italy.

| Study design
A descriptive phenomenological study was performed from October 2020 to March 2021. The descriptive phenomenological inquiry aims at ensuring "direct explorations, analysis and descriptions of particular phenomena (as in this case-the care process), as free as possible from unexamined presuppositions, maximising intuitive presentation". [20][21][22][23][24] The underpinning intent of the phenomenological researcher is to give voice and power to individuals who experienced, or are experiencing, at first-hand the phenomenon of interest as, in this instance, people with OA. 22 The research was conducted in respect of the Declaration of Helsinki and reported following the Consolidated Criteria for Reporting Qualitative Research (COREQ ; Table S1). 25 Ethical approval was obtained from the Ethics Committee for University Research (CERA: Comitato Etico per la Ricerca di Ateneo), University of Genova (Approval date: 15 June 2020; CERA2020.07).

| Participants
A purposeful sampling method was adopted to ensure the maximum variations of the experiences. 26 Participants living in different geographic locations, both urban (core areas of cities) and suburban (residential areas that surround main cities), with hip OA, knee OA or BATTISTA ET AL. | 1141 hip and knee OA, were considered eligible according to the need to reach a broad understanding of the studied phenomenon, which stems from different experiences. 26 Specifically, individuals with physician-diagnosed knee and hip OA, able to speak Italian and willing to participate were considered eligible to join this study. Those patients reporting joints other than hip or knee as the primary joints for OA symptoms were not considered eligible.
A network, including physicians (i.e., orthopaedics, rheumatologists and general practitioners) and other health professionals (i.e., physiotherapists and nurses), specialised in the rehabilitation of rheumatic and musculoskeletal diseases was created to help with the participants' recruitment. Health professionals were first approached individually by the research team and informed about the study aims and procedures of data collection. After obtaining their collaboration, the eligible participants were contacted by the health professionals in the network and informed on the aim of the study, the interview process (i.e., places and proposed dates) and the data confidentiality and anonymity. Eligible participants were left free to join the research and to withdraw from it at any time. Only those who expressed their interest in partaking in the study were contacted by S. B. to collect the informed consent and arrange the interview. Then, a snowball sampling was also adopted to access individuals in the network of participants with OA who had been contacted and agreed to participate first. 26 The recruitment was concluded once the data saturation was reached, as judged by the two authors (S. B. and M. M.) who analysed interviews. An inductive thematic saturation was followed to assess the data saturation: S. B. and M. M. kept interviewing and analysing the interviews simultaneously until no new themes were found. 24

| Data analysis
As far as the analysis was concerned, a theme-based analysis was performed. 31 Thematic analysis is an independent qualitative descriptive approach described as "a method for identifying, analysing and reporting patterns (themes) within data". 32 Since this study explored the experience of the care process, the thematic analysis was conducted within the framework of a descriptive phenomenology study, as reported and explained above. The themes were derived from the data and not determined in advance.

| Rigour and trustworthiness
To ensure the study rigour and trustworthiness, multiple strategies were promoted. Firstly, S. B. documented field notes ('Memos') after completing each interview to promote reflexivity. 34 These memos were shared during research meetings for reflexive thoughts.
Secondly, the research team met frequently to refine the themes and subthemes until a consensus on the final themes was achieved.
Thirdly, an audit trail containing meeting notes, analysis discussions and research decisions was continuously reorganised by the two authors who analysed the interviews (S. B. and M. M.) to stress the dependability and confirmability of the study. 34 An example of it is reported in Table 2. Lastly, a Synthesised Member Checking was exploited to improve the credibility of the analysis. 35 At the end of each interview, participants were asked if they wanted to participate in the member checking phase. All of them agreed to partake in it.
The member checking phase was yielded at the end of the interview and analysis process. The participants were provided with a one-page summary, highlighting the main themes and subthemes identified in the study, together with a brief plain explanation of the key findings.
They were then asked to read it thoroughly, feeding back the researchers with any doubts or concerns they might have had about this summary. All the participants agreed with what was retrieved, and no further modifications to the results were done.

| Patient and public involvement
Two people with both knee and hip OA (one identified herself as female whilst the other one as male), representatives of two different patients associations focussed on rheumatologic and musculoskeletal diseases, were involved in the design of the study and participated in the creation of the interview guide to ensure that the questions included were relevant for the studied population. 36 The patients' representatives did not attend the interviews and did not participate in the study.

| RESULTS
Thirteen Italian people from northern Italy agreed to participate in the interviews. Two participants were not able to do the interviews because they did not understand the questions on both telephone and videoconference since they had critical auditory impairments. Therefore, eleven participants were included.   However, besides these differences, at a certain point, they all matured a sense of acceptance, as if OA is something they cannot change.
Besides, I am also a fatalist, things happen in life, and Moreover, all the interviewees highlighted the importance of willpower, which was seen as either a facilitator or a barrier depending on its presence or lack thereof (see next theme). All interviewees agreed that their willingness to change their life habits was the key to sticking to the exercise plan and that willpower was a compulsory step to change life habits. The lack of clear indications from specialists regarding the type of exercise to perform, as well as its intensity and frequency, were another barrier to starting any physical activity. The interviewees felt lost, as they perceived that they were missing precise guidelines to follow and that everything was left to their intuition.
My doctor told me to 'go for a walk', or maybe to 'move', but never specifically, something like 'it would be better in your case to do something more targeted'. The only preventive function that exercise seemed to have was to facilitate the recovery process after the surgery. The interviewees reported little to no appreciation of exercise as a treatment in its own right.

| DISCUSSIONS
The quality of the care process depends not only on the appropriateness of treatments delivered by health professionals (technical aspects) but also on relational and functional aspects. 37 From our results, several of these aspects were hindered during the OA care process, and this could be one of the possible explanations for why patients with this disease do not reach good levels of health-related outcomes and adherence towards first-line interventions.
As far as the technical aspects are concerned, patients did not receive first-line interventions. As a matter of fact, their care process was mainly based on passive therapies while waiting for surgery, with a scarce prescription of movement, seen not only as dangerous, but even as a possible risk factor for anticipated surgery, and valuable only after joint replacement. However, oral medications have been shown to reach similar effects to exercise therapy for improving functionality and pain relief in OA. 38 Nevertheless, oral medications, and in particular nonsteroidal anti-inflammatory drugs, have potential and well-documented side-effects, such as gastrointestinal toxicity, cardiovascular adverse effects and nephrotoxicity, 39 whereas exercise has been shown to have benefits that go beyond joint health, reducing the risk of developing a wide array of comorbidities and promoting a healthy lifestyle. 40  According to the findings of this paper, there are several aspects that may facilitate or hinder patients' adherence towards physical exercise, and these should be taken into account by clinicians once it is prescribed. Regarding the obstacles, the lack of time and the cost seemed to be the main ones. The former was already known to be one of the more prominent causes of lack of adherence to physical exercise, in general. [43][44][45] However, preliminary evidence showed that there is a gap between perceived and real lack of time 46 and that is why it is essential to address this issue while educating the patients, to help them reach a good level of awareness of the real-time they can devolve to their own care, and to tailor self-management programmes according to their needs. 47 The latter, on the other hand, has to be tackled at a higher health-policy level. People in lower socioeconomic positions show a higher incidence of OA, more severe symptomatology and tend to experience lower benefits from OA interventions. 48,49 However, despite Italy's public healthcare system, none of the participants who were being followed by professionals within the public system reported that exercise was included in their care process. There is a need to establish an effective care pathway for people with OA, to implement evidence-based treatments in the care routine employed in the public system, with the aim of reducing the healthcare inequalities faced by those patients who are not able to access alternative private systems.
Another barrier to the implementation of exercise into the patients' self-management routine was their unwillingness to change their habits. This was a shared barrier with the implementation of diet strategies into their care. It is already known that individuals do not engage in health-promoting behaviours, even though these can reduce mortality and contribute to their wellness. 50  The relational aspect concerns all interactions between patients and health professionals. 37 The interviewees felt as if they were not being understood by both their relatives and health professionals, and they found a lack of empathy in the professionals they met.
Empathy declines throughout medical formation, especially when it is not trained with specific interventions. 61 In particular, this lack of empathy was found during the diagnosis and the prognosis of OA. The individuals interviewed extracted a sense of hopelessness from health professionals' words, which was derived from seeing OA as a pathology with a sealed faith-surgery-and a sign of their ageing process. This was also fostered by the reading of their radiographic findings that physicians found necessary to perform the diagnosis and commented with sentences such as "if I did not know that these x-rays belonged to you, I would think that they belong to someone who is at least 30 years older than you". However, radiographic findings are considered by CPGs, as complementary for the assessment of OA and should be considered only when other diseases are the suspected cause of the symptoms (e.g., infection, cancer, rheumatoid arthritis) or once the surgical intervention has been planned. 8 Besides, there is a weak association between the severity of radiographic findings, pain and disability levels 28,66 and basing clinical decisions on imaging fosters the perception of OA as a wear-and-tear disease, which may, in turn, induce fear-avoidance behaviours. 28,67 Finally, promoting surgery as the unique and real solution to OA may demotivate patients to change their life habits, considering the difficulty to follow diet and a physical activity programmes compared to the 'easy way out' of undergoing surgery.
Some limitations of this study need to be underlined. Firstly, the small sample size required to conduct a qualitative study limits the generalisability of the results. 68 Besides, all the interviewees lived in a similar geographical area (i.e., northern Italy), so that it is not possible to conclude that the results of this study may be transferrable to the other Italian regions. However, in Italy, there is a well-known negative gradient gap from North to South when it comes to the efficiency of the healthcare system. 69,70 In light of this, it is possible that this study depicted the best-case scenario that patients with OA may experience. Moreover, the results gathered from this study may not be transferrable to other European countries, such as the ones comprised in the northern areas, due to the geopolitical differences between them. 71 Conversely, they may be more applicable to other Mediterranean countries, considering the similarities in the health professionals' educational needs within the field of rheumatology. 71 Secondly, the patients interviewed were at different stages of their care process, and their experience may change during the different stages. However, all patients agree with what emerged during the member checking phase.
On the contrary, one of the strengths of this study is that it is the first one that takes into account the whole care process experienced by patients with OA from diagnosis to pre-surgery, highlighting some of the possible pitfalls that both patients and clinicians may encounter, and that can hinder the success of the intervention.

| CONCLUSIONS
This study highlights potential common themes in the experience of people with OA, with a focus on its care process, which should be taken into account to enhance the quality of it. People with hip and knee OA seem to experience an uncertain care process.
In particular, they experienced a lack of clear explanations, a lack of empathy, and a general, negative attitude towards first-line nonsurgical treatments. All those factors underline the importance of providing patients with adequate information through effective communication about the treatment options. By doing so, it will be possible to shift patients' beliefs and improve their awareness of the first-line treatments they should follow.
This will enhance patient-centred treatments led by shared decision-making processes with patients, increasing their compliance towards first-line interventions and their skills to take care of their health and healthcare, with positive effects on their health-related outcomes and healthcare costs.