Introduction
Osteoarthritis is the most common form of knee arthritis in older people aged between 60 and 80 [
1]. It is a degenerative condition that can cause joint pain, stiffness, decreased function [
2] and can impact both the healthcare system and patients quality-of-life [
3,
4]. At the end-stages of knee osteoarthritis, surgery may be recommended when non-surgical treatments are ineffective. Undergoing knee replacement surgery can relieve pain and improve function [
5]. In the UK, approximately 100,000 patients per annum undergo knee replacement [
6] and globally the numbers performed are steadily increasing.
When patients decide to undergo joint replacement, they may face a choice about the type of joint replacement to be used. Patients are eligible for partial (only the damaged half of the knee is replaced) or total knee replacement when the osteoarthritic disease is localised to one compartment of the knee and the anterior cruciate ligament is intact [
7,
8]. Both interventions are standard care. In the UK, approximately 8% of knee replacements preformed are partial [
9], although evidence indicates that up to 50% of patients may be eligible [
10,
11]. This suggests up to 50,000 patients a year in the UK potentially face a decision between partial or total knee replacement.
Compared to total knee replacement, the partial procedure is less invasive and is associated with a faster recovery, reduced risk of blood transfusion, fewer medical complications and lower mortality [
10,
12,
13]. Both procedures significantly reduce pain and improve function for the majority of patients, but comparative evidence suggests that partial replacement is associated with better functional outcome [
14,
15]. Yet, long-term studies and registry data show that the revision rate is higher following partial than total knee replacement [
12,
13,
16,
17].
Close patient involvement in medical decision-making is now strongly recommended in Europe and the US [
3,
18]. Shared decision-making (SDM) is a collaborative process where clinicians and patients share the best available evidence when facing a decision [
19,
20], and where patients are supported to consider options, to achieve informed preferences [
20]. Whilst being ethically desirable, the wider benefits include better health outcomes and improved patient satisfaction by choosing more appropriate options [
21].
Implementing SDM into routine care is difficult despite health policy interest [
18]. Mismatches between patients and healthcare professionals have been found in the decision-making process. One study on support needs of patients’ choosing between partial and total knee replacement found patients’ wanted more information on the risks and benefits [
22]. However, surgeons were concerned with confusing and overloading patients with information [
22]. McHugh and Luker [
23] highlighted the need for standardised evidence-based information on knee replacement options. They found many were not provided with treatment options resulting in people searching independently for information and some receiving conflicting advice. Evidence also suggests that some surgeons may not be in equipoise between the two procedures [
24]. Considering the different perioperative and post-operative outcomes of partial and total knee replacement, it is likely that these factors will impact patient preference [
3].
One way to support SDM is through decision aids, such as Option Grids, providing accurate and accessible information [
25]. Option Grids are one-page evidence-based summaries of available options presented in a table format with frequently asked questions (FAQs) listed as the rows derived from common concerns allowing horizontal comparison between options [
18]. FAQ answers under each option are based on the latest research evidence [
18] and have been developed from patient surveys [e.g.
26] and team decisions (e.g. including clinicians, researchers and patient representatives) based on evidence from patient preference literature [e.g.
27]. They are designed to be read in a few minutes [
18] and used in consultations to prompt dialogue [
28]. Most importantly, they are developed collaboratively with multi-disciplinary clinical teams and patients [
28]. Recent research suggests both patients and clinicians find them acceptable and practical and should be considered within routine consultations [
25,
29,
30]. This study consulted the Option Grid guidelines on developing a decision aid.
Greater depth of understanding patients’ concerns/issues may be obtained through qualitative research. The aims of this study were to: (1) explore patients’ experiences before surgery including how they came to decide to have knee replacement surgery, and (2) seek their views on a knee replacement surgery decision aid based on the Option Grid format, including their preferences for content and style of the potential decision aid. Overall, we aimed to uncover information needs/priorities patients need to know to share decisions with clinicians to inform a decision aid comparing partial and total knee replacement.
Discussion
Participants arrived at ‘readiness for surgery’, a turning point where accommodating their condition gave way to a perceived need for surgery and hopes of improved function as a result. ‘Information for decisions’ included the tool to be presented by the surgeon, suggested benefits and recommendations, views on choice and important information priorities identified.
In the current study, many experienced difficulties being referred to secondary care and became frustrated with their GP, perceiving other treatments as hindering surgery. McHugh et al. [
44] found those with worse pain and physical functioning were more likely to have knee replacement surgery. They suggested improvements are required to GP referral processes and guidance on who should have surgery. The ACHE (Arthroplasty Candidacy Help Engine) Tool is a new referral guide using the OKS to identify candidacy for joint replacement [
4]. User evaluation revealed the tool was viewed positively by patients and GPs to support referral but low response rates are noted [
4]. In this study, there was support for the ACHE Tool to guide referral decisions and improve patients experience of the referral process.
Readiness for surgery was based on a number of factors including pain with a desire to stop pain medication, improve activity levels, financial concerns and psychosocial improvements. The Necessity-Concerns Framework (NCF) provides a useful lens through which to interpret our findings and its theoretical implications has been suggested to extend to surgery [
45]. The NCF was developed to understand attitudes to medication and helps explain the relationship between common-sense evaluation and extent of treatment adherence [
46‐
48]. Adherence is influenced by perceptions of the need of treatment (necessity beliefs) and concerns about the adverse effects of that treatment (concern beliefs) [
47].
In the current study, perceptions of personal need were often masked by normalising and adapting movements (a finding also noted by Hudak et al. [
49]) preventing a need for treatment. Andersen et al. [
50] refer to this as ‘appraisal delay’ when delays are encountered due to symptom interpretations.
Participants traded-off costs and benefits of surgery. Concerns consisted of kneeling issues post-surgery and surgery complications (e.g. infection/recovery). A threshold was hit when other alternatives were exhausted, a finding noted by Suarez-Almazor et al. [
51] in their study on total knee replacement surgery decision-making. Often experienced was an interaction of biopsychosocial factors [
52]. Biologically, the knee was becoming uncontrollable/unpredictable and painful. Psychologically, identity was impacted (e.g. feeling old) with a need to gain control back (e.g. regaining mobility) (see also [
23,
51]). Many participants were missing out on social activities. Smith et al. [
53] found social isolation through reduced participation and functional capability. In the current study, surgery was eventually associated with stronger perceptions of necessity for treatment and fewer concerns about adverse consequences in the hope of returning to a former self.
Our study supports previous findings that decision aids are acceptable tools [
25]. Despite variation on surgery choice, most wanted an active role in SDM and the surgeon’s recommendation. Similar findings in orthopaedics and cancer care have been found [
54,
55]. Woolhead et al. [
56] found participants struggled to make sense of their outcome of knee surgery and often described it in contradictory terms. In the current study, participants felt the decision aid would prepare them for all possible outcomes.
Recommendations included using the back of the page for images and notes. Previous research has supported the use of images on decision aids and has often been used to bridge literacy barriers [
48,
57]. We recommend visual information should not be limited to literacy level.
Further recommendations to the tool included using bullet points for clarity and a quantitative format which falls into the traditional didactic approach of health information presented by facts and statistics [
58,
59]. However, the benefits of hearing others experiences were noted in the current study. Patient narratives have been increasingly used to provide health information to patients [
58‐
60]. Narratives are easily processed [
59,
61] and may also provide important emotional and social information often lacking in health resources [
59]. We recommend that the knee replacement surgery decision aid will be a useful adjunct to the clinical discussion and needs to be part of a whole that includes patient experience and pre/post-operative information to better support patients in their decision-making. In support, Bennett et al.’s [
59] study found a combination of supplementing factual information with patient narratives was useful and likely provided better understanding of cancer screening.
The findings support existing literature around the importance on outcomes (e.g. pain reduction/function/flexibility/kneeling/mobility [e.g.
5,
14,
15]), risks (e.g. blood clots/nerve damage/infection/survival of prosthesis/rates of revision [e.g.
12‐
17,
62‐
64]) and time factors (e.g. age/length of procedure/recovery/time in hospital [e.g.
13,
14,
49,
65‐
70]). It further identifies original priorities, such as cosmetic concerns including the appearance of the knee and scar concerns. Research has found satisfaction with limb alignment appears to influence outcome after total knee replacement and is often excluded in outcome measures [
71] and that high concerns about scarring following elective surgery are irrespective of age, gender, ethnic background or geographic location [
72]. Expectations need to be addressed between patients and clinicians [
71,
72] which we envision with the implementation of this decision aid.
Study limitations
Participants were recruited from one hospital and were white and English speaking, which may limit the applicability of the findings. It is important to conduct research with a demographically diverse sample. Having orthopaedic surgeons involved in the focus groups may have deterred some participants. The post-surgery group had more partial than total knee replacement participants. However, the post-surgery group were in the same situation as the pre-surgery group faced with options which many did not experience with their first knee replacement.
Study outcomes and future directions
Our findings highlighted the need for a decision aid focused on partial and total knee replacement. A reference group was initiated, the study findings consulted on, FAQ’s determined and information prioritised to include in the decision aid. A systematic review has been completed comparing partial versus total knee replacement to help inform the FAQs [
73]. The tool will be user-tested and evaluated in the clinical setting.
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