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Abstract
Objective To explore patient and public perceptions of planned improvements to the National Health Service (NHS) total joint arthroplasty (TJA) pathway.
Design Three qualitative focus groups undertaken March–May 2018, as part of a mixed-methods evaluation of Getting It Right First Time. Transcripts were subject to framework analysis to identify thematic content between October 2018 and October 2021.
Setting Elective TJA surgery in the English NHS.
Participants Two focus groups including patients who had undergone TJA in the previous 2 years (group 1: n=5; group 2: n=4) and the other individuals who had not but were aged 60+ (group 3: n=5). Participants were recruited via community groups and patient panels.
Results Fourteen individuals took part in the focus groups; all were aged over 60; seven (50%) were female and nine (64%) had undergone TJA surgery. Participants’ perspectives were categorised into themes and mapped onto stages of the TJA pathway. Although perioperative care is often the focus of improvement efforts, participants argued that the patient journey begins before individuals present to primary care. Participants had concerns about other aspects of the pathway, such as obtaining a surgical referral, with prereferral interventions aimed at potentially avoiding the need for surgery (ie, physiotherapy) being perceived as a mechanism to restrict access to secondary care. Patient experience was also conceptualised as a ‘maze’, rather than the logical, sequential process set out in clinical guidelines; exacerbated by a lack of information, knowledge and power imbalances.
Conclusion The linear conceptualisation of the TJA pathway is at odds with patient experience. Improvement programmes focused on perioperative care fail to consider patient concerns and priorities. Patients should be directly involved in improvement programmes, to ensure that patient experience is optimised, as well as informing related processes and important outcomes of care.
- Orthopaedic & trauma surgery
- QUALITATIVE RESEARCH
- Hip
- Knee
- Quality in health care
Data availability statement
No data are available.
This is an open access article distributed in accordance with the Creative Commons Attribution 4.0 Unported (CC BY 4.0) license, which permits others to copy, redistribute, remix, transform and build upon this work for any purpose, provided the original work is properly cited, a link to the licence is given, and indication of whether changes were made. See: https://creativecommons.org/licenses/by/4.0/.
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STRENGTHS AND LIMITATIONS OF THIS STUDY
This is the first study to look at the entire total joint arthroplasty pathway from the perspective of patients and the public and explore how their priorities differ from those of clinicians and managers seeking to improve care.
Coproducing research with a patient advisor ensured the patient perspective was central to our work from planning through to analysis and dissemination.
We sought to recruit via a wide range of different channels, including professional societies, patient groups and local community groups (including multifaith organisations).
Nevertheless, we were not able to recruit a diverse sample with respect to ethnicity, and one participant withdrew because of fears of cultural stigma.
As participants volunteered to participate, there may be a degree of self-selection bias, with participants who were more confident in articulating their views and experiences or indeed, those with particular types of experiences, potentially more likely to participate.
Background
Elective hip and knee replacement are the two most common total joint arthroplasty (TJA) procedures, and two of the most frequently performed and effective surgical procedures in the UK1 2 and globally.3 With an increasingly ageing population, and trend for TJA earlier in life,4 the predicted growth in global demand is likely to have a significant impact on health systems,5 such as the National Health Service (NHS) in England.
A care pathway6 is a multidisciplinary tool for planning the care of specific, well-defined groups of patients who have a predictable clinical course, such as TJA. Drawing on research evidence and best practice, it sets out how different components of care should be optimised and sequenced, to enhance quality7 and improve patient safety. This approach has been shown to reduce unnecessary variation6 8–11 and may improve patient outcomes and optimise resource use.6 12–14 Standardisation of care is important for national improvement programmes such as the English ‘Getting It Right First Time’ programme (GIRFT), which aims to tackle unwarranted variation in orthopaedic surgery across the NHS.15 16 GIRFT sought to develop a ‘best of the best’ clinical pathway17 to improve patient experience and expedite recovery following TJA. Although clinical perspectives are central to pathway development,8 the views of current and future patients who must navigate them, are equally important to optimise experience, outcomes and efficiency.18
In the UK, general practitioners (GPs) act as gatekeepers to secondary care, including the TJA pathway.19 Patients experiencing hip or knee pain typically first present to a GP. In some English regions, local commissioners (leaders responsible for purchasing healthcare on behalf of local communities) are increasingly setting criteria that patients must meet before they can be referred to an orthopaedic surgeon. Current guidance recommends conservative management initially, for at least 3 months, with the aim of potentially avoiding the need for the patient to undergo surgery. Interventions include medication, physiotherapy and/or support with lifestyle and weight loss. If this is not successful, the GP should refer the patient to an orthopaedic surgeon to discuss potential surgery.
Existing research about patient perspectives of the TJA pathway has tended to focus on patient satisfaction and experience20 at specific stages of the pathway, such as deciding to undergo surgery,21 preoperative education,22 waiting for surgery23 24 and management of postoperative pain.12 Given shared decision-making is considered integral to care pathways as well as wider efforts to improve care, there is currently no evidence on how patients and public view planned improvements to the TJA pathway, and whether their priorities align with those of clinicians and managers.25 26 This study sought to address that gap by exploring patient and public perceptions of planned improvements to the TJA pathway, including the factors that influenced this. The research was part of a wider mixed-methods evaluation of the GIRFT programme.15 16 27
Methods
Study design and recruitment
Focus groups enabled us to collect views from multiple participants simultaneously and explore meanings behind those views, which were generated, discussed and refined through group interactions in a way that could not happen with other methods.28
To explore the outcome of interest, which was patient and public perceptions of planned improvements to the NHS TJA pathway, we sought to recruit between four and eight participants to each of three focus groups. This was based on evidence regarding the optimal number of groups and participants for focus group research.29 Groups 1 and 2 included patients who had undergone an elective hip or knee replacement in the previous 2 years (March 2016–March 2018). Group 3 included individuals who had not undergone TJA but were in the age bracket most likely to receive this type of intervention (age 60+) (figure 1).30 This enabled us to compare experiences of those who had undergone TJA with the expectations of those who had not, and how this influenced participants’ views. In this paper, we report the findings from all three groups together, referring to individuals as participants, except where there were clear differences between those who had undergone surgery, and those who had not. We recruited participants via community organisations across London (UK) whose membership was likely to be aged 60 and over (eg, third sector organisations, day centres and activity clubs). We also invited participation from eligible patient advisory group members from relevant organisations (eg, the British Orthopaedic Association). Researchers (SJ and JL) conducted telephone and email screening and collected preliminary demographic information to maximise sample diversity (table 1).
Participant characteristics
Eligibility criteria.
Data collection
We conducted three focus groups between March and May 2018 in an academic (non-healthcare) setting. Observation data were collected by senior researchers (FA or HB) to capture any contextual factors that might have impacted data quality, such as the topics being discussed or depth of discussion. All participants gave informed consent. Each focus group began with a brief presentation by the research team, providing a high-level overview of efforts to improve the TJA pathway for patients, including GIRFT.15
Focus group discussions were informed by semistructured topic guides (online supplemental file 1 and 2), which included participants’ priorities before, during and after surgery, as well as their views of the planned improvements to the TJA pathway. Each group lasted approximately 2 hours and was audiorecorded using an encrypted device for professional transcription in full.
Supplemental material
Patient and public involvement
Three focus groups were cofacilitated by a researcher (SJ or JL) and the patient advisor (RM).31 Following advice from our patient advisor (RM),31 we (SJ) also provided participants with a simplified illustration of the UK TJA care pathway (figure 2), based on clinical guidance at the time.32 The pathway diagram and topic guides were piloted with a research advisory panel of patient advisers and refined initially, and then iteratively as the research progressed (ie, diagram title and emphasis of questions), to take account of emerging findings, in line with accepted qualitative methods.33 Preliminary results of the study were verbally presented to participating patient advisors.
Patient pathway diagram.
Data analysis
The core research team (HB, FA, RM, SJ and JL) held debrief meetings after each focus group to ensure triangulation between focus group findings and researcher observations. Observation notes and field notes were not subject to formal analysis but were used in debrief and analysis meetings to ensure transcript data were contextualised. Transcript data were analysed using a framework approach.34 We used the care pathway diagram (figure 2) and structure of the topic guides (online supplemental file 1 and 2) to develop the initial coding framework, and incorporated concepts and meanings identified in the data.13
The first stage of analysis involved familiarisation, where researchers (SJ, JL, FA and HB) read and collaboratively reviewed transcripts to understand meanings, concepts and ideas, in a reflexive manner (see online supplemental file 3). The wider research team (SJ, JL, RM, FA, HB and NJF) then identified and confirmed parameters of the main themes to form the basis of a thematic framework in a series of separate meetings. Data were indexed based on the thematic framework using MAXQDA software (SJ). Indexed data were organised into thematic charts for each category, in Microsoft Excel, using direct quotations where possible. These were reviewed and modified when necessary to clarify meaning (FA). Themes were further mapped and interpreted to understand areas of significance to patients and the public (SJ, FA, HB, JL, RM, NJF and RR).15
Results
Participants
Seventeen individuals agreed to participate, although three withdrew on the day. Two because of heavy snowfall (group 2 and group 3) and one due to fears of cultural stigma from openly discussing experiences (group 2). All 14 participants were aged over 60 and all self-identified as white British or white Other. Seven were female, and nine participants had undergone TJA surgery in the previous 2 years. Of the five who had not undergone surgery (ie, group 3), three had friends or family who had previously undergone TJA.
Our original goal was to explore participants’ views about planned improvements to the TJA pathway (such as GIRFT),2 15 which were focused particularly on the perioperative ‘in-hospital’ (figure 2) phase of the care pathway. However, it quickly became apparent that other phases of the pathway were of equal, if not more, importance to participants. Participants understood the pathway diagram, but argued that while the streamlined, linear presentation may be how it appears to clinicians and managers, it did not reflect their experiences. Here, we report participants’ views about priorities for pathway improvement; the realities of traversing the TJA pathway; and barriers and facilitators they encountered while navigating the pathway (participant quotations are provided in table 2).
Focus group (FG) quotes
Patient priorities: obtaining a referral to see an orthopaedic surgeon
Although the perioperative phase of the pathway is often the focus of improvement programmes, such as GIRFT, individuals who had undergone TJA argued that obtaining a referral to an orthopaedic surgeon is in fact a greater challenge and concern (see table 2, quote 1). This was ‘upsetting’ given their level of pain or disability (quote 2) especially when appointments were postponed. Some participants found that GP-recommended non-surgical interventions resulted in little or no improvement, while others had been in too much pain to engage with physiotherapy (quote 3). Consequently, they viewed this approach simply as a mechanism for managing demand (quote 4). Some participants believed that GPs had pressure placed on them to not refer patients to secondary care (quote 5,). Others felt that external pressures to ration NHS services impacted their access, such as referrals being reviewed by an ‘assessment committee’ (quote 2) or appointments being delayed by repeated, unexplained cancellations.
Because of the obstacles they had faced, participants spoke about the difficulties encountered to get onto the pathway and secure an orthopaedic referral, and in some cases, ‘persuade’ (quote 6) or even ‘bully’ (quote 7) healthcare professionals, while on this conveyor belt’ (quote 17) or ‘production line’ (quote 8).
The realities of the elective TJA pathway
Participants, especially those who had not undergone surgery (group 3), emphasised the importance of joined-up care planning throughout the pathway, including clinical teams planning surgery dates to coincide with available postoperative support (quote 9). Disconnected communication and ways of working between health providers at different stages of the pathway, left patients (groups 1 and 2) having to assume responsibility for their own care, despite feeling powerless with insufficient information to make such informed decisions (quote 10). The lack of joined-up care was important to all groups and seen as being exacerbated by poor communication. For example, they described poor discharge procedures where communication with wider services was lacking, such as pharmacy, community health services, rehabilitative physiotherapy (quote 11) and social care (quote 12).
Navigating the ‘maze’
Without joined-up forward-planning, patients had to manage and navigate a range of complex local health systems alone. They were left feeling adrift from the system, and many participants felt they were ill-equipped to tackle the obstacles they encountered because of asymmetries of both information and power. As one neatly summarised, the pathway is ‘like a maze’ (quote 13).
Lack of information and knowledge
Participants reported that from the point of referral from primary care, they were ‘left in the dark’ (quote 14). A lack of communication (quote 15) or appropriate, timely information from their healthcare provider hindered their understanding of the process (quote 16) making it difficult for them to make informed choices . This was compounded for some by a lack of knowledge, meaning that they felt they did not know what questions they should be asking. This was particularly a concern in the stages prior to surgery but differed according to participants’ direct or indirect experiences; location of care; and pre-existing knowledge or professional background (quote 17).
Although clinical guidance35 implies shared decision-making should be built into the pathway, participants’ knowledge about available choices varied. For example, some participants in all groups had not known that they could choose the hospital they went to, or their surgeon, while others had sought out information to inform their choice (quote 18, quote 19). Nevertheless, even those who were aware that they could exercise choice, felt that they lacked sufficient knowledge to do so (quote 20).
Power imbalance
Alongside a lack of information and communication, many participants described how they had to disrupt existing power dynamics to navigate the TJA pathway. Asymmetries of power in relationships with key health professionals could significantly impact their experience of care (quote 8) and their progress along the pathway. For example, negative interactions with a surgeon had halted one participant’s journey during their first appointment with a surgeon and hindered their access to pathway at the very start (quote 21). Another participant, who had cared for a TJA patient, described how her attempts to advocate for them were ignored (quote 22).
Overcoming obstacles
Participants described three distinct sources of knowledge which they drew on to differing degrees to overcome the obstacles they faced: formal learning, informal learning and lived experience.
Formal learning
Formal learning opportunities offered to patients prior to surgery had helped some. For example, preoperative education groups (also known as ‘Joint Schools’) run by hospital staff for patients listed for surgery, had alleviated fears, increased knowledge and provided an opportunity to ask questions. Nevertheless, for some, the programme was offered very close to the date of the procedure, meaning that they had a long wait to raise their concerns. Consequently, some would have liked this to have been offered much earlier in the pathway (quote 23).
Informal learning
Some participants also sought out or expected to seek out information for themselves that they thought they needed to navigate the process. This included details about medication (carer, group 3); chasing appointments (female patient, group 1); and undertaking their own research to inform choices (all groups) and guide decision-making (female patient, group 1). Others had also sought information from health professionals such as physiotherapists who were familiar with the TJA pathway, which helped them feel ‘less in the dark’ (quote 24).
Lived experience
Participants who were able to draw on a previous experience of undergoing surgery, used this to help inform choices and decision-making and felt better able to navigate the pathway on subsequent occasions. Those who had previously undergone a TJA knew to request additional information about regaining function, resuming activities and exercising, not only to improve outcomes but also to assist navigating the crucial postoperative stage of the pathway (quote 26). Some also believed that this knowledge had enabled them to expedite the process on subsequent occasions, including identifying potential short cuts (quote 25,).
Discussion
Despite ongoing efforts to streamline and standardise care, patient experience differs significantly from the seemingly logical, sequential process set out in clinical guidelines.35 Importantly for patients, the pathway does not begin and end at the doors of the hospital. For example, it starts at the first presentation to primary care with joint pain. A lack of timely information and communication also leaves patients feeling that they have been ‘left in the dark’ to navigate a ‘maze’. This sense is exacerbated by power and information asymmetries between patients and clinicians. While formal education programmes such as ‘Joint School’ can be helpful, many patients have to seek out additional information for themselves to answer their queries, understand the procedure and navigate the TJA pathway.
Previous research has largely focused on specific phases of the care pathway. This is the first study to look at the entire TJA pathway from the perspective of patients and the public and explore how their priorities differ from those of clinicians and managers seeking to improve care. Coproducing research with a patient advisor ensured the patient perspective was central to our work from planning through to analysis and dissemination. Qualitative data collection methods were used to allow participants to describe their experience and views in their own words, and the focus group approach enabled sharing, comparing and corroboration of ideas. As socioeconomic circumstances may impact a patient’s decision to undergo TJA,36 we sought to recruit via a wide range of different channels, including professional societies, patient groups and local community groups (including multifaith organisations). Nevertheless, we were not able to recruit a diverse sample with respect to ethnicity. Indeed, one participant withdrew because of fears of cultural stigma. It is acknowledged that cultural differences may exist between other groups of patient and public members. The study methodology and number of study participants may limit the transferability of findings—although this was mitigated by using purposeful sampling there was geographical variability in participants’ lived experiences of the UK TJA pathway.37 The methodology was selected to explore a range of views in depth, and not necessarily representation. As participants volunteered to participate, there may be a degree of self-selection bias, with participants who were more confident in articulating their views and experiences or indeed, those with particular types of experiences, potentially more likely to participate.
Our findings have several implications for clinicians and policymakers. Although perioperative care is often the focus of clinically led efforts (eg, GIRFT)2 27 to improve the TJA pathway, participants also emphasised that obtaining a referral to a surgeon is often the greatest challenge, and the postoperative period following surgery is a priority. Despite some evidence to suggest that prehabilitation is associated with improving some of the outcomes for patients undergoing orthopaedic surgery both preoperatively and postoperatively, we have highlighted that non-surgical interventions (eg, physiotherapy) prior to surgical referral are perceived by patients and the public as a means of managing demand.38 While this remains the case, as well as potentially damaging patient trust, it is likely to impact patient engagement with evidence-based care. Efforts to provide patients with information about their procedure and likely recovery (eg, via ‘Joint Schools’) are welcome, but many want information about the pathway earlier than this so that they are not left feeling ill equipped to navigate the ‘maze’ of care themselves, especially if they have not previously undergone surgery. At a policy level, those working to standardise services using care pathways should also be aware that patient experience is seldom analogous to their linear, stepwise conceptualisations. In line with the existing literature, our findings suggest that experience-based codesign should be a core part of pathway redesign.39 Challenges with traversing the TJA pathway, alongside the negative impacts on physical and mental well-being of delayed appointments that were reported in this study, are likely to be exacerbated by the COVID-19 pandemic which has resulted in further delays, cancellations, and increased waiting times for those on the TJA pathway.40 The subsequent impacts on the health system have increased the length of patients’ experience of pain, decreased mobility and worsened quality of life.41 42
Conclusion
In conclusion, we have highlighted the disparity between the priorities of improvement programmes such as GIRFT and those of patients and the public. While improvement programmes typically seek to improve perioperative care, patient concerns lie elsewhere, for example, obtaining a referral to an orthopaedic surgeon and managing recovery at home. Research that includes views from both patients and healthcare professionals is needed at these crucial stages of the TJA pathway to explore how patients are being supported. The typically linear conceptualisation of TJA pathways in policy documents is also at odds with how patients experience the process. With rates of TJA set to increase globally, patients and public must be directly involved in improvement programmes to optimise not only processes and outcomes of care, but also patient experience.
Data availability statement
No data are available.
Ethics statements
Patient consent for publication
Ethics approval
This study involves human participants and was approved by NHS North West—Liverpool East Research Ethics Committee (16/NW/0654). Participants gave informed consent to participate in the study before taking part.
Acknowledgments
The authors would like to acknowledge and thank the focus group participants, and especially Steven Towndrow, Wendy Chandler, Stephanie Hume, Patricia Hallam and the NIHR ARC (formerly CLAHRC) North Thames Research Advisory Panel patient advisers for their efforts in preparation and organisation of the focus groups.
References
Supplementary materials
Supplementary Data
This web only file has been produced by the BMJ Publishing Group from an electronic file supplied by the author(s) and has not been edited for content.
Footnotes
Twitter @chatty_sarah
Contributors HB was principal investigator. HB and RR initiated the research. HB, NJF and RR designed the evaluation. SJ, RM and JL were responsible for qualitative data collection; SJ, FA, RM, JL, NJF and HB analysed the qualitative data. SJ, FA, RM, JL, RR, NJF and HB drafted the manuscript and all authors contributed to reviewing and substantive revision. All authors approved the final version. All authors had full access to all the data in the study and accept responsibility to submit for publication. HB will act as guarantor.
Funding This study was funded by National Institute for Health and Care Research (NIHR) Programme Grants for Applied Research (Applied Research Collaboration (ARC) North Thames).
Competing interests None declared.
Patient and public involvement Patients and/or the public were involved in the design, or conduct, or reporting, or dissemination plans of this research. Refer to the Methods section for further details.
Provenance and peer review Not commissioned; externally peer reviewed.
Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.