Patient experience and preference while waiting for elective cardiac surgery: a mixed-methods cross-sectional survey across four major National Health Service hospitals in London

Abstract

Objectives

Waiting for cardiac surgery is a stressful life event for most patients. Exploring what people experience while waiting and understanding their preferences and views on how waiting time could be improved will help to inform new strategies for more efficacious waiting list management. In this study, we explored experiences and views of people waiting for elective cardiac surgery across four major London hospitals.

Design

Mixed-methods cross-sectional survey, with explanatory concurrent design.

Setting

Four cardiac surgery services across two National Health Service Trusts in London.

Participants

Patients on waiting lists for elective cardiac surgery at Royal Brompton, Harefield, St Thomas and King’s College hospitals between October 2023 and March 2024.

Outcome measures

Experience of waiting for surgery, and preferences about how waiting time could be improved.

Results

554 out of 1041 invited participants agreed to participate (recruitment rate 53.2%). Among them, 274 fully completed the survey (completion rate 49.5%). Most participants (from 52.2% to 70.9%) reported their daily and social activities were impacted by their cardiac condition, and worrying was an ubiquitous feeling (reported by 86%). Psychological distress was reported differently across women and men (higher in women). Eight themes were identified: worrying, daily activities, family/friends and social activities, sexual life, waiting list experience and feelings, communication, most important factors for surgery and suggested improvements. Communication with the surgeon and clinical team, and regular updates on waiting list progress are suggested as crucial factors to alleviate stress, thus potentially improving the experience of waiting for the surgery.

Conclusions

This study highlights the importance of emotional support, clear communication, regular updates on waiting list progress and building trust with the clinical team to improve patient-centred care while waiting for elective cardiac surgery. This finding can offer valuable insights for managing waiting lists in other surgery waiting list contexts.

Trial registration

NCT05996640.

STRENGTHS AND LIMITATIONS OF THIS STUDY.

• The mixed-methods research design allowed for in-depth exploration of quantitative findings with qualitative ones from a sample of over 200 people waiting for elective surgery.

• Co-design of this study ensured that the patient’s perspective was at the centre of this research.

• It was not possible to compare different ethnic backgrounds due to the disproportion of reported White British ethnicity.

• Due to the exploratory nature of this cross-sectional design, only correlation analysis could be done and causality between variables could not be tested.

• A convenience sample along with potential access barriers such as digital divide (eg, elderly, disabled and non-digital groups were excluded using an online survey) might have created some selection bias.

INTRODUCTION

Long waiting time for cardiac surgery was considered one of the contributing risk factors to premature death for people with cardiovascular disease (CVD) in 2022.¹ The cardiac care waiting list in National Health Service (NHS) England reached a record high of 4 14 596 patients in March 2024, marking a 78% increase from February 2020. Over 41% of these patients had been waiting more than 18 weeks for treatment, and almost 11000 people had been on the waiting list for over a year.¹ Risks of delayed cardiac care were highlighted by data from a meta-analysis of over 66 000 patients across Europe, New Zealand, North and South America and showed rates of 1.1 deaths and 1.0 non-fatal myocardial infarctions (MIs) per 1000 patient-weeks for coronary artery bypass graft patients, and 0.1 deaths and 0.4 MIs for percutaneous coronary intervention patients.²

The NHS’s recently published priorities and operational planning guidance for 2025/26 stated that reducing waiting time for elective care is a national priority.³ However, reducing waiting times might not necessarily reflect a reduction of anxiety and stress associated with waiting.⁴ Waiting time for elective surgery has a negative impact on patient life, particularly on mental health and overall quality of life.4,8 A study involving about 1000 individuals across seven UK centres examined the impact of the COVID-19 pandemic in relation to delays in elective cardiac surgery and found that although mortality risk was low (only 1% died), there were adverse effects such as increased anxiety and worsened quality of life.⁹ Indeed, anxiety and depression are not only known risk factors for the pathophysiology of CVDs, but also frequently reported by patients waiting for surgery.10,12 Data from Petrie et al suggested that waiting for surgery induces a moderate level of anxiety in 84% of their sample and reached a level of severity in about 9% of it.¹³ Also, they found that anxiety was reported more in patients younger than 50 years old compared with those over this age.¹³ Although counterintuitive, length of waiting has not been found associated with a more distressing experience of waiting.^{4 7 14} The experience of waiting is complex and brings mixed feelings, from frustration and fear to more awareness of time and an opportunity to prepare for the surgery.⁷ A review in patients waiting for transplant and cancer surgery which focused on the psychological aspects associated with waiting claimed that the waiting list is more detrimental for women, and that regular communication and updates about progress on the waiting list, acknowledgement of the emotional burden experienced by patients, and peer support would be helpful to reduce distress associated with waiting.¹⁵ Data from patients waiting for cancer surgery during the COVID-19 pandemic showed that the majority of participants reported moderate to high levels of stress, and that major themes emerged around uncertainty, life changes, coping strategies, communication quality with the healthcare team, experience of the healthcare system and health system decision making during the pandemic.¹⁶ Research focusing on patients waiting for cardiac surgery suggested that anxiety and symptoms of distress were associated with the waiting and affected level of functioning.^{2 17} Yet, findings about the association between level of functioning and length of waiting were inconsistent.^{5 17} Other data suggested that long waiting negatively affected social relationships and family life (including sexual life) and emotional distress in patients’ spouses.¹⁸ Data from survey studies showed that patients’ concerns were around their health, risks associated with the surgery,¹⁹ while carers’ main concerns were on how to support the patient while waiting.¹⁹ Also, it was found that patients wanted more advice on diet, effects and side effects of medications, exercise, the surgery itself and more contact with the clinical team while waiting.²⁰

Prior data on surgery cancellation’s experience highlighted not only the natural emotional distress associated with the cancellation but also five themes: perception of the organisation of the cancellation (most felt they did not receive an acceptable explanation of why it happened), medical aspects (physical and psychological problems associated with the cancellation), information (how patients perceived the information they received about the cancellation), waiting time (patients already felt uncertainty and fear about being on the waiting list, and said the time of waiting felt long and distressing even before the operation was postponed) and staff reception (how the patients felt about the reception they received from the hospital staff).²¹

It seems that supporting patients during the pre-operative stage to mitigate the impact of psychological stress and negative feelings associated with waiting is a key aspect to ameliorate patient experience before surgery. Specifically, more recent and rich data supported by both quantitative and qualitative information would be crucial to better understanding the specific experiences and needs of cardiac patients waiting for surgery, especially given the additional pressures on healthcare and surgical waiting times in the post-COVID-19 pandemic period.

This study aims to provide evidence on experiences associated with being on the waiting list for cardiac surgery, along with preferences for the surgery which will help to shape future service improvement. Beyond employing a large sample and a mixed-methods approach to gather in-depth understanding of patient experience, the study design was co-produced with two experts with lived experience (also, co-authors of this publication) who were involved across all stages of the research including survey development. This ensured that the survey questions, and the research study overall, addressed issues relevant to our clinical population, and therefore would have a tangible impact on care and service improvement. Specifically, this study responds to two main questions:

1. What are patients’ experiences of being on a waiting list for elective cardiac surgery?

2. What are the factors that patients consider as most important to improve their experience of waiting for elective cardiac surgery?

Findings from this study could inform the design of a plan to better manage the experience of patients waiting for surgery, and future policy and service improvement strategy that could be potentially extended to other clinical populations.

METHODOLOGY

This is a mixed-methods cross-sectional survey, with explanatory concurrent design. It uses an online survey including both multiple-choice and open-ended questions.

Sample

The sample was selected using a convenience sampling method. Patients on waiting lists across the four participating sites (ie, Royal Brompton Hospital (RBH), Harefield Hospital (HH), St Thomas’ Hospital (STH) and King’s College Hospital (KCH)), between October 2023 and March 2024, were considered eligible if aged 18 years and over, waiting for elective cardiac surgery under any of the following surgical prioritisation categories P2 which includes patients requiring surgery within 4 weeks, and P3 and P4 including patients requiring surgery within 3 months and between three and 6 months, respectively. Patients waiting for cardiac transplantation are not included in any of the above categories and are treated with a different waiting list pathway.

Survey development

The survey was co-designed by researchers, people with lived experience and clinical investigators from each site. The development went through different stages in an iterative mode, including a pre-testing phase (see details on the study protocol paper).²²

The online survey consisted of 43 questions that were developed in an iterative process with people with lived experience. These questions included both multiple choice questions with a five-point Likert scale to rate the frequency and importance of statements (ie, higher scores indicating higher frequency and more importance), and open-ended questions where participants could elaborate on their responses. All questions offered the option ‘prefer not to answer’. The survey was subdivided into four parts: background information about demographic characteristics and cardiac diagnosis (part A), impact of the cardiac condition on life areas (part B), experience of using cardiac services while waiting for surgery (part C) and preferences about upcoming surgery (part D). As part of the questionnaire, a brief standardised scale for measuring anxiety and depressive symptoms, the Patient Health Questionnaire (PHQ)-4,²³ was included in part B. Specifically, it consists of four simple questions to assess level of psychological distress (two items for anxiety and two for depression symptoms), using a four-point Likert scale. It was chosen for its capacity to combine brevity with good psychometric properties. Indeed, the PHQ-4 has good internal consistency (Cronbach alpha=0.85) and construct validity through dose-response association with functional outcomes and mental health indicators. Also, the factor correlation of 0.6 indicates that the two factors are related but distinct.²³

Survey distribution

All patients on the waiting list were invited to participate in the study via text message and/or letter. Invitations were sent by the service manager(s) at each participating site; due to limited capacity of service managers, only patients that were on the waiting lists at two of the sites received invitations by letters along with text messages. In the text and/or letter, the survey was accessible through a weblink/address and/or a QR code as appropriate, which were created via the survey hosting platform, the Research Electronic Data Capture (REDCap).²⁴ REDCap is a widely used online platform to design and distribute surveys and capture data. The survey was accessible through REDCap and distributed using a public weblink/address and a QR code (generated by REDCap) which were sent to eligible participants by mass text message and/or letter. Once responses are submitted, they are automatically captured by REDCap. Responders were not asked to provide their names or disclose any personal details (eg, address, phone number, date of birth) in the survey.

On submission of the survey, participants were offered the opportunity to enter a prize draw of fifty e-vouchers worth £20. These were sent after random selection of 50 participants on survey closure across all sites.

Survey timeline

Each site made the online survey available for a total of 8 weeks. During this time window, each eligible participant received up to three text messages: the first invitation at launch of the online survey, a first reminder after 3 weeks and a second reminder after three more weeks. Each site launched the survey based on their availability and capacity: at KCH the survey was active from October 2023 to December 2023, at RBH and HH from December 2023 to February 2024 and at STH from January 2024 to March 2024.

Patient and public involvement

Two people with lived experience were recruited as part of the core research team (RK and JB) and were involved from the outset across all phases of the study. They contributed to survey development, study procedures, participated in the ethics review meeting, underwent a short training in qualitative data analysis so that they can participate in defining the codebook for the analysis and interpretation of results and dissemination (ie, co-authors for academic manuscript and rapid response to article, authors of a blog on the research programme website, speakers in a webinar to discuss contribution of persons with lived experience perspective in the study). Additional patient and public involvement (PPI) feedback was obtained from two group consultations with established PPI networks that were external to the core research team but within the healthcare partnership (ie, King’s Health Partners). Their feedback was mainly around language, question clarity and format of the survey. Suggestions were incorporated as appropriate (eg, the question about impact of the cardiac condition on sexual life was deemed as important and therefore maintained in the final version of the questionnaire) in the survey and a document recording these changes was provided to PPI representatives as evidence of their contributions.

Data analysis

Recruitment rate was calculated as the ratio of participants who agreed to participate/started the survey over those who were invited to participate, while the completion rate was the ratio of participants who fully answered all survey questions over those who agreed to participate. Descriptive statistics were used to report socio-demographic data and clinical characteristics of the sample.

To address our first research question about the experiences of being on a waiting list for elective cardiac surgery, we used the mean and SD, or frequencies and percentages for continuous and categorical variables as appropriate to describe the reported interference of the cardiac condition on six life areas (ie, daily activities, social activities, studying/work, hobbies, sex life, family and friends) and level of psychological symptoms as measured by the PHQ-4. Pearson correlation analysis was used to explore the association between ratings of interference of the cardiac condition on life areas and psychological symptoms (ie, for all variables higher value corresponds to more negative interference and more severe symptoms respectively).

Also, as there is evidence suggesting that waiting for elective surgery is more detrimental for women than for men,¹⁵ we compared the interference of the cardiac condition on life areas and psychological symptoms between the two gender groups using independent sample t-test.

Finally, using an independent sample t-test, we explored if participants who reported having a positive experience of using cardiac surgery services compared with those who reported a less positive experience differed in terms of psychological symptoms. The two groups were derived as follows: those who responded ‘Yes’ to items in part C of the survey (example of question: ‘Do you feel that the process of prioritising patients on the waiting list is clear and fair?’) were categorised into the group who had a positive experience of services, while those who responded ‘No’ or ‘Unsure’ were grouped together under the less positive experience of services category. The level of statistical significance for all the above models was two-tailed at p<0.05. Given the exploratory nature of this analysis, our primary objective was to identify potential patterns rather than to confirm specific hypotheses. Therefore, it was decided not to apply corrections for multiple comparisons in order to minimise the risk of type II errors because p value adjustments in the context of an exploratory study may obscure findings with clinical or practical relevance.²⁵ Instead, reporting effect size (ES) was deemed more appropriate.²⁶ Cohen’s d was used as a measure of ES with values of 0.2 as threshold of small, 0.5 of medium and 0.8 of large (0.8) effect.²⁷

To address our second research question, quantitative information about factors that patients consider as most important to improve their experience of waiting for elective cardiac surgery was complemented by qualitative data analysis.

Qualitative information obtained across all parts of the survey was analysed with inductive content analysis.²⁸ This followed five different steps: (1) familiarisation and immersion in the data by repeatedly reading all data to achieve a sense of the whole; (2) two researchers (MR and KLR) open coded a portion (10%) of the data (ie, each answer was considered as a data unit); (3) based on familiarisation and initial independent open coding, a first draft of the code book was created, which was also reviewed and amended by the two lived experience members (RK and JB); (4) the first draft of the code book was then iterated by repeatedly applying it to new portions (20%) of the data until the two researchers agreed on a final version of the codebook, and then (5) the entire data have been coded by one researcher (MR) with the codes sorted into categories.28,30

This study adopted an explanatory concurrent study to integrate quantitative and qualitative findings, with qualitative data used to explain quantitative results, specifically applying the ‘QUANT+qual’ approach wherein quantitative data were considered as the core component and qualitative data as the supplemental component.³¹ Integration of quantitative and qualitative results was done via triangulation of findings.³² This followed different steps: (a) sorting findings for quantitative and qualitative data to address our research questions; (b) determining convergence by specifying level of agreement (ie, full, partial or dissonance) or silence between quantitative and qualitative findings (ie, the finding is present only in one set of data), and providing a meta-inference of findings; finally (c) a completeness comparison was carried out by creating a unified narrative summary of findings. Findings will be tabulated side-by-side by comparing main numerical results (ie, percentages) and narrative data (ie, description of emerged categories and examples of quotes) along with description of type of convergence and inferences. A triangulation summary will narratively describe the completeness comparison in the Results section.

Quantitative analysis was carried out using SPSS version 27, and qualitative analyses using NVivo 14.

RESULTS

Sample characteristics

A total of 1041 patients were invited to take part in the survey. This number is composed of patients that were reached at least once during the survey’s 8-week time window. Out of the total 1041, 554 (53.2%) were the patients who accepted the invitation to take part in the survey. In turn, 274 of them (49.5%) fully completed the survey while the remaining 280 (50.5%) left the survey incomplete or partially completed. Therefore, the recruitment rate was 53.2% (554/1041), and the completion rate was 49.5% (274/554) (figure 1). Demographic and basic clinical information was provided by 343 participants. All available data were used for the analysis.

Figure 1. Flow chart of research participants’ recruitment. This figure shows the total number of participants who were invited to the survey, the number and proportion of those who accepted the invitation (recruitment rate), and completed the survey (completion rate). HH, Harefield Hospital; KCH, King’s College Hospital; RBH, Royal Brompton Hospital; STH, St Thomas’ Hospital.

Quantitative findings

As reported in online supplemental material A, 72.4% of the sample were at least 61 years old, and 67.2% described themselves as men. These proportions align with national data on adult cardiac surgery population (2022) wherein the reported average population age is 65 years old, and male patients constitute 75% of the proportion of male patients.³³ Almost 82% of the participants described themselves as White (British and any other White background), meaning that slightly less than 20% were ethnic minorities, which is higher than 11% as reported from prior data.³⁴ The level of education in our sample showed that around 50% reached at least secondary education. Although existing data suggest that patients undergoing cardiac surgery in the UK are more likely to come from socioeconomically disadvantaged backgrounds, typically associated with lower levels of education,³⁴ there is not clear evidence about school attainment in this clinical population. Approximately 60% of the sample were retired, and 30.3% were educated at secondary school level. The average waiting list time was almost 6 months. The three most frequently self-reported diagnoses were coronary artery disease (24.3%), aortic stenosis (24.0%) and mitral regurgitation (27.6%). The condition was not congenital for 59.6%, and only 12.7% had a previous cardiac surgery; among this latter group, 66.7% reported one previous cardiac surgery. Although only about half of the participants (52.2%) were aware of the date that they were added to the waiting list, the date of the surgery was unknown for most participants (83.1%). Almost the totality of participants (90.3%) reported they met with the surgeon to talk about their upcoming surgery.

Interference of cardiac conditions on life areas and psychological symptoms: When participants were asked about the frequency of the interference of their cardiac conditions on life areas, it emerged that at least half of the sample were impacted for ‘some of the time’ or more in all life areas, with sexual life and studying/working as the only exceptions to this. Specifically, daily activities were impacted for 63.7% of the sample, social activities for 52.2%, hobbies for 67.8% and relationships with family and friends for 70.9% (figure 2). Also, it emerged that most of the participants (85.7%) worried about their cardiac conditions, which was corroborated by results from the PHQ-4 whose mean value of 4.4 indicates a mild level of distress.²³

Figure 2. Interference of heart condition on life areas. This figure depicts how often participants reported being impacted by the cardiac conditions on different areas of life (bars).

Moderate strength correlations, ranging from 0.517 to 0.577, emerged between general level of psychological distress and level of interference of the cardiac condition on life areas (online supplemental material B). Similar strengths of correlation were found when the analysis was carried out using the two PHQ-4 subscales.

Comparison between women and men showed that women had significantly higher anxiety (as measured by the PHQ-4 anxiety subscale 2.8±2.2 vs 2.1±2.2; t(282)=2.218, p=0.027; ES=0.31) and worried more frequently about their condition (3.8±0.9 vs 3.6±1.0; t(287)=3.390, p<0.001; ES=0.53). Although only at a trend of statistical significance, the same pattern was found in the total general score of psychological symptoms (5.1±4.3 vs 4.1±4.1; t(282)=1.930, p=0.055; ES=0.23). Also, women reported more interference on social activities than men (2.8±1.4 vs 2.5±1.2; t(283)=2.025, p=0.044; ES=0.22), while men reported higher interference on sexual life (2.2±1.5 vs 2.9±1.5; t(223)=-3.344, p<0.001; ES=0.47).

Waiting list experiences and surgery preferences: Experience of cardiac surgery services while waiting for the operation suggested mixed experiences in the sample. Most or almost all participants reported having a positive experience because they were informed about waiting time length (58.2%), the risks associated with the surgery (82.4%) and had the right contact in case of problems or symptoms’ change (66.2%). Yet, there were some concerns for those who were unsure about the transparency of the waiting list process (62.7%), did not receive or were unsure about either having the right information on what to expect while waiting (57.7%) or guidance on where to seek emotional support in case they needed (70.8%). Additionally, 62.3% felt that the clinical team did not acknowledge the level of distress associated with being waiting for surgery (figure 3).

Figure 3. Experience of using cardiac surgery services. This figure reports the proportion of participants who responded positively or negatively/unsure about statements regarding experience of using cardiac surgery services.

As reported in figure 4, we found that having positive experiences of using cardiac services was associated with lower levels of psychological distress (PHQ-4 total score). Indeed, it emerged that lower levels of psychological distress were found in those who reported that the waiting list process was fair (p=0.007; ES=0.35), received information from the clinical team about what to expect (p=0.012; ES=0.29), had contact details of someone from the team in case of need (p=0.011; ES=0.31), felt that the clinical team acknowledged the level of distress associated with being on the waiting list (p=0.006; ES=0.32) and had guidance about where to seek emotional support while waiting (p=0.001; ES=0.45; online supplemental material C).

Figure 4. Comparison between participants who reported having a less positive experience of using cardiac surgery services (‘No/Unsure’ group) versus those who reported having a positive experience (‘Yes’ group) on psychological symptoms. This figure shows the level of psychological symptoms among participants who, across different statements about using cardiac surgery services, reported positive (‘Yes’) vs less positive (‘No/Unsure’) responses. PHQ-4 Tot, Patient Health Questionnaire-4 total score.

In terms of preferences for the upcoming surgery, the most important factor identified was the opportunity to meet the surgeon prior to the surgery (53.3%), followed by the timing of the surgery (33%). There was no strong preference when participants were asked whether it would be acceptable to be operated on by the first available surgeon from a team of experts (31.2% said ‘yes’, 34% ‘no’ and 32.6% were unsure). However, it was found that being operated on by a surgeon that was met at their consultation appointment was important for 78% of participants (ie, 19.5% considered that as moderately important, and 58.5% as very and extremely important). Within the group of participants who preferred to be operated on by the surgeon they met during the consultation phase, 64% were keen to wait up to two additional months for the surgery. Finally, having the surgery at a preferred hospital was the most important factor only for 37.3% of participants (online supplemental material D).

Qualitative findings

A total of 261 participants provided narrative responses to open-ended questions. A comprehensive list of 55 codes was identified using inductive content analysis. These codes were grouped into eight main categories: ‘Worrying’, ‘Daily activities, life and hobbies’, ‘Family, friends and social activities’, ‘Sexual life’, ‘Waiting list experience’, ‘Communication’, ‘Most important factor(s) for surgery’ and ‘Suggested future improvements’ (figure 5). Sub-categories, developed within each main category after grouping codes on meaning affinity, are reported below along with main results from each category (details and description of codes, along with key quotes, are provided in the codebook, online supplemental material E).

Figure 5. Overview of categories and sub-categories from qualitative data analysis about cardiac surgery’s waiting list experience and preferences. This figure shows how sub-categories grouped into the main eight categories emerged from the qualitative analysis. Note: numbers in brackets indicate codes as reported in online supplemental material D. Codebook from the Qualitative Content Analysis.

The category of ‘Worrying’ included 10 codes that focused on concerns, fear, uncertainty and worry about both the immediate and long-term implications of their cardiac condition, the surgery itself and the recovery process. The primary areas of worrying (sub-category) are around deterioration of physical health (for example, “Although I am glad that eventually someone has helped me. It makes me feel stressed and anxious that I won't get my operation before my heart is damaged.”), mental distress (“It makes me feel frustrated, powerless, helpless, anxious, angry.”), worrying about the future “[…]how much time to recover or complications and risk before and after surgery”) and financial concerns (“I worry I will lose my job, I have been off since xx/xx/xxxx. I worry my mental health will become so bad that I cannot function.”).

The ‘Daily activities/life and hobbies’ category deals with the impact of the cardiac condition on independence and quality of life. Specifically, the five codes in this category are about restriction on daily activities (“I used to help with housework hoovering & cleaning but have to limit it now”), social life and independence (“Used to be very active before I was diagnosed, swimming and playing squash, but don't feel confident to do this now.”), as well as working and volunteering (“Have been off work for a couple of months due to tiredness and not being able to manage my shifts of 12 hours plus 3 hours driving a day”, and “[…] cannot undertake electrical work as a volunteer”).

The ‘Family/friends and social activities’ category consists of five codes reflecting the interaction between individual’s health, social life and the role of family and friends. The ‘impact on relationships’ (sub-category) included statements about the detrimental effect that both the cardiac condition and the time spent waiting for surgery have on family members and friends (“My family and friends were shocked to hear that I need surgery and so are worried for me, especially as I've always been very active.”), particularly in relation to the reduced time spent together “unable to participate in some family activities”). Also, the psychological impact on loved ones was frequently reported (“My family and partner are under a lot of emotional pressure and constantly check on me”). However, statements about the support of family and friends during the difficult time also emerged (“Family understand and are supportive without making a fuss.”).

The ‘Sexual life’ category includes three codes grouped under two sub-categories consisting of the impact of cardiac condition on sexual activity, interest and libido (‘impact on sex life’ sub-category), and on the absence of impact (‘no perceived impact on sex life’ sub-category). The most frequent code on this category was ‘Difficulty/inability to have sex and/or negative impact on sex due to physical cardiac symptoms’ (“Both my wife and I are a little nervous about sex since receiving the diagnosis. Also, anxiety is not conducive to a good sex life.”, and “Sex is out of the question as fear of heart attack is very real”.).

The ‘Waiting list experience and feelings’ category grouped a total of nine codes reflecting the impact of length of waiting on their life (sub-category), which included specific experiences like the feeling of life being on hold (“Feel like I am in limbo and cannot plan anything”), and negative emotions such as frustration and uncertainty (“I want it [surgery] to happen soon and yet I don't at the same time!”). Also, positive attitude towards waiting (sub-category) was identified describing overall positive feelings about being on the list for surgery (“I just take life easy and try not to stress”, and “I do get nervous about having the operation, who wouldn't, but I can usually control my stress by, sewing, colouring and meditating.”). Further, this category included ‘lack or poor monitoring and other health conditions’ (sub-category) which included experiences and feelings related to not being physically monitored, and the ‘impact of surgery cancellation’ (sub-category) consisting of statements around feeling frustrated and/or emotionally negatively affected by the cancellation of a scheduled surgery (“Very anxious as my surgery date has already been cancelled once and I have not yet received an alternative date”).

‘Communication’ consisted of all six codes grouped into three sub-categories about good, poor communication and surgery preparation. Communication between the patient and the clinical team highlighted mixed experiences and included both positive feelings (“Anxious at times, and worry about surgery better when I talk to the medical team for reassurance”) and less positive experiences (“I was given different timescales by different people at the hospital and the handover from [hospital name] to [hospital name] could have been better achieved with more personal communication with me”). Also, this code included the communication with the service with regard to care coordination while waiting (“I was referred on [date] from [hospital name] to the [hospital name], due to the surgeons secretary’s error did not get appointment till [date], even though I rang on weekly basis.”) and the impact of this communication on the patient (“uncoordinated, as I don't know when I'll have to pause my life/work for the procedure and am unable to plan ahead”).

The ‘Most important factors for surgery’ category included six codes covering a range of priorities and preferences related to the crucial role played by the surgeon (“My preference for surgery to be performed by [doctor’s name] is made because, having met him, I felt confident and reassured that I would be in very good hands.”) and the clinical team in general (sub-category) (“I am very confident in [doctor’s name] and his team”), along with the importance of time (“Although the operation is rather daunting, the waiting is worse. The sooner the operation is over and done with, the better.”), and the personal choices about location (sub-category) (“I would like it to go ahead as planned, but the sooner I have it done the better, but at [hospital name].”). It also emerged that making a decision about the surgery is challenging (sub-category) due to the importance of balancing options (“This is a difficult question as I prefer an early operation but wouldn't be keen to travel many hundreds of miles for surgery.”).

Finally, the ‘Suggested future improvements’ category included 12 codes grouped into four sub-categories. These covered all suggestions about potential improvements for the future and consisted of the importance of better ‘Communication with the clinical team and the services’ (sub-category) (“Having written information that I can read and digest in my own time.”, “having a number to call just for anxiety and worry. I would not phone a clinical line as obviously the staff are very busy”), and receiving more information about the date of the surgery and an update on the waiting list position (sub-category) (“Monthly updates on waiting list position. Updates on how many ops completed on a monthly basis. Actually make proactive contact even if no progress.”). Also, some suggestions were made about the possibility to have support from peers (sub-category), and different management of appointments (sub-category) particularly in relation to continuity in contact and care, and preference for in-person visits during the waiting period for surgery (“Face to face appointments feel better for me. Some continuity with speaking to the same person would be better rather than a different person every time.”).

Triangulation of quantitative and qualitative data

The experience of worrying came across as a crucial aspect from both sets of data as suggested by the high percentages of responders complaining about frequent mental distress which qualitative data helped to better explore in terms of types of concerns (eg, physical, financial, surgery and recovery). Full convergence was also found about impact of the waiting list experience on daily activities, hobbies as well as relationships with family and friends, which were affected by the experience of being on a waiting list for surgery. That was supported by figures describing that much of the sample complained about frequent interference on their daily activities and relationships, and by statements bringing examples to what extent their lives and loved ones were impacted. Similarly, full convergence emerged about waiting list experiences which highlighted the link between the quality of experience of using cardiac services and the level of psychological distress (it was found that having a negative experience was frustrating and leading to further unsettling feelings).

There was partial convergence around communication. This is due to the multifaceted nature of this category which highlighted mixed patients’ experiences. In fact, while there was alignment on some aspects (ie, communication with the surgeon/clinical team), some others, like communication with the services, seemed to be conflicting with quantitative data suggesting, for instance, that a good proportion of the sample had the right contact in case of problems or symptoms’ change, while the majority of statements from qualitative data highlighted lack of communication and/or guidance about emotional support. Regarding the sexual life category, there was partial convergence from the qualitative data because it emerged that sexual life was impacted, but it was not possible to determine from qualitative data if the interference on this area was mainly perceived in the male participant group as emerged in the quantitative data.

There was complete agreement between both datasets regarding the most important factors influencing surgery, highlighting the crucial role of the clinical team, particularly the surgeon. Being operated on at a preferred hospital and the timing of the operation were equally important. No suggestions for future improvements were reported, as these findings were derived solely from qualitative data only.

A tabulated summary of the above results is presented in the online supplemental material F.

DISCUSSION

Principal findings

This study used an online mixed-methods survey to explore the experiences of patients waiting for elective cardiac surgery, preferences for the upcoming surgery and suggestions to improve the experience of being on the waiting list for future patients. Our key results suggested that the experience of waiting generates anxiety and impacts various aspects of life such as daily activities, relationships with others and hobbies. This has a psychological impact that is reflected on ratings of psychological distress and supported by several types of worrying and negative feelings associated with the uncertainty of the surgery date, as emerged by qualitative data. Good and clear communication, trust in the clinical team and being operated on by a known surgeon emerged as factors able to alleviate stress associated with waiting. Finally, it seems that updates on the progress of the waiting list along with regular health monitoring and having a key person to contact in relation to the surgery are crucial for enhancing patients’ experiences.

Comparison with other studies

Our response rate was 49.5% which is lower than the one reported in a previous similar survey (66%) on this clinical population in the same catchment area.²⁰ Yet, that survey was shorter than the one used for this study, and paper copies posted to patients’ home addresses might have contributed to higher chances of being completed. Indeed, it is plausible to assume that given the age range of our sample, a digital survey might have discouraged some from engaging.

In line with a recent review about the mental burden associated with being on a surgery waiting list,¹⁵ we found that almost the entire sample (about 86%) frequently worried about their cardiac condition, which is very similar to prior reports in cardiac surgery populations.^{13 18} The relevance of worrying corroborated previous evidence,^{13 17 18} as an ubiquitous multifaceted theme: from negative psychological states (eg, anxiety, depression and frustration) to fear linked to the surgery, recovery time and the future more broadly (including financial challenges of reducing and/or stopping work). Differently from results by Petrie and colleagues¹³ suggesting that financial concerns were not common, our participants reported concerns about consequences of being off from work and the impact on providing for the family, which resonated with findings from other research.³⁵

In line with previous data, it emerged that the length of the waiting list was not associated with level of psychological distress,^{15 17} and that being female might be a predictor of higher levels of anxiety while waiting for coronary artery bypass grafting.^{8 36} These data underlie the importance of providing support to mitigate the psychological impact of waiting for surgery on patients whose precarious cardiac condition could be put under further strain by the physiology of anxiety and depression.^{37 38} Moreover, there is evidence that women might require particular attention given evidence showing that peri-operative anxiety and depression in this group increased the likelihood of postoperative complications such as extended length of staying and hospital re-admission.³⁹

Up to 70% of the sample, substantially higher than in other research reporting 39–48%⁴⁰ complained about the interference of the illness and waiting list on their life. To the best of our knowledge, along with Carr and colleagues,⁷ our study provided a detailed account about how daily life felt restricted by the experience of waiting for surgery. It highlighted how the inability to carry out daily activities and recreational, sportive and social activities with others and by themselves (eg, hobbies, driving) impacted not only the individual, but also those around them. This applied to sexual life as well, that due to symptoms such as breathlessness and fear of physical exertion was impacted for a small proportion of participants (20%). This is substantially lower than almost 54% reported elsewhere.¹⁸ Also, a good number of participants reported having reduced or lack of libido, which could be age-related in our sample.

The experiences associated with the use of cardiac surgery services while waiting were mixed. Whereas there was a substantial proportion of participants who had a positive experience (eg, were informed about the length of the waiting list, the risks associated with the surgery and had a contact to reach out to in case of problems), about half of the sample reported a less positive experience in relation, for instance, to transparency of the waiting list process. This generated frustration and potentially undermined the trust towards the healthcare team/system, which in turn supports external evidence suggesting the strong desire for regular communication about the waiting list and prioritisation criteria.¹⁵ Also, lack of clear information about the waiting list process and lack of guidance from the clinical team about where to seek emotional support in case they needed contributed to the overall poor experience. Communication did play a crucial role during the waiting list time. Indeed, while some participants reported excellent levels of communication with the team which contributed to reassurance, others who complained about lack of or poor communication reported being frustrated. In fact, our study highlighted that psychological distress was higher in the context of poor communication, frustration and anxiety. Conversely, good communication with services helped patients to feel less anxious about the situation, which aligns with previous studies.¹⁵ One theme that was identified as strong was the feeling of ‘life being on hold’. This came up in previous research in populations waiting for kidney and lung transplant41,44 and orthopaedic surgery.⁴⁵ Our participants reported frustration for not being able to make any medium or long-term plans because of the unknown surgery date. Also, corroborating existing findings,^{7 15 43} a general negative impact of the ‘uncertainty of the date’ and the ‘difficulty about waiting longer than expected’ was very often reported. Nevertheless, similar to other studies,^{7 16} some participants reported positive attitudes and feelings such as relief at being on the waiting list and under the care of a competent clinical team, as well as efforts to cope positively while waiting (eg, maintaining a normal life, and using distraction strategies).

Trust and confidence in the surgeon and more broadly on the clinical team were paramount. Meeting the surgeon prior to surgery was considered the most important factor, followed by timely operation, and a subgroup of participants was willing to wait up to 2 months longer to be operated on by their preferred surgeon. However, many participants expressed the importance of being operated on soon and that balancing speed and knowing the surgeon was not easy. For some participants, having surgery in a specific hospital was important for practical reasons. Patient’s preference about the upcoming surgery addressed a key aspect of patient-centred care, namely the involvement of patients in decision making. Despite existing evidence suggesting both patients and surgeons are in favour of shared-decision making,⁴⁶ there are still different barriers that hinder a proper implementation of this approach such as educational barriers, patients autonomy and expectations from family.⁴⁷ Indeed, our data suggested that balancing risks and options is challenging for the patient who is unsure about choosing one factor over another and might have consequences for their health. This might reflect previous evidence from the review wherein only a low proportion of patients (11%) preferred independent decision-making vs 25% for surgeon guidance.⁴⁶

Finally, suggestions to improve the experience of waiting for surgery in the future were mainly around the date of the surgery. Having a date and knowing it in advance would facilitate physical and psychological preparation for the surgery. Improving communication was found to be another crucial recommendation. This could be implemented in different ways, like by providing regular updates on waiting list progression and health monitoring while waiting. Also, offering a number to call for questions about the surgery, and information about the potential impact of waiting, and what symptoms to look out for would improve the experience of waiting. All these suggestions came across as a way to reassure patients and make the waiting period less stressful for the person and their carers.

Strengths and limitations of this study

This study has some strengths, including the large sample size of patients across four major tertiary cardiac surgery services in London. The possibility to distribute the survey online increased the chances to reach a large number of patients within a relatively short time frame. Importantly, the survey was co-designed with people with lived experience, thus ensuring relevance to the target population, understanding of and appropriateness of questions and length. Finally, the mixed-methods design allowed us to conduct an in-depth analysis of both quantitative and qualitative data, which to the best of our knowledge is the first study of this kind in cardiac surgery population.

Some limitations need to be acknowledged. This was a convenience sample, and it was not possible to compare differences in experiences across ethnic backgrounds due to the disproportion of participants that reported White British ethnicity. This can be due to the online nature of the survey which might have limited accessibility due to digital exclusion and posed some language barriers (ie, it was only offered in English) thus limiting or excluding certain ethnic groups and non-native English speakers. In turn, this may indicate that our sample is not fully representative of the population of individuals waiting for elective cardiac surgery in the metropolitan area of London. Lack of data on ethnicity, along with lack of socio-economic status information (which was not collected as it was perceived as a potential barrier to survey completion during the development phase of the survey), did not allow us to explore whether health inequalities in accessing cardiac surgery existed in this large NHS sample.³⁴ Also, because the response rate was below 60%, the potential for non-response bias should be considered, as responders may differ from non-responders in their socio-demographic characteristics or perspectives. Therefore, despite our sample characteristics being consistent with those reported in similar populations, our findings would need to be interpreted with some caution. Finally, due to the exploratory nature of this cross-sectional design, only correlation analysis could be done while causality between variables could not be tested.

Conclusion and implications

This study suggests that waiting for elective cardiac surgery can be an emotionally and practically challenging period. This impacts patients’ daily activities as well as relationships and ability to plan and think about the future. Improving communication with surgery services, providing regular updates on the waiting list process, signposting to emotional support resources and building trust with the surgeon and the clinical team are crucial to alleviate patients’ stress associated with waiting for surgery. Although aspects of this study might be specific to cardiac populations, these findings could also inform better management of other clinical waiting lists.

Data availability statement

Due to participant confidentiality, the dataset cannot be publicly shared.