Patients have great expectations, but there is more to do

Brearley et al. have published a qualitative study ‘nested’ within a randomised controlled trial. They have examined patients' expectations and their experience of two different analgesic regimens [1]. The authors used a grounded theory technique; this is a general methodology for developing theory that is ‘grounded’ in data systematically gathered and analysed. Many readers may not be familiar with this complex methodology, which is structured, yet flexible. The methodology chosen in this particular instance is that the researchers deliberately selected participants for lengthy interviews in an attempt to answer the research question. Twenty patients that were included in the original randomised controlled trial were selected, contacted and interviewed 4 weeks after surgery and their expectations were explored. The authors could equally have chosen to use surveys, focus groups or other means of collecting the data [2], which would probably have been less time-consuming but likely would not have produced the rich and diverse data presented. The quality of grounded theory depends on the researchers' experience, knowledge and skills, the methodological compatibility with the research question itself, and the precision with which the methods are utilised. All these criteria have been met by Brearley et al. and they are to be congratulated. The qualitative study was part of a sub-analysis of a randomised controlled trial in which 133 patients were allocated to one of two groups receiving a thoracic epidural or rectus sheath catheters [3]. The surgery was heterogeneous in that a quarter of the patients had surgery for bladder cancer with the remainder mostly having surgery for colon cancer; however, the two groups were well-matched in terms of baseline characteristics. The patients receiving a thoracic epidural had it sited awake under aseptic conditions at a variable spinal level depending on the type of surgery and then received an epidural infusion consisting of a bupivacaine/fentanyl mixture. The other group of patients had bilateral rectus sheath catheters inserted using ultrasound guidance after induction of anaesthesia. Thoracic epidural anaesthesia provided better initial postoperative analgesia, but only for the first 24 h; at 72 h the rectus sheath catheters provided improved analgesia with a lower incidence of adverse effects. Of course, being a randomised controlled trial, patients were not consulted or given a choice as to which technique they were allocated and, in my view, the choice of analgesic regimens was unfortunate; thoracic epidurals were sited whilst the patient was awake, but the rectus sheath catheters were sited after anaesthesia was induced. Siting of a thoracic epidural in an awake patient is challenging and can be uncomfortable for them, in turn adversely affecting their overall experience. Furthermore, the daily problems encountered while managing an epidural service limit their potential benefits: more than one-fifth of patients still experience severe pain and hypotension; technical failure is not uncommon; and 1 in 8 patients have their epidurals removed at night by ward staff because of pressure on beds [4]. All of these factors can impact on the patient experience. For midline surgical incisions, there are alternative modes of analgesia apart from thoracic epidural or rectus sheath catheters [5] that could have been considered and may well have resulted in an improved experience. These include single-shot spinal anaesthesia using a combination of local anaesthetic and diamorphine [6]; erector spinae plane (ESP) or transversus abdominus plane (TAP) block; [7] lidocaine infusion [8]; or opioid-based patient-controlled analgesia. This particular randomised controlled trial had dynamic pain scores at 24 h after surgery as its primary outcome measure, and whilst incisional pain has previously been cited by patients as an important issue to avoid (together with nausea and vomiting and gagging on the tracheal tube) [9] it could be argued that when planning trials we should be including outcomes which are more pertinent to patients' expectations. Boney et al. [10] found widespread inconsistencies in clinical trial outcomes and reporting. They performed a modified Delphi process in order to develop a core set of important outcomes for both clinicians and patients that included peri-operative complications, resource use and short- and long-term recovery outcomes. As clinicians, we are rightly increasingly focused on what outcomes matter to patients [11], being less concerned with small reductions in pain scores immediately following surgery and more on establishing a smooth peri-operative pathway, getting the patient home and back to a normal lifestyle as quickly as possible [12]. This includes the resumption of everyday events such as driving, shopping, gardening and sporting activities. It is important to explore expectations in order to identify what it is that patients particularly worry about during their healthcare experience, with the aim of alleviating those anxieties, improving their overall experience and ending up with a satisfied patient. Patient experience and patient satisfaction are often used interchangeably, but of course they are not the same. Whilst the experience itself can be measured by asking patients whether their expectations were met during their peri-operative care pathway, patient satisfaction looks at whether the process actually met these expectations. Patient satisfaction is an individual's cognitive evaluation of, and emotional reaction to, their healthcare experience and has more to do with their expectations than the actual experience itself. Two patients who receive the same care, but who have different expectations as to how that care is delivered, will give different satisfaction ratings. There are various ways to gather information on patient expectations and the methodology used by Brearley et al. is a useful one. Indeed, in the USA the Agency for Healthcare Research and Quality [13] has developed Consumer Assessment of Healthcare Providers and Systems (CAHPS) surveys, which are tools for organisations interested in assessing the patient-centredness of the care they deliver and identifying areas for improvement. Whilst CAHPS surveys do not specifically ask patients how satisfied they were with their care, they do ask them to report on the aspects of their experiences that are important to them. The surveys ask well-tested questions using a consistent methodology across a large sample of respondents, generating standardised and validated measures of patient experience that healthcare providers and other patients can rely on. If we do meet a patient's expectations and they are satisfied, we have contributed to the success of their particular healthcare experience. However, overall success should be considered multifactorial and consists of patient-, population-, healthcare- and training-centred outcomes [14]. Patients, particularly those with cancer, are understandably scared and anxious, and the study by Brearley et al. mainly included white male patients with a cancer diagnosis. These are non-modifiable patient factors [15] and may not be transferrable to other groups of patients [16]. However, there are modifiable patient factors that contribute to satisfaction, including patient communication and education [17]. One potential problem with the group of patients receiving the thoracic epidural whilst awake is the nocebo effect, namely the non-pharmacological adverse effects of an intervention. Nocebo effects arise from negative expectations, e.g. wording that may predispose the patient to expect adverse events such as pain or nausea. Evidence suggests that how anaesthetic information is presented may influence patient treatment outcomes [18]. Even well-intended procedural warnings can function as nocebo, e.g. warning the patient of a ‘sharp scratch’ when performing a thoracic epidural [19]. Indeed, Brearley et al. quote one patient as saying “Look, I do not like needles. If there's one thing I am terrified … I'm not terrified about the cancer, [but] I don't like needles.” Functional MRI studies have shown that expectation of increased pain causes increased neural activity in the hippocampus and midcingulate cortex. Valanced words such as ‘safe’ are more likely to result in positive outcomes than phrasing that could have potential nocebo effects, such as ‘you will need strong painkillers’. The latter term suggests the likelihood of severe pain rather than using therapeutic terms focusing on comfort, healing and recovery. One study showed a dominance of phrases with negative content in the presentation of anaesthesia information provided to patients [20]. Clinicians need to be aware of inadvertent generation of nocebo-weighted communication with patients [21]. The sharing of comprehensive peri-operative information and a professional, yet personal, interaction with our patient and their family is crucial to ensure safe and satisfactory outcomes for patients undergoing surgery. Anaesthesia is an essential component of surgical care, hence patients must be provided with clear, balanced and unbiased information. The Royal College of Anaesthetists has established standards for peri-operative anaesthetic information to ensure that patients receive high-quality information tailored to their individual needs [22-24]. These standards include information on the available anaesthetic options; associated risks and benefits of different anaesthetic techniques; consent; and the pre-operative preparation required. This health information has been through a professional and robust production process and has been recertified under the Patient Information Forum Trusted Information Creator (PIF TICK), the UK's independently assessed quality mark for health information [25]. It has been estimated that 80% of adult surgical patients experience high anxiety levels [26] and this is neatly highlighted in the study by Brearley et al. We can, and should, provide sufficient information, including signposting to helpful videos such as that provided by PreOp® (MedSelfEd, Inc., Boston, MA, USA) as well as showing patients appropriate respect and empathy. We should place more emphasis on therapeutic outcomes and effective mitigation strategies of anaesthesia risks and should revise, reword and exclude where necessary, potential (albeit unintended) nocebo effects of anaesthesia information leaflets and websites. Patients and their families now have greater understanding and rightly demand more involvement in their medical management than previously. Patients must feel personally valued, involved in shared decision-making, offered alternative analgesic options, kept comfortable during their treatment pathway and feel that the peri-operative team care about them as unique individuals. The ability to participate in analgesic decisions has been shown to be the most reliable predictor of patient satisfaction [27]. Understanding the patient experience and managing their expectations is key to success. Realistic expectations and patient-reported outcome measures are important determinants of satisfaction. Patient experience, and ultimately their satisfaction, encompasses the whole range of interactions that they have with the healthcare system. By examining all aspects of the patient's peri-operative journey we can, and should, respond to individual patient preferences, needs and values in order to incrementally improve their care. Whilst we have improved in these aspects over the last few years, we can certainly do better. CB is an editor of Anaesthesia. No other competing interests declared.