Prioritising patients in research and practice – why and how?

Introduction

The evaluation of healthcare services has for some time incorporated a clinician-centred approach, with clinician-only reported outcomes often taken as the sole arbiters of treatment success. Over the past 20 years, there has been a drive to incorporate patient perspectives in assessing treatment outcomes and indeed in undertaking research, through the introduction of various patient and public involvement (PPI) groups (Baines and de Bere, 2018; Patel et al., 2016). Additionally, numerous government policies and changes in the National Health Service (NHS) have highlighted the need for service user involvement in informing healthcare delivery, therefore ensuring that care is responsive to patient needs (DoH England, 2012; NHS England, 2015; Travess et al., 2004). This has led to the notion of evaluating treatment success from the patient’s perspective, through the use of patient-reported outcomes (PROs). Accounting for patient values is central to evidence-based medicine, and integration of these values with clinical research evidence is necessary to enable informed decision-making (Sackett et al., 2000). Nonetheless, patient-reported outcome measurement tools (PROMs) continue to subordinate to clinician-centred outcome measures in biomedical research and patient input has been used to develop just 10% of existing PROMs (Wiering et al., 2017).

PROMs permit self-assessment of health and quality of life impacts resulting from treatment with no undue external influences. Robust patient-reported experience measures (PREMs) may also assist in determining whether our health systems deliver on aspects of care that specifically matter to patients (Ríordáin and Wiriyakijja, 2017). Following Lord Darzi’s report (2008) highlighting the importance of measuring outcomes and experiences from the patient’s perspective, there has been an emerging interest in employing PREMs alongside other measures for measuring quality of care. Subsequently, the NHS Outcomes Framework (2010) and the Kennedy report (2010) emphasised the need to develop age-appropriate measures in order to better understand and ultimately improve patients’ experience of healthcare. This was also recognised in the recent NHS Commissioning Guidelines for Orthodontics (2015), where supplementation of normative outcomes, such as the Peer Assessment Rating index, with PROMs and PREMs was suggested, in order to measure and report quality of treatment and benchmark services (NHS England, 2015). Notwithstanding this, there is a lack of accepted and validated tools and some scepticism remains as to whether their uptake is practical in a clinical setting; the adoption of PREMs and PROMs therefore remains relatively limited.

Patient satisfaction

Keshtgar and D’Cruz (2017) reported a 5-fold increase in scientific publications relating to patient satisfaction between 1980 and 1996. They suggest that this could be attributed to market consumerism to an extent but also to rivalry between care providers, who might seek and advertise patient satisfaction results to distinguish themselves from competitors (Keshtgar and D’Cruz, 2017). Measures of satisfaction are important in eliciting patient preferences with the process and outcome of treatment and can be used both as a service evaluation tool and a PROM, highlighting distinctions between different interventions, experiences and outcomes of care. Appropriately designed patient satisfaction tools can also expose areas of dissatisfaction or concern within a service, allowing for important changes to be implemented by acting on feedback and subsequently improving the service.

Although feedback from patients is now considered an integral part of healthcare delivery and assessment, the applicability of certain feedback tools, such as satisfaction surveys, in portraying patient experiences with treatment has been contested. Salisbury et al. (2010) noted only a 4.6% variation in satisfaction ratings between practices, while the variance increased to 20% when relating this to reported experiences with treatment. However, patients often differ from clinicians in terms of expectations of treatment and its delivery. As patient satisfaction surveys are often designed and developed without input from patients, it would be intuitive to expect a failure to resonate fully with patient perspectives, thus constraining their adoption and subsequent value as a quality assessment tool (Ríordáin and Wiriyakijja, 2017; Baines and de Bere, 2018).

Patient Experience

Allied to clinical effectiveness and safety, patient experience forms one of the three key domains of quality assessment (Black et al., 2014; DoH England, 2012). An association between patient experience and treatment quality has been demonstrated in a systematic review of 55 studies supporting the use of patient experience measures as quality indicators (Keshtgar and D’Cruz, 2017). Although patients are unable to assess the medical competence of a clinician, it is suggested that validated and appropriately administered PREMs are more reliable measures than satisfaction ratings in reflecting treatment quality (Ríordáin and Wiriyakijja, 2017). This stems from the ability of PREMs to provide insight into the details of patient experience, thus informing specific changes resulting in an upward spiral in quality of care.

Despite this, a lack of consensus persists regarding the optimal PREM make-up, leading to the introduction of numerous ‘experience’ and satisfaction questionnaires, which have not been widely publicised or adopted. The NHS Friends and Family Test is perhaps the only PREM that has been promoted and incorporated in clinical practice in the UK in recent years; however, this consists of just a single rating question limiting the ability to provide a holistic account of patient experience (Ríordáin and Wiriyakijja, 2017). On the contrary, the NHS Choices website for recommending dental practices contains questions relating to involvement in decision-making, information transfer, as well as treatment outcome (Keshtgar and D’Cruz, 2017). Finally, the NHS Commissioning Guide for oral surgery and oral medicine (NHS England, 2015) suggests that appropriate questions should centre around the provision of information regarding the intervention, risks and benefits, post-operative instructions and management of pain and anxiety (Ríordáin and Wiriyakijja, 2017). In that respect, it has been shown that shared decision-making through patient involvement leads to better patient adherence and subsequently increased satisfaction with treatment outcomes (Ryan and Cunningham, 2018).

Patient-reported outcomes in orthodontics

PROMs are very useful in underpinning the relationship between health and general well-being and in enhancing our understanding of factors influencing treatment decisions. Such tools readily exist in the literature, and in orthodontic research are exemplified by the use of oral health-related quality of life (OHRQoL) outcomes. The dimensions of OHRQoL correspond with the FDI’s (World Dental Federation) definition of oral health as ‘multi-faceted and includes the ability to speak, smile, smell, taste, touch, chew, swallow and convey a range of emotions through facial expressions with confidence and without pain, discomfort and disease of the craniofacial complex’, thus reflecting the physiological, social and psychological attributes that are integral to quality of life (FDI, 2016). Research employing OHRQoL measures can therefore depict inequalities in oral health and can help inform public policy and commissioning of services accordingly (Sischo and Broder, 2011).

In our recent analysis of interviews and focus groups involving 35 adolescent patients at different stages of orthodontic treatment in three different regions in the UK, we also found that patients were commonly concerned about issues that centred on the dimensions of OHRQoL, with a desire to improve these with treatment. Although research evidence suggests that malocclusion has a negative impact on OHRQoL (Dimberg et al., 2015; Javidi et al., 2017), outcomes that resonate more with patients such as quality of life and function remain infrequently measured in orthodontic trials (Tsichlaki et al., 2018). This finding was mirrored in a broader analysis of dental outcomes (Fleming et al., 2016), suggesting that this unduly narrow focus is not confined to orthodontics.

Measurement tools and their development

It has been postulated that the routine integration of PREMs and PROMs in clinical practice could enhance decision-making and service provision, thus transforming healthcare (Black, 2014). It is therefore important that any experience or outcome measurement tool is clearly defined and relevant to all stakeholders, including consumers and providers of care alike. The need to imbed PPI from initial planning stages to development and dissemination of such tools is therefore clear.

One possible solution is to incorporate qualitative methodology either as a standalone research technique or in conjunction with quantitative methods to develop relevant, tailored tools that can be used to more accurately measure patient perceptions. Qualitative research is increasingly being used in health services research, as it allows understanding of complex phenomena; exploration of patient factors; and examination of processes that underlie behavioural patterns and concepts that are not easily measured and which are less suited to quantitative methods. A more holistic understanding of problems is therefore likely than with either research approach alone (Creswell and Plano Clark, 2011).

During the development phase, PREMs or PROMs require testing for validity, reliability and responsiveness in the relevant population, to ensure that questions and outcomes are reflective of patients’ overall journey and assessment of care. Agreed measures can therefore be developed promoting robust comparisons between sites and studies.

Qualitative research and orthodontic instrument development

Within orthodontics, qualitative methods have been used to assess the impact of and motivations for treatment but also to test and inform development of appropriate questionnaire-based instruments. For instance, Mashman et al. (2010) explored the face and content validity of the 16-item short-form of the Child Perceptions Questionnaire 11–14 (CPQ ISF-16), using qualitative interviews with young people with malocclusion in their homes and found shortcomings with the former, suggesting that a malocclusion-specific instrument may be more appropriate for this group. Patel et al. (2016) and Benson et al. (2016) described the development of a condition-specific questionnaire to assess the impact of malocclusion, which was informed using qualitative enquiry using semi-structured interviews with young people referred for orthodontic treatment in two teaching hospitals in the UK. Gassem et al. (2016) also used qualitative interviews to develop a questionnaire-based measure specifically for patients with hypodontia. Similarly, Travess et al. (2004) conducted focus groups with patients to inform the development of a questionnaire examining the process and outcome of combined orthodontic and orthognathic treatment as well as telephone patient interviews to test its validity.

Clearly, qualitative methodology is becoming more integral to orthodontic research, with further research essential to the development of instruments that are fit for purpose and ultimately influential in the delivery of patient care.

Orthodontic PROMs and PREMs: Future developments

While use of PROMs both in orthodontic research and practice is increasingly encouraged (Benson et al., 2016), patient experience is currently not routinely measured in orthodontics in a consistent and uniformly accepted manner. Similar to ongoing work geared at developing standardised outcomes for use in orthodontic trials a PREM tool could be developed and adopted (Tsichlaki et al., 2017). If such research is to provide meaningful evidence to inform decisions on practice and policy, it is essential that outcome and experience measures resonate with from public health professionals, patients and the public alike.

PREMs are increasingly being developed using PPI in areas of medicine, such as inflammatory and rheumatoid arthritis (Bosworth et al., 2015); urgent and emergency care (RCPH with Picker Institute, 2012); chronic obstructive pulmonary disease (Walker et al., 2017); and chronic heart failure (Lagha et al., 2012). However, development and validation of such tools within dentistry has been scarce. Within our specialty, the only specialty-specific PREM that currently exists is: “Were you able to book an appointment with your NHS orthodontist at a time that suited your schedule?” (NHS England, 2015). However, there is little information pertaining to its development and the narrow focus of the question limits its applicability to the multi-faceted lengthy care pathway orthodontic patients experience.

The need to develop and validate a unified, robust PREM instrument for children and young people undergoing orthodontic treatment incorporating patient views is clear. This could subsequently be used for audit and service improvement purposes complementing other quality indicators. Similarly, work on development of an agreed core outcome set in orthodontics should assist in better focussing ongoing research efforts and, by ingraining patient-centred impacts of treatment, may assist in more clearly elucidating important health-related benefits of orthodontics.