Introduction

Labelling patients who miss an appointment with a healthcare provider as a “failure to attend” (FTA) may have unintended negative consequences on their future healthcare engagement and subsequent quality of life. The FTA phenomenon is not unique to the context within which this paper sits; it is well documented in the existing literature, most commonly in discussions about finite healthcare resources, inefficiencies and waste [1]. Further, it is not unique to healthcare. FTAs also appear in the criminal justice system, whereby people who do not appear as scheduled in court are labelled FTA. The difference in that context is that failure to attend may well result in incarceration [2]. FTA in the healthcare setting does not incur this type of penalty but has been reported to make the patient feel like they are in purgatory [3]. The current evidence shows that health providers have seriously considered other punitive measures for FTA patients, such as imposing a financial fine, or implementing reminder strategies such as SMS reminders about impending appointments [1, 3]. Consistent across the this research is the frequency of patients ‘forgetting’ appointments and the relationship between referral time to actual appointment, with limited research into the patient characteristics that may predispose them to failing to attend.

Patients living in the community with chronic, complex co-morbidities is recognised as the preferred model of care and is being adopted across the globe in an effort to make healthcare provision more cost effective and therefore sustainable [4]. However, the link between disengagement with healthcare in the form of FTAs for people with chronic, complex diseases is not apparent. People living with chronic, complex diseases are particularly vulnerable to flaws in the system and are arguably some of the most vulnerable people in the community [4]. It is therefore important that the relationship between living with chronic, complex disease and failing to attend outpatient appointments is explored further. Better understanding is required about the reasons for FTA, and the impact of being labelled FTA, so that appropriate interventions to address organisational processes can be recommended. This paper reports specifically on the phenomenon of FTAs as part of a larger study evaluating the role of the nurse navigators.

Background

People living with complex chronic conditions require care and intervention across multiple levels of health service and treatment modalities, from specialist clinical services through to community care services [5]. Internationally, nurse-led coordination is becoming a popular approach to care for patients with multiple conditions, in an effort to reduce costs, support continuity in care and to provide a more individualised service, based on the long-term needs of such patients [6, 7]. In Queensland, Australia, nurse navigators provide the continuity of care for people living with chronic conditions, helping them to navigate the system and manage their condition, within a framework of person-centred care [8].

As per the nurse navigator suggested patient enrolment criteria, a person with ten or more outpatient appointments in the past year may warrant navigation [8] (p. 25). There are 16 principles outlined in the Queensland Health service standard for the management of outpatient appointments [9]. The aim is to “have patients and their carers as the primary focus”, ensuring that treatment is “as close to home as possible” and “provided by the most appropriate clinician for the level required” (p. 3). The principles use words such as “empower[ring] the patient to participate in the decision making and to make informed choices on their pathway of care”, and that the service is a “shared responsibility” between the health service, specialists and referring medical practitioner (p. 3).

Aims and objectives

This paper presents data collected from nurse navigators and their patients, as part of the overall evaluation study. The impetus to explore the FTA phenomenon qualitatively was based on the interim quantitative data analysis. Subsequently, during initial qualitative data analysis the term FTAs became apparent. The emergence of FTA as a phenomenon in both data sets, prompted a reanalysis of the qualitative data to focus specifically on FTAs. The aim of the reanalysis was to understand the impact and causes of ‘Failure to Attend’ (FTA) labelling of patients with chronic conditions.

The research questions were:

1. How do the nurse navigators and their patients use the term FTA?
2. What are the factors that lead to a patients’ failure to attend?
3. What is the reported impact of being labelled on the patients’ wellbeing?

Research design and methods

This nurse navigator service evaluation is underpinned by a Theory of Change (ToC) framework, which allows researchers to collect data, review, evaluate and refine information at regular intervals throughout the project [10]. The framework is a “process and a product”, allowing the participation of the stakeholders throughout the life of the project [11]. ToC can be used where political, social and economic factors may impact on the project outcomes and where the findings need to examine long term sustainability [12]. It is also applied when a project is complex, or data collection is not linear [11]. Data collection usually includes mixed methods where multiple sources of information can be drawn upon at various stages throughout the life of the project. This allows for flexibility in what is collected, making it dynamic, responsive and iterative [13]. In our case, the flexible ToC approach allowed the research team to return to the data to further explore the concept of FTAs.

All 16 hospital and health services across Queensland Health consented to participate in the evaluation of the nurse navigator service. For the two-year nurse navigator evaluation, metrics include hospital data (emergency department and in-patient admissions, length of hospital stay, discharge against medical advice and FTA events); and surveying patient self-reported wellbeing and quality of life indicators at regular intervals [14, 15]. The evaluation also examines the effectiveness of the nurse navigator service through policy and practice development, case studies, vignettes and narratives collected through group and individual interviews (face to face and via teleconferencing) with consented nurse navigators and patients. To date, 25 individual and 14 group interviews have been completed with NN. These interviews included NNs across all areas of Queensland and are inclusive of special interest groups including a rural and remote group, midwifery group, aged care group and nurse navigators/practitioners’ group. Additionally, 49 interviews with consented NN patients were conducted across all areas of Queensland. This includes patients across all life stages (from paediatrics to aged care), all of whom suffer from chronic complex conditions and frailty and are under the care of a NN. Interviews are recorded and transcribed by a professional transcription service. This deidentified and collated data were used for this research.

Using a thematic analysis underpinned by Saldana [16] and Waring and Wainwright [17], the research team reviewed all the qualitative data for any reference to FTA by patients or nurse navigators. While questions around FTA had not been specifically asked in interviews, the topic came up in several interviews, particularly with the nurse navigators because it was central to the their work and they saw it as part of the explanation for patient’s alienation from the system. Initial coding was independently completed by two members of the research team (author one is a PhD candidate and author three holds a PhD) who coded the data by single word, paragraph and full content [14]. Second cycle coding was then completed by seven research team members collaboratively, (five of whom hold a PhD, the remaining two being PHD candidates) and codes were reconfigured, recategorized, resynthesized and further developed within the analytic lens of FTA [16]. Final consensus of themes was achieved collaboratively within the research team with collated themes collapsed into major themes with accompanying quotes to demonstrate the themes (See S1 Checklist). The majority of quotes come from the nurse navigators, but where possible we have added patient comments as a form of triangulation.

Analysis of the themes also drew on two Queensland Health documents; the nurse and midwife navigator Toolkit [8], and the Specialist Outpatient Implementation Standard [9]. These were used to compare and contrast the findings from patient and nurse navigator narratives, in relation to the standard of expected practice of the nurse navigator and in the management of outpatient appointments, with particular reference to FTA events.

A multiple site ethical approval was awarded to the project in March 2018 by Darling Down Research Ethics Committee HREC/18/QTDD/8.

Findings

It was apparent from the quantitative data that the counts of FTA did not vary based on time-related change around the patients’ (n = 52) navigation intervals (Fig 1). Site-related variability appeared to account for the approximately 17% of the variability in FTA counts, suggesting that navigation did not meaningfully reduce these FTA counts over time. This was the only measure where there was no clear evidence of how nurse navigation contributes to a reduction in preventable hospital presentations. Fig 1 outlines the count of FTA over time both before and after engaging with the nurse navigator service.

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Fig 1. Hospital statistical analysis—Failure to attend.

https://doi.org/10.1371/journal.pone.0247914.g001

In order to have greater understanding of why there was no impact on FTA in the quantitative data, the research team undertook the thematic reanalysis of the qualitative data.

Three major themes were identified: Access barriers; Failure to recognise personal stigma of FTA; and, Bridging the gap.

Discussion

This paper explored the phrase ‘Failure to Attend’ applied to outpatient appointments, from the perspective of nurse navigators and their patients. The paper reports on quantitative data which showed no improvement and then used qualitative data to explore this. Our analysis highlighted a disconnect between what is recommended as standards of practice in managing outpatient appointments and what is happening with patients attending (or not attending) outpatient appointments, within Queensland Health. This research has demonstrated that the language used by clinicians is ‘Failure to Attend’. Within the hospital documentation, the term ‘No show’ is also used. Whether missed appointments are labelled as ‘no show’ or FTA, the connotations are negative and there is a clear disconnect between the standard and the practice of how FTAs are managed. The patients see themselves as the victim in a system that they cannot control or align with, in their attempts at normalising life amidst multiple appointments across a myriad of services and geographic locations. For them, the system has failed. In contrast, for the health system, the patient has failed to take up the support and help offered. This research demonstrates that appointments are a top priority for the health service but may be a low priority for people with chronic conditions for various reasons, none of which are intentionally obstructive to the effective functioning of health services and efficient use of finite resources.

Scheduling of appointments is done to fit the routine of the specific clinic/health professional rather than adopting a whole of service approach or person-centred approach, as the outpatient standards intend. Individual patient priorities influence decision-making about what appointments they will attend, and in many instances, what patients prioritise would not be taken into consideration when service providers are scheduling appointments. Several patients reported that lack of communication or the lack of ensuring that information was relayed to them in a timely manner had a significant impact on outcomes. These findings support those of Roberts and Callanan [3] who found that 12% of patients attending outpatient appointments are FTAs for all the reasons provided by our study cohort, while a further 10% of FTAs are the result of systemic issues. When examining the pivotal coordination role that nurse navigators provide, we argue that, with few exceptions, the FTA is merely one symptom in the miscommunication that occurs between health services and patients with complex care needs.

For patients, the anxiety that is created as a result of FTA, for whatever reason, was evident. The word ‘failure’ conjures up issues of being a ‘bad’ patient as verbalised by the patients in our study. Yet health services used the term ‘failure’ to describe the actions (or non-actions) of patients routinely. For example, ‘failure to attend’, ‘failure to progress’, ‘failure to cope’ or in the maternity services genre, ‘failure to thrive/breastfeed’ and ‘failed trial of labour’. Often, these terms are intermingled with the concepts of compliance and non-compliance in care [18]. Furber and Thomson [18] found that ‘failure’ language used in birthing women had a negative effect on the patient/clinician partnership. Additionally, stigmatised language written in records influences clinician behaviour and decision-making about how to communicate with the mother and what treatment to provide [19]. Goddu et al [19] highlighted that where stigmatised language was used in patient records, the patients were subjected to less vigorous pain management. Conversely, “good” communication and language in all mediums can ‘lower anxiety, build confidence, educate and help to improve self-care’ [20], (p.1630).

The language that health professionals use in communication with patients matters [21]. Language constructs the world around us and perpetuates the natural social order within any given institution [22]. Language can inspire and motivate or alienate and demean [23]. A good example of this is the changing nature of the term “compliance”, which has evolved to “adherence” and more recently “concordance”. Models of care that advocate for concordance are more person-centred [23]. The language used has the power to impact upon patient care, and in the case of the nurse navigators, those patients who are most vulnerable within the healthcare system.

When offering care to patients, health services are in a constant state of tension between the rights of the individual and the fiscal management of those services. The debate around sustainable universal health care services centres on economic, social and political sustainability [24]. Public health services in Australia offer universal health care and thus have an obligation to offer access to services in a range of formats whilst also ensuring the management of these services is the responsibilities of the States and Territories. Increasingly health services are changing the way they include patients in decision-making, making standards of practice and policies more interactive and person-centred [9, 25]. While the patient is on the public health service outpatient waiting list, the health service has a duty of care to ensure that “reasonable efforts to provide specialist outpatient care within clinically recommended timeframes, communicating with patients, referring practitioners and nominated general practitioners, and responding to information regarding changes to the patient’s condition during this time appropriately” [9] (p. 8). According to the standards, the patient also has responsibility for their own care. For example, a patient is responsible for communicating their inability to attend an appointment with the clinic within 14 days and to re-book their appointment. If the patient does not do this, the service is directed to review the referral and potentially remove the patient from the clinic list [9]. How this is communicated is less clear, however, health services must ensure equitable access to those on any waiting lists, and thus the management of FTA does become necessary.

The reality of life for people with multiple chronic conditions is that attending appointments and specialists can be a very difficult task. Roberts and Callanan [3] found that reasons for not attending appointments were multifaceted and included forgetting the appointment, fear of rejection, clerical booking errors and not being aware of the appointment. A patient who does not attend an outpatient appointment does not always do so willingly. Unfortunately, the process for managing services and FTAs is such that when a patient is unable to attend, they can lose their place in the queue, needing to start the referral process again through their GP. While it certainly may be the case in some situations, not all patients walk away from this responsibility willingly, and the choice to be removed from the outpatient list is not always theirs to make. An FTA in the outpatient setting is a black mark, in that missing two appointments provides the avenue for discharge from the service: two strikes and you’re out [9]. In one of our case studies the letter informing patients of the patient’s discharge was a faceless and nameless process. The letter was not signed by any clinician or individual and was simply signed from the ‘outpatient department.’ This suggests that while the decision to remove the patient has been firmly made, the is no one assigned responsibility for this process, other than the patient. This represents a closed door to the patient.

The process of recording an FTA in the system, initiating a clinical review and communicating the outcome of the FTA to the patient appears to be disjointed, clerically driven and not employed for its intended purpose [9]. Outpatient appointment administrative staff members are tasked with recording the patient’s status (checked in, cancelled, client seen, FTA, did not wait). Where some digital systems allow for a reason to be recorded in a free text column of the system, the judgement of this is at times left to a non-clinical staff member. It is unclear how this information is obtained and interpreted and in what way it is reviewed to improve the service. It is also unclear as to how appropriate this duty is for clerical staff, given the impact that this label can have on patients who are already socially and clinically compromised. Additionally, while the specialist outpatient standard states that the reason for an FTA should be recorded, it is not clear how hospital administrators use these data within a quality improvement framework to improve patient outcomes. The process of managing outpatient services should have a focus on appropriate use of clinical services, on clinical need and on reducing barriers to access, and data around the reasons for an FTA could provide valuable insights to this.

The question that is posed from our research is: would the patient have ‘failed’ in the context of a collaborative and person-centred system? As providers of health care, clinicians have an obligation to partner with individuals and to ensure processes meet the needs of the person [26]. Ultimately, responsibility and blame do little to ensure that the person receives the appropriate care, and that services are used in the most efficient way. This is particularly important for rural and remote area located people living outside of major treatment hubs. The cost of travel is well documented. As noted by the Australian Institute of Health and Welfare [27], “in 2016, people in remote areas were more likely to report barriers accessing GPs and specialists than [people living in] major cities”. They also noted that some patients may relocate to a less remote area to facilitate effective treatment, though this was not explored in our study.

Health service staff need to move past who is right or wrong and redirect this to a conversation about how to engage people with services, and put the patient’s opinions, feelings and thoughts at the centre of care planning. Nurse navigators are bridging this communication gap through their advocacy role in communicating the patient’s needs and stepping in to resolve issues, such as the FTAs that are not directly the patient’s ‘fault’. This research advocates for a change to the term ‘Appointment did not proceed’. This may have more positive connotations for the patient and may direct the conversation from blame, to asking why the appointment was not able proceed. Additionally, investigation into the processes of obtaining, recording, interpreting, and evaluating this data may be of considerable benefit to health services and to patients attending the service.

Limitations

The paper does not explore the views of clinicians within the various health services or the difficulties they experience in coordinating services. This research is limited to data collected in one Australian state and to the public health provider sphere. This research has reviewed data associated with those with multimorbidity only as the cohort within the nurse navigator service who have multiple chronic conditions and hence more frequent touch points with outpatient services.

Conclusion

The label of FTA poses a risk to further disengage people from service utilisation. This paper raises the awareness of the language used inadvertently by health service providers, whereby patients are apportioned blame when they ‘fail’ to comply with health service directives. We examined the concept of ‘failure to attend’ outpatient specialist appointments and identified extraneous issues that prevented patients from attending an outpatient appointment. Once a patient received a label of FTA, they were removed from the specialist outpatient waiting list if this occurred more than twice, regardless of the reason. People with multimorbidity have complex medical and social needs, that need to prioritise daily the resources they have. Nurse navigators work within a person-centred model to ensure that the person is fully engaged with the health decisions made and then assist them in aligning their life with the multiple specialist appointments. As such, nurse navigators are a central point for communication and liaison between patients and the health system.

Implications for health policy and practice

This article advocates for the consideration of alternative language, namely ‘Appointment did not proceed’, to be used when referring to a patient’s inability to attend an appointment, and to develop collaborative methods of communication, management of outpatient appointments and engagement with multimorbid patients. This may have relevance for patients who live in rural and remote areas who continue to experience financial and physical disadvantages compared with people living in major centres.

Supporting information