Studying Help-Seeking for Symptoms: The Challenges ofMethods and Models

Suzanne Scott1* and Fiona Walter2

1 King’s College London, UK2 University of Cambridge, UK

Abstract

Although the detection and experience of symptoms often stimulates an appropriate decision as towhether to visit to a healthcare professional (HCP), there are many occasions when it does not.Sometimes, people seek help for minor, transient conditions which would have resolved withoutthe attention of a HCP, whereas at other times help is not sought for signs of life-threatening dis-ease. Help-seeking behaviour concerns not only the decision of whether to seek help or not, butalso the timing of that decision. The timing of consultations with HCPs has implications for ourhealth, quality of life, treatment options and for the cost of healthcare services. This article dis-cusses research and theory on help-seeking behaviour, with attention to the challenges of methodsand models used in this area of research. One particular model, the ‘General Model of TotalPatient Delay’, is outlined and critiqued to demonstrate the complex processes involved and high-light areas in need of further research and development.

Seeking help for symptoms is a complex process. Somatic information1 can arise fromfluctuations in normal bodily processes or from disease, emotions and environmental con-ditions (Kolk, Hanewald, Schagen, & Gijsbers van Wijk, 2003). Consultation withhealthcare professionals (HCPs) is often stimulated by the detection of somatic informa-tion that is deemed to be beyond personal control and so in need of medical attention.Help-seeking behaviour involves processes of symptom perception, interpretation, apprai-sal and decision-making in addition to having the ability and motivation to enforce thedecision by visiting a HCP. As Komaroff (2001) summarised, symptoms are experiencedfrequently, yet every symptom is not interpreted as an illness. Even if a symptom is inter-preted to be an illness, this does not mean a person will visit a HCP, as only a minorityof illnesses are believed to warrant medical care. Most of the time, this is an adaptive pro-cess as the vast majority of bodily changes are not indicators of serious disease.

However, a continuing and important issue for both the individual and their healthcaresystem is delay in seeking help for symptoms that are indicative of transmittable or life-threatening diseases. For instance, prolonging the duration of an untreated sexually trans-mitted infection will increase the probability of disease progression, its adverse sequelaeand transmission to others (Hills et al., 1993). The timing of angioplasty or thrombolytictherapy for myocardial infarction is key, with early treatment leading to less myocardialdamage and reductions in morbidity and mortality (Asseburg et al., 2007). The incidenceof advanced stage cancer at diagnosis is frequently attributed to delays in detection andpresentation (Allgar & Neal, 2005; Neal & Allgar, 2005; Neal et al., 2007) and may resultin poorer prognosis. Given the impact of delay in diagnosis, it is important to understandthe timing and reasons underlying help-seeking behaviour to develop ways of reducingundue delay.

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Research into help-seeking behaviour mainly focuses on estimating the time taken toseek help or identifying the determinants of any delay in doing so. Such research faces anumber of methodological challenges, including issues regarding what, when, where,how and whose help-seeking behaviour should be studied. These challenges relate to def-initions and terminology, study design, sample, measures and analysis. They have resultedin research that suffers methodological weaknesses which limit the conclusions obtainedand thus also the development of interventions.

In view of such challenges, this article aims to discuss the methods used to study help-seeking behaviour and offer guidance for future research. The second section of this arti-cle focuses on the use of theory to understand help-seeking behaviour. Despite thepotential benefits of theoretical models, theory-based research into help-seeking behav-iour is the exception rather than the rule. This article aims to highlight the need for the-ory-based research. In particular, one model, the ‘General Model of Total Patient Delay’,is discussed in detail to demonstrate the complex processes involved in help-seekingbehaviour and to highlight areas of this model that are in need of further research anddevelopment.

Methodological Challenges for Research into Help-Seeking Behaviour

What is being studied?

It is essential that there are clear, appropriate and consistent definitions and terminol-ogy about the concepts under investigation to enable comparisons of help-seekingbehaviour across diseases and symptoms, to identify changes over time, and to developstandardised measures. However, research into the time taken to seek help has notachieved consensus over terms and definitions (Byrne, 2008; O’Mahony & Hegarty,2009). Stemming from the seminal work of Pack and Gallo (1938), the term ‘patientdelay’ has been used to represent the time between the onset or discovery of symp-toms, to the timing of the first consultation with a HCP regarding that symptom.2

This differentiates patient delay from ‘professional delay’, a term often used to describethe time taken from a patient’s first consultation with a HCP to the start of treat-ment. The combined duration of patient and professional delay is sometimes referredto as ‘total delay’ although some researchers measure ‘diagnostic delay’ or ‘total diag-nostic delay’ (the time between the point at which a patient detects a symptom tothe receipt of a definitive diagnosis) rather than ‘total delay’. As there are no standarddefinitions of delay, variations of these definitions are common, particularly betweenconditions or disease processes. For example, in relation to delay for myocardialinfarction, Finn, Bett, Shilton, Cunningham, and Thompson (2007) used ‘prehospitaldelay’ to represent time from detection of symptoms to arrival at emergency depart-ment and ‘hospital delay’ to represent the time from arrival at emergency departmentto initiation of definitive treatment. It may be the case that different diseases requiredifferent definitions; however there is currently a lack of agreement even within dis-eases.

The lack of consensus about terminology includes not only the definitions aboutthe timing but also the terms themselves. Sisler (2003) suggested that ‘presentationdelay’ and ‘management delay’ may be more appropriate than ‘patient delay’ and ‘pro-fessional delay’ as the latter terms assign undeserved blame to the patient or profes-sional. The word ‘delay’ has also been criticised, as some patients seek help almostimmediately or in an appropriate timeframe (Turris & Finamore, 2008). In their quali-

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tative investigation into help-seeking for symptoms of lung cancer, Corner, Hopkin-son, and Roffe (2006) noted that the term ‘delay’ seemed an inappropriate descriptionas it had not occurred to patients that they may be unwell, so they had not con-sciously postponed seeking help. Alternatives to ‘delay’ include ‘decision time’, ‘timeto diagnosis’, ‘timelines’, ‘intervals’, ‘stages’, ‘pre- or postpresentation time’ and ‘timeli-ness’ (Baade et al., 2006; Kaftarian & Safer, 1987; de Nooijer, Lechner, & de Vries,2001; Olsson, Schultz, & Gould, 2009; Wielgosz, Nolan, Earp, Biro, & Wielgosz,1988). As there is currently no agreement on which of these terms are most appropri-ate, this field of research continues to work in a discordant fashion, and comparisonsover time, between and within diseases, countries and healthcare systems are limited.There is an urgent need for consensus and adoption of common terms and defini-tions.

How has help-seeking behaviour been studied?

Reflecting the variations in definitions of delay, there have also been a wide range ofmethods used to measure the time taken to seek help (Allgar & Neal, 2005). Differentmethodologies include extracting data from patients’ medical records in primary orspecialist care, using questionnaires or detailed history taking and structured or semi-structured interviews with patients or patient’s relatives. Some research does attempt toverify time duration by using more than one method (i.e. triangulation), yet unfortunatelythis is not the norm. Use of patient’s medical records is thought to be particularly flawedas the date on which symptoms are first noticed is frequently absent or poorly recorded.Relying on medical records also underestimates symptom experience as not all symptomsare documented (Kroenke, 2001) and as such may not include the very first symptom(and timing of that symptom). Furthermore, symptoms from ongoing conditions maymask detection or reporting of new or evolving somatic information. Questioning patientsabout the timing of the first symptoms of their illness makes assumptions about patients’knowledge of signals of that illness and also the correspondence between what a patientexperienced and the biomedical description of the symptoms connected to the disease inquestion (Memis, Tugrul, Evci, & Ergin, 2008). As there are no standardised question-naires, the way in which patients are asked about the time taken to seek help variesbetween studies. Similar to medical records, questionnaires do not allow further probingor investigation into the type and timing of symptom onset. Interviews allow morein-depth and probing questioning and detailed responses. However, this advantage alsomeans that the way in which patients are asked about the time taken to seek help variesbetween participants as well as between studies. As with the plethora of terms and defini-tions in current use, there is also no agreement on the way to gather these data, and thereis an urgent need for the adoption of common methods or combinations of methods.The next step could be to develop measurement tools with demonstrable psychometricproperties.

When and where should help-seeking behaviour be studied?

Patients’ help-seeking behaviour is typically studied using a retrospective design, enquir-ing into the beliefs and behaviour of patients who have recently been diagnosed with aparticular disease. Such use of retrospective data is problematic as it has the potential toresult in error in recall, particularly for those patients with long delay periods or whosediagnosis and ⁄or treatment was traumatic. The nature of the symptoms may also impact

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recall. Sheppard, Kumar, Buckley, Shaw, and Raza (2008) investigated help-seeking inpatients with early rheumatoid arthritis and found that patients could recall the precisetime of onset of symptoms if the symptoms had been severe and ⁄or impacted their dailyactivities. However, patients who had a gradual development of symptoms could notrecall the precise timing of when their symptoms began. Similarly, the onset of changesin a mole which signify the development of malignant melanoma may be insidious andgradually develop over months or years. Recall may also be compromised by a numberof other factors. For example, Memis et al. (2008) highlighted that for conditions such asstroke, some patients may not notice symptom onset accurately if they are sleeping whilethe stroke begins. They suggested that it may be useful to ask patients ‘‘when was the lasttime you were symptom free?’’ rather than when their symptoms began. Recently, moresophisticated methods have been introduced to aid recall. For instance, the calendar-land-marking technique is a aided recall system whereby participants note the time of cruciallife events (e.g. birthdays, holidays, Christmas) and use these to determine the notableevents in the pathway to diagnosis (van der Vaart, 2004). Techniques such as this shouldbe implemented routinely if retrospective study designs are used.

In addition to studying help-seeking behaviour retrospectively, help-seeking behaviourshould be studied using longitudinal or even experimental designs (Andersen, 1995). Suchstudy designs may be more insightful and less biased as they could investigate symptomperception as it is occurring, decisions to seek help as they are being made and healthcareutilisation as it happens. Experimental studies could determine influences on symptomperception, interpretation and intention to seek help and pilot attempts to intervene. Pro-spective studies may allow the distinction between symptoms or combinations of symp-toms predictive of life-threatening disease from combinations of symptoms predictive ofless serious conditions and also offer a fascinating insight into the processes involved insymptom interpretation and help-seeking. There are very few examples of prospectiveresearch in this area, but those that exist make extremely valuable contributions. Forinstance, Stoller and Forster (1994) used a 3-week diary to investigate lay responses tosymptoms in a sample of elderly people living in the community. Each day, participantswere asked to complete structured health diaries to record which (if any) of 26 symptomsthey were experiencing, how they interpreted the symptoms, their responses and physi-cian contact. This study highlighted that help-seeking is driven by an individual’s subjec-tive perception of need rather than an objective, evaluated need. Hay (2008) usedparticipant observation and informal interviewing techniques on an island in Indonesia togather prospective insights into how sensations become symptoms. By observing individ-uals in their social context, Hay was able to determine how people spoke and respondedto symptoms prior to contact with HCPs. This enabled the identification of factors thatinfluence the interpretation of sensations. Facione and Facione (2006) interviewedwomen who had noticed a change in their breast that they thought may be cancer yethad decided not to seek help. The data highlighted cognitive biases and heuristics thatunderpinned the decisional processes.

Analysing the decision to seek help using prospective methodology is not without itsdrawbacks and must be carefully constructed. For instance, studies examining ‘hypotheti-cal help-seeking’ or intentions to seek help (i.e. If you noticed a breast lump, whenwould you seek help?) may be problematic, as they do not take contextual, personal,social and comorbid factors into account. Furthermore, there has been minimal investiga-tion into the validity or reliability of these measures.

Longitudinal, community-based studies would remove many of the methodologicallimitations yet still face challenges. For instance, symptom lists in questionnaires may

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increase attention to the body, leading to increased awareness of somatic informationand thus overestimation of symptoms (Kroenke, 2001). Asking a person whether theyhave decided to seek help for a certain symptom may prompt them to do so. Thiswould increase the burden on primary care where HCPs are already challenged todistinguish signs of potentially serious but uncommon disease from similar signs ofmany less serious and much more common conditions. It is also questionable as towhether longitudinal studies can be conducted for diseases such as cancer, as it wouldbe unethical to observe a patient with probable or possible symptoms of cancer with-out recommending they consult a HCP. Nevertheless, the reliance on retrospectiveresearch and the overwhelming lack of prospective research into help-seeking behav-iour needs to be addressed.

Whose help-seeking behaviour should be studied?

Investigations into help-seeking behaviour face further methodological challenges withregard to the study sample. First, there are basic issues such as sample size. In their reviewof factors associated with prehospital delay, Khraim and Carey (2009) noted that moststudies are underpowered to detect differences between those who seek help promptlyand those who postpone seeking help. Second, (and crucially), the choice of sample oftenobscures our understanding of help-seeking decisions. For instance, those who die or aretoo unwell are not included in the retrospective analyses (Perkins-Porras, Whitehead,Strike, & Steptoe, 2008; Wielgosz et al., 1988). As most studies use samples of patientswho are in tertiary care, the sample is limited to those who have already entered thehealthcare system and have been diagnosed with the same condition. What about thosepeople who do not seek help? Perhaps for some diseases such as rapidly growing cancers,all patients do seek help (Cacioppo, Andersen, Turnquist, & Petty, 1986), yet this is notguaranteed for other conditions, especially those that are not life threatening. Hay (2008)notes that as typical help-seeking research focuses on those who have experienced asomatic sensation and decided to seek help, it does not give us insight into how peopleinitially experience sensations, or the processes by which sensations transform into symp-toms. Studies of patients who have already sought help often fail to find associationsbetween the variables under investigation and duration of patient delay (e.g. Ireland,Reid, Powell, & Petrie, 2005; Perkins-Porras et al., 2008) as they measure current per-ceptions (which are often months to years later) rather than those experienced at the timeof detection and interpretation of somatic information.

There should also be consideration of those people who do seek help but are diag-nosed with a different condition to the one in question. Given that most symptoms arenot mutually exclusive to a specific disease and it is HCPs and not the lay public who areexpected to be able to differentiate between conditions, any public health interventionwill advise individuals to seek help if they experience specific symptoms. As such weneed to know what motivates and hinders help-seeking for those symptoms. In turnhelp-seeking research should be at the symptom level (e.g. help-seeking for acute chestpain) as well as the disease level (e.g. help-seeking for acute chest pain caused by myocar-dial infarction).

How should help-seeking behaviour be analysed and interpreted?

The analysis and interpretation of studies addressing help-seeking behaviour varies acrossstudies, symptoms and diseases. With regard to analysing and interpreting the factors that

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influence help-seeking behaviour, there are a number of methodological issues to con-sider. Qualitative methods can permit exploratory investigations into the decision to seekhelp and thus can offer explanation and insight into the determinants of help-seekingbehaviour. This is neatly demonstrated by a synthesis of 38 qualitative studies of patientdelay (Smith, Pope, & Botha, 2005) that highlighted common reasons (recognition andinterpretation of symptoms, fear of cancer and fear of embarrassment) for delay acrossdifferent cancer types. However, qualitative data does not offer verification of the magni-tude of the effect of each determinant and thus cannot (or should not) be used to informinterventions without further research. For instance, it may be the case that fear of canceracts as a barrier to seeking help, yet fear of cancer may not necessarily result in substantialdelay. As such even if fear of cancer is reduced, the problem of patient delay may stillcontinue. The themes identified through qualitative analyses should be subsequently usedin quantitative studies to assess the size of their effect, compare explanations and deter-mine relationships between themes (Sheppard et al., 2008). When conducting such quan-titative research, we need robust measures of the factors that we have hypothesised to berelated to the time taken to seek help. However, at present there is considerable use ofun-validated measures (Kainth et al. (2004). In addition, quantitative studies should besufficiently powered to enable multivariate statistical analyses to highlight the most influ-ential barriers and triggers to seeking help. There is currently a wide variation in the anal-ysis and reporting of time intervals. The time taken to seek help would be best treated asa continuous variable (i.e. number of days for cancer or minutes for myocardial infarc-tion) (Facione, 1993). Positively skewed data requires transformation, and the medianrather than the mean should be presented to prevent extreme cases affecting the results(Kaftarian & Safer, 1987; Pack & Gallo, 1938). To overcome the problem of skeweddata, some researchers dichotomise the time taken to seek help by specifying a particularduration (e.g. more than 3 months) to compare those who have delayed and those whohave not. If this is the case, the selected duration for delay should have documented clini-cal relevance or rationale for its use.

The Use of Theory to Understand Help-Seeking Behaviour

The existing research into help-seeking behaviour has identified a wide range of factorsthat directly or indirectly influence the time taken to seek help. Factors are oftengrouped into categories such as patient characteristics, provider and system attributes,predisposing factors, enabling factors and need (Aday & Andersen, 1974; Dutton,1986). Patient characteristics that may influence help-seeking behaviour include age,sex, education, socio-economic status and ethnicity. Provider or system attributes thatmay impact help-seeking behaviour include the accessibility, affordability and availabilityof medical centres, (dis)trust of providers, previous misdiagnosis and communicationbetween HCPs and patients (including language barriers). Help-seeking behaviour canalso be influenced by psychological factors such as anxiety, attitudes about help-seeking,outcome expectancies, misinterpretation, fear, embarrassment, low perceived need, sus-ceptibility and vulnerability, stress and psychological traits including locus of controland negative affectivity. Social factors (such as nondisclosure of the discovery of symp-toms, the perceptions of significant others in a person’s life, competing priorities, lackof support from family ⁄ friends), situational factors (such as disruption to everyday life,symptom salience, symptom persistence) and behavioural factors (such as self-medica-tion, watchful waiting, symptom monitoring) also play a role in help-seeking behaviour.When collating all of the possible influences on help-seeking behaviour, it is clear that

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at least 70 different factors have been shown to play a role, and it would be impossibleto study all these factors in a single study (Hay, 2008). Unfortunately, as the factors thathave been identified have not been organised into theoretical models, a considerableamount of research on help-seeking behaviour has been atheoretical. In turn, thechoice of factors that are included in studies is rarely guided by theory-driven hypothe-ses. This leads researchers to study different factors and in different combinations. It istherefore difficult to establish the hierarchy of importance of the different influences onthe time taken to seek help (Rakowski, Julius, Hickey, Verbrugge, & Halter, 1988).Furthermore, by forming ever-increasing lists of factors, we do not learn how the fac-tors have an effect, at what point in the pathway to diagnosis each factor has an effect,whether some factors have more than one effect, or whether factors have synergisticeffects. Relying on a list of factors also assumes that it is a combination of variables atone point in time that determines whether people take action (i.e. a single predic-tion ⁄decision rule). However, help-seeking behaviour is likely to be more complex(Weinstein, Rothman, & Sutton, 1998) and be a prospective process (Hay, 2008). Forinstance, the factors that influence the detection and interpretation of somatic infor-mation may be different to those that influence help-seeking decisions (de Nooijer,Lechner, & de Vries, 2003). Indeed, general models of health behaviour (e.g. HealthAction Process Approach (Schwarzer & Fuchs, 1995)) demonstrate separate motivationaland volitional phases each with different predictors. Theoretical models that have beendeveloped for behaviours that are not health related have also suggested a phasedapproach. For instance, Crisis Decision Theory (Sweeny, 2008) is a recent model ofresponses to negative events that merges coping theories [e.g. the transactional modelof stress and coping (Lazarus & Folkman, 1984)] and the self-regulation model of illness(Leventhal, Meyer, & Nerenz, 1980) and emphasises the occurrence of separate (albeitinterconnected) phases such as assessment of severity, determining response options andevaluating response options. These examples suggest that a dynamic model of help-seeking behaviour is required to underpin the study of help-seeking behaviour.

Safer, Tharps, Jackson, and Leventhal (1979) proposed a 3-stage model specific to thehelp-seeking process, with each sequential stage governed by a distinct set of appraisaland decisional processes. The first stage (appraisal delay) describes the time a person takesto evaluate somatic information and decide whether it is indicative of illness. The secondstage (illness delay) describes the time taken from deciding one is ill to deciding the illnessrequires or will be ameliorated by professional care. Finally, the third stage (utilisationdelay) describes the time from the decision to seek care until the person goes to the clinicand uses its services. Andersen, Cacioppo, and Roberts (1995) subsequently expandedutilisation delay to form a 5-stage model. They added ‘behavioural delay’ to describe thetime between a person deciding an illness requires medical attention and deciding to acton this decision, ‘scheduling delay’ to describe the time between deciding to act on thedecision to seek help and actually attending an appointment, and ‘treatment delay’ todescribe the time between the first appointment with a HCP and the onset of treatment.Andersen et al. named this adapted model the ‘General Model of Total Patient Delay’(see Figure 1). The model offers a useful guide to understand the patient pathway leadingfrom the detection of a symptom to consultation with a HCP and subsequent treatment,and thus is now fairly widely cited in help-seeking research and health psychology text-books. Dividing patient delay into phases reflects the dynamic process. It is also advanta-geous as a factor which hinders or facilitates movement through one stage may have adifferent effect or no effect on a different stage and thus may be obscured if only totalpatient delay is considered (Safer et al., 1979).

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There is increasing evidence for this phased process leading up to HCP consultations.For example, in their study of help-seeking for symptoms of myocardial infarction,Hedges et al. (1998) demonstrated that on average, it took patients 30 minutes afternoticing symptoms to think something was wrong or that they were ill, 140 minutes tothink symptoms were serious enough to seek medical care, and 265 minutes to call 911or leave for hospital. Qualitative data also shows support for a staged processing in help-seeking behaviour. For instance, in a study of men’s use of healthcare services, conductedby Smith, Braunack-Mayer, Wittert, and Warin (2008) a participant stated, ‘‘You’ve gotto be aware that you’ve got a problem. Obviously that’s the first thing. And then you’vegot to assess as to whether or not you can fix it yourself, or find somebody who knowsmore about it than you do.’’

When the stages of delay have been compared, appraisal delay appears to be the mostimportant. For symptoms of cancer, appraisal delay has been reported to constitute at least60% of the total delay time (Andersen et al., 1995; Ristvedt & Trinkaus, 2005). Andersen

Detectsunexplainedsign(s) and/

or symptom(s)

Infers illness

Decides to seekmedical attention

Acts ondecision by making

an appointment

First receivesmedical attention

Yes

Yes

Yes

Yes

Yes

No

No

No

No

Yes No

AppraisalDelay

IllnessDelay

BehaviouralDelay

SchedulingDelay

TreatmentDelay

To

tal Patien

t Delay

Begins treatmentfor illness

Figure 1 The General Model of Total Patient Delay as suggested by Andersen et al. (1995). Reproduced with per-mission from the British Journal of Social Psychology ª The British Psychological Society.

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et al. (1995) also presented ‘psychophysiological comparison theory’ to explain the processof symptom appraisal. The theory identifies heuristics and biases that guide interpretationsof somatic information such as optimism, illness prototypes, recent events and expecta-tions. Other factors believed to influence appraisal delay include a lack of worry, risk per-ceptions, pre-existing knowledge of symptoms, co-existent chronic illness, the type andnature of symptoms, presence of stress and socio-demographic factors such as age andgender (Cacioppo et al., 1986; Leventhal & Diefenbach, 1991; Molassiotis, Wilson, Brun-ton, & Chandler, 2009; de Nooijer et al., 2001).

Factors believed to influence illness delay include familiarity with the presumed illness,the individual’s confidence in their ability to manage the problem, perceived outcomes oftheir actions, emotional responses such as fear, consultation with lay others, reliance onself-medication and continued monitoring of symptoms (Cacioppo et al., 1986; Molassio-tis et al., 2010; de Nooijer et al., 2001). There is some evidence that behavioural delay isinfluenced by patients’ perceived ability to access help, normative factors such as familypressure and presence of other events or priorities such as holidays or care of dependents(Cacioppo et al., 1986; Molassiotis et al., 2010; de Nooijer et al., 2001). There has beenless research on scheduling delay, but there is some evidence of differences betweenhealth care systems, suggesting the importance of access to primary and secondary carephysicians and diagnostic procedures. Treatment delay may be affected by communicationbetween patients and HCPs, and professional miscommunication, waiting lists for special-ist appointments, misdiagnosis and administrative error (Cacioppo et al., 1986; Molassiotiset al., 2010). On the whole, however, the application of the General Model of TotalPatient Delay has been relatively low in comparison with the number of atheoreticalstudies. Thus, the factors influencing each stage and the process by which people movefrom one stage to the next are in need of further research.

Application and utility of the General Model of Total Patient Delay

The General Model of Total Patient Delay initially proposed by Safer et al. (1979) andmodified by Andersen et al. (1995) offers a framework to study and improve understand-ing of help-seeking behaviour. It is a crucial move away from the formulation of ever-growing lists of factors that may influence help-seeking. The model has been applied to anumber of different disease groups and provides insight into the stages leading to andinfluencing the act of seeking help. However, we consider that there are a number ofissues concerning this model, and these are now addressed in turn.

Starting point

The General Model of Total Patient Delay suggests that the starting point in thepatient’s trajectory towards seeking help is the ‘detection of unexplained symptoms’.However, what has preceded this? First, there must be presence of somatic informa-tion. Second, there will be awareness or detection of that somatic information. Third,there must be a form of assessment as to whether this somatic information is currentlyexpected or is deemed ‘abnormal’ (Gijsbers van Wijk & Kolk, 1997). Thus, somepatients may be unaware of the presence of somatic information for some time.Others may be aware of somatic information but normalise it, as it was expected intheir current context. In turn, such somatic information is likely to be ignored ordismissed (Hay, 2008). The assessment of the expectedness of somatic informationmay be an automatic process and one that is beneficial. Bradley, Calvert, Pitts, and

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Redman (2001) suggested that normalisation serves to maintain an identity of thehealthy self and thus allow us to continue in our societal role. Indeed, full appraisal ofevery somatic change would require a great deal of unnecessary cognitive effort, giventhan most somatic changes do arise from normal bodily processes. So when doessomatic information become abnormal? Hay (2008) suggested that somatic informationthat fits perceived vulnerabilities, which exceeds expected duration or that interfereswith a person’s daily activities, may initiate the appraisal process. Similarly, Teel,Meek, McNamara, and Watson (1997) suggested that an individual, critical level ofdisturbance is required to initiate cognitive appraisal. This reflects a principle of psy-chophysiological comparison theory: the strength of the motive to evaluate a sign orsymptom is a function of the unexpectedness, the salience, the perceived consequencesand personal relevance of the bodily reaction. Thus psychophysiological comparisonprocesses (appraisal of somatic information) are not expected to be invoked every timea person detects a bodily change (Cacioppo et al., 1986). At present, the GeneralModel of Total Patient Delay assumes that detection of somatic information and aninitial assessment of the expectedness of somatic information have already taken place.Yet these processes provide extra potential for delay. For many diseases, the latedetection of somatic information and its dismissal as ‘normal’ represents a major partof the delay in seeking help.

Operalisation

Weinstein et al. (1998) noted that stage theories need to specify how different stagesare defined and how different stages are measured. However, details of the definitionsand measurement of the stages of the General Model of Total Patient Delay are lack-ing. For example, the end-point of the appraisal delay period is ‘infers illness’ yet thedefinition of ‘illness’ has not been specified. In an application of the model, Andersenet al. (1995) asked women for the date they decided they were ill. Other applicationsuse definitions such as ‘the point you began to feel you might really be sick’ (Saferet al., 1979) or ‘the time when you first thought or realised your symptoms might beserious’ (Ristvedt & Trinkaus, 2005) or that ‘was not usual for you’ (Pitts, Woolliscroft,Cannon, Johnson, & Singh, 2000). Thus, without a clear definition, the operalisationand interpretation rely on both the participant’s and the researcher’s own beliefs as towhat constitutes illness. If the General Model of Total Patient Delay is to be used toimprove understanding of help-seeking behaviour, the way in which it should be oper-ationised requires specification.

Sequence of stages

The General Model of Total Patient Delay presents a linear stage model where allpatients will pass through all the stages in the same order and only pass through eachstage once during a symptom episode. In reality, however, it appears that the process ismore dynamic and iterative and the stages are not an immutable sequence (Leventhal,Leventhal, & Contrada, 1998). For example, detection of somatic information is knownto be influenced by the labelling ⁄ appraisal of that information such that somatic infor-mation seeks labels and labels seek somatic information (Leventhal & Diefenbach,1991). This is commonly seen following the receipt of a diagnosis [e.g. being told thatone has high blood pressure directs attention to the body and may initiate a symptomsearch (Meyer, Leventhal, & Gutmann, 1985)], but it is just as relevant to symptom

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appraisal before diagnosis. If a person notices they are hot and are perspiring, they mayappraise this as ‘fever’. If so, they will then search for associated somatic informationbased on their beliefs about fever. This may lead them to detect further somatic infor-mation that they may not have noticed should they have attributed their high tempera-ture and perspiration to something else, such as the weather. The General Model ofTotal Patient Delay does not reflect this process as it only acknowledges the link fromdetection of unexplained symptoms to the inference of illness, rather than a bidirec-tional relationship.

There are many other examples of help-seeking behaviour being a cyclical rather thanlinear process. For instance, symptoms may be re-interpreted a number of times through-out the symptom episode (Scott, McGurk, & Grunfeld, 2007). In a study of delays indiagnosis of ovarian cancer, Evans, Ziebland, and McPherson (2007) reported that if aHCP prescribes treatment for noncancer causes, women then have to implement thistreatment, decide whether this treatment worked and re-decide whether or not to seekhelp. Moloczij, McPherson, Smith, and Kayes (2008) analysed decision-making at thetime of stroke. The authors observed that some patients may go through the process ofrecognition, interpretation, negotiation and action or inaction several times, repeating thestages continuously until accessing medical help. Furthermore, symptoms rarely occur inisolation but develop or grow in number (Jones, 1990). However, the study of help-seeking behaviour has tended to focus on a particular symptom rather than a changingsymptom matrix. The influence of time itself is a particularly interesting influence onsymptom interpretations and subsequent help-seeking responses. For instance, a sorethroat that has lasted for 2 days is very different to one that has lasted for 2 months.A sore throat that has been constantly present for 2 months is very different to one thathas been intermittent for 2 months. The changing nature of symptoms over time is notaccounted for in a linear model of help-seeking behaviour.

There are also alternative pathways to diagnosis that are not currently taken intoaccount in the General Model of Total Patient Delay. Signs of disease are increasinglydetected via screening programmes (Allgar & Neal, 2005; Bairati, Fillion, Meyer, Hery,& Larochelle, 2006; Evans et al., 2007; Wall, Moore, El Tamer, & Reilly, 1998). Signsof disease may also be detected opportunistically by a HCP during an appointment foranother condition (Howell, Smith, & Roman, 2008). In their study of delays in diagnosisof tuberculosis, Asch, Leake, and Gelberg (1994) found that although 71% of the samplehad sought help for a symptom, 15% were diagnosed when seeking help for anothermedical condition, 10% were diagnosed through screening programmes and 1% werediagnosed via being contacts of infected persons. Furthermore, alternative responses tosymptoms such as ignoring them, monitoring progress, hoping symptoms will resolvenaturally, self-medication, adaptations to lifestyle and seeking lay advice are not docu-mented in the general of total patient delay.

Role of emotion

Leventhal, Diefenbach, and Leventhal (1992) noted that emotion can result in difficultyto self-diagnose, alter attention to and interpretation of somatic states, and affect behavio-ural decisions such as whether to seek care. Thus, emotion may be a factor influencingprogression from one stage to another. It may also be a target for self-regulation, and thusseeking care may be a distress-reducing strategy (Leventhal et al., 1992). Individuals mayhave emotional responses to symptoms such as dislike, disgust and panic and act on theseemotional responses rather than cognitive ones. However, the General Model of Total

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Patient Delay does not explicitly account for the role of emotion. This may be becausethe emotional responses are considered to be part of illness representations or a responsethat is elicited by cognitive aspects of the representation (Diefenbach & Leventhal, 1996).Nevertheless, the interaction of emotional and cognitive factors needs to be detailed, andemotions other than fear (e.g. guilt; fatalism; shame) require more attention (Facione,1993).

Reliance on illness inference

By having ‘illness inference’ as a key part of the model, the General Model of TotalPatient Delay assumes that we must infer illness to seek help. However, some patients donot appear to infer illness and progress directly from appraising their symptom to decidingthat medical attention is required (Brouha, Tromp, De Leeuw, Hordijk, & Winnubst,2005; Corner, Hopkinson, Fitzsimmons, Barclay, & Muers, 2005; Ristvedt & Trinkaus,2005; Scott et al., 2007). A HCP may be visited for reassurance, social contact or symp-tomatic relief as well as to rule out serious disease or reduce uncertainty (Kahan, Giveon,Zalevsky, Imber-Shachar, & Kitai, 2000; Shaw, Brittain, Tansey, & Williams, 2008;Sheppard et al., 2008; St Claire, 2003). Illness inference (i.e. the interpretation of somaticinformation) is distinct from ‘feeling ill’ whereby the individual physically feels unwell. Itis notable though, that feeling ill is also not a prerequisite of seeking help. Some patientseven note that they still did not feel ill after being diagnosed with a life-threatening dis-ease (Scott, Grunfeld, Main, & McGurk, 2006). If illness inference can be bypassed thisquestions the validity of the General Model of Total Patient Delay and suggests that pro-cesses other than the inference of illness that lead to the decision to seek help need to beincorporated into a model of help-seeking behaviour.

Extension of treatment delay

Some researchers have suggested that the final stage of the model (treatment delay)could be expanded to reflect the steps involved in obtaining a definitive diagnosis andinitiation of treatment. For instance, referral to secondary care, visit to secondary care,undergoing investigations, receipt of results and negotiation of treatment plan are pos-sible substages of treatment delay (Bairati et al., 2006; Brouha et al., 2007; Dang-Tanet al., 2008; Davies, van der, & Cranston, 2007; Evans et al., 2007; Molassiotis et al.,2010). The issue of whether to expand the final stage is not straightforward, however,as some stages will not be relevant for all diseases or symptoms or healthcare systems.Furthermore, it is questionable whether a treatment delay stage should be included ina model of ‘total patient delay’ when ‘patient delay’ does not usually include eventsafter the first consultation with a HCP.

Summary and Conclusions

Research into help-seeking behaviour is vital to enable the development of effective inter-ventions to reduce undue delay and promote timeliness of presentation and diagnosis. Cur-rent knowledge about help-seeking behaviour is limited by methodological weaknesses.There are no standardised definitions or ways of measuring the time taken to consult aHCP. Furthermore, there is over-reliance on retrospective accounts of the pathways todiagnosis, as well as biased or inadequate samples, unvalidated measures and unsophisticatedanalyses. To build on existing knowledge and to develop and test hypotheses, there is a

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need for a theoretical underpinning to help-seeking research. However, many studiesinvestigating delays in diagnosis are atheoretical. A summary of the methodological recom-mendations to increase understanding of help-seeking behaviour is presented in Box 1.

Box 1. Methodological Recommendations for Help-Seeking Research

• Agree definitions and terminology and use consistently.• Develop reliable and valid measurement tools.• Routinely use techniques to aid recall in retrospective research.• Conduct research at the symptom level rather than disease level where possible when

using a patient sample.• Use prospective, longitudinal and experimental study designs.• Quantitative studies should be adequately powered.• Quantitative analyses should be used to verify and compare the magnitude of effect

of factors that influence help-seeking behaviour.• If time taken to seek help is dichotomised into ‘delayers’ and ‘non-delayers’, the

rationale for the cut-off of delay should be evidence-based and documented.• The validity of hypothetical help-seeking research should be investigated.• Theory should be used to guide the selection of factors under study and to develop

theory-driven hypotheses.• Research should encapsulate a phased decision-making process rather than a single-

decision rule.

Safer et al. (1979) and Andersen et al. (1995) developed a stage model of delay that breaksdown the patient pathway from symptom detection to diagnosis ⁄ treatment into distinctdecisional and behavioural processes. Cacioppo et al. (1986) note that the model is applica-ble to a variety of physical and mental disorders, although to date it has mostly beenapplied to physical disease such as cancer and myocardial infarction. There are a numberof issues that limit the usefulness of this model. These include the starting point and oper-alisation of the model, the role of emotions and illness inferences and the dynamic natureof help-seeking decisions (see Figure 2). To better represent the complex nature of help-seeking behaviour, the model would benefit from development and adaptation.

Short Biographies

Suzanne Scott is a Chartered Health Psychologist. Her research focuses on the way inwhich somatic sensations are detected, perceived and interpreted, and how this influencesbehavioural responses such as seeking medical care. Her current work involves developingtheory-driven ways to encourage appropriate help-seeking behaviour for early signs oforal cancer. She has authored and co-authored articles in a number of peer-reviewedpublications including the Journal of Psychosomatic Research, and Psycho-Oncology and haswritten book chapters for the Cambridge Handbook of Psychology, Health and Medicine (2ndEdition) and Health Psychology (2nd Edition). Suzanne is currently a Lecturer in HealthPsychology at King’s College London Dental Institute and holds a BSc (Hons) in Psy-chology and MSc in Health Psychology from University College London, and a PhDfrom the Institute of Psychiatry, King’s College London, UK.

Fiona Walter is a UK general practitioner who has developed a programme of interna-tional research on genetic medicine and cancer in primary care. Her research has focusedon the application of advances in cancer diagnostics, genetics and use of the family history

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in primary care, and she has specific expertise in qualitative research methods includingqualitative synthesis. She is currently a National Institute of Health Research ClinicalLecturer at the General Practice and Primary Care Research Unit, University of Cam-bridge, UK and Clinical Senior Lecturer at the School of Primary, Aboriginal and RuralHealth Care, University of Western Australia (UWA), and she has held a Raine MedicalResearch Foundation Fellowship from UWA. Fiona’s doctoral thesis on patient under-standing of having a family history of common chronic disease was awarded the RalphNoble Prize by the University of Cambridge.

Endnotes

* Correspondence address: Suzanne Scott, Department of Oral Health Services Research and Dental Public Health,King’s College London Dental Institute, Caldecot Road, London, SE5 9RW, UK. Email: suzanne.scott@kcl.ac.uk1 In this article, we use the term ‘somatic information’ to refer to any bodily changes (both sensations and visiblealterations) and ‘symptoms’ as a patients description (or label) of somatic information, regardless of whether or notit can be observed by others or is an indicator of disease. This is different from a biomedical perspective that sees‘signs’ as a health professional’s objective description ⁄ observation of a significant finding (e.g. change in pulse ortemperature, a fracture or a visible or palpable lump) and ‘symptoms’ as a patient’s subjective description (e.g. nau-sea, pain, thirst and fatigue) of a somatic sensation, which cannot be observed by others (Pennebaker & Britting-ham, 1982).2 Pack & Gallo appear to use the term ‘symptom’ using the biomedical perspective. Pack and Gallo do not addressthe potential for delay that may occur between noticing somatic information and labelling this as a symptom, or thedelay because of not being aware of somatic information, as discussed later in this article.

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Detectsunexplained

sign(s) and/orsymptom(s)

Infers illness

Decides to seekmedical attention

Acts ondecision by making

an appointment

First receivesmedical attention

Yes

Yes

Yes

Yes

Yes

No

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No

No

Yes No

AppraisalDelay

IllnessDelay

BehaviouralDelay

SchedulingDelay

TreatmentDelay

To

tal Patien

t Delay

Begins treatmentfor illness

Is this the starting point?How does somatic information become explained?

Is there a bidirectional relationship between interpretation and detection?

What does ‘illness’ mean? Is illness inference necessary?

What is the impact of emotion on inferring illness?

What are the alternative coping responses?

What about alternative pathways to diagnosis (e.g. screening or opportunistic detection)?

Is help-seeking a linear process?How is each phase operationised?

How do people move from one phase to the next?Which factors influence each phase?

Should ‘treatment delay’ be expanded?Should ‘treatment delay’ be included in a model of

‘patient delay’?

What is the impact of a changing symptom matrix?

Can contact with HCPs influence previous phases?

Figure 2 Issues facing the General Model of Total Patient Delay.

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