The risk experience: the social effects of health screening and the emergence of a proto-illness
Abstract
Those who undergo health screening often experience physical and emotional effects as a result of the screening process. However, the effects of health screening go beyond these physical and mental complications, often having profound social effects for those who are screened. This study explores the social implications of health screening for people who undergo it and are designated as being at risk for potential disease. Through a qualitative analysis of the experiences of individuals with elevated cholesterol levels and men with elevated prostate-specific antigen (PSA) levels, this research offers a description of the experience of being at risk, identifying three primary components: increased medical contact, a restructuring of everyday routines and altered social relationships. Whereas the at-risk health status engendered by current clinical approaches to screening and surveillance has been characterised as proto-disease, this study develops a companion definition of proto-illness to characterise the social experience of life with an identified health risk. Those who are at risk act in ways that are similar to those who are ill. The concept of proto-illness implies that the experience of risk is parallel to the experience of illness and contributes to the sociology of medical screening by establishing a much needed bridge between the two experiences.
Introduction
Health screening programmes range from dental, hearing, or vision screening in children to the early diagnosis of cancers (breast, lung, colon, prostate) in adults, with cardiovascular health being assessed through the body-mass index and cholesterol throughout an individual's lifetime. The adoption of screening initiatives is based upon the belief by epidemiologists and medical clinicians that disease is progressive and that early intervention has the potential to save lives and leads to better health outcomes. The momentum towards increased health screening is also driven by those outside the medical establishment, including advocacy groups and the lay public (Brown and Zavestoski 2004). While the benefits and value of health screening programmes are often contested (Read et al. 2011, Schwartz et al. 2004, Welch and Black 2010), the push for an increase in health screening continues (Armstrong 2012).
Those who undergo health screening and are considered to be at risk for future disease face a potentially revised health status whereby they may no longer consider themselves to be healthy but, in the absence of symptoms, also find it difficult to define themselves as ill (Aronowitz 2001). Aronowitz describes how symptoms have played a fundamental role in conceptualising disease. Both patients and providers use symptoms in the definition of disease categories and in the construction of the illness experience. However, these symptoms are often merely placeholders for the diseases they represent. A cough, or a fever may indicate an underlying condition that is not readily identifiable. Therefore, as Sachs (1995: 507) notes, ‘the utility of symptoms lies in what they represent, instead of what they present'. As such, symptoms become signs of something else, something that is obscured and must be investigated. Foucault (1973) recognises the primacy of signs over symptoms and how medicine developed a preference for the focus on underlying conditions, ascertained through the consideration of symptoms as signs of something else. This search for underlying disease has transitioned from observing symptoms, or constellations of symptoms as signs of disease, to searching for disease at the molecular level.
Clarke et al. (2003) describe the transition from a medical focus on symptoms and biological signs to a molecular understanding of disease. Through a biomedical approach that relies increasingly on technoscientific approaches, Clarke et al. frame the focus on risk and surveillance as an aspect of biomedicalisation. What we have witnessed is a progression from a focus on symptoms to signs, biomarkers and probabilities. The medical transformation that Clarke et al. describe may also transform the experience of those who find themselves newly defined as possessing a biomarker as a sign of possible disease. Kristen Bell (2013) notes that, for those with realised risk, such as cancer survivors, biomarkers take on the added significance of representing the potential recurrence of disease. Bell recognises that the focus on molecular biomarkers, represented numerically, has meanings for patients that are quite different from their biological meanings.
Beginning with Parsons' description of the sick role (Parsons 1964), and Mechanic's theories of help-seeking behaviour (Mechanic 1995), there has been a focus on how those who experience symptoms and are diagnosed with disease are expected to enact behaviour that is consistent with being ill, including seeking help and following the directions of clinical professionals. In Suchman's model (1965), the experience of illness begins with the symptoms, leading to the subsequent diagnosis of disease. It is the symptom that leads the individual to seek clinical diagnosis, resulting in behaviour intended to manage the problem. Bury (1982) describes the experience as biological disruption, while Charmaz (1983) illustrates how those with chronic illness often experience a loss of self. These conceptualisations of the illness experience pre-date the technoscientific transformation Clarke et al. describe.
However, there has been work that seeks to characterise the experience that results from this new focus on biomarkers of disease. Timmermans and Buchbinder (2010) describe how newborn screening for genetic diseases leads to uncertainty about the health of an infant. They use the concept of patients-in-waiting to refer to those who, as a result of medical surveillance, find themselves between health and illness. I describe elsewhere how this liminal state is frequently the result of statistical probabilities, through the calculation of health risk (Gillespie 2012). Risk status is regularly conveyed in numerical terms to those who are screened, and these statistical representations are often interpreted as predictive of future disease. I use the concept of measured vulnerability to represent the perception of impending disease and sense of uncertainty experienced by those at risk, accounting for the capacity for numerical representations of health status, through statistical risk, to influence how people live their everyday lives.
There has been much work focusing on the theoretical underpinnings of risk (Aronowitz 1998, 2009, Heyman et al. 2013), the meanings of health risks (Armstrong 1995), the meanings and uses of numbers (Adelsward and Sachs 1996), and the uncertainty produced by population screening of otherwise healthy people (Olin Lauritzen and Sachs 2001). However, Armstrong and Eborall (2012) encourage extending the analysis beyond mere descriptions of being screened and the experience of uncertainty towards the development of concepts that can be applied to a range of screening programmes. To this end, I examine potential social effects that are experienced by those who have been screened and designated as being at risk. In addition to the emotional distress experienced by those at risk (Hallowell et al. 2004), and the physical suffering of those who face health risk (Wilkinson 2006), there may be social consequences associated with being designated as being at risk. Examining the parallels between being ill and being at risk will provide a much needed bridge between the two experiences and assist in understanding the secondary effects of medical screening.
Population health screening influences what it means to be healthy in today's society, but these initiatives also alter the very structure of people's everyday social lives. Fundamental aspects of illness behaviour include lifestyle changes such as dietary modifications, increased activity levels, visits to clinicians and the use of medications (Leventhal et al. 2008). Being ill impacts on one's family and work life, and their connection to clinical health care, and introduces new medical regimens (Anderson and Bury 1988). These aspects of the illness experience often involve social manifestations. Being at risk, as a result of medical screening, may be similar to being ill. The extent to which those who are at risk act similarly to those who are ill (having a diagnosed disease) is important to our understanding of the potential impact of medical screening.
This research seeks to understand whether those who are designated as being at risk exhibit behaviour that is similar to those with a diagnosed illness. Similarities in the behaviour and experiences of those who are at risk and those who are ill suggest that being at risk may be a prototypical experience. This new status is best described as proto-illness and viewed as a product of a society that has come to rely on statistical distributions in the management of population health instead of symptomatology in the treatment of individual pathology (Kenen 1996, Welch et al. 2011).
In order to study the social effects of health screening, two cases of routine screening were selected for analysis. Through an evaluation of the experiences of men and women with elevated blood cholesterol levels and men with elevated prostate-specific antigen (PSA), this study involves a qualitative analysis of how individuals who undergo routine health screening interpret the screening process. This research seeks to investigate the social impact that a designation of being at risk has on an individual's life. These social outcomes have been overlooked by research on the individual effects of health screening.
Methods
The study involves intensive interviews with 42 individuals, 21 men and women with elevated cholesterol and 21 men with elevated PSA levels. The study design, including recruitment methods and criteria, was approved by the Brandeis University Committee for Protection of Human Subjects. The cases of elevated cholesterol and elevated PSA were selected because they are both routine elements of regular health exams in the USA. In each case, participants received blood tests that were the result of universal screening programmes. In the USA, a lipid profile, which includes a cholesterol test, is a routine element of a regular physical examination for adults and routine PSA testing is recommended for men beginning at 50 years of age. The participants in this study underwent their initial testing as a result of universal screening, instead of more focused case-finding indicated by the presence of other risk factors. Cholesterol and PSA testing establish risk in difference ways. Elevated cholesterol levels indicate the increased risk for future cardiovascular disease, while an elevated PSA level indicates the possible presence of prostate cancer, prompting further, more invasive diagnostic testing to determine prognosis. The differences in the clinical meanings of these two tests strengthen the ability to derive a more general understanding of the risk experience.
Elevated cholesterol was defined as a total blood cholesterol level of 200 mg/dL or above, while those with a PSA of 4.0 ng/mL or higher were included in the PSA sample. The above thresholds indicate increased risk for cardiovascular disease and prostate cancer, respectively. These cases of health screening were selected because having elevated cholesterol or PSA levels does not involve accompanying physical symptoms that might affect a person's life. This allows for an investigation of the effects of screening rather than symptoms.
Limited demographic information was obtained from the participants, including their gender, age, marital status and cholesterol or PSA levels. While this information was not used in the analysis of data, it does provide a description of the sample of participants in this study. Of those with elevated cholesterol, 10 were women and 11 were men. The women ranged in age from 30–75, and the men's ages ranged from 26–75. In each gender the median age was 45. Men with elevated PSA levels ranged in age from 50–79, with a median age of 60. As PSA levels increase with age, and PSA testing is not recommended for those who are younger than 50, it was to be expected that those in the PSA sample were older than those in the cholesterol sample. Of those with elevated cholesterol levels, 53% were married, while 60% of those with elevated PSA levels were married. Those in the elevated cholesterol case reported total cholesterol levels ranging from 200 mg/dL to 325 mg/dL. However, most participants (72%) reported levels between 200–239 mg/dL, which is considered borderline-high. Men in the elevated PSA case reported PSA levels ranging from 4 ng/mL to 12 ng/mL. In all, 85% of participants had PSA levels of 4–10 ng/mL, although 54% reported a level of 5 ng/mL or less.
Semi-structured interviews were conducted with the participants who expressed an interest in the study and met the inclusion criteria. The interviews included questions about the participants' discovery of their elevated cholesterol or PSA levels, their initial reactions to the information, including the reactions of others and their interactions with clinicians, family members and with friends and co-workers. The participants were also asked about changes they had made in their lives as a result of their cholesterol or PSA levels and how these changes had affected other aspects of their lives and the lives of those around them.
The interviews were transcribed verbatim and analysed, consistent with a general grounded theory approach to qualitative data analysis (Charmaz 2000, Corbin and Strauss 1990). Initial interviews were transcribed and subjected to preliminary coding while recruitment was still underway. Through successive rounds of coding and memo-writing, three distinct types of social effects of health screening were identified. While each risk condition was analysed separately, the analysis was performed with the intention of comparing the experiences of individuals across the two cases.
Findings
Three types of social effects of health screening were identified through the analysis of the interviews with participants with elevated cholesterol or PSA levels: increased medical contact, a restructuring of everyday routines and altered social relationships. Each of these effects will be presented using interview data to illustrate how participants' social lives were affected as a result of undergoing health screening and being designated as being at risk for a serious health condition. A conceptualisation of these effects of health screening expands our understanding of what individuals who are designated as being at risk face as the result of routine health screening (Gillespie 2012).
Increased medical contact
In cholesterol and PSA screening, risk is ascertained through the analysis of blood that is obtained during routine visits to medical professionals. Neither elevated cholesterol nor PSA levels have accompanying symptoms that would suggest to an individual that they are at risk for future complications. While cholesterol and PSA levels increase gradually, and the onset of elevated levels are progressive in physiological terms, their onset is experienced as acute by those who are considered to be at risk. The acute onset of risk as a result of routine health screening is unique to the risk experience, given that chronic illness tends to develop gradually, with accompanying symptoms. Therefore, medical contact is necessary in order to establish a person's risk status due to elevated cholesterol or PSA levels. Many patients focused on the disruption that medical contact had on their everyday lives.
Numerous medical encounters
Participants with elevated cholesterol were informed about the results of health screening either directly by their physician or another medical professional, by phone or via mail (typically including a printout of their test results, along with guides for interpreting the results and strategies for risk reduction). Many participants indicated that their physician recommended repeating their cholesterol test at yearly intervals, with Peter1 saying, ‘It's just been every year since then’.
Men with elevated PSA levels, on the other hand, were generally informed in person during a follow-up visit with their physician. This was typically followed by a referral to a urologist for further testing. While those with elevated cholesterol levels were informed about their risk status, given information about managing it, and advised to have their cholesterol tested again in a year, for men with elevated PSAs their abnormal test results were just the beginning of what was interpreted as an intense series of medical encounters. David said, ‘Well, then they kept doing the PSA testing — blood test every time … every 6 months, I believe it was, they were checking me’. Each PSA test also included an additional follow-up appointment with the urologist to discuss the results.
The differences in how test results were communicated reflect the perceived seriousness of each condition. The tendency to inform men about their elevated PSA levels in person, combined with the increased frequency of surveillance, communicated to participants that being at risk for prostate cancer was a severe health outcome, whereas elevated cholesterol levels were more routine outcomes, not necessarily requiring in person communication.
Kreiner and Hunt (2013) discuss the process by which healthy people are turned into chronic patients through preventive care and risk assessments. They observed that those who are at risk often interpret preventive measures as treatment, and that this may be experienced as a transition to the status of patient. The fact that risk was established through medical contact demonstrates that the encounter is an important element of the risk experience. Being at risk included increased frequency of contact with medical professionals, either primary-care physicians, nurses, phlebotomists or urologists, including phone and mail correspondence. Even those participants who characterised this increased contact as prudent, necessary to monitor and ensure their health, portrayed it as an intrusion that they would like to avoid. The social effects of increased medical contact included participants arranging their schedules around multiple clinical appointments. Many participants mentioned having to leave work for appointments and felt it was necessary to be vague or misleading about the nature of their work absences.
Managing medications or supplements
Medications are considered an aspect of increased medical contact here because they serve as a reminder of increased risk and because of the necessity of obtaining and filling prescriptions, as well as monitoring levels in order to determine appropriate dosages. Those with elevated cholesterol levels were often presented with the option of taking medication to reduce their levels, while those with elevated PSA levels took it upon themselves to use natural remedies in an attempt to reduce their risk. While herbal supplements are not recommended for those with elevated PSA levels, and reducing PSA may serve to confound the interpretation of test results, the use of such supplements was quite common, nonetheless.
I started to take medication for a condition, and I'd never taken medication for anything. Not even really antibiotics, never had anything, never did. So taking and dealing with medication and thinking about having those stacks of pills lined up and all of a sudden thinking about the money, that's changed my life.
Medications restructured aspects of Susan's life. In Gene's words, ‘The medication is every day, in the morning no matter what’.
Every time I take it there's a little blip of concern… I have to be consumed, looking at the clock. I ate at 12:40, got done eating, we'll say, at 1:00, I can't — except for a drink of water, I will not consume even a very healthy snack food, you know, an apple or whatever, until at least 3:00. So therefore, because of that level of consciousness there's some level of concern. Has to be.
Taking medications has the potential to structure an individual's day. McCoy (2009) develops the concept of the medication day to refer to the necessary scheduling of taking medications.
Thus, Archie had to organise his eating patterns based upon the times he was instructed to take his medications. Archie also used natural supplements to reduce his PSA levels and described how he had to fit those into his regimen, only using remedies on certain days.
Many of those with elevated cholesterol were prescribed medication and several of them resisted. However, those with elevated PSA took it upon themselves to seek out remedies thought to reduce their levels. This may be a reflection of the perceived seriousness of being at risk of prostate cancer, compared to being at risk of heart disease.
Those on medication were forced to interact with medical professionals in a manner that was more frequent than if they had not been at risk as a result of their cholesterol levels. The management of medication, as well as any adverse effects of medication, impacted on mundane elements of the participants’ lives. For example, in men with elevated PSA who chose to use supplements in an effort to reduce their PSA levels the use of these supplements also served to alter their daily routines.
Restructuring everyday routines
While the purpose of this research was not to pursue the effectiveness of being at risk as a motivation to change behaviour, it is important to recognise the effects that risk can have on a person's lived reality. Emotional distress can be a significant contributor to the experience of risk but other, more mundane, aspects of an individual's life are also affected by a change in risk status.
Lifestyle effects
Lifestyle modifications were perceived to reduce risk. The most prevalent aspect of a respondent's lifestyle that was influenced by risk was their diet. This was especially the case for men and women with elevated cholesterol levels, although there were limited effects for many of the men with elevated PSA levels. In thinking about managing her cholesterol levels, Heather stated, ‘It's almost exclusively, to me, an issue of what I eat’. The association between cholesterol and food was ubiquitous. Participants reported receiving guidance from their physicians on how to reduce cholesterol levels through diet. However, many of the participants who had elevated PSA levels were also counseled to restrict their diet in specific ways in order to increase prostate health. For most, the dietary advice seemed to be part of an effort by their physician to improve their health generally, with the assumption that better health would translate into improved prostate health.
Dietary changes influence the most mundane aspects of an individual's life, including the planning and preparation of meals, the costs associated with eating healthier foods, and the presence of food as a reminder of risk status. Ken said, ‘I probably think most about cholesterol sitting down, right before I'm cooking’. Other dietary changes that were reported were the elimination of dairy products, eggs, alcohol and caffeine. Avoiding these substances entails more than simply not consuming them, it also involves changes in routines and in how participants socialised with others.
I followed the doctor's recommendations and to some degree I exceed them. He wants me to have 40 minutes a week of exercise — 40 minutes three or four times a week, and I do it seven times a week.
Archie was determined to exceed his doctor's recommendations, and when subsequent PSA tests showed that his levels had decreased he specifically pointed to his exercise as having played a role. Archie's interpretation of the effectiveness of exercise is interesting, given that an association between exercise and PSA levels has not been demonstrated. Nevertheless, modifying diet and exercise leads to better overall health, and many participants’ physicians recommended such changes, indicating that increased general health may lead to better prostate health. This may also be a result of physicians viewing the discussion with these men as a ‘teachable moment’, an opportunity to persuade them to adopt healthy behaviour (Carlos and Fendrick 2004).
Making time to fit increased activity into one's life serves to reorganise other aspects as well. Participants did not describe having to accommodate exercise into their schedules as something that was negative. In fact, many participants reported increased activity as a very positive change.
An important distinction between the two conditions is that cholesterol levels are modifiable in a way that PSA levels are not. While PSA levels fluctuate and can be influenced by factors that irritate the prostate, with reduction of PSA resulting from the avoidance of these irritants, research has demonstrated that cholesterol levels can be significantly reduced through diet, exercise and medication (Whayne 2011). Many participants with elevated cholesterol levels experienced substantial lifestyle effects as a result of efforts to manage their cholesterol. You can do something about your cholesterol levels but that is not necessarily the case with PSA levels. However, it is interesting that the lifestyles of many men with elevated PSA levels were also altered in meaningful ways. Simply being at risk seemed to affect the lifestyles of those who were so designated.
Altered social relationships
Dietary changes and increased activity also influenced how the participants related to others in their lives. Melinda told of how she felt as though she inspired others to eat better and exercise more, and that her husband had changed to a healthier diet because of her, saying, ‘When I met him he was living at his parents’ house and eating pork burritos for every meal. And now he loves tofu, he cooks vegetarian all the time’. Stuart also indicated that his sister's diet had improved, and that she was accompanying him on walks in order to be more physically active. Gene's partner was included in his decision to address his cholesterol levels. He remarked, ‘We recently started walking a half-mile a day, which is good’.
We were living with my in-laws, so it made things a little more difficult. Because it's like, you know, the — the shopping choices as — becomes, like, a more of a family decision. So it was almost like it took me a second to be like, ‘Okay, I'm eating differently than everyone’. Because – until that point, we had eaten as a family.
Contrary to Melinda's experience, Heather didn't feel as though the lifestyle changes she was making were inspiring those around her to make changes, even though she felt it would have been appropriate.
Dietary and fitness changes also altered the socialising habits of participants. Jonathon related how he no longer went to bars or parties where he typically made business contacts, and Marshall described how his avoiding alcohol as part of addressing his PSA levels made social events mildly stressful. Heather recognised the role food plays in social settings, and said ‘Food is more of a social activity, and … that changes things slightly’. Relationships with others, and the importance of food in social settings, constrain individual efforts at lifestyle changes and often result in strained relationships.
My one concern would be if, and when I leave [this company], and I go look for a job someplace else, I wouldn't want it to compromise my possibilities of employment or getting health insurance. That's probably my real concern.
I wouldn't tell anybody here, you know. I don't want to — in business, that's a double-edged sword. ‘Here's that not-so-healthy guy’, you know, ‘he may have cancer’. You know, we go through a round of lay-offs or an acquisition… there is a financial aspect to carrying somebody through your insurance … You know, unless I need to take time off for some procedure or recovery, there's no advantage to me telling that to somebody … I've got to get time off for [my urologist appointments], so every time I go to my doctor [I have to tell] my boss why I'm taking time off. I am pretty general, and vague, and very dis-alarming. I don't want him having concerns about my health. You know, in terms of my long-term viability, and am I going to become a liability to the company? Because of my health, you know, is it going to affect my job?
Lowton (2004) distinguishes between low, medium and high risk situations in the disclosure of illness. Disclosure to employers is identified as a high-risk situation due to the potential for significant consequences for being labeled as ill. The concern Jared and Derek felt as a result of their risk status cannot be ascribed to stigma, but were rational constructions of their perceived risk for the future development of cancer. Being at risk was viewed as a liability with implications that went beyond health considerations.
Disclosure of risk status
Being designated as at risk for a serious health condition meant determining whom to tell, while sometimes deliberately not telling others (Clark and Talcott 2006, Gray et al. 2000). Most commonly, the participants felt that telling others, mostly other family members, about their elevated PSA would cause unnecessary concern. Fowler et al. (2006) found that men who had undergone prostate biopsies were likely to report feeling as though a significant other was concerned about their health.
It's not something that my mother would want to worry about … it's on a need-to-know basis. I don't think it's generally a good idea to blab the details of your medical history because you never know if it'll fall in the wrong hands and somebody will use it against you, but mostly I think it's — why put this burden on people when they can't do anything about you?
[Our daughter] was surprised. ‘What are you doing?’ I said, ‘Well, dad's being interviewed’. And, ‘Why? Why?’ You know, and asking a million questions. I said, ‘The same old stuff. Don't worry about it’.
Jared had not told his partner that his PSA was elevated, thinking of it as personal. And Daniel had discussed his PSA levels with a previous girlfriend but not with his current girlfriend, saying, ‘She's insensitive and — and often not helpful’.
When I went in for the biopsy the first time I told them because I figured, you know, it's just a matter of time. In a couple of weeks they're all going to find out that dad's got cancer. You know? So I figured I'd break the news to them.
The experience of keeping information about one's risk status from others was generally unique to those who had elevated PSA levels (Boehmer and Clark 2001). Those with elevated cholesterol seemed to be more willing to discuss their cholesterol levels with family members. Often, these conversations were the result of having a family history of heart disease or elevated cholesterol. Sarah spoke with her sister often about their cholesterol issues and Seth admitted that telling his father, who also had elevated cholesterol levels, and discussing whether he should begin taking medication, was helpful. Ken also spoke to his father about his potentially taking medication.
The differences in how participants with elevated PSA and elevated cholesterol disclosed their risk status may also reflect the increased perceived seriousness that the potential for cancer has over the risk of heart disease. Those with elevated PSA were more strategic and less open about disclosing their risk status. The need to manage relations with others as a result of being at risk is an important element of the risk experience. Whether relationships were strained, enhanced or simply reworked, being designated as being at risk as a result of health screening served to alter how participants related to others in their social worlds.
Discussion
The experiences of those who have been screened for and considered to have elevated cholesterol levels and men with an elevated PSA demonstrate that there are common characteristics of their behaviour and experiences that can be considered to be general social effects of health screening. Being at risk included increased medical contact, the restructuring of everyday routines and altered social relationships. The social effects of being at risk show how the mere probability of disease has the potential to significantly impact on the ordinary, mundane aspects of an individual's life. Lifestyle changes such as dietary modifications and the introduction or intensification of exercise must be fit into one's schedule. Combined with significantly increased medical contact with medical clinicians for testing and surveillance, these lifestyle changes reconfigure how those at risk organise their daily lives. These reconfigurations can significantly alter social relationships.
Wheatley (2005) describes how those at risk often initiate lifestyle changes that result in stigma and victim-blaming. Participants with elevated cholesterol and PSA levels indicated that changes in their lifestyle and social relationships were a result of their designation of risk in relation to perceived stigma. These changes influenced how the participants in this study interacted with others. Regardless of the nature of the effects on social relationships, being at risk altered their relationships and forced the participants to manage them in a manner that would not otherwise have been necessary. Paying close attention to these social effects adds to our understanding of the experience of being designated as being at risk and the potential effects of health screening, generally.
Each of the cases studied here involves the possibility of a patient being diagnosed with a pseudo-disease, through over-diagnosis without any accompanying symptoms (Welch and Black 2010). Elevated cholesterol or elevated PSA levels do not, of themselves, constitute disease. Instead, there exists the numerical probability of disease. Rosenberg's (2009) use of the term proto-disease to characterise this condition is important as it recognises the potential for a statistical designation to develop into a clinically significant health problem.
The focus of population-based medical screening is on asymptomatic, otherwise healthy individuals, with the aim of preventing future disease. The identification of pre-disease, or of potential disease based upon population risk calculations, allows for preemptive therapies. Greene (2007) notes how many interventions intend to address diseases from which individuals do not yet suffer. The result is a proto-disease state that is believed to be in need of medical treatment (Rosenberg 2009). This category of disease may not only have no symptoms, but also no lesions or other identifiable pathology. The only signs of potential disease may be at the molecular level, expressed as risk factors. The proto-disease state that results from numerically derived health screening as a result of routine tests produces proto-patients. As such, proto-patients now face numerous additional tests and treatments, with the associated side-effects and must manage a condition for which there was no outward manifestation prior to being designated as being at risk.
Scott et al. (2005) discuss the liminality that accompanies being at risk for disease. This liminal experience was common among the participants in this study. Additionally, the numerical label, in terms of statistical probability, indicated to them that disease was a potential result of their current health status. This is a prototypical illness state. As such, those at risk consider themselves to reside in a space between healthy and ill, with the likelihood of progressing toward illness. Findings from this research suggest that there is a corresponding illness experience that results from a diagnosis of a proto-disease. The participants were not managing the symptoms of disease, but were managing the consequences of a perceived illness in the absence of symptoms. This experience is best conceptualised as proto-illness, implying that an individual at risk is on a trajectory toward illness. As the clinical encounter becomes increasingly devoted to health screening, more people will find themselves in this proto-illness state.
In a special issue of Sociology of Health & Illness on medical screening, Armstrong and Eborall (2012) explain the need for sociological analyses of screening that yield concepts that can be applied to a range of screening activities and that go beyond a mere descriptive account of a single screening practice. This article strives to fill the need Armstrong and Eborall identify by elaborating the concept of proto-illness, developed through the analysis of the social effects of being at risk for heart disease and prostate cancer, but that can be applied toward an understanding of what it is like to be screened for cervical cancer, stroke, lung cancer or other potentially serious health conditions. The objective has been to extend the sociological study of medical screening beyond the recognition that being at risk produces anxiety and uncertainty to an understanding that being at risk impacts on an individual's social life, beyond individual definitions of health and illness and unease about one's health status. The concept of proto-illness contributes to the sociology of medical screening by establishing a much needed bridge between the experiences of being ill and being at risk. The concept of proto-illness implies that the experience of risk is often parallel to the experience of illness, but that there are important differences that result from the lack of symptoms in many instances of being at risk. Additionally, the extent to which being at risk is experienced as proto-illness may be magnified relative to the perceived seriousness of the associated condition.
Conclusion
Instead of leading to greater certainty in those to whom numerical categories of risk are applied, a definitive classification of their current health is not offered (Austin et al. 2013). A common effect of health screening and the experience of being at risk is uncertainty (Burton-Jeangros et al. 2013, Sulik 2009). Uncertainty results from an incomplete understanding of test results, inadequate communication with health professionals and undeveloped social roles for those who are at risk. Navon and Morag (2004) posit that those at risk face uncertainty as a result of their liminal status and their ‘inability to classify themselves into culturally available categories’ (p. 2337). The risk experience, in the absence of symptoms, becomes about the effects and management of uncertainty as those at risk struggle to make meaning of a diagnosis that does not include any physical manifestation of disease.
The classification of risk as a proto-illness has the potential to influence health policies on health screening and continued risk monitoring, as well as the designation of risk thresholds. This application may also be appropriate for risk factors other than those included in this study. For example, hypertension is a risk factor for heart disease and stroke that typically does not have any accompanying symptoms. Similarly, the presence of cancer antigen 125 (CA-125) in a woman's blood places her at risk for ovarian cancer. There are also numerous genetic risk factors that may likewise be experienced as proto-illnesses (Timmermans and Buchbinder 2010).
The increasing capacity and prominence of epidemiologically and technologically identified, and clinically constructed, disease categories has led to a heightened focus on conditions that are characterised by the probability of disease. These conditions do not involve associated symptoms and their diagnosis is the result of tests that clinicians order as a matter of screening practice rather than to address specific patient's complaints. The findings of this research suggest that health screening is not a benign undertaking that can be applied indiscriminately. Rather, clinicians should recognise the importance of a directed and selective approach to health screening and the designation of being at risk (Hansson et al. 2012).
There are similarities in the experiences and behaviour of those who are ill and those who are at risk. As we continue to witness the emergence of a new category of health status, being at risk, these similarities are to be expected, and should be explored. The concept of proto-illness links these two experiences, providing an important bridge between being ill and being at risk. Conceptualising the at-risk health status as a proto-illness allows for analyses that recognise the emergence of new social dynamics that emerge from the application of statistical probabilities in the assessment of individual health.
Acknowledgements
I would like to thank Jack Clark, Peter Conrad, and the CHOIR Writers’ Group for comments and insights in the development of this paper. I would also like to thank the editors and reviewers for providing direction and very useful feedback.
