Christine Bundy and Lis Cordingley
Institute of Inflammation and Repair, University of Manchester, Manchester, UK
This chapter focuses on the psychological and social impact of living with a skin disease and those factors that may exacerbate a skin condition. Much of the research to date has been conducted with chronic plaque psoriasis and somewhat less with other important skin diseases, including atopic eczema, vitiligo, chronic urticaria and acne. Thus, this chapter focuses on long-term conditions, mainly psoriasis, but evidence is increasing that the same principles concerning psychological burden with impacts on social and emotional functioning apply to many dermatological conditions, particularly those with long-term sequelae. Further work is required to determine if there are both generic psychological issues associated with living with skin disease and specific issues associated with the individual diseases. For the near future it is reasonable to assume the findings from psoriasis research may also apply to the other skin conditions until we have evidence to the contrary or more information about the specific concerns linked with each condition.
Most societies, but western societies in particular, attach a great deal of importance to people's visual appearance. People are often judged as more intelligent and trustworthy if they are rated more attractive [1]. For women in particular a youthful appearance, symmetrical features and an even complexion free from blemishes, independent of skin colour, is the ideal. Advertisements regularly link even skin tones with other desirable attributes such as youth and health, and cosmetic or beauty products promise a ‘healthy glow’ in exchange for, sometimes considerable, financial outlay. This is the backdrop against which people with skin conditions feel they are judged as being more, or less, attractive and acceptable in society. Skin conditions such as acne, psoriasis, atopic eczema and vitiligo rarely escape notice and by their very nature draw attention to the departure from this ‘ideal’.
In addition to its perceived visual importance, the skin is our largest sensory organ and it performs essential functions to maintain health including defence against heat, cold and other external assault as well as helping to regulate body temperature. Any disruption to these functions due to trauma or disease can have a physical, social and psychological impact on the person affected. For example, skin is particularly susceptible to the effects of stress, generating a physiological response (e.g. visibly increased sweating and blushing) and, in turn establishes a cognitive (e.g. attributions of the cause and consequences of the blushing), emotional (e.g. embarrassment, shame and further social anxiety) and behavioural cycle (e.g. avoidance of social interactions and intimacy; social discomfort and awkwardness) which can be distressing and difficult for the individual to manage.
The obvious visible manifestations of skin conditions are associated with reduced self-esteem [2]; anxiety and depression [3]; and social avoidance and social isolation [4]. People with skin conditions commonly report having been bullied as children due to their appearance [5] and adults living with skin conditions frequently report feeling distressed by other people's reactions to their appearance. Strangers often stare and sometimes comment on their appearance and most people with a skin condition report experiencing social rejection at some point in their lives. Some of the general public believe, erroneously, that it may be contagious and their reactions convey revulsion and they may physically withdraw. This prejudice (negative stereotypical beliefs) can lead to hostility (the emotional reaction based on those negative beliefs) and active discrimination such as being asked to leave public swimming pools and hairdressing salons or receive unsolicited negative comments. Some patient support associations have advocated concerted public awareness campaigns for the general public is warranted to lessen this impact over time.
The British Association of Dermatologists (2011) [6] reported that 54% of the UK population is affected by some form of skin complaint each year, and that 24% of the UK population consult general practitioners for a skin problem in any 12-month period [7]. Coupled with the knowledge that 85% of patients with a skin disease indicate that psychological and social aspects of their condition are a major component of the condition [8], it is surprising that relatively little attention is given to this area of research. Whilst many conditions can affect the appearance of the skin in a range of different ways, this chapter draws on the research conducted in the following common conditions: acne; atopic eczema; vitiligo; and psoriasis, as exemplars, to highlight the psychological and social impact of an altered appearance due to skin disease. This chapter outlines the psychological and social challenges that patients living with these skin conditions experience and consider the current provision of psychological support and interventions for those affected.
High levels of distress have been linked to the range of skin conditions in a number of studies and these are covered in more detail below. However, methodological limitations, including the heterogeneity of the samples and the measures used to detect distress, across studies prevent precise claims about the prevalence of distress being made.
Many studies on distress in atopic eczema have been conducted in children and parents of children with the condition and demonstrated widespread anxiety and reduced quality of life. It is generally well established that this condition carries with it a significant degree of impairment to quality of life and distress [39] but also that this in turn can aggravate a flare [40]. Furthermore, Misery and colleagues show that atopic eczema has an additional impact on sexual relationships for affected people and their partners [41]. One of the few studies to examine the impact of the skin condition on frustration and anger responses showed that over half of the patients sampled claimed to be angry and frustrated about their appearance most of the time [42]. Anger as a response to the perceived health threat or identity threat is underexamined across other dermatological conditions generally.
There is generally less research on the role of distress in patients with vitiligo than in psoriasis. Some studies have shown that vitiligo can have a profound impact on psychological functioning including anxiety, depression and suicidal ideation [43]. Social stigma, particularly among patients with heavily pigmented skin and vitiligo is common and the contrast between the dark skin and patches of loss of pigmentation may make the condition more visible. Furthermore patients who have vitiligo who belong to a black or ethnic minority group describe a loss of ethnic identity associated with the loss of pigmentation and this may be as distressing as the visibility of the skin condition [43, 44]. Despite the reports of distress in patients with vitiligo, there are few intervention studies for managing mood or reduced quality of life in this patient group.
Cognitions or beliefs are central to understanding distress and the associated responses of people with skin conditions (Figure 11.1). It is well established in research into other long-term conditions that specific beliefs about the disease including the necessity of, and any concerns about, treatments prescribed, explain a significant proportion of the variance in non-adherent behaviour (see for example [9]). Patients’ subjective perceptions of their symptoms and the illness are important determinants of both coping and of health outcomes including quality of life which is consistently shown as impaired across dermatological conditions. Despite an extensive literature on the emotional and social consequences of living with skin conditions (as outlined below) there are surprisingly few studies of underlying beliefs held by those with them. Most studies have been conducted in psoriasis, where a much clearer picture of the key beliefs and unhelpful patterns of thinking about the condition are evident [10]. Perceptions of seriousness, degree of personal and treatment control, symptom perception and understanding have all been identified as influential components of the individual ‘personal models’ of their dermatological condition held by patients.
Fear of negative evaluation by others, embarrassment about appearance and low self-esteem are common across skin conditions but have been documented more thoroughly in psoriasis than in other conditions [11, 12]. While some aspects of emotions including low mood or anxiety, may respond to pharmacological treatment, the management of emotions is more likely to be successful using talk therapies such as cognitive behavioural therapy (CBT). Indeed the National Institute for Health and Care Excellence (NICE) recommendation for first line treatments for low mood with a chronic physical health problem is for talk therapies rather than medication [13]. Understanding the drivers of emotional reactions to dermatological conditions, therefore, is crucial for effective management.
Stress is a term that is often used to depict both an event (stressor) and an individual's response to it (stress reaction). More recent dynamic models of stress emphasize the importance of the individuals’ appraisal of the meaning of the event and his/her perceived capacity to cope with it. This ‘transactional’ model [14] helps to explain individual differences in how people respond to the same stimuli by seeing the event as either a manageable challenge or an unmanageable threat. Stress in people with skin conditions has been thoroughly researched, mainly in psoriasis, but also in acne, eczema and vitiligo.
The relationship between stress and skin conditions appears to be more clearly defined in psoriasis and there is a substantial body of research exploring the nature of the relationship as well as the interventions to manage it. Stress can affect immunity indirectly (e.g. through health behaviours where it may contribute to people eating a poor diet, smoking and drinking) and also skin functioning directly (through dysregulation of the hypothalamopituitary–adrenal axis). The emergence of the field of psychoneuroimmunology (PNI) has identified pathways between psychological and physical functioning and evidence from recent PNI studies on chronically stressed people and controls have confirmed the link between increased pro-inflammatory cytokines and delayed healing processes [15, 16, 17]. What may be of particular relevance for the management of those with inflammatory skin conditions is the evidence that the cortisol awakening response is increased in those with high levels of repetitive stressful thoughts (i.e. rumination about past events or anticipatory worry about future events) [18] and therefore may explain inflammatory flares in those who particularly fear negative evaluations of their appearance. However, the relationship between stress and immune functioning is neither simple nor straightforward. Indeed, some inflammatory conditions have been shown to improve with periods of stress [19, 20], but the more usual observation is that stress exacerbates immune-mediated inflammatory conditions.
High levels of emotional distress across a range of dermatological conditions including psoriasis [21], acne [3], vitiligo [22] and eczema [23] are well documented. A common finding across a number of skin conditions, indeed also across other long-term conditions including diabetes and cardiovascular disease (CVD), is that the degree of psychological distress experienced is not necessarily related to the severity of the condition. In some reports there is an inverse relationship with some people with less severe conditions reporting more distress. This suggests distress is mediated by other factors which may include beliefs about the condition and its treatment as well as social and other contextual factors.
Common sense would suggest that the visibility and severity of the skin condition is the main determinant of distress, but few studies have examined the associations between mood, the location of lesions and extent of coverage of the skin. The small amount of available evidence presents a surprisingly mixed picture. For young people with acne, higher severity was associated with higher levels of distress [24]. In contrast, studies undertaken in psoriasis demonstrate that this is not always the case [25]. The findings in the study of acne patients may be due to methodological artefacts including the different measures used which focus on the most severe depression or the adolescent population sampled that, as a group, tend to place more value upon visual appearance than adults.
Some studies have shown that hands and face are ‘emotionally weighted’ areas but other intimate areas such as the breasts and genitalia are also likely to be associated with increased distress even if they are not generally visible. Precisely which are the most distressing locations for skin lesions remains unknown. Patients who experience facial psoriasis tend to report more itching, have more severe disease and it tends to present as early-onset type [26].
One reason why we cannot use ‘common-sense’ assumptions nor generalize among people with similar skin conditions is the degree to which people differ in their concern about how they are perceived due to their appearance. For example, Leary and colleagues found that the severity of psoriasis was only associated with distress in individuals who feared negative evaluation by others [27]. The degree to which such fears can be modified is currently unclear, although this would be a suitable focus for psychological intervention.
Depression is characterized by generally negative thought processes, inability to concentrate, low or flat mood, decreased interest in previously pleasurable activities, social withdrawal, and it is often accompanied by appetite and sleep disturbance. For those with severe and enduring depression, there is a high risk of suicidal thinking and suicide attempts. The prevalence of suicidal thinking and actual suicide attempts successful or not, across dermatological conditions is not known.
Recent research has shown prevalence of low mood, depression and thoughts of suicide are higher in people with psoriasis than in other dermatological conditions such as acne, or indeed other non-dermatological long-term conditions [28]; however, precise estimates of depression among psoriasis patients are not available and ranges are dependent upon assessment methods used. The prevalence of depressive symptom reporting has been reported as high as 62% of patients with rates of active suicidal ideation ranging between 5.6 and 7.2% [29].
Patients with psoriasis often experience increased distress [11, 30], feelings of self-consciousness, shame and embarrassment [31], increased stigma and psychological burden [32] and, in some cases, may be at increased risk of suicide [29]. This increased psychological burden can lead to the use of avoidant coping strategies [31] and may be the reason for excessive alcohol use, which in turn can exacerbate a psoriasis flare.
Depression is more prevalent among younger men with psoriasis and this group often has the highest alcohol use which may imply many are using alcohol as a method of self-medicating [27]. Despite these indications of high levels of distress there is good evidence that clinicians are not good at detecting distress [30] and there are few interventions specifically focused on managing mood in vulnerable patients. The exact mechanisms linking skin conditions and depression are unknown and likely to involve shared pathways involving physiological and psychological functioning. Although there is increasing recognition in general and family medicine that this is an issue that needs to be taken seriously, it is still an underrecognized and undermanaged part of good clinical care in dermatology. There is an urgent need to address this problem across dermatological conditions.
Anxiety and worry have been identified across a wide range of dermatological conditions. Although anxiety often manifests as social embarrassment and avoidance, more generalized anxiety including worry about disease progression or recurrence is also common. The degree of reported anxiety is generally considerably higher than levels of reported depression but it is important to note that symptoms of anxiety and depression can often occur together.
Anxiety, especially social anxiety and depression [33], low self-esteem, poor self-image, excessive self-consciousness and embarrassment [34] are common amongst people with acne vulgaris. Acne may be especially distressing for younger people, since it mainly affects the face and is difficult to disguise, especially for men. The condition often appears at a crucial stage of social and identity development and this can have long-lasting effects on the individual. In a large study of over 9000 young people in New Zealand, Purvis and colleagues [35] found symptoms of clinically relevant depression were reported by 14.1% of the sample, whilst 4.8% reported symptoms of anxiety. Purvis and colleagues showed that the presence of depressive symptoms did correlate with increasing acne severity and more than 2000 students (23.6%) in this study reported having suicidal thoughts and 730 (7.8%) reported having made a suicide attempt in the previous 12 months.
Treatment of acne with oral isotretinoin was thought to be linked to increased suicidal ideation and suicide attempts [36] but a recent study questioned this relationship and demonstrated it was effective at controlling the acne while reducing the future scarring associated with acne as well as reducing anxiety and depression symptoms [37]. One large-scale study (over 5000 individuals) on people with severe acne has shown that the risk of attempted suicide before, during and after treatment with isotretinoin was not associated with the treatment itself. However, in those participants with severe acne who were not treated there was indeed an increased risk of attempted suicide [38]. On balance, it seems that moderate to severe acne carries with it an increased risk of suicide attempts and suicide completion but this may not so for those treated with isotretinoin specifically.
Poor coping, including excess alcohol use, overeating, smoking and other health-threatening behaviour may be indicative of distress. Similarly, social avoidance is usually indicative of underlying distress. In reaction to prejudice and discrimination, many patients resort to poor self-management. This pattern of health-threatening behaviour probably indicates high levels of distress but it is difficult to establish causality. Similarly, the excessive social avoidance commonly seen in people with skin conditions may be indicative of a bi-directional relationship between poor coping and emotional distress.
As well as the effects of psoriasis itself, some of the treatments offered for psoriasis management can be unpleasant to administer, odorous and time-consuming, and biological medication in particular, can confer serious and, in some cases, life-threatening unwanted effects. There is an established problem of non-adherence to topical and systemic medication among patients with psoriasis [45, 46] whether this is true of self-administered biological medication is not known. Beliefs about medication are likely to play a role in non-adherence in psoriasis as in other conditions.
Non-adherence to prescribed treatments is common across the range of dermatological conditions and is not specific to atopic eczema (see below for a more detailed exploration of non-adherence). This can result in treatment failure in childhood eczema [47] and the 2007 NICE guideline on atopic eczema in children [48] concluded that poor adherence is most likely the main cause of treatment failure. Despite this, relatively few studies have examined the precise reasons for non-adherence specifically in atopic eczema and even fewer intervention studies exist. One qualitative study explored the barriers to adherence and the strategies carers used to overcome those barriers [49]. These authors found the main barriers included carer beliefs around eczema treatment, the time-consuming nature of applying topical treatments and their child's resistance to treatment. The strategies parents used to overcome those problems included involving the child in treatment, distracting the child during treatment, making a game of it, using rewards, applying treatment to a sleeping child or, in a few cases, physically restraining the child. Some carers reduced the frequency of applications in an attempt to reduce child resistance. This latter strategy identifies the lack of understanding of reasons for non-adherence, as in studies of adherence, this would be considered non-adherence and may be misattributed to lack of parental concern or cooperation.
Childhood eczema or atopic eczema is common, with a prevalence of around 16–20% in the UK by the age of 20 [50]. Of cases, 90% appear before the age of 5 years and around one-third of those will continue to have eczema into adolescence [51]. The impact on sleep loss due to itching can leave the child sleepy and irritable [52] leading to daytime fatigue, which can also increase psychological distress. Disruption of sleep can lead to poor concentration which can subsequently affect learning and over time reduce educational attainment from missed days at school [53]. Behavioural problems related to atopic eczema are well documented [54] and there are reports of children being teased at school, especially during exercise classes or swimming activities, which is likely to have a lasting impact on self-esteem and confidence. The impact on the wider family can also be significant; parents describe the extra time taken to care for the child and interruption to their employment with its associated indirect financial costs [51].
Dermatological conditions can affect relationships of any kind including close intimate relationships as well as those across a person's social network. The number of members and the quality of relationships in a social network are important and people with increased well-being tend to have more extensive network connections with members and also close confiding relationships.
Social stigma refers to the experiences some people have that indicate extreme disapproval of or discontent with them on social grounds. These experiences, real or perceived, serve to differentiate them from other members of society. People living with skin conditions commonly report feeling distressed by other people's reactions to their appearance – strangers often stare and children comment on their appearance and some of the general public believe, erroneously, that it may be infectious [31].
In later childhood and early adulthood, when physical appearance and attractiveness become increasingly important, the chronically inflamed, cracked, dry skin associated with atopic eczema is viewed as unattractive. Uninformed people often mistakenly believe atopic eczema to be contagious, as they do psoriasis, and hesitate from touching people with the condition, which can further increase embarrassment and distress and lead to social withdrawal; experiences of discrimination are commonly reported by patients.
Embarrassment, worry and concern are common in vitiligo [55] as are disruptions to relationship development and sexual activity [56]. People also report experiencing discrimination and the subsequent impact on their quality of life [57]. However, some people cope well with the challenges presented by vitiligo and many develop great skill in using camouflage techniques to disguise it. This variability in adjustment has led some authors to propose that pre-existing vulnerabilities account for differences in reported distress within the vitiligo population, rather than it being a consequence for everyone who has the condition. Earlier studies claimed that stress could trigger vitiligo [58] but better controlled and more recent studies have not shown such a clear finding [59].
There is increasing evidence for the lifelong impact of living with psoriasis. The work of Kimball and colleagues in psoriasis indicates that the impact is far reaching and long lasting [60]. However, much of this evidence for the cumulative life course impairment is taken from cross-sectional studies and relies heavily on patient recall, often over a long period of time. There is little longitudinal research in this area and although studies to date have not been able to determine cause and effect, single case studies support the view that having psoriasis is indeed the driver for the associated life impairment. Given that the onset of psoriasis which, for 25% of people affected occurs before the age of 18, is associated with significant physical [61] and psychological [62] co-morbidities it is surprising that there is so little longitudinal work conducted on early-onset psoriasis and its effects at key milestones in a person's life.
Some factors make people with psoriasis more susceptible to this life-course impairment. These include greater perceived stigma, associated co-morbidity, for example, psoriatic arthritis, CVD and depression. This potential cumulative burden overwhelms peoples’ ability to cope effectively and they may resort to maladaptive coping strategies, feelings of hopelessness and helplessness and a reduced sense of control over both their life and the underlying skin condition.
Skin changes are probably the most obvious visible signs of ageing with both structural and tonal changes reflecting increasing age. Younger skin is thicker, smoother and has fewer blemishes or irregularities of colour than older skin. Whilst young skin is valued in and of itself, many individuals view retaining youthful skin appearance as a motivational driver of their regular skincare practice. The ageing effect of many conditions and their treatments are in themselves a source of distress.
There is little longitudinal research on the impact of living with a skin condition from early life and although studies to date have not been able to determine cause and effect, single case studies support the view that having a skin condition can drive cumulative life impairment, reduce the likelihood of being employed and seriously impact on long-term relationships [51].
Skin conditions in the very young can be highly distressing for both the child and his/her parents or other carers. The impact of symptomatic dermatological conditions can be life changing, especially for those with severe conditions or who experience poor management. Rather than providing comfort, the touch of a parent or of bedding and clothing can be a source of irritation or pain for young children with affected skin. This can lead to deprivation for both child and parents of the valued and comforting experience of close contact, an integral component of attachment processes in early infancy. ‘Skin-to-skin’ contact is known to improve many aspects of well-being in very early life and is a central part of care for very young and preterm infants. There is strong evidence of improved physiological functioning, including cardiovascular and immune functioning associated with close parent–infant contact. Limiting physical touch is profoundly upsetting for parents and other carers of young children with painful dermatological conditions.
In later childhood, adolescence and early adulthood, when physical appearance and perceived attractiveness are particularly salient, the chronically inflamed, cracked, dry skin associated with conditions such as eczema or psoriasis is particularly distressing. The general public often mistakenly believe it to be contagious and hesitate from touching people with eczema, which can further increase distress and lead to social withdrawal. There is little specific research in this area, but it is feasible that coping strategies such as social withdrawal acquired during this important period of social development may have long-term effects.
Acne vulgaris is the dermatological condition most associated with adolescence, and it is so prevalent that it could almost be claimed as a universal experience at some point during the teenage years [63] with up to a fifth of individuals experiencing moderate to severe forms between the ages of 15 and 17. It occurs rarely in prepubescent individuals, however, for up to 64% of individuals the acne and associated problems extend into early adulthood [63]. Acne may be especially distressing for younger people, since it mainly affects the face and is difficult to disguise, especially for men who feel that cosmetic camouflage is less acceptable. It typically appears at a crucial stage of social and identity development and this can have long-lasting effects on the individual, including poor social functioning leading to impaired social networks [64].
Changes to skin structure and colour are instantly recognizable indicators of the physical ageing process. The impact of skin conditions in later life is largely unknown. There is a common assumption that changes in appearance associated with ageing are less problematic than those occurring earlier in life; however, for a proportion of people, the changes during the ageing process either in normal or premature ageing are distressing.
Physical co-morbidities associated with skin conditions can add to and occur as a result of the psychological and social impact of having a skin condition. For some individuals, this can add to the burden directly due to the added challenge of an additional disease, whether or not they currently experience it. The knowledge that the skin condition which presents first can also be considered a risk factor for another significant co-morbid condition (e.g. psoriatic arthritis or thyroid disease in the case of vitiligo) adds to the perceived threat, and the likelihood that people may be hypervigilant or misinterpret benign symptoms as important markers of an emerging condition.
Psoriasis is associated with considerable physical co-morbidity. Classes of co-morbid conditions include musculoskeletal (e.g. psoriatic arthritis [65, 66]), gastrointestinal (e.g. inflammatory bowel disease or Crohn disease [67]), metabolic disorder (e.g. diabetes [68, 69, 70, 71]), non-alcoholic fatty liver disease [72], CVD (e.g. myocardial infarction [69, 73]), although the precise nature of these relationships is not yet fully understood [74]. Immune dysregulation [75] and inflammation are thought to play key roles in both the development and progression of psoriasis and these processes have been proposed as mechanisms explaining the increased incidence of co-morbid conditions in people with psoriasis [76].
Unhealthy lifestyle behaviours are known to be more common in individuals with psoriasis and this further complicates our understanding of psoriasis-associated co-morbidities. Psoriasis is associated with excess alcohol use [74, 77, 78], smoking [79, 80], inactivity and higher body mass index [81]. These behaviours may have a role in both psoriasis onset and exacerbation or severity [80, 82, 83, 84, 85, 86, 87]. Furthermore, the complex interactions between physiological and behavioural processes can be compounded by the high levels of psychological distress associated with psoriasis. Distress, as well as increasing risk behaviour (such as excess alcohol use) can reduce motivation or capacity to engage in healthy behaviours.
Even specialist health care practitioners express low confidence in recognizing, acknowledging and helping patients to manage skin diseases with recognized co-morbidities [88, 89, 90] and this adds to an already challenging set of health issues for affected people as they struggle to understand the complexity of managing a skin condition and increased co-morbidity risk.
Currently, the term ‘adherence’ is preferred to ‘compliance’ as a way of reflecting the extent to which patients stick to the advised or agreed treatment regimen. Non-adherent behaviour can be categorized as unintentional or deliberate with the former reflecting failure of capacity to achieve a desired goal, such as forgetting, or practical barriers to self-care, such as mobility restrictions. Deliberate non-adherence is more likely to reflect patient concerns about the treatment or their beliefs about its necessity [91].
Topical applications are the first line treatments for many dermatological conditions and by their nature can be messy, inconvenient, difficult to apply, unsightly, sometimes malodourous, and costly as they can stain clothes, bedding and furniture. For these reasons the long-term use of topical treatments is a particular challenge for many patients and their families, especially those on low incomes. Add to this anxiety about the extended use of treatments such as topical steroids and concerns about skin thinning, plus its perceived fear of future lack of efficacy, it is unsurprising that adherence rates for long-term topical treatment use are low in some conditions [46, 92].
For inflammatory skin conditions, biological medication use can confer serious and, in some cases, life-threatening unwanted effects. There is an established problem of non-adherence to topical and systemic medication among patients with psoriasis [45] but whether this is true of self-administered biological medication is not yet known. Beliefs about medication necessity and concerns about ‘toxicity’ are likely to play a role in non-adherence.
People with skin conditions often report dissatisfaction with the clinical management of their condition [93, 94, 95, 96] and this can have a knock-on effect on medication adherence which is recognized as problematic [46, 97]. At worst, disengagement from seeking professional health care can occur [89, 98, 99]. In the UK, the 2009 NICE clinical guideline (CG76) [91] on treatment adherence draws upon extensive psychological research and recommends a ‘non-judgemental’ approach to communicating with patients about adherence. This is particularly pertinent for dermatological conditions where the modes of delivery (e.g. topical application, phototherapies, camouflage, self- and clinician-administered injections or infusions) are particularly onerous, and so an appreciation of the difficulties involved in treatment adherence is an important first step in achieving open communication. Other concerns or disincentives to adhere are driven by people's beliefs about the nature of treatments such as fears about toxicity or long-term efficacy. Discussions that address patients’ beliefs about the necessity of the treatment including efficacy of each particular administration modality as well as patient concerns about unwanted effects have been found to influence adherence rates [100].
The emerging area of e-health opens up the possibilities for technological solutions for supporting adherence to medication. Memory prompts via text messaging or online pages may appear to offer new and cost-effective ways to optimize adherence. To date, there is little evidence for the efficacy of these approaches and some early studies show mixed results. However, this is a rapidly developing field of health care delivery generally and undoubtedly soon there will be a proliferation of devices and aids to support medicines adherence, it is hoped those adopted have an adequate evidence base to be used across health conditions.
The psychological approach to the patient management of a long-term condition with associated distress emphasizes the central role of cognitions (beliefs) that generate emotional responses and the resulting combination of thoughts and feelings subsequently determines behaviour. Therefore, in order to understand emotional reactions including distress and the relevant behaviour it is important to examine the underlying beliefs. This forms the basic framework of the CBT approach to managing psychological difficulties.
Good clinical management of the psychological and social difficulties associated with dermatological conditions includes an assessment of beliefs, mood and behaviour including how they self-manage the condition. Formulating a treatment or intervention plan is not possible without this assessment and it is important to use validated measures wherever possible. Active listening is a key assessment skill, not just to what the patient actually says but inferring meaning and attending to the emotional content of what and how the patient talks about their skin condition. For example, in response to the key question ‘How does having eczema/psoriasis/vitiligo/acne affect you?’ the patient response of ‘Well, I have had to learn to live with it’ could be taken at face value and as a self-evident fact, but if the emphasis is on ‘Well, I have had to learn to live with it’, this may betray beliefs of fatalism and indicate a level of distress or helplessness and hopelessness about any effective treatment. Conversely, the emphatic ‘had to’ may indicate anger at not being given the necessary level of support to self-manage effectively. This may in turn result in poor adherence or self-medication using non-prescribed treatments.
While it goes without saying that the management of the whole person is the ideal, too many patients experience having their skin examined but nothing else. In a survey of over 600 UK psoriasis patients, fewer than 10% were aware of the Dermatology Life Quality Index [101]. Some individuals with skin conditions, especially those who do not consult a dermatologist, report not even having a full skin examination but receive a cursory glance at the easiest accessible plaques or lesions. As discussed, patients are likely to be embarrassed or ashamed of their skin complaint and therefore will be reluctant to reveal the extent of the condition. The research literature identifies that some patients, most notably those with psoriasis, experience difficulty in experiencing, identifying and expressing how they feel about living with the condition, this is termed alexithymia [102]. Repeated attempts to conceal an unsightly skin condition and frequent experiences of embarrassment may result in an avoidance form of coping by distancing oneself from the emotion associated with the condition. If this is suspected then it becomes the responsibility of the health professional to gently insist on seeing the skin to examine it and to routinely but sensitively address the emotional aspects of living with the condition integral to the assessment.
Within a standard consultation there is limited time to cover everything each time the patient is seen so a managed approach to skin conditions as a long-term condition is preferable to accommodate the whole person perspective. Planned activity can be spread over a longer time period but a brief psychological assessment on first meeting the patient is necessary. This brief assessment may amount to little more than asking seven key questions to access the patient's beliefs, mood and behavioural response to the condition, as well as the goal they may wish to achieve with treatment. Careful listening for both content and meaning can elicit important information about likely self-management. These questions help to assess what the patient already knows about the condition and whether that understanding is accurate or whether there are gaps in their understanding. This assessment can give the clinician information on which to judge whether a more thorough assessment is necessary. These questions are outlined in Table 11.1.
Table 11.1 Brief assessment of patient beliefs held about their skin condition
Key belief | Suggested question | Comment |
Causal belief | What do you think caused this condition (or most recent flare)? | Adapt by replacing condition with appropriate term: acne, atopic eczema, psoriasis, vitiligo |
Impact belief | In what way do you think it will (or does) impact on how you live your life? | Probe for anticipated impact as well as current perceived impact. Future impact may reveal concerns (e.g. about medicines use) over time |
Emotional reactions | How does having this condition make you feel? | Continue to ask ‘Are there any other ways?’ until the patient replies no then ask them to indicate which one concerns them most |
Consequence beliefs | What is the worst thing about having this condition? | Explore worse consequences from personal and intimate relationships, social relationships, economic, occupational, etc., and ask patient to indicate which is the worse consequence |
Treatment beliefs | What do you already know about the treatments for this condition? | Probe for mechanisms of action of proposed treatment and use as opportunity to inform about the condition and/or treatment or correct any misconceptions the patient may have |
Treatment beliefs | To what extent do you think the treatment you are using controls your condition? | Necessity and concern beliefs predict non-adherence. Ask if the patient believes the prescribed treatment is likely to control the condition and if they have any long-term concerns about it |
Treatment goals | What one thing would you like to be able to do that your skin conditions prevents you from doing? | Indicate personal goals for patients and can reveal mismatched agenda between health professional (focus on reducing inflammation) and patients (may want to control itch or correct poor sleep quality from itching). Unless there is a shared agenda non-adherence may become an issue |
Brief summaries (repeating the key points that patients made using their words) or using paraphrasing (summaries using the clinician's words and reflecting the assumed meaning) of the answers can convey to patients that even within the constraints of a short consultation the clinician has both acknowledged and understood their specific concerns. If the responses to this integrated basic psychological assessment raises any concerns, for example around low mood, the clinician should make time for a more detailed assessment using validated measures and/or include mental health/psychological expertise to conduct this. Clinicians commonly report they feel unconfident and unskilled in making or responding to a psychological assessment. In response to this, a UK team has developed a training programme for clinicians to address this integrated approach to patient management [103].
The first line approach to the management of the patient with a skin condition seeking support for emotional or behavioural concerns will be to allow the patient a private space and time to talk about their experience of living with the condition. It is essential that the person conducting this interview has completed professional training in psychological or mental health assessment and treatments. This focused consultation is also a more detailed data-gathering exercise with the specific aim of determining the treatment goals and action plans to address patients’ specific needs. Goal setting and action planning are key aspects of first line treatment and it should not be assumed that the clinician's goals for medical management are more important than the patient's own goals. A more detailed problem-focused treatment approach clearly requires more mental health or psychological training to deliver effectively and may target specific problems or issues. The NICE guidance on the management of mood in long-term conditions does not recommend medication as first line treatment but supports the use of talk therapies that can be increased in intensity as and when necessary [13].
Patients needing specific information, for example about particular treatment options, camouflage services or lifestyle change advice, can be signposted to existing resources and evidence-based services that have been tested and quality assured. Some conditions such as psoriasis have dedicated online psychological or CBT programmes designed to support people who do not have easy access to psychological or appropriate mental health services (e.g. the Electronic Targeted Intervention for Psoriasis (eTIPs) programme [104]).
More focused therapies for depression, anxiety, phobias or concomitant serious mental illness require more specialized input and expertise through the locally available referral routes where these are available. However, patient preferences are for integrated service provision and that these are provided by team members who have some knowledge of the skin condition but specific expertise in the impact of those conditions on their lives beyond just the skin. There is an urgent need for a programme of research on the optimal service configuration in different settings and which health professionals are best placed to coordinate and deliver which psychological treatments.