Abstract
Skin conditions such as psoriasis, eczema, and skin cancer often have a substantial psychologic and social impact on our patients. Some of these patients limit their life because they feel self-conscious about their symptoms. Sometimes, greater life satisfaction comes from accepting that perhaps some symptoms will remain or recur, even in an individual who responds well to treatment. This acceptance involves acknowledging the existence of symptoms, thereby allowing the patient to pursue a meaningful life that is not overly limited by their potential presence. This is not only liberating for the patient but also for the medical professional, who can sometimes feel pressured by patients’ unrealistic expectations to achieve symptom reductions that are not possible. We discuss how to talk with patients about their expectations regarding treatment and whether relief of symptoms is a necessary component to living a better life. Helping patients to find the right words to explain their visible symptoms to others can sometimes help them feel less self-conscious in public settings and thereby more comfortable going out into the world to pursue a meaningful life.
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Introduction
Patients with conditions such as psoriasis, eczema, and skin cancer frequently face psychologic challenges which, in turn, impact their social functioning and the kind of life that they lead [1]. Patients may experience fearful anticipation of interaction with others, even when symptoms are not present, and develop avoidance-coping mechanisms. This may prevent them from partaking fully, or at all, in social and recreational activities or employment. Ultimately, visible symptoms may change how patients see themselves and how they perceive their future.
Multiple studies reveal consistently poorer quality of life and psychosocial functioning scores among patients with visible dermatologic skin conditions compared with those who do not have such conditions [2,3,4,5]. The incidence of psychosocial comorbidities among such patients is high, as evidenced by a study which found that the risks of depression, anxiety, and suicidality attributable to psoriasis were 11.8, 8.1, and 0.4 per 1000 person–years, respectively (Table 1) [5].
The dermatologist can play an important role in helping patients to overcome such substantial challenges and improve their overall quality of life. We discuss several important considerations and propose strategies to assist dermatologists in addressing the important psychosocial side of treatment in patients with visible skin conditions.
How Important is the Successful Treatment of Visible Symptoms?
Studies have shown that successful treatment, which improves the patient’s symptoms and changes their physical appearance, can lead to improvement in psychologic symptoms and a better quality of life [2, 6]. However, it is important to note that, sometimes, greater life satisfaction is achieved by accepting that perhaps some symptoms will remain or recur, even if a patient generally responds well to treatment. Such acceptance involves acknowledging the existence of symptoms, but frees up the patient to pursue a meaningful life that is not overly limited by their condition.
Thus, treating a patient’s physical symptoms is only half the battle. It is also crucial that patients are provided with the tools to accept their remaining symptoms and to reduce the impact of these on everyday life.
Management of Patient Expectations
As a clinician, one is familiar with the broad spectrum of available treatment options and the tools used to objectively measure outcomes in a clinical and/or academic setting. Treatment may be deemed successful if improvements in physical symptoms are in line with the results one would typically observe in other patients, or those that have been reported in clinical trials. However, it is important to remember that other factors may influence the patient’s own perception of treatment success.
Patients have their own preferences and priorities regarding what treatment outcomes are more important to them. For example, one patient may favor reduction or elimination of signs of disease that are visible to others when wearing typical clothes (which may change with the season), whereas another patient may be more interested in reducing their level of physical discomfort. Patients’ satisfaction is strongly influenced by their initial expectations and the changes they were expecting to see, as well as those of their family and friends; objective measures of symptom improvement may be less important to them.
Therefore, when evaluating treatment options, it is important to consider asking the patient what outcomes are most important to them and to discuss what it is reasonably possible to achieve. This will contribute to making treatment more successful, as defined by the patients. As such, a broad outcome measure that includes psychosocial and overall quality of life measures, in addition to symptom remission, would be of particular value.
Clinicians have the opportunity to actively manage patients’ expectations. In order to achieve this, clinicians may wish to discuss expected outcomes before treatment is initiated, including the degree of symptom improvement that can realistically be expected, the likelihood of success, and the timescales involved. This would ideally be a two-way conversation, in which the clinician could ask the patient to explain their hopes and expectations as a result of their treatment.
There are several ways in which realistic expectations (i.e. not too high and not too low) will result in the best outcome for the patient. Firstly, the likelihood of good treatment compliance is increased. If expectations are sufficiently high, a patient is more likely to be willing to initiate treatment and remain compliant, as they will be confident that they will eventually see an improvement in their symptoms. Similarly, if they have a tempered understanding of the expected degree of improvement, and when this may occur, they will be more likely to adhere to treatment without getting discouraged by seemingly poor results. This is especially important in the case of complicated regimens, such as those associated with frequent or inconvenient drug administration, those that involve some degree of pain or discomfort, or those in which extensive treatment is required before symptoms begin to improve.
Secondly, appropriate expectations can help a patient and their family to know when they need to return to the clinician and ask for a different treatment approach. Such a dynamic, interactive relationship between the clinician and the patient can ensure that the patient’s needs are being met wherever possible, and may reduce unnecessary time and costs associated with treatment that is inappropriate or ineffective for that person.
Finally, focusing on the broad improvement of patient quality of life, and not just on the management of visible symptoms, may help to reduce the often excessive pressure placed on healthcare providers by patients with unrealistic expectations for improvement. This can improve the clinician's own sense of job satisfaction, as well as the overall relationship between the clinician and the patient.
Life Beyond Symptoms: Helping Patients to Prevent Symptoms from Becoming Impairment
When considering treatment goals, it is important to distinguish between symptoms and impairment. Symptoms can be defined as the distinguishing clinical features of a disorder. Impairment, however, is defined as the suffering that can be caused by symptoms, and may be physical, psychologic, and/or social. The degree of impairment caused by a given symptom is often different in different people; in fact, a patient can have a severe symptom but not be impaired by it at all. Conversely, a different patient may be greatly impaired by symptoms of relatively mild severity, with a tremendously negative impact on their life. For example, an insecure teenager may feel extremely self-conscious about minor acne and avoid some social situations, whereas a confident young adult with much worse symptoms may hardly think about them.
When it comes to reducing the psychologic impact of a dermatologic condition and improving the patient’s quality of life, it is crucial that we address impairment and not just symptoms. It is possible for a patient to actively refuse to be unnecessarily limited by their symptoms, rather than be passively resigned to them. However, support and encouragement are often needed in order for a patient to achieve this. As clinicians, we have the opportunity to encourage patients to live ‘a big life’, i.e. a life that is fulfilling, rewarding, meaningful, and interesting, and that has a positive impact on the world, in which the person accomplishes most of what they set out to do. In turn, the patient may strive to be the person that they want to be, regardless of their health status. Other professionals, such as nurses, psychotherapists, or counsellors, who may be involved in the wider healthcare circle of a patient, can also assist in this regard. In some cases, an overly negative response to symptoms can be indicative of low self-esteem, anxiety, or depression, which can warrant a referral to a mental health professional to help the patient cope, not only with their dermatologic condition, but also with other matters.
We can help patients to redefine themselves by asking the question, “What would/could you do if you did not have these symptoms?” It should be emphasized that, although symptoms may affect how a patient lives their life, symptoms do not necessarily need to rule a patient’s life. We can also help patients to understand that tolerating discomfort may allow them to pursue more interesting goals in life. Mental health professionals can help more limited patients to learn better coping methods to deal with sometimes debilitating discomfort.
Patients should, of course, be encouraged to follow the treatment regimen, and active engagement with the clinician will enable the patient to feel that they are in control of their condition and their treatment program. However, we can emphasize to patients that it is important not to wait for complete symptom remission before pursuing a fulfilled life.
Helping Patients to Develop the Tools to Explain their Symptoms
Some patients restrict their social engagement because they feel self-conscious about their visible symptoms and do not know how to respond to people’s questions about them, such as why they look that way, or whether the condition is contagious. Helping patients find the right words to explain their visible symptoms to others can help them feel more comfortable going out into the world. This is particularly true of situations in which the patient is likely to encounter people who are more likely to make inappropriate comments, ask personal questions, or make incorrect assumptions, such as that the condition is highly infectious. It is easier for the patient to cope and feel confident in such situations if they have an appropriate and informed range of responses prepared in advance. Patients can choose to share personal information, but they also have the right not to do so.
Conclusions
Visible medical conditions such as psoriasis, eczema, and skin cancer often have a substantial psychologic and social impact on patients. However, through appropriate discussion and interaction with a patient, the dermatologist can play an important role in helping to reduce this impact, potentially improving the patient’s overall quality of life. It is important to discuss expected outcomes before treatment is initiated, in order to ensure that realistic expectations are in place. It may also be beneficial to discuss whether total symptom relief is a necessary component to living a better life. In addition, helping patients to find the right words to explain their visible symptoms to others can help them feel less self-conscious and more confident in a public setting. Helping patients to come to terms with their condition, and helping them to build the skills required to reduce the psychosocial impact of their condition, may mean that they are more equipped to go out into the world and pursue a more meaningful life.
This article is based on previously conducted studies and does not involve any new studies of human or animal subjects performed by any of the authors.
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Acknowledgements
Sponsorship and article processing charges for this supplement were funded by Almirall S.A. This article is based on presentations from the 9th Skin Academy Symposium, April 9–10, 2016, Barcelona, Spain, sponsored by Almirall S.A. The named author meets the International Committee of Medical Journal Editors (ICMJE) criteria for authorship for this manuscript, takes responsibility for the integrity of the work as a whole, and has given final approval to the version to be published. Medical writing support was provided by Chrissie Kouremenou of Complete Medical Communications, funded by Almirall S.A.
Disclosures
Ari Tuckman has been a speaker for Almirall S.A.
Compliance with Ethics Guidelines
This article is based on previously conducted studies, and does not involve any new studies of human or animal subjects performed by the authors.
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Data sharing is not applicable to this article as no datasets were generated or analyzed during the current study.
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Tuckman, A. The Potential Psychological Impact of Skin Conditions. Dermatol Ther (Heidelb) 7 (Suppl 1), 53–57 (2017). https://doi.org/10.1007/s13555-016-0169-7
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DOI: https://doi.org/10.1007/s13555-016-0169-7