2011 topical corticoster

C L I N I C A L A N D L A B O R A T O R Y I N V E S T I G A T I O N S Topical corticosteroid phobia in atopic dermatitis: a studyof its nature, origins and frequencyH. Aubert-Wastiaux, L. Moret,* A. Le Rhun,* A.M. Fontenoy,* J.M. Nguyen,* C. Leux,* L. Misery,  P. Young,àM. Chastaing,  N. Danou,§ P. Lombrail,* F. Boralevi,– J.P. Lacour,** J. Mazereeuw-Hautier,   J.-F. Stalder andS. Barbarot Department of Dermatology, CHU Hoˆtel-Dieu, 1 place Alexis Ricordeau, 44035 Nantes Cedex 1, France*PIMESP (Poˆle d’Information Me´dicale et de Sante´ Publique), CHU Hoˆtel-Dieu, Nantes, France Department of Dermatology, CHU Morvan, Brest, FranceàDermatologist, Rouen, France§Dermatologist, Paris, France –Pediatric Dermatology Unit, Hoˆpital Pellegrin-Enfants, CHU Bordeaux, Bordeaux, France**Department of Dermatology, CHU Archet, Nice, France  Department of Dermatology, CHU Larrey, Toulouse, France Background Topical corticosteroids remain the mainstay of atopic dermatitis ther- apy. Many atopic dermatitis therapeutic failures appear to be attributable to poor adherence to treatment due to topical corticosteroid phobia.
Objectives To assess the facets, origins and frequency of fear of topical corticoste- roid use among patients with atopic dermatitis.
Methods A questionnaire comprising 69 items, generated from information gath- ered during interviews with 21 patients and 15 health professionals, was given This study was sponsored by the Foundation for to consecutive patients consulting at the outpatient dermatology departments of Atopic Dermatitis, Pierre Fabre Laboratoire five regional university hospitals or with 53 dermatologists in private practice.
(Toulouse, France), which provided funds to cover Results A total of 208 questionnaires were analysed (including 144 from parents logistic expenses (e.g. printing the questionnaires), but had no access to the data collected and played and 87 from adult patients, 27 of whom were also parents); 80Æ7% of the no role in their analysis, the writing of the respondents reported having fears about topical corticosteroids and 36% admitted manuscript or the decision to submit it for nonadherence to treatment. A correlation was found between topical cortico- steroid phobia and the need for reassurance, the belief that topical corticosteroidspass through the skin into the bloodstream, a prior adverse event, inconsistent information about the quantity of cream to apply, a desire to self-treat for the shortest time possible or poor treatment adherence. Topical corticosteroid phobia was not correlated with atopic dermatitis severity.
Conclusion Topical corticosteroid phobia is a genuine and complex phenomenon,common among French patients with atopic dermatitis, that has an importantimpact on treatment compliance.
As defined by the U.K. Working Party’s diagnostic criteria,1 ato- to TCS remains unexplained, but poor adherence to the pre- pic dermatitis (AD) is a relapsing, chronic, inflammatory, cuta- scribed regimen may underlie treatment failure. Indeed, neous disorder that occurs mainly in childhood and sometimes adherence by patients with AD is known to be poor, at persists into adulthood. AD currently affects 10–20% of children ~30%,11 as it is for other chronic diseases.12 worldwide.2,3 It is a public health concern because of its preva- What is usually called corticosteroid phobia is frequent.
lence, cost and impact on quality of life.4,5 Thus, the broad Corticosteroid phobia is certainly a misnomer because the impact of AD warrants optimization of relevant support services.
term ‘phobia’ defines an irrational fear.13 In fact, corticoste- Topical corticosteroids (TCS), the mainstay of AD treatment, roid phobia is the dedicated term to describe all types of fear are often required for months or years to control the disease.
about steroid use. In routine clinical practice, it is not unusual Although they have long been known to have side-effects, for patients to express fear or anxiety about using TCS and their efficacy and safety, when used appropriately, are well TCS phobia appears to be common (60–73% of patients),14,15 established.6–10 Why some patients with AD do not respond potentially leading to poor adherence and lack of response to BJD Ó 2011 British Association of Dermatologists 2011 165, pp808–814 Topical corticosteroid phobia in atopic dermatitis, H. Aubert-Wastiaux et al. 809 treatment.15 Nevertheless, TCS phobia appears to be a complex Thus, the final questionnaire used in the second part of the phenomenon not yet fully elucidated, with little in the litera- study consisted of 69 items. It was given to 208 consecutive ture about its origins or risk factors.
patients with AD consulting at the hospital outpatient derma- This study was designed to investigate the components, ori- tology departments or dermatologists in private practice, gins and frequency of TCS phobia, and factors associated with between February and May 2009. Patients were asked to com- it among dermatology outpatients with AD.
plete the questionnaire before the consultation. For all partici-pants, the AD diagnosis was confirmed by the patient’s dermatologists. All patients with AD were included, and par-ents were asked to complete questionnaires for their affected This prospective, multicentre study was conducted at five children under 15 years old. The first page of the document regional hospitals in France, in collaboration with 53 derma- was a written explanation of the study that had to be signed tologists in private practice. The first task of the study was to by the respondent for participation. This study was approved create a questionnaire. To generate items and generally explore the field of TCS phobia, we decided to start with a qualitativeinquiry to examine the origins, expressions and consequences of TCS phobia in patients with AD. The questionnaire wasdeveloped after a qualitative and explorative analysis, accord- Results are expressed as percentages or means ± SD, and stat- ing to focus group methodology16 involving adult patients, istical analyses (univariate and multivariate) were conducted parents of children with AD and health professionals (general using SPSS 16 and R2.8.0 software (SPSS Inc., Chicago, IL, practitioners and pharmacists). During these focus group ses- U.S.A.). Variables, expressed as Likert scales, were considered sions, we used several information-gathering techniques: quantitative. For the univariate analysis, relationships between patients’ keywords (‘For me TCS is.’), memory (‘Do you TCS phobia, as assessed with the VAS, and the covariates were remember the first time you were prescribed TCS?’), ‘post- evaluated using Spearman’s correlation coefficient. When nec- cards’ relating personal experiences (‘Write a postcard to essary, Student’s t-test was used. Items with > 10% missing somebody from your family who asks your advice about data were excluded. Previous studies on patients with AD eval- TCS’), to collect data about patients’ behaviours, emotions, uated TCS phobia using only one question with a yes-or-no cognitions, feelings and perceptions concerning TCS. Five such response.14,15 Because TCS phobia appears to be more com- meetings were held. To reach data saturation, we used other plex and subtle, we chose to evaluate it with the first three sources (telephone interviews). These techniques require mas- items of the questionnaire: one VAS, and two with multiple- tery of written and spoken language, French in our case.
choice responses from the qualitative study. The results Thirty-six people participated in this first part of the study: reported herein concern the univariate analysis using only the 12 adult patients, nine parents, eight general practitioners and first item (VAS) as the dependent variable. Those obtained for seven pharmacists. The focus group sessions and interviews the two other items were similar (data not shown).
were then transcribed. Three researchers conducted a qualita- Then a multivariate analysis was performed. The outcome tive analysis to identify the emerging issues and items were (dependent) variable was the intensity of the VAS-assessed selected by experts (three dermatologists and one psycholo- TCS phobia. Explanatory variables were selected among those gist). We obtained 51 items concerning the intensity, com- significantly associated with the dependent variable in the uni- ponents and origins of fears, and patients’ behaviours vis-a`-vis variate analysis (P < 0Æ05) and a backward selection process their prescribed therapy. The first three items evaluated the in- was then applied to obtain the final model. Statistical signifi- tensity of the fears: (i) ‘On this scale, where would you place cance for all analyses was set at P < 0Æ05.
the intensity of your worries about TCS?’ (0, no fear at all;10, very fearful); (ii) ‘Do you have fears about treatment with TCS?’; and (iii) ‘Concerning your treatment, how do youfeel?’ The first response was based on a 10-point visual ana- A total of 208 patients were enrolled in five centres in France; logue scale (VAS), and the following two had multiple-choice nine hospital dermatologists and 53 dermatologists in private options. Other items covered the kinds of fear and beliefs, practice contributed 114 and 94 patients, respectively. The their origins, and behaviours vis-a`-vis therapy. To explore the response rate to the questionnaire was 100%, and the non- complexity of TCS phobia and its subtleties, we used items response rate to items was < 10%, with the exception of two with multiple-choice responses rather than yes-or-no answers.
of the 51 items (‘It’s more difficult to use TCS on my child Eighteen additional questions covering the characteristics of than on me’, and ‘I avoid putting TCS on my child’s hands’).
the patients and their disease were added: age; status (parentof child with AD or adult patient); profession; severity (self- evaluated: mild, severe, very severe); duration; disease burden(‘On a scale from 0 to 10, how much bother has the eczema Parents of children with AD accounted for 144 respondents (32 caused you over the last 3 days?’); previous treatment; and male, 112 female), 87 adults (27 men and 60 women) had AD, 27 of whom were patients and parents of an AD child, and BJD Ó 2011 British Association of Dermatologists 2011 165, pp808–814 810 Topical corticosteroid phobia in atopic dermatitis, H. Aubert-Wastiaux et al.
four additional adults were given TCS but we do not know 10-point VAS scale. TCS phobia-intensity was comparable for whether they were prescribed for themselves or for their child.
adult patients with AD and parents of children with AD The mean ± SD ages of the parents, their children and the 87 (4Æ5 ± 3Æ5 vs. 3Æ0 ± 2Æ6, respectively). When asked how they adult patients with AD were 32Æ75 ± 7Æ3, 4Æ9 ± 4 and felt about their treatment, only 9Æ2% reported being confident 30Æ5 ± 10 years, respectively. The patient data are summarized in using TCS (Table 2); 36% of the patients admitted nonad- in Table 1. Concerning AD severity, 41Æ1% of the patients herence to the prescribed regimen. Patients’ beliefs and behav- reported mild, 46Æ2% severe and 12Æ7% very severe disease. To iours concerning TCS are summarized in Tables 3 and 4.
measure the impact of the disease, the question, ‘On a scale Many patients reported being worried about how to apply from 0 to 10, how much bother has the eczema caused you TCS, the right quantity to use and treatment duration. Patients over the last 3 days?’,17 generated a mean response of also reported discrepancies in the information given by doc- 5Æ2 ± 2Æ9. The majority of patients (81Æ7%) were currently tors and pharmacists (Table 5). Overall, 41Æ3% of the patients using or had used TCS. Concomitant treatments prescribed were reported using alternative medicine therapies to treat their moisturizing cream (93%), phototherapy (8%), topical tacro- limus (28%), ciclosporin (4%) and ⁄ or homeopathy (41%).
The univariate analysis found correlations between TCS phobia Notably, 80Æ7% of our patients admitted having fears about and many items relating to types of fear, origins of fear or TCS. In response to the question, ‘Do you have fears about behaviours (Tables 3–5). The principal significant findings are treatment with TCS?’, only 19Æ3% reported no fear at all. The the correlations between TCS-phobia intensity and the belief intensity of those fears reached a mean of 4Æ3 ± 2Æ8 on the that TCS pass through the skin into the bloodstream, a lack ofclarity about how to use the treatment, a lack of trust in thepractitioner or discrepancies in the information provided by their physicians (about the area to treat, the amount of creamto apply and how to stop). Furthermore, TCS phobia was sig- nificantly correlated with poor adherence to treatment, belief in self-treating as late as possible and for the shortest time possible (Table 4), or a prior adverse event (t = )2Æ87,P = 0Æ005).
Pertinently, TCS phobia was not associated with patient age, sex or AD characteristics (its duration or severity). Consulting in a hospital or private practice had no significant influence on whether patients worried about using TCS.
The multivariate linear regression model identified the follow- ing six variables as being independent predictors of TCS- phobia intensity, as assessed with the VAS (Table 6): the need for reassurance, the belief that TCS pass through the skin into the bloodstream, a previous side-effect, inconsistent informa-tion about the quantity of cream to apply, self-treatment for AD, atopic dermatitis; ND, no data available.
the shortest time possible and poor treatment adherence.
Table 2 Results of the response to the first three questionnaire items about topical corticosteroid (TCS)-phobia intensity aVisual analogue scale scores range from 0 (no fear at all) to 10 (very fearful).
BJD Ó 2011 British Association of Dermatologists 2011 165, pp808–814 Topical corticosteroid phobia in atopic dermatitis, H. Aubert-Wastiaux et al. 811 TCS are effective over a short time period TCS are effective over a long time period TCS calm symptoms but don’t treat the cause TCS stop the eczema from coming up to the I don’t know of any side-effects but I’m still afraid of TCS TCS are more dangerous than CS in tablet form TCS treatment helps me improve my quality of life The advantages of TCS use outweigh the disadvantages r, Spearman’s rank correlation coefficient (correlation with the visual analogue scale score in univariate analysis); TCS, topical corticosteroids;NS, nonsignificant.
Table 4 Patient behaviours concerning treatment I’m afraid of using the cream for too long I’m afraid of putting cream on certain zones like the It’s more difficult to use TCS on my child than on me If my doctor prescribed TCS then I would apply the prescription I wait as long as I can before treating myself I am careful to rub the cream in well when I apply it I avoid putting TCS on my child’s hands When my doctor asks me how many tubes I’ve used I am scared r, Spearman’s rank correlation coefficient (correlation with visual analogue scale score in univariate analysis); TCS, topical corticosteroids;NS, nonsignificant; NA, not applicable (nonresponse rate > 10%).
the complexity of the phenomenon revealed in everyday clini-cal practice warranted further investigation.
The results of this study confirm the high TCS-phobia rate An original feature of our study is the methodology used to among French patients with AD and its impact on therapeutic develop the questionnaire. Qualitative analysis using focus compliance. The concept of ‘steroid phobia’ first appeared in groups to generate items enabled us to construct a series the context of asthma.18,19 Later, the frequency of TCS phobia of items and questions that explored the real-life attitudes, and its impact on patient adherence to therapy were studied beliefs and behaviours of patients, and different facets of TCS in AD. However, the various components of TCS phobia and BJD Ó 2011 British Association of Dermatologists 2011 165, pp808–814 812 Topical corticosteroid phobia in atopic dermatitis, H. Aubert-Wastiaux et al.
Table 5 Given information and coherence of messages Never (%) Sometimes (%) Often (%) Always (%) r Have you spoken about the following points related to TCs with your doctor? If you have consulted several doctors has the information been the same concerning the following points? To which zones you should apply the cream Have you received clear information from your doctor about TCS? 31Æ5 I received the same information from doctors and pharmacists One of these groups has already warned me about using TCS r, Spearman’s rank correlation coefficient (correlation with the visual analogue scale score in univariate analysis); TCS, topical corticosteroids;NS, nonsignificant.
CI, confidence interval; TCS, topical corticosteroids.
Patients were enrolled from hospital outpatient dermatology No severity score, such as the Scoring AD (SCORAD) index, departments and dermatologists in private practice to avoid any recruitment bias in an exclusively hospital-based sample.
An important finding of our study is the confirmation of Indeed, patients consulting at hospital departments may have the high frequency of TCS phobia in patients with AD. Indeed, more severe AD or more TCS fear leading to therapeutic eight out of 10 patients reported being afraid of using TCS.
failure. Patients recruited in both settings comprised a homo- High rates were also found previously. Fischer20 found that geneous group. However, because on average fewer than two 40% of patients thought TCS were dangerous. In a question- patients were included per private practice clinician, we naire study involving 200 patients with AD, Charman et al.14 cannot exclude a recruitment bias. Indeed, although we rec- found that 73% of the patients or parents of children with AD ommended giving the questionnaire to consecutive patients reported being worried about using TCS. In 2006, using the with AD, it might have been distributed to those with more same questionnaire, Hon et al.15 found that 60% of 233 severe AD or with TCS phobia. In this study, TCS phobia was patients had fears about TCS. The higher rate found in our not associated with either the characteristics of AD (duration, study might be explained by the use of questions with multi- impact and severity) or the patient (age, sex or type of con- ple-choice responses or cultural differences. Notably, TCS-pho- sultation). Thus, TCS phobia can affect all patients with AD.
bia rates differed in China,15 the U.K.14 and France, Moreover, the majority of study patients were women.
highlighting cultural diversity in how the general population Another study limitation is that AD severity was self-evaluated.
BJD Ó 2011 British Association of Dermatologists 2011 165, pp808–814 Topical corticosteroid phobia in atopic dermatitis, H. Aubert-Wastiaux et al. 813 We also showed that the intensity and focus of the fears are associated concepts, but remain separate: patients can be varied among patients. Indeed, because of the multiple-choice treatment-compliant and still have worries about it. As men- options, we were able to bring to light nuances in the inten- tioned above, TCS is associated with patient-initiated dose- sity of the TCS fear and concern from ‘not at all’ to ‘very fear- reduction strategies and such behaviours may be the only way ful’ and from ‘confident’ to ‘anxious’. Although the majority fear is expressed. Many patients reported waiting until their of patients had moderate fear, some had extreme anxieties.
AD got worse or applying TCS only as a last resort to avoid The findings of this study revealed that some patients had specific fears about TCS use, most of which concerned adverse Our findings suggest several areas in which action can be events, predominantly cutaneous side-effects. Some patients taken to reduce patients’ TCS phobia. First, as in previous worried about systemic side-effects, principally growth retar- studies,14,15,20 we underscore the role of information pro- dation and weight gain. Although similar fears have been vided by doctors. Information of poor quality, lacking in described before,14,15,20,21 patients’ worries about how to clarity or containing discrepancies breeds fear. Health profes- apply TCS (how much, how long and where) and their fear sionals in the focus groups admitted that their own fears of doing the wrong thing have not been reported previously.
might be responsible for inadequate information and inappro- Patients also feared TCS dependency or addiction and loss of priate warnings given to patients. Lack of knowledge about efficacy; eight out of 10 patients considered TCS to be effec- TCS may also contribute, and requires continuing education of tive over a short time period, and only 41Æ2% saw them as practitioners to keep them abreast of new findings and thereby effective over the long term. The same worries were reported by Charman et al.,14 Hon et al.15 and Fukaya.22 Lastly, our observations emphasize the importance of educa- Our observations also identified indeterminate worries or tional support for the patient. Verbal information given by nonspecific concerns. The former were raised by 47Æ8% of the caregivers to patients or parents could be supplemented with patients, who said they did not know the side-effects of TCS written information on AD, treatments used and their side- but were still afraid of using them. According to Charman effects, and treatment regimens (with clear details of how et al.,14 24% of their patients worried about long-term nonspe- much to apply, where to apply, how long to apply for).
cific adverse events. These nonspecific fears might be associ- Exploring a patient’s perceptions and beliefs about TCS phobia ated with a lack of information, information discrepancies or allows information to be targeted individually. Patients also with the term ‘steroid’. Notably, some patients who did not require emotional support. The quality of the patient–doctor admit to being worried about using TCS expressed TCS phobia relationship is critical to ensuring treatment adherence and through their behaviours (need for reassurance or reducing patient self-efficacy. A good patient–doctor relationship, trust doses). Thus, TCS phobia is a complex phenomenon that in the physician and reassurance about treatment are essential manifests as specific or indeterminate fears, or only as specific behaviours. Consequently, it cannot be explored with ques- Our results indicate that TCS phobia is complex and that its tions having only yes-or-no responses.
evaluation requires a scale or score. Estimating TCS phobia The results of this study suggest several origins of fear or with yes-or-no responses is too simplistic and cannot detect worry about TCS use. First, verbal information given by care- different types of fear or their intensities. Its frequency, impact givers seems to play an important role. Indeed, a lack of clear and the observation that all types of patients are affected war- advice was significantly correlated with TCS phobia. Inconsist- rant its systematic exploration in the context of AD.
ent information about the quantity to use, the area to treatand treatment duration induced worries. Patients reported dis-crepancies concerning all these treatment aspects among der- matologists, dermatologists and general practitioners, and between practitioners and pharmacists. These variations might Topical corticosteroid phobia or anxieties about topical be attributable to advances in our understanding of TCS and corticosteroid use are common among patients or par- their safety over the years, and perhaps even reflect TCS pho- ents of children with atopic dermatitis and potentially bia among caregivers themselves,23 especially those trained lead to poor adherence and lack of response to treat- We also found that the family circle and other people in the patient’s entourage play a prominent role in the origin of fears by perpetuating unhelpful attitudes, negative beliefs andmisconceptions about TCS, as previously reported.14,15,21 • Topical corticosteroid phobia, a genuine and complex Our observations confirm the impact of TCS phobia on phenomenon, common among French patients with ato- treatment adherence: the greater the fear, the poorer the com- pic dermatitis, is associated with a prior adverse event pliance. Several groups11,20,24 attributed many therapeutic fail- and inconsistent information about the treatment.
ures to poor adherence and suggested that TCS phobia played • Furthermore, it has an important impact on therapeutic a contributory role. Only Ohya et al.25 failed to detect an impact on adherence. TCS phobia and treatment compliance BJD Ó 2011 British Association of Dermatologists 2011 165, pp808–814 814 Topical corticosteroid phobia in atopic dermatitis, H. Aubert-Wastiaux et al.
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2 Williams H, Robertson C, Stewart A et al. Worldwide variations in 14 Charman CR, Morris AD, Williams HC. Topical corticosteroid pho- the prevalence of symptoms of atopic eczema in the International bia in patients with atopic eczema. Br J Dermatol 2000; 142:931–6.
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20 Fischer G. Compliance problems in paediatric atopic eczema. Austra- 7 McHenry PM, Williams HC, Bingham EA. Management of atopic las J Dermatol 1996; 37 (Suppl. 1):S10–13.
eczema. Joint Workshop of the British Association of Dermatolo- 21 Smith SD, Hong E, Fearns S et al. Corticosteroid phobia and other gists and the Research Unit of the Royal College of Physicians of confounders in the treatment of childhood atopic dermatitis explored using parent focus groups. Australas J Dermatol 2010; 8 van der Meer JB, Glazenburg EJ, Mulder PG et al. The management of moderate to severe atopic dermatitis in adults with topical fluti- 22 Fukaya M. Why do patients with atopic dermatitis refuse to apply casone propionate. The Netherlands Adult Atopic Dermatitis Study topical corticosteroids? Dermatology 2000; 201:242–5.
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23 Tuft L. ‘Steroid-phobia’ in asthma management. Ann Allergy 1979; 9 Berth-Jones J, Damstra RJ, Golsch S et al. Twice weekly fluticasone propionate added to emollient maintenance treatment to reduce 24 Beattie PE, Lewis-Jones MS. Parental knowledge of topical therapies risk of relapse in atopic dermatitis: randomised, double blind, par- in the treatment of childhood atopic dermatitis. Clin Exp Dermatol allel group study. BMJ 2003; 326:1367.
10 Furue M, Terao H, Rikihisa W et al. Clinical dose and adverse 25 Ohya Y, Williams H, Steptoe A et al. Psychosocial factors and effects of topical steroids in daily management of atopic dermatitis.
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