Steroid fears in children with eczema

KAM-LUN ELLIS HON1,3, WAI-YAN CHRISTY KAM1, TING-FAN LEUNG1,

MAN-CHING ADRIAN LAM1, KIN-YEE WONG1, KWING-CHIN KENNETH LEE2,

NAI-MING TOMMY LUK3, TAI-FAI FOK1 & PAK-CHEUNG NG1

1Department of Paediatrics and 2School of Pharmacy, The Chinese University of Hong Kong, Shatin, Hong Kong SAR,

China, and 3Dermatology Research Centre, The Chinese University of Hong Kong, Prince of Wales Hospital, Shatin, Hong

Kong SAR, China

AbstractBackground: Topical glucocorticoids (GCs) are the mainstay of treatment for eczema, but GC phobia and fears are verycommon among the parents of paediatric patients. Aim: To survey the nature and extent of ‘‘fears’’ of GC use, and toevaluate if disease severity is associated with such fears. Methods: Patients with eczema managed in the paediatricdermatology outpatient clinic of a university hospital were recruited in this survey. Disease severity and various aspects ofbelief and practices of GC use were assessed with the Nottingham Eczema Severity Score and a questionnaire. Results: GC‘‘fears’’ were present in two fifths of informants with non-eczematous skin disease and mild eczema, but three fifths inmoderate-to-severe disease. Requests for steroid-sparing medications (such as tacrolimus or pimecrolimus) had been madein nearly 50% of cases with moderate-to-severe eczema, and many parents would wait until eczema had worsened or applyGC only as a last resort to avoid potential side effects. ‘‘Fears’’ were predominantly interpersonal and rarely iatrogenic innature. Skin problems (in particular skin thinning) and adverse effects on growth were the side effects of GC of mostconcern. However, fewer than half of the informants had discussed their concerns with doctors.

Conclusion: Our results suggest the importance of understanding the nature and extent to which GC fears, regardless ofeczema severity, are prevalent so that sound advice can be offered in a timely manner to parents and patients.

Key Words: Children, eczema, glucocorticoid fears, NESS

Introduction

Eczema is a common chronic relapsing disease in

children. It has been estimated that about 15% of

children suffer from this disease [1�3]. Topical

glucocorticoids (GCs) are the mainstay of treatment,

but their excessive use may be associated with de-

ranged metabolism, growth suppression, increased

susceptibility to infections and suppression of the

hypothalamic�pituitary�adrenal axis [4]. The media

have reported adversely on various aspects concerning

GC use. Similar to other investigators, our experience

at the paediatric dermatology clinic reveals that many

of the parents have had some degree of ‘‘phobia’’ or

‘‘fear’’ of GC use [5�7]. Fallacy and misled informa-

tion may be detrimental to the disease control of

children. It is therefore important to understand the

extent to which GC fears are prevalent so that sound

and correct advice can be offered in a timely manner.

We set out to survey the nature and extent of GC fears

in our eczema patients, and evaluate if disease severity

is correlated with such fears.

Methods

Inclusion criteria

Patients of 1 mo to 20 y of age and with eczema

managed in the paediatric dermatology outpatient

clinic of a university hospital in Hong Kong were

consecutively recruited in this survey. Eczema was

diagnosed according to criteria proposed by Hanifin

and Rajka [8]. Eczema severity in the preceding 12

mo was assessed clinically by the Nottingham Eczema

Severity Score (NESS) [9,10]. We previously found

that the NESS is a valid score for the rapid assessment

of eczema severity, and is easy to perform by parents

or non-specialist staff [10]. In order to reduce

(Received 17 November 2005; revised 21 January 2006; accepted 2 February 2006)

ISSN 0803-5253 print/ISSN 1651-2227 online # 2006 Taylor & Francis

DOI: 10.1080/08035250600612298

Correspondence: Kam-lun Ellis Hon, Department of Paediatrics, The Chinese University of Hong Kong, 6/F, Clinical Sciences Building, Prince of Wales

Hospital, Shatin, Hong Kong SAR, China. Tel: �/852 2632 2859. Fax: �/852 2636 0020. E-mail: ehon@cuhk.edu.hk / ehon@hotmail.com

Acta Pædiatrica, 2006; 95: 1451�1455

inter- and intra-observer variability, various aspects of

beliefs and practices of GC use were assessed by a

research assistant (WYCK) in accordance with a

questionnaire based partly on previous research

[6,7]. GC fear was classified into six categories,

namely, interpersonal, iatrogenic, bibliophilic, doctor

induced, media induced or miscellaneous. Specifi-

cally, we defined interpersonal fear as a fear of GC use

consequent to negative comments about GCs by

friends, relatives or non-medical personnel; iatrogenic

as fear of GC use following side effects previously

experienced by the informant or the patient; biblio-

philic as fear of steroid use due to knowledge from

books, magazines, or drug formulary; and doctors,

media or miscellaneous as fear of GC use as a result of

comments from medical personnel, media (television,

radio, newspaper) or miscellaneous sources, respec-

tively.

Exclusion criteria

Patients were excluded if they were not accompanied

by caregivers or when these caregivers could not

provide reliable information, or if patients suffered

from other forms of inflammatory dermatitis (such as

psoriasis, seborrhoeic dermatitis).

Non-eczema controls

Children with no history of eczema that were seen at

the clinic for various non-eczematous conditions

(such as acne, birth marks and pigmented skin

lesions) during the same period were recruited for

comparison.

The Clinical Research Ethics Committee of our

University approved this study. The x2 test was used

to compare proportions. Odds ratios (OR) and 95%

confidence intervals (CI) were calculated when in-

dicated. All comparisons were made two tailed, and p

values less than 0.05 were considered to be statisti-

cally significant.

Results

Two hundred and twenty-three patients were seen

between March and August in 2005. Eighteen cases

(8%) were excluded from analysis because of non-

eczematous dermatitis (e.g. ichthyosis, palmoplantar

dermatitis, keratosis pilaris, psoriasis, urticaria) or

incomplete data as per the exclusion criteria. Twenty-

eight patients (14%) suffered from mild disease, and

137 (67%) of them had moderate-to-severe eczema

according to the NESS. Forty control cases (including

acne, warts, nail problems, hair problems, nevus,

vitiligo, pigmentation, and haemangioma) were re-

cruited (Table I). The median age of control cases,

mild eczema patients and moderate-to-severe eczema

patients were 11.2, 11.6 and 10.6 y, respectively. All

patients were of ethnic Chinese origin. The mothers

were the informants in 70% of these patients.

Topical GCs had been prescribed in 38% of non-

eczema controls (for alopecia, hypopigmentation, nail

dystrophy, etc.), 82% of mild eczema but 94%

moderate or severe eczema, and were regularly used

(defined as use for more than 2 d per week) in the

moderate-to-severe eczema group (OR 2.38, 95% CI

0.99�5.86, p�/0.053 compared to controls). Apart

from anti-inflammatory actions, many informants

believed that GCs killed germs and reduced itch.

GC fear or phobia, broadly defined as concerns or

fears expressed by informants about steroid use, was

present in 40% of informants with non-eczematous

skin disease and mild eczema, compared with 60% in

moderate or severe disease. In patients with moder-

ate-to-severe eczema, steroid-sparing medications

(such as tacrolimus or pimecrolimus) had been

prescribed in nearly 50%, and many parents would

wait until eczema had worsened or apply GC only as a

last resort to avoid the potential side effects of the

drug. ‘‘Fears’’ were interpersonal or bibliophilic and,

to a lesser extent, iatrogenic in nature (Table II). Skin

problems (especially skin thinning) and adverse ef-

fects on growth and development (such as poor weight

gain, reduced intelligence quotient) were the side

effects of GC use of most concern (Table III).

Approximately half of the informants in the moder-

ate-to-severe eczema group had discussed their con-

cerns with doctors. In the 171 informants who

expressed concern about side effects of GC use,

doctors (65%), television (52%), newspapers (62%),

friends or relatives (57%) were the main sources of

advice about side effects of GC. The Internet was only

used by 17% of these informants.

Discussion

Topical GCs are the mainstay of treatment for

inflammatory skin diseases such as eczema, but their

use may be associated with local and systemic side

effects [4], and misunderstandings about their actions

exist [6]. Apart from anti-inflammatory actions, many

informants believe that GCs kill germs and reduce

itch. It is important for physicians to explain to

patients and parents the two important facets to

eczema management, namely, preventive and thera-

peutic measures. Preventive measures refer to proper

and frequent skin lubrication (emolliation) by topical

application of moisturizers and bathing [11], which

help reduce itch and the likelihood of flares. When

these preventive measures fail to control disease

exacerbation, therapeutic measures such as topical

GCs, antibiotics and non-steroidal immunomodulat-

ing agents are required to treat skin inflammation.

Eczema is an inflammatory condition and GCs are a

1452 K-L. E. Hon et al.

form of anti-inflammatory medication. Thus, patients

should understand the therapeutic rationale that it is

sensible to use GCs during a flare when inflammation

is present. More than half of the informants think that

GCs kill germs. Confusion between the effects of

antibiotics and GCs prevails among the Chinese. Very

few informants understand that GC is a class of anti-

inflammatory drug, whereas antibiotics have been

translated erroneously into Chinese to mean anti-

inflammatory action. Although the use of topical GC

reduces epidermal inflammation and may indirectly

reduce the amount of bacteria in the skin, it is

important to explain that GCs do not have any

intrinsic antiseptic or antimicrobial property.

GC fears, broadly defined as concerns expressed by

informants about GC use, were present in 40% of

informants with non-eczematous skin disease and

mild eczema, compared with nearly 60% in moderate

or severe disease. This finding highlights that con-

cerns and fears about GCs are prevalent, regardless of

eczema severity. Many parents would wait until

eczema got worse (32% mild eczema versus

61% moderate-to-severe eczema) or apply GCs only

as a last resort (39% mild eczema versus 55%

Table II. Nature of concerns about glucocorticoid (GC) use in parents and patients with and without eczema.

Group A No

eczema

Group B1

Mild eczema

Group B2

Moderate-to-severe

Yates’s corrected p value

(n�/40) (n�/28) eczema (n�/137) P value by x2 A vs B1 A vs B2 B1 vs B2

Interpersonal (friends’ or

relatives’ opinion)

9 (23%) 8 (29%) 52 (38%) 0.159 0.776 0.105 0.468

Iatrogenic (patients had

experienced adverse effects)

2 (5%) 3 (11%) 13 (9%) 0.629 0.396 0.526 0.737

Bibliophilic (books,

magazine, drug formulary)

4 (10%) 2 (7%) 20 (15%) 0.476 1.000 0.628 0.375

Doctor 1 (3%) 0 (0%) 8 (6%) 0.314 1.000 0.686 0.354

Media (television,

newspaper, radio, pamphlet)

5 (13%) 1 (4%) 10 (7%) 0.372 0.389 0.334 1.000

Miscellaneous (parental,

poor growth)

1 (3%) 2 (7%) 8 (6%) 0.642 0.564 0.686 0.679

Table I. Steroidophobia in parents and patients with and without eczema.

Group A Group B1 Group B2 Yates’s corrected p value

No eczema

(n�/40)

Mild eczema

(n�/28)

Moderate-to-severe

eczema (n�/137) P value by x2 A vs B1 A vs B2 B1 vs B2

Age of patient B/ 5 y 8 (20%) 3 (11%) 24 (18%) 0.588 0.505 0.900 0.575

Male gender 20 (50%) 17 (61%) 69 (50%) 0.590 0.532 0.889 0.429

Topical GCs prescribed by doctor a 15 (38%) 23 (82%) 129 (94%) B/0.001 B/0.001 B/0.001 0.047

Uses topical GCs regularly

(�/ 2 d per week)

9 (23%) 4 (14%) 56 (41%) 0.006 0.593 0.053 0.014

Coexisting conditions that required

GCs (e.g. asthma, allergic rhinitis)

8 (20%) 8 (29%) 31 (23%) 0.703 0.596 0.892 0.667

Informant thinks GC kills germs 11 (28%) 12 (43%) 61 (45%) 0.153 0.291 0.081 0.963

Informant thinks GC reduces

inflammation

15 (38%) 16 (57%) 104 (76%) B/0.001 0.176 B/0.001 0.072

Informant thinks GC reduces itch 11 (28%) 11 (39%) 68 (50%) 0.040 0.448 0.022 0.429

‘‘GC fears’’ 16 (40%) 12 (43%) 81 (59%) 0.051 0.988 0.062 0.170

Requests GC-sparing medications b 6 (15%) 10 (36%) 63 (46%) 0.002 0.091 B/0.001 0.318

Applies GCs only as a last resort

to avoid potential side effects

5 (13%) 9 (32%) 84 (61%) B/0.001 0.096 B/0.001 0.009

Waits until eczema gets worse before

applying topical GC

2 (5%) 11 (39%) 75 (55%) B/0.001 0.001 B/0.001 0.199

n.s.: not significant

‘‘GC fears’’ broadly defined as concerns expressed by informants about GC use.aMometasone furoate 0.1% (97 of 165 eczema patients) is the most commonly prescribed topical GC, followed by alclometasone

dipropionate 0.15% (28 of 165 eczema patients) and 1% hydrocortisone (17 of 165 eczema patients).b Topical tacrolimus prescribed in one patient with mild eczema but 26 patients with moderate or severe eczema (OR 6.32, 95% CI 0.85�130.60, p�/0.050 by Fisher’s exact test); pimecrolimus prescribed in one patient with mild eczema but 16 patients with moderate or severe

eczema (OR 3.57, 95% CI 0.46�75.23, p�/0.311 by Fisher’s exact test). When combined, these calcineurin inhibitors had been prescribed

significantly more commonly among moderate-to-severe eczema patients (OR 5.75, 95% CI 1.24�36.75, p�/0.020).

Steroid fears in children with eczema 1453

moderate-to-severe eczema) to avoid their potential

side effects. This practice may potentially end in a

viscous cycle leading to more extensive inflammation,

resulting in a more prolonged course, a larger amount

of GC use, and even more potent GC being used. In

patients with moderate-to-severe eczema, requests for

steroid-sparing medications (such as tacrolimus or

pimecrolimus) had been made in nearly 50% of cases.

We attempt to define and classify fears based on the

definition of GC ‘‘phobia’’ [5,6], and found that

‘‘fear’’ was predominantly interpersonal and rarely

iatrogenic in nature (because topical GC has very few

side effects when used appropriately). We do not use

the term phobia in this study, as it is difficult to define

if a fear or concern is truly irrational. Based on our

findings, more effort should be placed in patient

education and explanation, especially in the moder-

ate-to-severe eczema group.

Skin problems (especially skin thinning) and ad-

verse effects on growth and development were the side

effects of GC use of most concern. However, we

found that the spectrum of concerns was wide

ranging. In a recent study concerning skin thinning

and GC use in eczema, no evidence of skin atrophy

after 20 wk of treatment with a once daily potent

topical GC preparation was found, suggesting that the

‘‘fear’’ about skin thinning expressed by parents and

patients may be over exaggerated [7,12]. Physicians

must question and discuss these issues and concerns

in detail with patients and their caregivers. Of note,

only 53% of informants in the moderate-to-severe

eczema and 29% in the mild eczema group had

discussed their concerns with doctors. Doctors, tele-

vision, newspapers, friends or relatives were the main

sources of advice about the side effects of GC. To

date, it appears that the Internet has not become a

frequent source of advice in Hong Kong. It is

important to find out the reasons why some parents

or patients do not discuss their concerns about

specific side effects with their doctors. Lack of

continuity, long scheduled appointments, time con-

straints in consultation, interruptions by a telephone

or pager, and cultural insensitivity could be some of

the barriers that prevent effective communication.

Our findings are different from the results of a UK

study [7] in that controls were used in our study and

only patients of Chinese ethnicity were studied. The

findings in the control population may reflect the

baseline level of fears in the community against which

eczema patients may be compared. Severity grading of

eczema was also considered in the analysis. Interest-

ingly, many of the GC concerns were independent of

eczema severity (Table III), reflecting that they were

not necessarily rational.

This study is a cross-sectional analysis, and patterns

of changes in GC use were not evaluated. Also, Hong

Kong is a relatively affluent and metropolitan city in

China, and the study was conducted at a university

paediatric dermatology clinic where more than half of

our patients have moderate-to-severe eczema. The

results may not be generalizable to parents in other

cities on the mainland. Further studies at the primary

care level should be undertaken to evaluate the nature

and extent of GC fears, and to compare them to this

study.

This study helps better understand the fears of

parents of eczema patients. Fear is socio-cultural and

may vary from country to country. Instead of giving

non-specific advice or a prescription of topical GCs

without addressing these fears, it is important to tailor

Table III. Side effects of glucocorticoid use of most concern to parents and patients with and without eczema.

Group A No

eczema

Group B1 Mild

eczema

Group B2

Moderate-to-severe

Yates’s corrected p value

(n�/40) (n�/28) eczema (n�/137) P value by x2 A vs B1 A vs B2 B1 vs B2

Skin thinning 2 (5%) 6 (21%) 39 (28%) 0.008 0.057 0.004 0.597

Other skin problems a 3 (8%) 2 (7%) 15 (11%) 0.717 1.000 0.767 0.740

Growth and development 2 (5%) 5 (18%) 45 (33%) 0.001 0.115 B/0.001 0.178

Affects liver/kidney function 0 (0%) 0 (0%) 11 (8%) 0.056 NA 0.072 0.214

Affects immune system 1 (3%) 2 (7%) 6 (4%) 0.655 0.564 1.000 0.624

GC resistance 1 (3%) 1 (4%) 6 (4%) 0.861 1.000 1.000 1.000

GC dependence 2 (5%) 1 (4%) 4 (3%) 0.817 1.000 0.619 1.000

Increases body hair 0 (0%) 2 (7%) 6 (4%) 0.287 0.166 0.339 0.624

Eye problems (e.g. glaucoma) 1 (3%) 0 (0%) 5 (4%) 0.571 1.000 1.000 0.590

Bone problems (e.g.

osteoporosis, fractures)

4 (10%) 0 (0%) 6 (4%) 0.151 0.137 0.236 0.591

Miscellaneous b 4 (10%) 1 (4%) 20 (15%) 0.240 0.642 0.628 0.132

Discussed side effects with

doctor

7 (18%) 8 (29%) 73 (53%) B/0.001 0.432 B/0.001 0.030

aOther skin problems included pigmentation, thickening, atrophy, irritation, texture.bMiscellaneous included influences on sexual characteristics, the endocrine system, respiratory system, circulatory system, health, the

joints, and as a cause of cancer, obesity, muscle atrophy, etc.

1454 K-L. E. Hon et al.

instructions to individuals for optimal compliance.

Much of the advice that we provide during patient

education should be evidence based, and should

target the nature and extent of fear experienced by

our patients and their parents. Dermatologists, pae-

diatricians and family physicians should routinely be

sensitive to the fears and concerns of medication use,

in particular in children with eczema.

Based on our findings, healthcare providers should

routinely inquire about parental concerns of GC use.

It should be pointed out that earlier rather than late

use of an appropriate strength of GC during acute

exacerbation of eczema may reduce the total amount

of GC required to suppress inflammation. As ‘‘fears’’

were predominantly interpersonal in nature and rarely

due to iatrogenic reasons, doctors should strive to

establish good rapport and mutual trust with parents

so that they might be more open to relay their

concerns. Knowing that skin thinning and adverse

effects on growth were the side effects of most

concern to parents, the physician should clearly

explain that extreme high-potency GCs (such as

clobetasol proprionate) should be avoided. Regular

weight and height measurements could be reassuring

to parents with children on GC. In addition, steroid-

sparing medications (such as tacrolimus or pimecro-

limus) are a valuable complement to topical GCs.

Finally, reliable scientific information is available to

reassure parents that the appropriate and correct

usage of topical GC is generally safe in children

[13�16].

Conclusion

Rightly or wrongly, fears about GC exist and result in

some patients and carers under-using or wasting

prescribed GC treatments as a result of the fear of

unwanted side effects. It is important to understand

the nature and extent to which GC fears are prevalent

so that sound advice can be offered in a timely

manner. Fallacy and misled information may be

detrimental to the disease control of the child.

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