‘Back to square one’ – experiences influencing topical corticosteroid use in paediatric atopic dermatitis

Participants sought information from three key resources – themselves, intergenerational experiences (i.e. Interactions with people of different ages) and from other sources, such as health practitioners. Half of the participants personally knew of someone with eczema. Almost all participants sought additional information from health practitioners.

Personal experiences with eczema often influenced participants’ understanding of the condition.

My first personal experience of managing eczema … very steep learning curve. (Participant A, GP)

Participants with intergenerational experiences thought that AD symptoms were dependent on severity and individual circumstances.

They (different types of eczema) are the same condition, but so very different. (Participant B, non-GP)

Experiences (regarding eczema) didn’t carry over at all … totally different in the severity of it. (Participant B, non-GP)

Other participants mentioned that their understanding was limited to communication during GP consultations or from the Internet, and felt it was inadequate.

If I had more education and awareness of the different formulation of the actual corticosteroid or the condition, I would be reassured. (Participant C, GP)

As a result, some participants were unaware of different groups of corticosteroids, such as mineralcorticoids and glucocorticoids. Some identified exogenous androgen hormones as having a similar safety profile to topical glucocorticoids after extrapolating from colloquial terms, such as ‘anabolic steroids’.

I mean … people take them (steroids) to increase muscle mass … just seems unnatural and extreme. (Participant D, non-GP)

Although participants predominantly sought information about eczema from attending consultations with healthcare providers, many also attempted to reinforce their understanding through Internet sources.

I was … doing all this kind of research on the Internet as well. So, I was even thinking to myself … what kind of infection is it? (Participant E, non-GP)

All participants reported attending at least two healthcare visits within the first year of diagnosis. General practitioners appear to be the first point of contact for eczema-related healthcare visits, followed by paediatricians and dermatologists.

Almost half of the participants reported feeling frustrated with the discussions shared during those visits. A few felt that the patient education information from their healthcare providers on the chronicity of AD and treatment did not meet their expectations.

They say try this for a week … but it never goes away. That’s just their answer, you never get quite what you want. (Participant F, non-GP)

Some participants offered suggestions to minimise the mismatch between expectations of healthcare providers and patients, including increasing transparency and better communication.

More transparency on the overall longevity of the condition and long-term strategies on how to manage it, rather than a quick solution. (Participant B, non-GP)

GP participants, despite their knowledge, often had fears of TCS and sought advice from their dermatologist colleagues for management plans for their own children. This often then influenced their own future treatment of their patients.

We saw a paediatrician … in hindsight, I realised, if we started the steroids earlier, it would have been much better. (Participant A, GP)

I’ve seen eczema before. But not firsthand and not a personal experience … well, now I’m not scared at all of the topical steroid. (Participant A, GP)

I didn’t understand as much back then about how to use (TCS) … I was initially, a bit more conservative of my topical steroid use because obviously you’re worried about certain side-effects. (Participant G, GP)

But after talking to many GPs and dermatologists … I’m a lot more aggressive in terms of treating with topical steroids. (Participant G, GP)

All participants recalled challenging experiences associated with eczema management. The majority of these experiences were results of physical complications from poorly controlled eczema.

You don’t want to be scratching every day, every second of your life. (Participant H, non-GP)

He (the child) is just very uncomfortable, you know. You need to be comfortable in your own skin. (Participant H, non-GP)

Some participants commented on the physical appearance of eczema inadvertently caused stigma. A few participants suggested a holistic approach to eczema management, given the impact on mental health.

I had someone describe his skin as reptilian like. (Participant H, non-GP)

He gets embarrassed … the kids point it out you know, what’s wrong with you? That sort of behaviour. It’s hard. (Participant H, non-GP)

Even GP participants who understood the complexities of diagnosing AD were conscience-stricken managing their own children’s skin problems.

Feeling a bit guilty as well … being a first-time parent … we didn’t pick it up for a while. (Participant G, GP)

The chronic and cyclical nature of eczema were a management challenge for many participants. They suggested that treatment is often ineffective and increasingly more frustrating with each flare.

I always feel like we’ve gone back to square one, like all the time. It’s the cycle. (Participant H, non-GP)

A few participants mentioned the financial impact of chronic eczema influenced their management decision-making. Although most participants acknowledged that steroids themselves did not account for a significant portion of their management costs, many recalled spending increasing amounts on other personalised creams or seeing specialists.

If I was going to a dermatologist and then getting the steroids, that would be a A$400 exercise. (Participant F, non-GP)

It is more the custom-made things, but the steroid creams … most of them are used sparingly, so it is not too costly. (Participant I, GP)

Personal knowledge of eczema management based on their experiences played a large role in impacting consistency of TCS use. All participants expressed concerns about the safety profile of steroids, particularly for children.

However, many participants also highlighted the positive features of TCS, which reinforced their continued use. All participants commented on the speed of improvement, and overall improvement of long-term management.

It’s nice to see when you apply it for a few days it (rash) goes away. (Participant F, non-GP)

I know that when it’s well-treated, ah, and treated early that is – it’s pretty manageable. (Participant E, non-GP)

Most participants initially had doubts in their confidence to maintain their child’s AD management. A lack of easily available information was the most stated reason behind their diminished perception of their own abilities. Participants with multiple children with eczema also commented that management became easier over time as they identified effective strategies.

Just a bit more time … and also just the understanding about – developing understanding about, um, using – being, being diligent in the use of topical steroids. (Participant G, GP)

Fragmentation of care was another prominent reason behind their perceived ability to follow their child’s management plan. Many participants commented on receiving different advice from different health professionals, but felt they did not have a proper holistic understanding of eczema management. Some GP participants felt their own knowledge was also lacking regarding identification and treatment of AD.

I didn’t have full understanding of, like, how important it was to – when, at the first sign of eczema, to treat it, um, straight away. (Participant G, GP)

Although some participants felt their own abilities improved after visiting a health professional, the majority felt that solutions were temporary, and their concerns were unheard.

GP doesn’t give you much of an overview. And just when your child is so young, you just think steroids, and then you go, oh, as that’s something really, really strong. (Participant F, non-GP)

Many were not initially aware of the prevalence of paediatric AD in Australia, and felt more reassured by acknowledgement from their GP.

I think it made me a little bit more comforted that she wasn’t the only one suffering from it (eczema). (Participant F, non-GP)

The experiences of friends and family members often acted as deterrents to TCS use.

My girlfriend is a naturopath … she doesn’t agree with steroids … she doesn’t approve. (Participant H, non-GP)

Grandparents … they have heard a lot … how it (steroids) might hinder their growth. (Participant I, GP)

His (a relative) has gone through withdrawal problems (from steroids) and he’s actually got an eye problem like cataract problem. (Participant B, non-GP)

However, a few participants felt that eczema management was individualised, and thought although it was useful to gather information, it did not impact on their approach.

I don’t follow really what his – his own experiences are, ‘cause as I said, everyone’s experiences seem to be different and pretty much unrelated to each other. (Participant B, non-GP)

Some participants expressed frustrations related to inadequate medical management, prompting them to seek alternative treatment advice from friends and families.

I saw online something like bathing the baby using a bit of oatmeal, so that was the therapy I was introduced to as well. (Participant E, non-GP)

I thought dietary as well … I was still breastfeeding … so I’ll try to avoid chilli foods. (Participant A, GP)

In the beginning when we were desperate, we even tried salt rooms. (Participant A, GP)

Participants who had tried alternative therapies, on recommendations from friends and families, did not express a lot of confidence in their effectiveness.

We don’t even know if they (alternative therapies) work or if they are even safe. (Participant J, non-GP)

It is worth noting that the majority of the caregivers interviewed did not pursue alternative treatments of their children’s atopic dermatitis.

Personal interpretation of packaging and labels of the TCS medications often influenced management. All participants recalled instructions calling for sparing use of TCS; however, their definitions of ‘sparing’ varied. Although most participants suggested they strictly followed labels; others felt their interpretation of the severity of the flare played the largest part in applying TCS.

I actually don’t use any sort of measuring system. I just squirt it on my finger and then go around. (Participant F, non-GP)

I would go by the label … only a really thin amount for no more than 2 weeks. (Participant B, non-GP)

Participants often commented on how helpless or frustrated they felt witnessing their child in pain. They felt it was hard to convey their own experiences to others involved in their children’s care, including grandparents and childcare staff. Some participants felt that although management plans made it easy to share with other carers, the consistency of management could not be guaranteed.

She’s in childcare, um, I can’t really keep an eye on what she’s doing to make sure that like, she’s not going to scratch herself to death. (Participant B, non-GP)

Whereas at home I can kind of be there, I don’t know, that’s kind of where (childcare) the stress kind of stems from. (Participant B, non-GP)