Paediatric atopic dermatitis and treatment adherence: Exploring factors contributing to topical corticosteroid phobia as a contributor to poor treatment adherence

Abstract

Atopic dermatitis (AD), also known as eczema or atopic eczema, is the most common chronic inflammatory dermatosis (skin condition) affecting paediatric patients in the western world. There continues to be a rapid rise in incidence of this condition worldwide with a doubling of prevalence in children under age five years in the past 30 years. It also remains one of the most treatable with correct management. Topical corticosteroids (TCS), which have a topical anti-inflammatory action, remain central to this management. However, parent and patient poor adherence to prescribed treatment plans often leads to less effective control of their AD. A review of the literature demonstrated that one of the commonly cited contributing factors to treatment non-adherence in paediatric AD is a fear or anxiety regarding the use of TCS, a condition termed ‘TCS phobia’ (Chapter 2). Although moderate to severe atopic dermatitis is disabling and highly disruptive for patients and their families, TCS phobia is a significant barrier to effective treatment. This thesis presents a body of work that aims to identify the sources of information or misinformation about the safety and efficacy of TCS, as well as assessing the impact of this information on parents’ and patients’ perception on the long term use of TCS to manage their AD. Previous research has identified that parents of children with AD highlight the role of family and friends, the Internet, pharmacists and general practitioners as key sources of information that contribute to fear and anxiety towards using TCS to manage AD. This can create conflicting information leading to confusion and ultimately poor or non-adherence to prescribed treatment plans. This is especially the case when the conflicting information comes from different members of the multidisciplinary treatment team. A multidisciplinary treatment team incorporates health care professionals from different disciplines who provide a specific service and associated health information to the patients, and in the setting of AD in Australia includes general practitioners, dermatologists, and pharmacists. Therefore, it is important to investigate the knowledge and attitudes of these health professionals about the safety and efficacy of TCS that forms the advice provided to parents and patients in paediatric AD. This is because treatment adherence is directly related to risk/benefit of treating a condition as well as the perception of disease severity. If the perceived risks associated with treatment, such as TCS in paediatric AD, out way the perceived benefits or perceived disease severity, then there is significant risk of treatment non-adherence. A consensus statement and systematic review of the adverse effects arising from the use of TCS in children with atopic dermatitis was performed (Chapter 3). The aim of the consensus meeting was to identify the potential and perceived adverse effects and systematically review the literature for each. Dermatologists play a key role as clinical educators around the use, safety and efficacy of TCS. A cross-sectional survey of all Australian dermatologists was performed to assess their attitudes towards the use and safety of TCS in paediatric AD (Chapter 4). Close to half (44%) of the 455 dermatologists in Australia completed the survey (n=198). Nearly all responders prescribed potent or super-potent TCS in the management of paediatric AD. The most common side-effect cited by over two-thirds of the respondents was peri-orificial dermatitis with only a minority (6%) citing cutaneous atrophy. Most dermatologists stated that pharmacists were the most common source of misinformation leading to TCS phobia. Of the respondents, 75% strongly agreed that TCS do not cause skin atrophy when used appropriately and under clinical supervision. Furthermore, 77% agreed or strongly agreed that the words ‘use sparingly’ should be removed from pharmacist labels on TCS prescriptions. This study indicates that dermatologists comfortably manage paediatric AD with potent or super-potent TCS and believe that TCS do not cause skin atrophy in paediatric AD. This is in keeping with the current up to date literature on the safety and efficacy of TCS in this setting and represents the baseline against which other healthcare professionals should refer to when providing advice about the treatment of paediatric AD. Parents and dermatologists commonly cite conflicting information provided by pharmacists on the safety and efficacy of TCS in paediatric AD as contributing to TCS phobia and serving as a major impediment to treatment adherence. Consequently, a study was conducted to assess pharmacists’ beliefs and information on the safety of TCS in paediatric AD treatment (Chapter 5). A cross-sectional survey to assess attitudes and knowledge on the use of TCS in paediatric AD was completed by Australian pharmacists (n=292) who attended a continuing professional development conference. The mean response rate for each question was 86% of the 292 surveyed. Of the responders, 64% recognised that treatment non-adherence was a major reason for treatment failure in paediatric AD. Only a quarter (27%) of the pharmacists would instruct parents/patients to apply TCS until the eczema is clear. Over half (54%) of the responders indicated they would instruct patients to use TCS sparingly. Nearly half (46%) of the responders believed that cutaneous atrophy was the commonest side-effect from use and over half (56%) indicated that side-effects would occur, even if used appropriately. This study demonstrated the existence of significant knowledge gaps about the use and safety of TCS in paediatric AD in Australian pharmacists. Furthermore, their advice to patients potentially contributes to poor treatment adherence because of this misinformation which can contribute to the fear and anxiety around using TCS. Parents cite general practitioners and pharmacists as a source of information that contributes to TCS phobia which can in turn affect treatment adherence. The previous study demonstrated the knowledge gap amongst Australian pharmacists. Therefore, a study was conducted to assess general practitioners’ beliefs and information on the safety of TCS in paediatric AD treatment (Chapter 6). A cross-sectional survey was performed on Australian general practitioners (n=257) participating in continuing professional development programs. Over a third (40.7%) instruct parents to apply TCS for two weeks or less. Nearly half (47.7%) instruct parents to apply TCS sparingly or with the smallest amount possible. Furthermore, nearly a third (30.2%) reported skin atrophy as the most common TCS side effect. Therefore, this study demonstrates that advice from their general practitioner may carry unintentional risk messages contributing to a fear and anxiety about using TCS and ultimately can lead to treatment non-adherence. The studies in chapters 4 to 6 demonstrate the potential for conflicting advice from healthcare professionals in a patient’s multi-disciplinary treatment team. However, an investigation was needed to assess the actual impact of the advice from healthcare professionals on patients and parents’ perception of the safety and efficacy of TCS in AD. Furthermore, it is important to assess the advice provided by pharmacists and general practitioners as related to and reported by patients and parents of patients using TCS on a long-term basis for AD (Chapter 7). A multi-centre cross-sectional survey was performed on a total of 123 adult patients and 78 parents (n=201). Of the total respondents, three quarters (76.6%) reported consistently (“Often” or “Always”) receiving one or more message(s) regarding TCS “risk” from a general practitioner (GP) and/ or pharmacist (n=192). Respondents reported being told to “try natural or complementary and alternative therapies before resorting to the use of TCS” significantly more often by pharmacists than by GPs (p=0.039). This study demonstrates that high rates of consistently delivered messages about TCS “risk” from GPs and pharmacists do affect patient/parent understanding about TCS safety. This “risk” messaging can contribute to fear and anxiety about using TCS and may lead to treatment non-adherence. Chapters 4 to 7 provide evidence that conflicting information from different healthcare professionals in the multi-disciplinary treatment team leads to the delivery of negative risk messaging to parents and patients with AD. This contributes to TCS phobia and can lead to poor treatment outcomes due to non-adherence. However, non-health professional such as parents, family and friends, and the Internet are others sources of knowledge about AD and its treatment. This was also investigated. The perception of TCS safety in the management of AD is influenced by family/friends of the patient or parent of children with AD. This means these are another potential source of misinformation on TCS which can negatively impact perceptions of TCS safety. A multicentre cross-sectional survey of patients (aged >18years old) and parents of patients (aged <18years old) with a history of a chronic inflammatory dermatosis was performed to assess information they receive from family/friends and the Internet about TCS use (Chapter 8). A total of 123 patients and 78 parents completed the survey (n=201). Parents/Patients reported that they were more likely to be informed by the Internet “[having] my [child’s] skin condition means that [I/he/she] will need to use topical corticosteroids” (p <0.001) and that “inflamed skin conditions will improve with the topical corticosteroids” (p = 0.007). On the other hand, family/friends were more likely to recommend parents/patients “try nonprescription creams/ointments before resorting to the use of prescription topical corticosteroids” (p = 0.014). This study highlights that high rates of messages about TCS ‘risk’ from family/friends and the Internet may affect patient/parent understanding about TCS safety. Furthermore, this may contribute to treatment non-adherence. Chapters 3 to 8 have demonstrated external influence that can deliver negative biases that contribute to fear and anxiety about TCS use and ultimately lead to non-adherence in the treatment of paediatric AD. However, a parent’s perception of disease severity, representing an ‘internal’ influence bias, can contribute to whether or not they treat their child’s AD. If a parent assesses their child’s AD to be less severe than it actually is, they are much more likely to undertreat and more likely to be non-adherent with the prescribed management plan. A study was performed comparing parent reported disease severity compared to physician assessed disease severity (Chapter 9). A prospective cohort study recruited fifty paediatric patients and their caregivers from an outpatient dermatology clinic. Two clinicians completed ratings on the Eczema Area and Severity Index (EASI) tool and caregivers completed ratings on the Self-Administered EASI (SA-EASI) and Dermatology Quality of Life Index (DLQI) tools. EASI scores between clinicians were compared and there was good inter-clinician reliability (p = 0.351 ). There was a strong, positive statistically significant correlation between EASI and SA-EASI (r = 0.865, p= <0.01). The EASI score mean was statistically significantly higher than the SA-EASI mean (p = <0.001) for a given patient. This study looked to establish a discrepancy between clinician and caregiver perception of atopic dermatitis severity. It showed that caregivers significantly underestimate the severity of their child’s atopic dermatitis. This provides the clinician with a greater understanding into poor treatment compliance commonly observed in clinical practice and highlights a need to provide parents with a greater understanding of their child’s disease. By establishing the severity of the eczema to the caregiver, the clinician is empowered to provide education about the expectations surrounding treatment, allowing greater insight into noncompliance. This can facilitate an approach to the fears and misconceptions that caregivers may have. Overall, the studies in this thesis contribute to an awareness of the sources of negative risk or misinformation about the safety and efficacy of TCS in the setting of paediatric AD. Furthermore, it demonstrates the direct impact of this information on patients and parents. These findings provide the basis for education programs to help educate the healthcare professional members of the multi-disciplinary treatment team. It is through consistent positive messaging from these healthcare professionals that patients and parents will be better equipped and supported to combat the negative risk messaging from non-healthcare professional sources such as family, friends and the Internet. Ultimately, this has the capacity to positively impact treatment adherence and outcomes for both the patient with AD and their entire family unit.