Original ArticleBarriers to treatment of paediatric obstructive sleep apnoea: Development of the adherence barriers to continuous positive airway pressure (CPAP) questionnaire
Introduction
Treatment of obstructive sleep apnoea (OSA) with continuous positive airway pressure (CPAP) therapy is common and limited data suggest it may be effective at improving both objective and subjective symptoms of OSA in youth [1], [2]. However, the device must be used consistently for benefits to be realised, and missing even a single night’s use can cause significant health and behavioural consequences [3].
Rates of non-adherence are as high as 50% for other paediatric chronic illness treatment regimens [4] and adult CPAP treatment [5], yet little is known regarding rates of CPAP adherence or specific factors related to adherence for youth with OSA. A comprehensive literature review revealed only three studies that systematically examined adherence in children and adolescents prescribed CPAP therapy [1], [6], [7]. Across these studies, youth demonstrated poor average nightly rates of CPAP use, ranging from 5 to 7 h per night. Given that children require between 9 and 12 h of sleep per night depending on age [8], it is likely that these children were not using the device for the entire night’s duration. However, reasons for non-adherence have not been sufficiently explored.
To promote adherence, it is necessary to understand the specific barriers to adherence that youth and families are experiencing. Several general and disease-specific adherence barriers assessment measures have been developed for youth in the extant literature. Generic measures, such as the Illness Management Survey [9], often focus on topics such as oral medication use that are not salient to children with OSA and fail to fully encompass the complexities of the CPAP regimen. Disease-specific measures also have been designed for various medical populations: for example, the Parent and Adolescent Medication Barriers Scale [10] was designed for youth who have undergone organ transplants. Disease-specific measures have the advantage of obtaining specific barriers unique to the illness and treatment for which it was designed. Unfortunately, no tools currently exist with which to assess barriers to the CPAP regimen. Thus, a precedent and a need exist for the creation of a barriers measure for CPAP use in youth with OSA.
There are a number of potential barriers to adherence that families may face with regards to their child’s medical regimen. Barriers to adherence may be real or perceived and are specific to the individual; many patients struggle with more than one barrier [4], [9]. Various studies have examined the relation between barriers and adherence to medical treatments, and have found that children experiencing a greater number of barriers are more likely to exhibit poorer rates of adherence [11], [12], [13], [14].
While no research exists in the paediatric literature, studies have examined barriers to CPAP use in adult patients, primarily focussing on side effects. More patient-reported side effects were associated with poorer treatment adherence, with the most common reported being skin irritation, congestion, and mask air leaks [5]. A large study monitored 140 adults with OSA and found that those patients classified as “intermittent” CPAP users reported more adverse effects of CPAP use such as poor sleep, feeling uncomfortable, claustrophobia, and congestion [15].
The adult literature is informative but does not necessarily reflect the barriers experienced by paediatric patients. Given the importance of identifying barriers to adherence and the lack of a disease-specific screening tool for youth with OSA, the current study attempts to provide descriptive data on CPAP adherence in a sample of youth with OSA, and to develop a psychometrically sound measure with which to assess child and family barriers to CPAP adherence: the Adherence Barriers to CPAP Questionnaire (ABCQ). It is hypothesised that this new measure will evidence strong psychometric properties.
Section snippets
Participants
A total of 51 children and adolescents aged 8–17 years and their parent or guardian were recruited from an academic medical centre sleep specialty clinic in the southeastern United States. Fifty-three families were contacted for participation in the study, of which all agreed to participate (100%). Two families (4%) were later excluded from the study as children did not meet eligibility criteria. Inclusion criteria for study participation were: (1) a confirmed diagnosis of OSA for at least 6
Sample characteristics
The mean age of the 51 children who completed the study was 13.26 years (SD = 2.45), of which 51% were male. Fifty-one percent identified themselves as non-Hispanic Caucasian, 37% as Black or African American, and an additional 12% identified as from other racial or ethnic backgrounds. Caregivers were primarily mothers (70%) with a mean age of 41.27 (SD = 9.76), and 44% were from two-parent households. The sample was primarily of low socio-economic status (median annual income level of $20 k–30 k) and
Discussion
OSA is increasingly prevalent in children and adolescents and can affect both daytime and nighttime functioning [8], [25]. Because of the potential serious negative consequences (e.g., cardiovascular morbidity, cognitive and behavioural problems) of the disease, consistent management with nightly use of a CPAP device is imperative. Similar to other chronic illness treatment regimens, adherence to CPAP has been documented to be poor in adults [4], [5], [26]. Yet, a paucity of studies have
Conflicts of interest
The ICMJE Uniform Disclosure Form for Potential Conflicts of Interest associated with this article can be viewed by clicking on the following link: doi:10.1016/j.sleep.2011.10.026.
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2023, Sleep MedicineCitation Excerpt :Barriers to PAP span a number of domains that include, but are not limited to, emotional factors (e.g., embarrassment, fear of the mask), physical factors such as treatment side effects (e.g., nasal congestion), environmental factors (e.g., not using PAP when away from home), beliefs and expectations about one's condition and treatment (e.g., “I can stay healthy without using my PAP”), and behavioral factors (e.g., resistance, forgetting to use PAP). Patients and caregivers who endorse a greater number of barriers are more likely to have poorer adherence to PAP [10,11]. As such, it is critical to identify and understand the specific barriers experienced by pediatric patients and their caregivers and to implement interventions that effectively promote and maintain adherence by way of overcoming or minimizing barriers to adherence.
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