Asthma care for children and adolescents

Background: Asthma is one of the most common chronic diseases among young children and adolescents. With high quality health care, most children and adolescents with asthma can live an active and normal life. Yet, many children and adolescents have uncontrolled asthma, with symptoms and exacerbations which may affect their daily life. Adolescence is a sensitive period and asthma may be difficult to treat due to poor adherence to treatment. Little is known about health care professionals’ adherence to asthma guidelines and the patient experience of living with a chronic disease like asthma.

Aim: The overall aim of this thesis was to evaluate health care professionals’ adherence to national guidelines in asthma care and to explore consequences of living with a chronic disease like asthma.

Methods: Both quantitative and qualitative methods were used. In study I, medical records in Primary health care centres on children with asthma (0-16 years) (n = 424) were scrutinized based on quality indicators stated in national guidelines. In study II health related quality of life (HRQoL) was measured with the generic instrument EQ-5D and the study population consisted of 2,946 adolescents with and without asthma. They were recruited from the population based birth cohort BAMSE. Shared and individual experiences of daily living with asthma were explored through four focus group interviews (study III) among parents of children with asthma and adolescents with asthma and ten individual interviews (study IV) among adolescents with asthma.

Results: Study I showed that non-pharmacological treatment, such demonstration on inhalation technique, was less common (14%) than pharmacological treatment (58%). Documentation on tobacco smoke exposure showed low levels (14%). Spirometry tests were conducted in 14 % and at higher frequencies if there was access to an asthma nurse (P=0.003). Having asthma was shown to impair HRQoL (study II). Adolescents with asthma reported more pain and discomfort (P< 0.001) and a lower median EQ VAS than adolescents without asthma (85 vs 90, P=0.002), a finding which was still independent when adjusted for confounders. Adolescents with asthma reported impact on physical activities (study II and IV). Those adolescents with partly controlled or uncontrolled asthma reported lower median EQ VAS scores than those with controlled asthma (85 vs 90, P=0.04 and 70 vs 90, P=0.003). In study III, parents of children with asthma expressed frustration and a lack of knowledge of how to take care of their children. Adolescents with asthma developed their own strategies to manage their asthma (study III). Furthermore they reported struggles with ambivalence (study IV) between understanding and denial, confirmed but not defined by asthma, healthy but with asthma symptoms. Both parents and adolescents wanted to be met with understanding and competence.

Conclusion: There is a gap between the care provided for pediatric asthma at PHCs and the recommendations in national guidelines. Asthma during adolescence impairs HRQoL, with development of own strategies of self-management and several struggles of ambivalence between self- management and social interactions. Being a parent to a child with asthma entailed frustration and lack of knowledge. There is a need to be met with understanding and competence by health care professionals. These results support that asthma care need to be improved both in a nursing perspective and in a medical perspective.

List of scientific papers

I. Jonsson M, Egmar A-C, Kiessling A, Ingemansson M, Hedlin G, Krakau I, Kull I. Adherence to national guidelines for children with asthma at primary health centres in Sweden: potential for improvement. Prim Care Respir J 2012; 21(3): 276-282.
https://doi.org/10.4104/pcrj.2012.00051

II. Jonsson M, Bergström A, Egmar A-C, Hedlin G, Lind T, Kull I. Asthma during adolescence impairs health-related quality of life. J Allergy Clin Immunol Pract. 2015 Sep 2.
https://doi.org/10.1016/j.jaip.2015.07.020

III. Jonsson M, Egmar A-C, Hallner E, Kull I. Experiences of living with asthma – a focus group study with adolescents and parents of children with asthma. J Asthma. 2014 Mar;51(2):185-92.
https://doi.org/10.3109/02770903.2013.853080

IV. Jonsson M, Schuster M, Protudjer J P, Bergström A, Egmar A-C, Kull I. Perceptions of daily life amongst adolescents with asthma: the struggle with ambivalence. [Submitted]