What do adolescents with asthma really think about adherence to ...

Downloaded from http://bmjopen.bmj.com/ on June 14, 2017 - Published by group.bmj.com

Open Access

Research

What do adolescents with asthma really think about adherence to inhalers? Insights from a qualitative analysis of a UK online forum Anna De Simoni,1 Robert Horne,2 Louise Fleming,3 Andrew Bush,3 Chris Griffiths1

To cite: De Simoni A, Horne R, Fleming L, et al. What do adolescents with asthma really think about adherence to inhalers? Insights from a qualitative analysis of a UK online forum. BMJ Open 2017;7:e015245. doi:10.1136/ bmjopen-2016-015245 ►► Prepublication history and additional material are available. To view these files please visit the journal online (http://dx.doi. org/10.1136/bmjopen-2016- 015245).

Received 23 November 2016 Revised 6 March 2017 Accepted 5 April 2017

1

Asthma UK Centre for Applied Research, Centre for Primary Care and Public Health, Barts and The London School of Medicine and Dentistry, Queen Mary University of London, London, UK 2 Asthma UK Centre for Applied Research, Centre for Behavioural Medicine, UCL School of Pharmacy UCL, London, UK 3 Asthma UK Centre for Applied Research, Imperial College and Royal Brompton Hospital, Biomedical Research Unit at the Royal Brompton & Harefield NHS Foundation Trust and Imperial College London, London, UK Correspondence to Dr Anna De Simoni; a.desimoni@qmul.a c.uk

ABSTRACT

Objective To explore the barriers and facilitators to inhaled asthma treatment in adolescents with asthma. Design Qualitative analysis of posts about inhaler treatment in adolescents from an online forum for people with asthma. Analysis informed by the Perceptions and Practicalities Approach. Participants Fifty-four forum participants (39 adolescents ≥16 years, 5 parents of adolescents, 10 adults with asthma) identified using search terms ‘teenager inhaler’ and ‘adolescent inhaler’. Setting Posts from adolescents, parents and adults with asthma taking part in the Asthma UK online forum between 2006 and 2016, UK. Results Practical barriers reducing the ability to adhere included forgetfulness and poor routines, inadequate inhaler technique, organisational difficulties (such as repeat prescriptions), and families not understanding or accepting their child had asthma. Prompting and monitoring inhaler treatment by parents were described as helpful, with adolescents benefiting from self-monitoring, for example, by using charts logging adherence. Perceptions reducing the motivation to adhere included asthma representation as episodic rather than chronic condition with intermittent need of inhaler treatment. Adolescents and adults with asthma (but not parents) described concerns related to attributed side effects (eg, weight gain) and social stigma, resulting in ‘embarrassment of taking inhalers’. Facilitators to adherence included actively seeking general practitioners’/consultants’ adjustments if problems arose and learning to deal with the side effects and stigma. Parents were instrumental in creating a sense of responsibility for adherence. Conclusions This online forum reveals a rich and novel insight into adherence to asthma inhalers by adolescents. Interventions that prompt and monitor preventer inhaler use would be welcomed and hold potential. In clinical consultations, exploring parents’ beliefs about asthma diagnosis and their role in dealing with barriers to treatment might be beneficial. The social stigma of asthma and its role in adherence were prominent and continue to be underestimated, warranting further research and action to improve public awareness of asthma.

Background Asthma is the the most common chronic disease in UK affecting 800 000 adolescents.1 Prevalence, morbidity and mortality are high

Strengths and limitations of this study ►► This is the first study to use online forum data to

explore barriers and facilitators to adherence to inhaler treatment in adolescents (13–19 years). Results confirm and extend the current evidence from traditional research approaches, offering new insight on adolescents’ perceptions of taking inhalers. ►► The study used a novel methodological approach by qualitatively analysing posts of patients on an online forum using a framework-based approach. Strengths of this approach are the spontaneous nature of the data, which are less likely to be affected by selfpresentation, reactivity and recollection biases, and the inclusion of participants who might not take part in traditional research studies. The online interaction between adolescents, parents and adults with asthma offers interesting angles and adds value to the exploration of barriers and facilitators to inhaler treatment in asthma. ►► However, limitations are potential biases in the sample selection, limited information on participants’ background characteristics and the inability to ask follow-up questions. ►► Because of the online forum platform restrictions, adolescent users were 16 years or older, and factors affecting adherence to inhalers in younger adolescents were reported by a third party (parents of adolescents with asthma or adults with asthma).

among adolescents, with higher rates of exacerbation, hospitalisation and death than in younger children. Reported adherence to inhaled corticosteroid (preventer inhalers) in adolescents is poor, ranging from 25% to 35%,2 and associated with adverse outcomes, including death.3 4 Asthma exacerbations are effectively reduced when adherence to preventer inhalers is greater than 80%.5 However half of the studies included in a recent review showed that in children and adolescents adherence to inhalers recorded through electronic monitoring was less than 50%. All studies except one reported

De Simoni A, et al. BMJ Open 2017;7:e015245. doi:10.1136/bmjopen-2016-015245

1


Open Access adherence rates below the 80% needed to reduce asthma exacerbations, and even lower adherence was recorded in older adolescents (16 years and in full-time education. Perceptions reducing motivations to take both types of inhalers embraced social stigma and negative connotations associated with taking inhalers; illness representation in adolescents making them doubting their asthma diagnosis and need of long-term treatment; feeling of immortality and ‘won’t happen to me’; not taking inhalers as attention seeking behaviour; and suffering from side effects like tremors. Positive thinking, ability to learn a lesson from not properly taking inhalers, seeking help from healthcare professionals, peer-to-peer support received through the online forum and feeling ‘ambassadors of the condition’ were facilitators in increasing motivation to adhere to inhaler treatment. The main practical barrier specifically related to preventer inhalers was forgetting and lack of reminders when doses were due. Self-monitoring of treatment and ‘learning a lesson’ from non-adherence causing asthma deterioration were facilitators of adherence to preventer inhalers. Parents could play a positive role in the latter. The main concerns related to preventer inhalers were linked to side effects. Actively seeking help and advice to deal with side effects was a facilitator. Issues discussed with reliever inhalers focused on practical barriers like poor inhaler technique, and perceptual barriers linked with the embarrassment of taking the inhalers in public, especially in mild/moderate asthma


9

An adolescent described that when trying to get a GP appointment because her asthma symptoms were playing up and her peak flow was sliding down, she was told by the receptionist that surely an appointment the following week would have done, as it ‘was only for asthma’. She commented she was lucky not to have brittle asthma. (Female, age not stated, adolescent, N.36) Even healthcare professionals were felt at times not to have a full knowledge of asthma and of the existence of asthma without predominant wheeze. A few participants in 2015 exchanged posts of frustration describing some doctors saying that their chest was clear and therefore asthma was not out of control, despite their symptoms of breathlessness, frequent need of reliever inhalers and a decreased peak flow. An adolescent wrote empathising with somebody else in the forum that he also never wheezed, yet he was getting lot of comments from doctors that his chest was clear and ‘all good’. He stated that he did say he never wheezes, except when having an allergic reaction to latex, otherwise no wheeze at all. He commented that he hated [hated repeated 5 times] being told about the absence of wheezes and thanked the other user for making him feel he was not alone. (Male, age not stated, adolescent, N.29)


Open Access when diagnosis may have been hidden from people around the adolescent. Discussion Summary This online forum reveals a rich source of often candid information illuminating practical and perceptual barriers to adherence to asthma inhaler treatment experienced by adolescents. Our findings from a novel source triangulate with, confirm and extend previous research. Our data emphasise several points. The social stigma of asthma and its potential adverse effects on adherence to inhaler treatment remain underestimated and warrant further research. Urgent action is warranted to improve public awareness of the impact on the individual of mild/moderate asthma and linked need of regular inhaler treatment. Adolescents’ understanding of asthma as episodic rather than chronic condition, concerns about the personal needs for regular inhalers and the side effects of preventer inhalers emerged as important barriers to adherence. Actively seeking healthcare professionals’ treatment adjustments if problems arose and learning to deal with side effects were reported as adherence facilitators. Parents can play a key role in adherence to inhaler treatment by helping with practical barriers like dealing with repeat prescriptions and prompting preventer inhaler use, addressing adolescents’ perceptual concerns, and in some cases simply accepting that their child indeed has asthma. Interventions that prompt and monitor inhaler use hold particular potential for adolescents who forget to take preventer inhalers.

the forum, relatively few posts and users were identified through the keyword search. The search was limited to words adolescents, teenagers and inhaler, and therefore might have missed posts where none of these keywords were present, although inhaler treatment was discussed. Information about participants such as age, gender, inhaler type and asthma diagnosis was limited to what was revealed within their posts and could not be verified. We could not account for the number of participants who wrote 42% of all relevant posts included into this study, as usernames were ‘hidden’ by the posting users. Forum participants were older adolescents (≥16 years) and difficulties of younger adolescents were reported secondhand by parents or retrospectively by adults with asthma. Therefore the views of younger adolescents were poorly represented or under-represented when reported secondhand. Nevertheless issues with taking inhalers described in this study do triangulate with the ones emerging from UK school teenagers ().23 The forum was moderated and some of the posts might have been removed or affected by the moderation process.

Strengths and limitations This is the first study that used online forum data to explore barriers and facilitators to inhaler use in adolescents with asthma using a framework that allows analysing illness and treatment representations, how these influence coping strategies and how coping mediates the relationship between illness perceptions and health outcomes.22 A strength of this work lies in the spontaneous nature of the data provided by online fora. Such data are less likely to be affected by self-presentation, reactivity and recollection biases and by the influence of the researcher’s agenda.15 Adolescents’ concerns about the shape of inhalers in social context have not been previously reported in literature. Moreover fora allow collection of data from participants who might not take part in traditional research studies and from a wide geographical location. The main limitations of this approach are potential biases in the sample of participants (ie, adolescents who took part in an online asthma forum), limited information on participants’ background characteristics, which might have affected representativeness, and the inability to ask follow-up questions to participants. Considering the time span of

Comparison with existing literature The results from this online forum confirm the barriers to inhaler taking treatment from previous literature.4 10 11 24 Parents played an important role in adherence to inhaler treatment, as previously described.25 Interestingly, both adolescents and, with hindsight, also adults with asthma recognised the importance of directly observed treatment in guaranteeing good adherence to inhalers. Indeed, there is evidence that a positive subjective view of parents towards preventer inhalers and parents’ stimulation of their offspring to use them is associated with good adherence, regardless of ethnic background in children aged 7–17 years.26 Adolescents’ beliefs about asthma and its treatment were important determinants of adherence to inhalers, with many forming this necessity belief following a negative experience that they attributed to their non-adherence, according to another study.27 The same study cites the embarrassment experienced by adolescents being diagnosed with asthma and with taking inhalers. This factor might play a role in the adolescents’ decision to stop taking preventer inhalers or take them suboptimally, with the intent of proving the asthma diagnosis was wrong or that there was no need of taking them constantly. This was particularly relevant in mild/moderate asthma, where being asthmatic could be more easily hidden from people, for example school friends. Although embarrassment and social stigma associated with asthma and inhaled treatment were mentioned by adolescents and by adults with asthma in the online forum, none of the parents in this study did (see online supplementary figure 1), suggesting a potential poor parental awareness of this factor and of the bearing of the negative social consequences faced by their children. Similarly, concerns about side effects related to preventer

10



Open Access inhalers were described by adolescents in this study as previously shown,28 while comments on side effects were absent from parents’ posts. Clinical implications Barriers and facilitators to inhaler treatment identified in this study can inform and improve consultations with adolescents with asthma. Clinical consultations could be better structured to integrate both adolescents’ and parents’ roles in dealing with the practicalities and perceptions of inhaler treatment. In consultations with adolescents, particular attention could be paid to checking the acceptability of inhaler devices (and offering alternatives if appropriate) and identifying side effects. Digital reminders and self-monitoring to deal with forgetfulness hold potential with improving adherence to preventer inhalers. Enquiring about and problem-solving concerns about taking inhaler treatment, including those relating to social norms and social consequences, and communicating a common-sense rationale for the personal necessity of preventer treatment might have beneficial effects on adherence. In light of the results presented here, parents’ involvement in adolescents’ adherence should perhaps be explored more in consultations. Asking parents about their beliefs regarding asthma treatment, their awareness of the social stigma of asthma, and exploring their involvement in the practicalities of requesting, collecting prescriptions and prompting/reminding about inhaler taking, or helping to empower their child to complete these tasks would benefit adolescents’ adherence. We found further candid evidence of how adolescents with asthma feel derided, excluded and embarrassed by their condition, both in public and in some cases even by members of healthcare teams. Even a few doctors in posts dated 2015 were reported denying diagnosis of acute exacerbations of asthma based on the absence of wheezes on chest auscultation, despite adolescents’ other symptoms (breathlessness, increased need of reliever inhalers, chest tightness, cough, decreased peak flows). This led to patients’ frustration and suggests there is a need for improving awareness of asthma diagnosis among healthcare professionals. (The British Thoracic Society (BTS)/Scottish Intercollegiate Guidelines Network (SIGN) Asthma Guideline 2014 for asthma diagnosis reads: more than one of the following symptoms: wheeze, breathlessness, chest tightness and cough). Interestingly, the forum provided a useful medium by which adolescents could share strategies to deal with embarrassment and to improve public awareness of asthma, which could be helpful in clinical consultations with adolescents admitting problems with the disease stigma (eg, feeling an ambassador of the condition and asthma inhaler treatment; using a normalising statement ‘many people suffer with asthma’; focusing and enjoying things one can do rather than can’t do). De Simoni A, et al. BMJ Open 2017;7:e015245. doi:10.1136/bmjopen-2016-015245

Future research These results inform the development of future interventions to improve adherence to inhaler treatment in asthma. Intervention components can be modelled on the barriers to adherence identified and according to hypothesised causal pathways, allowing isolation and measurements of their effects on the intervention outcomes. The social stigma of asthma and its role in adherence were prominent and underestimated. More work is needed to establish whether the embarrassment and social stigma of asthma are linked to non-adherence in a causal way, and more action is needed to ensure asthma is represented in a positive way in the media. In light of the importance of parents’ involvement in adherence to inhaler taking in adolescents with poorly controlled asthma,29 and the lack of data of parental support with inhaler taking across adolescence years, finding out the prevalence and extent of parents’ involvement in asthma treatment, and correlating it with age, social background and ethnicity, might be helpful in identifying the opportunity for targeted adherence interventions. Future research should focus on test effectiveness and cost-effectiveness of interventions that prompt and monitor inhaler use. Electronic monitoring devices hold potential to monitor adolescents’ adherence,30–32 but could also potentially be used to empower adolescents and enable them to monitor their adherence and promote self-management. Electronic dose reminding and monitoring effects on adherence might not be sustained over time,31 and therefore there is a need to find new ways to sustain such effect. Acknowledgements We are grateful to Asthma UK and HealthUnlocked for permission to analyse the online forum. We would like to thank Daniella Samos for assistance with visualisation of word frequencies. Contributors ADS and CJG conceived the work. All authors (ADS, RH, LF, AB, CJG) contributed to the design of the study. ADS wrote the study protocol and collected the data from internet. ADS and CJG analysed the data, and all authors (ADS, RH, LF, AB, CJG) contributed to the interpretation of findings. RH helped with the classification and mapping of the emerging themes according to the PAPA framework. ADS wrote the first version of the manuscript. All authors (ADS, RH, LF, AB, CJG) undertook a critical revision of the article and gave their final approval for the manuscript to be published. Funding ADS is funded by an NIHR Academic Clinical Lectureship. AB is an NIHR Senior Investigator and additionally was supported by the NIHR Respiratory Disease. RH was supported by the National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research (CLAHRC) North Thames at Barts NHS Trust. The views expressed are those of the author(s) and not necessarily those of the NHS, NIHR or Department of Health. Competing interests None declared. Provenance and peer review Not commissioned; externally peer reviewed. Data sharing statement This is not applicable as the data were not collected for this study but available on the internet. Asthma UK and HealthUnlocked have approved the study protocol. Open Access This is an Open Access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY 4.0) license, which permits others to distribute, remix, adapt and build upon this work, for commercial use, provided the original work is properly cited. See: http://creativecommons.org/ licenses/by/4.0/

11


Open Access

1. Couriel J. Asthma in adolescence. Paediatr Respir Rev 2003;4:47–54. 2. Bender B, Wamboldt FS, O'Connor SL, et al. Measurement of children's asthma medication adherence by self report, mother report, canister weight, and Doser CT. Ann Allergy Asthma Immunol 2000;85:416–21. 3. Fleming L, Wilson N, Bush A. Difficult to control asthma in children. Curr Opin Allergy Clin Immunol 2007;7:190–5. 4. Rabe KF, Adachi M, Lai CK, et al. Worldwide severity and control of asthma in children and adults: the global asthma insights and reality surveys. J Allergy Clin Immunol 2004;114:40–7. 5. Santos PM, D'Oliveira A, Noblat LA, et al. Predictors of adherence to treatment in patients with severe asthma treated at a referral center in Bahia, brazil. J Bras Pneumol 2008;34:995–1002. 6. Morton RW, Everard ML, Elphick HE. Adherence in childhood asthma: the elephant in the room. Arch Dis Child 2014;99:949–53. 7. Dinwiddie R, Müller WG. Adolescent treatment compliance in asthma. J R Soc Med 2002;95:68–71. 8. Desai M, Oppenheimer JJ. Medication adherence in the asthmatic child and adolescent. Curr Allergy Asthma Rep 2011;11:454–64. 9. Crocker D, Brown C, Moolenaar R, et al. Racial and ethnic disparities in asthma medication usage and health-care utilization: data from the National Asthma Survey. Chest 2009;136:1063–71. 10. Bollinger ME, Mudd KE, Boldt A, et al. Prescription fill patterns in underserved children with asthma receiving subspecialty care. Ann Allergy Asthma Immunol 2013;111:185–9. 11. Pai AL, McGrady M. Systematic review and meta-analysis of psychological interventions to promote treatment adherence in children, adolescents, and young adults with chronic illness. J Pediatr Psychol 2014;39:918–31. 12. Dean AJ, Walters J, Hall A. A systematic review of interventions to enhance medication adherence in children and adolescents with chronic illness. Arch Dis Child 2010;95:717–23. 13. Mosnaim GS, Pappalardo AA, Resnick SE, et al. Behavioral interventions to improve Asthma outcomes for Adolescents: A Systematic Review. J Allergy Clin Immunol Pract 2016;4:130–41. 14. Edgecombe K, Latter S, Peters S, et alHealth experiences of adolescents with uncontrolled severe asthma. Arch Dis Child 2010;95:985–91. 15. De Simoni A, Shanks A, Mant J, et al. Making sense of patients' internet forums: a systematic method using discourse analysis. Br J Gen Pract 2014;64:e178–e180.

16. Balasooriya-Smeekens C, Bateman A, Mant J, et al. Barriers and facilitators to staying in work after stroke: insight from an online forum. BMJ Open 2016;6:e009974. 17. De Simoni A, Shanks A, Balasooriya-Smeekens C, et al. Stroke survivors and their families receive information and support on an individual basis from an online forum: descriptive analysis of a population of 2348 patients and qualitative study of a sample of participants. BMJ Open 2016;6:e010501. 18. Harvey KJ, Brown B, Crawford P, et al. 'Am I normal?' Teenagers, sexual health and the internet. Soc Sci Med 2007;65:771–81. 19. Seale C, Charteris-Black J, MacFarlane A, et al. Interviews and internet forums: a comparison of two sources of qualitative data. Qual Health Res 2010;20:595–606. 20. Eysenbach G, Till JE. Ethical issues in qualitative research on internet communities. BMJ 2001;323:1103–5. 21. Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol 2006;3:77–101. 22. Horne R. Compliance adherence and concordance. In: Taylor KMG, Harding G, eds. Pharmacy practice. London: Taylor & Francis, 2001. 23. Harris K, Mosler G, Williams SA, et al. Asthma control in London secondary school children.J Asthma 2017;23:1–8 24. Cole S, Seale C, Griffiths C. ‘The blue one takes a battering’ why do young adults with asthma overuse bronchodilator inhalers? A qualitative study: Table 1. BMJ Open 2013;3:e002247:pii. 25. Edgecombe K, Latter S, Peters S, et al. Health experiences of adolescents with uncontrolled severe asthma. Arch Dis Child 2010;95:985–91. 26. van Dellen QM, Stronks K, Bindels PJ, et al. Adherence to inhaled corticosteroids in children with asthma and their parents. Respir Med 2008;102:755–63. 27. Buston KM, Wood SF. Non-compliance amongst adolescents with asthma: listening to what they tell Us about self-management. Fam Pract 2000;17:134–8. 28. Taddeo D, Egedy M, Frappier JY. Adherence to treatment in adolescents. Paediatr Child Health 2008;13:19–24. 29. Ellis DA, King P, Naar-King S, et al. Effects of family treatment on parenting beliefs among caregivers of youth with poorly controlled asthma. J Dev Behav Pediatr 2014;35:486–93. 30. Chan AH, Stewart AW, Harrison J, et al. The effect of an electronic monitoring device with audiovisual reminder function on adherence to inhaled corticosteroids and school attendance in children with asthma: a randomised controlled trial. Lancet Respir Med 2015;3:210–9. 31. Strandbygaard U, Thomsen SF, Backer V. A daily SMS reminder increases adherence to asthma treatment: a three-month follow-up study. Respir Med 2010;104:166–71. 32. Charles T, Quinn D, Weatherall M, et al. An audiovisual reminder function improves adherence with inhaled corticosteroid therapy in asthma. J Allergy Clin Immunol 2007;119:811–6.

12


© Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2017. All rights reserved. No commercial use is permitted unless otherwise expressly granted.

References


What do adolescents with asthma really think about adherence to inhalers? Insights from a qualitative analysis of a UK online forum Anna De Simoni, Robert Horne, Louise Fleming, Andrew Bush and Chris Griffiths BMJ Open 2017 7:

doi: 10.1136/bmjopen-2016-015245 Updated information and services can be found at: http://bmjopen.bmj.com/content/7/6/e015245

These include:

References

This article cites 31 articles, 11 of which you can access for free at: http://bmjopen.bmj.com/content/7/6/e015245#BIBL

Open Access

This is an Open Access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY 4.0) license, which permits others to distribute, remix, adapt and build upon this work, for commercial use, provided the original work is properly cited. See: http://creativecommons.org/licenses/by/4.0/

Email alerting service

Receive free email alerts when new articles cite this article. Sign up in the box at the top right corner of the online article.

Topic Collections

Articles on similar topics can be found in the following collections Respiratory medicine (328)

Notes

To request permissions go to: http://group.bmj.com/group/rights-licensing/permissions To order reprints go to: http://journals.bmj.com/cgi/reprintform To subscribe to BMJ go to: http://group.bmj.com/subscribe/