Details of development of the resource for adults with asthma in the RAISIN (randomized trial of an asthma internet self-management intervention) study

Background Around 300 million people worldwide have asthma and prevalence is increasing. Self-management can be effective in improving a range of outcomes and is cost effective, but is underutilised as a treatment strategy. Supporting optimum self-management using digital technology shows promise, but how best to do this is not clear. We aimed to develop an evidence based, theory informed, online resource to support self-management in adults with asthma, called ‘Living well with Asthma’, as part of the RAISIN (Randomized Trial of an Asthma Internet Self-Management Intervention) study. Methods We developed Living well with Asthma in two phases. Phase 1: A low fidelity prototype (paper-based) version of the website was developed iteratively through input from a multidisciplinary expert panel, empirical evidence from the literature, and potential end users via focus groups (adults with asthma and practice nurses). Implementation and behaviour change theories informed this process. Phase 2: The paper-based designs were converted to a website through an iterative user centred process. Adults with asthma (n = 10) took part in think aloud studies, discussing the paper based version, then the web-based version. Participants considered contents, layout, and navigation. Development was agile using feedback from the think aloud sessions immediately to inform design and subsequent think aloud sessions. Think aloud transcripts were also thematically analysed, further informing resource development. Results The website asked users to aim to be symptom free. Key behaviours targeted to achieve this include: optimising medication use (including inhaler technique); attending primary care asthma reviews; using asthma action plans; increasing physical activity levels; and stopping smoking. The website had 11 sections, plus email reminders, which promoted these behaviours. Feedback on the contents of the resource was mainly positive with most changes focussing on clarification of language, order of pages and usability issues mainly relating to navigation difficulties. Conclusions Our multifaceted approach to online intervention development underpinned by theory, using evidence from the literature, co-designed with end users and a multidisciplinary panel has resulted in a resource which end users find relevant to their needs and easy to use. Living well with Asthma is undergoing evaluation within a randomized controlled trial. Electronic supplementary material The online version of this article (doi:10.1186/s12911-015-0177-z) contains supplementary material, which is available to authorized users.


Component: Info page -challenge attitude (denial) and illustrate benefits of accepting diagnosis, and taking medications. Using quotes where applicable. Source
Finding relevant to adherence Suggested feature of website.
Asthma literature review More holistic approach to actions plans -'living with asthma plan'. [8,9] Relates to tone of the intervention -make relevant to user. Discuss benefits in terms of beneficial impact on life, family, rather than medical issues such as hospitalisations. GINA guidelines chapter 4, component 1 -key components of successful asthma education programme. [1]  Discussion of expectations Explain can aim for minimum symptoms, and minimal impact on day to day life, provide sample 'goals' for patients to select. Provide AAPs to facilitate goal achievement  Prevention of symptoms and attacks Info illustrating risks of poor adherence on symptoms and exacerbation risk.
 Acceptance this is continuing processes Encourage acceptance of diagnosis by illustrating benefits of taking meds to QOL, activities, general life. Provide examples of identified barriers from literature to help user identify any relevant to self. List provided in figure 4.1-4 GINA guidelines [1] page and potential strategies to overcome. E.g. if recognise a complicated regime contributing then encourage discussion with health professional. Quotes illustrating positive experience of patients who started taking medication and then felt better for example, and examples of how barriers to adherence can be overcome. Individuals who believe that consequences of non-adherence are severe are more likely to be adherent than those who believe that consequences less serious, and that loss framing messages are slightly more effective than gain-framed messages. (However, evidence that when preventative behaviours are the target , as here, gain framing more effective.) [10] Information will be presented to promote the continuation of a healthy symptom free life, rather than the threat of e.g. hospitalisation to encourage adherence. This relates to general tone of intervention message.

Focus group
Taking inhaler is admission to individual that they have asthma. Encourage acceptance of diagnosis by illustrating benefits of taking meds to their QOL, activities and general life.

Component: Info -common barriers to adherence and suggestions to overcome Source
Finding relevant to adherence Suggested feature of website, specific to component.

Asthma literature review
Having the same type of inhaler for reliever and preventer improves outcomes of asthma control and exacerbation rate. [11] Help patients to identify barriers to taking meds and if complicated regime contributing then encourage discussion with health professional Adherence review [2]: DiMatteo MR et al. Health Psychology Review 2012; 6(1):74-91.
People with asthma must have the tools and strategies necessary and must have the capacity to overcome barriers to adherence -so important task for health professional is help patient identify and overcome barriers to adherence.
Provide examples of identified barriers from literature to help user identify any relevant to self. E.g. if recognise a complicated regime contributing then encourage discussion with health professional.
A complex treatment regime is one of the most consistent barriers to successful adherence.
Help patients to identify barriers to taking med. If complicated regime contributing then encourage discussion with health professional. People with asthma must have the tools and strategies necessary and must have the capacity to overcome barriers to adherence -so important task for health professional is help patient identify and overcome barriers to adherence. Asthma literature review People with asthma are poor at recognising deterioration in asthma symptoms, and therefore unable to act appropriately. [4] Provide info how to self monitor Provide info to show benefits of self monitoring Guided self management with asthma plan (including health professional review improves asthma related outcomes. [6] Information pages about how to self manage e.g. self monitor, use an AAP, role of goals in self management Provide action plans Self monitoring in order to recognise loss of asthma control is a grade A recommendation within the BTS/SIGN guidelines. [12].

Info about how to monitor self for deterioration in symptoms
Weekly monitoring may be sufficient in those with well or partly controlled asthma, and that this could safely become less frequent once good control is achieved. [13] Info about how to monitor self for deterioration i.e. symptoms or via PEF monitoring, and how often to monitor.
GINA guidelines chapter 4, component 1 -key components of successful asthma education programme. [1]  Signs that suggest asthma is worsening and actions to take. Multifaceted approaches work best involving combinations of strategies such as providing information and reminders, simplifying behaviour required, practicing ongoing assessment, counselling, self monitoring and providing reinforcements.
Intervention will utilise combination of strategies: information provision, tools for self monitoring, reminder emails Focus group Provide information about how to self manage to facilitate adherence. Info pages -how to self monitor recognising deteriorating symptoms Component: Info page -benefits of, and getting the most out of, the annual review Source Finding relevant to adherence Suggested feature of website.
Asthma literature review Goal setting has been a component of successful interventions in asthma, with patient centred goals described. [14] Encourage user to consider goals to discuss at annual review.
Guided self management with asthma plan (including health professional review improves asthma related outcomes. [6] Information pages about role of annual review. Shared decision making (incorporating patient goals and preferences into the consultation) improved adherence to medication and clinical outcomes. [15] Encourage user to consider goals to discuss at annual review.
GINA guidelines chapter 4, component 1 -key components of successful asthma education programme. [1]  Development of a partnership between patient and health professional.
 Sharing of information.
Provide info about benefits of attending for health professional review.
Adherence review [2]: A complex treatment regime is one of the most consistent barriers to successful adherence.
Help patients to identify barriers to taking meds. If complicated regime contributing then encourage discussion with health professional. Mental health issues represent another common barrier to successful adherence, and health professionals should assess for the presence of such issues Point out this can be a barrier and provide links to relevant websites e.g www.glasgowsteps.com with advice to discuss with health professional.
When individuals are adequately informed, they are better able to share in the decisions that affect their health, and are more committed to regimes that they have had a part in choosing.
Set up reminder email prior to date of due annual review, suggesting user visits website prior to annual review. Info about what to expect from the annual review and how to get the most from it. Focus group Participants keen to have face to face contact as part of the asthma review.
Information about getting the most of the annual review. There is evidence that during the medical visit physicians consistently omit critical elements of information regarding medication use, thus contributing to non-adherence.
Content of website to be consistent with guideline recommendations, so will mirror what is discussed with health professionals.
Focus group Length of time between annual reviews -difficult to retain the information.
Provide info which mirrors that discussed during annual review, and can be revisited by user at any time. Website to bridge the gap between asthma reviews by being source of information, and reminders (e.g. hay fever season, flu jab due).
Information will be available at all times via website, and will mirror that discussed in annual asthma reviews Website being recommended by nurses during asthma reviews.
Information will mirror that discussed in annual asthma reviews. Website informed by inclusion of practice nurses during focus groups studies Provide tool to assess control/symptoms e.g. ACT, ACQ People with asthma are poor at recognising deterioration in asthma symptoms, and therefore unable to act appropriately. [4] Provide tools for self monitoring e.g. ACT, ACQ with resultant action plans to ensure appropriate action taken. People with asthma alter medications inappropriately in response to a perceived deterioration in symptoms. [17] Tool to aid assessment of current control either by PEF or symptom score Self monitoring in order to recognise loss of asthma control is a grade A recommendation within the BTS/SIGN guidelines. [12] Info about how to monitor self for deterioration in symptoms Tool to use to assess current control either symptom score or PEF Weekly monitoring may be sufficient in those with well or partly controlled asthma, and that this could safely become less frequent once good control is achieved. [13] Info about how to monitor self for deterioration i.e. symptoms or via PEF monitoring, and how often to monitor.
GINA guidelines chapter 4, component 1 -key components of successful asthma education programme. [1]  Signs that suggest asthma is worsening, and actions to take  Monitoring control of asthma  How and when to seek medical attention Provision of tools to facilitate self monitoring.

 Prevention of symptoms and attacks
Tool to establish current level of control, and advice on action to take. Multifaceted approaches work best involving combinations of strategies such as providing information and reminders, simplifying behaviour required, practicing ongoing assessment, counselling, self monitoring and providing reinforcements.
Intervention will utilise combination of strategies: information provision, tools for self monitoring, reminder emails Focus group Not being prepared for flare -either unexpected worsening of symptoms, or for time of year when symptoms regularly more problematic.
Provide tool to establish if control is poor e.g. ACT, ACQ Use of reminder emails e.g. in spring in case worsens with pollen.
Provide information about how to self manage to facilitate adherence. Info pages -how to self monitor recognising deteriorating symptoms, how to use AAPs and benefits of using them. How to recognise barriers to adherence. Tools -to monitor self either with symptoms (ACQ or ACT) or via PEF( via calculator or diary) Tools to promote adherence e.g. using goal setting and action plans.

Component: Email reminders Source
Finding relevant to adherence Suggested feature of website, specific to component.
Asthma literature review Guided self management with asthma plan (including health professional review improves asthma related outcomes. [6] Email reminders about attending for health professional review Shared decision making (incorporating patient goals and preferences into the consultation) improved adherence to medication and clinical outcomes. [15] Email reminders to encourage viewing of website prior to annual review GINA guidelines chapter 4, component 1 -key components of successful asthma education programme. [1]  Development of a partnership between patient and health professional.
 Sharing of information. Multifaceted approaches work best involving combinations of strategies such as providing information and reminders, simplifying behaviour required, practicing ongoing assessment, counselling, self monitoring and providing reinforcements.
Intervention will utilise combination of strategies: information provision, tools for self monitoring, reminder emails It is crucial to assess, and to regularly track the continuing adherence status of individual patients as it is one of the best ways to estimate future behaviour.
Occasional email reminders to think about recent control e.g RCP 3 questions, if haven't logged on for a set time period.
When individuals are adequately informed, they are better able to share in the decisions that affect their health, and are more committed to regimes that they have had a part in choosing.
Set up reminder email prior to date of due annual review, suggesting user visits website prior to annual review.

Focus group
Not being prepared for flare -either unexpected worsening of symptoms, or for time of year when symptoms regularly more problematic.
Use of reminder emails e.g. in spring in case worsens with pollen.
Website to bridge the gap between asthma reviews by being source of information, and reminders (e.g. hay fever season, flu jab due).

Email reminders
Providing means to track use of medications, or flag up need to order meds in. User can determine depth of information by presenting info in graded form Provide information which has undergone user review (think aloud studies) to optimise users ability to understand it. There is evidence that during the medical visit physicians consistently omit critical elements of information regarding medication use, thus contributing to non-adherence.
Providing alternative comprehensive source of information available 24/7 via a website.
Several meta-analysis have highlighted the importance of tailoring to obtain optimum effectiveness User can determine depth of information by presenting info in graded form.
Providing information to individuals is essential, but not sufficient to ensure adherence. More information leads to improved recall (but patients can become overwhelmed) and better outcomes when physicians assess patients' recall.
Provide a 'print this page' button so that users can print off particular pages that are relevant to them.
When individuals understand clearly and remember what they are asked to do, they are much more likely to do it.
User can determine depth of information by presenting info in graded form. Provide information which has undergone user review (think aloud studies) to optimise users ability to understand it.

Focus group
Length of time between annual reviews -difficult to retain the information.
Provide info which mirrors that discussed during annual review, and can be revisited by user at any time. 'Print this page option' Staggering the available information to be relevant as possible User can determine depth of information by presenting info in graded form. Provide information which has undergone user review (think aloud studies) to optimise users ability to understand it. Website to bridge the gap between asthma reviews by being source of information, and reminders (e.g. hay fever season, flu jab due).
Information will be available at all times via website, and will mirror that discussed in annual asthma reviews Making the information fun and attractive.
Provide information which has undergone user review (think aloud studies) to optimise users ability to understand it. Use images and videos where relevant.

Component: Asthma action plan (AAP) Source
Finding relevant to adherence Suggested feature of website, specific to component.

Asthma literature review
Health professionals don't always offer action plans [4,5,20] Provide alternative means of accessing action plan via freely available website People with asthma are poor at recognising deterioration in asthma symptoms, and therefore unable to act appropriately. [4] Provide tools for self monitoring e.g. ACT, ACQ with resultant action plans to ensure appropriate action taken. People with asthma alter medications inappropriately in response to a perceived deterioration in symptoms. [17] Provide action plan to guide medication alteration Health professionals belief that actions plans only suitable for certain patients -e.g well educated with well controlled asthma. [5] Provide alternative means of accessing action plan via freely available website Guided self management with asthma plan (including health professional review improves asthma related outcomes. [6] Provide action plans GINA guidelines chapter 4, component 1 -key components of successful asthma education programme. [1]  Monitoring control of asthma  How and when to seek medical attention Provision of AAP to guide medication changes, changes to monitoring frequency, or to suggest health professional review.

 Prevention of symptoms and attacks
Tool to establish current level of control, and advice on action to take.

 Person then requires a written asthma action plan
Provide asthma action plans, this can relate to medication changes, frequency of self-monitoring, when to seek input from health professional. Focus group Provide information about how to self manage to facilitate adherence. Tools to promote adherence e.g. using goal setting and action plans.
Component: Menu of template goals with associated action plans to achieve goal Source Finding relevant to adherence Suggested feature of website, specific to component.
Asthma literature review Goal setting has been a component of successful interventions in asthma, and patient centred goals decribed. [14] Provide menu template goals (lifestyle rather than medication) Provide action plans to facilitate goal achievement ( not just medication related, could be exercise, self monitoring, stopping smoking) More holistic approach to actions plans -'living with asthma plan'. [8,9] Relates to tone of the intervention -template goals provided with relevant advice to achieve goal relevant to individual. Shared decision making (incorporating patient goals and preferences into the consultation) improved adherence to medication and clinical outcomes. [15] Provide template goals (lifestyle rather than medication) with assoc action plans to help achieve goals.
Qualitative work shows that from a patients perspective that while these goals[no night time cough etc] are acknowledged they are mediatory and patients prefer to consider end state lifestyle goals such 'playing football again' or having 'a normal life'. [21] Explain can aim for minimum symptoms, and minimum impact of day to day life, provide sample 'goals' for patients to select which are relevant to own life, based on this qualitative work.
GINA guidelines chapter 4, component 1 -key components of successful asthma education programme. [1]  Discussion of expectations Explain can aim for minimum symptoms, and minimal impact on day to day life, provide sample 'goals' for patients to select. Provide AAPs to facilitate goal achievement Focus group Provide information about how to self manage to facilitate adherence. Tools to promote adherence e.g. using goal setting and action plans.
Component: Info -encourage positive involvement of family/friends in management Source Finding relevant to adherence Suggested feature of website, specific to component.
Asthma literature review Role of social relationships can negatively impact on people with asthmas ability to self manage, e.g. perceived 'nagging' from family members to take medication, over reactions, or indifference. [22] Provide page aimed at family/friends about how can support the person with asthma to manage their asthma as well as possible Positive social relationships e.g. helpful reminders to take medications. [22] Provide info to illustrate potential beneficial role of family friends, with page targeted to family or friends. Adherence review [2]: DiMatteo MR et al. Health Psychology Review 2012; 6(1):74-91.
Cultural norms, family members and friends also strongly influence patients' decisions about health actions -particularly through their goals and intentions -and adherence to treatment is no exception.
Provide info page targeted at family/friends to encourage positive influence on adherence.

Component: Tailored asthma action plan Source
Finding relevant to adherence Suggested feature of website, specific to component.

Asthma literature review
People with asthma find action plans are not relevant or useful to their own situation [9] Tailor asthma action plans (e.g. to severity, experience, goals) in the context of living with asthma plan People with asthma feel that action plans are not relevant to their situation. [5] *Those described as compliant (taking optimal doses of both reliever and preventer) felt action plans do not acknowledge their own experience, irrelevant * Those described as non compliant felt that action plans could be useful for people with "more serious" or "proper" asthma.

Tailor action plan based on severity
Several meta-analysis have highlighted the importance of tailoring to obtain optimum effectiveness Action plans can be tailored where possible.

Component: Diary tool for keeping track of medication used Source
Finding relevant to adherence Suggested feature of website, specific to component. Providing information to individuals is essential, but not sufficient to ensure adherence. More information leads to improved recall (but patients can become overwhelmed) and better outcomes when physicians assess patients' recall.
Provide optional self test quizzes When individuals understand clearly and remember what they are asked to do, they are much more likely to do it.
Self test quizzes may aid recall, as will option to print specific pages AAP -Asthma action plan (this can refer to a plan advising about altering medications, monitoring regimes, when to seek health professional review); ACQ -Asthma control questionnaire; ACT -Asthma Control Test; PEF -peak expiratory flow; RCP 3Q -Royal College Physicians 3 Questions (to assess control)