SAGE JOURNALS

First published: August 10 2016

Living with asthma and chronic obstructive airways disease

Introduction

Long-term respiratory conditions such as asthma and chronic obstructive pulmonary disease (COPD) are
common, with reported worldwide prevalence rates of almost 5% for both. COPD is associated with high
morbidity and high rates of hospital admissions, and is the third leading non-communicable disease cause
of death worldwide. Asthma is also associated with a significant symptom burden, and worldwide, the
number of disability-adjusted life years lost due to asthma has been estimated at 15 million per year, similar
to that for diabetes. Both asthma and COPD are diseases that remain life-long and are associated with
considerable morbidity, mortality and health resource use, along with higher than expected levels of
comorbidity. While asthma and COPD are controllable with pharmacological and non-pharmacological
treatment strategies, they are not curable; so many people live for many years with the consequences of
these conditions and need to efficiently self-manage their illness in order to achieve optimal outcomes.

There is good evidence for effectiveness of self-management in asthma, and increasingly so for COPD, in
improving outcomes. However, the challenges of implementing self-management support into routine
clinical practice are considerable with many patients lacking adequate self-management training and
support, and many professionals lacking time, skills or motivation to support self-management in patients.
Newer technologies such as telehealth and digital interventions are increasingly seen as potential
modalities for providing self-management support in a more acceptable, efficacious and cost-effective way.
Telehealth refers to healthcare provided ‘at a distance’ via the use of technology while ‘digital intervention’
refers to any intervention delivered by digital technology which would include web-based interventions on
PC or mobile devices, apps on smart phones and interventions delivered by text messages or interactive
voice recognition.

What is the role of self-management in chronic respiratory diseases?

The evidence base supporting self-management is compelling for asthma and recent studies are clarifying
the effectiveness in COPD. As a result, supporting self-management is a crucial aspect of best care for those
diagnosed with a chronic respiratory disease.

The treatment goals for asthma and COPD are broadly similar, aiming to control symptoms, maintain
activities and minimize risks of exacerbation. Asthma is characterized by reversible airflow obstruction and
variable symptoms, which are often underestimated by patients. Therefore optimizing symptom control is
a key goal, with the aim that patients should lead a full, active and unimpeded lifestyle. COPD, however, is
characterized by irreversible airflow obstruction and associated lung damage, so persistent symptoms are
usual, although slightly variable in severity. The aims of management are optimization of symptoms and
risk control and improving quality of life (QOL). These treatment goals are not currently achieved in either
conditionand care of patients with asthma and COPD is often suboptimal.
Focusing on COPD, a recent Cochrane systematic review has demonstrated that self-management improves
health-related QOL, reduces respiratory-related hospital admissions and improves levels of dyspnea.
However, due to heterogeneity, they were unable to be specific about what was the most effective form
and content of self-management in COPD and it is clear that the evidence supporting self-management in
COPD is more mixed than for asthma. At present, guidelines advise that optimum self-management in COPD
focuses on the importance of smoking cessation, reducing exposure to indoor and outdoor pollution,
promoting physical activity and healthy diet, adherence to pharmacological therapies and improving uptake
of vaccinations. Pharmacological action plans are sometimes recommended in specific contexts such as
supported discharge and exacerbation self-treatment with patient-held antibiotics and/or oral steroids,
because evidence for their widespread use has not been established and there is no evidence that altering
inhaled regimes in response to worsening symptoms can prevent exacerbations.

Implementing self-management – What is important?

Common to both asthma and COPD is a need to improve knowledge and understanding of the condition as
part of the package of self-management education. Broadly, this involves promoting the following
behaviours.

1. Recognizing a deterioration in symptoms (self-monitoring) and reacting appropriately.

2. Adhering to maintenance therapies.
3. Stopping smoking, avoiding triggers.
4. Health professional review.
5. Healthy lifestyle promotion (exercise, diet, stress reduction, relaxation, etc.).

As part of promoting these behaviors, health professionals should focus on empowering patients to take
control of their illness and manage their symptoms, emphasizing that improved QOL can be the resultant
outcome.

However, many people with chronic respiratory disease underplay their symptoms in order to avoid
accepting their diagnosis, mistakenly attribute symptoms to other causes, adopt sedentary lifestyles or
believe that their symptoms are normal for them or cannot be improved. It is therefore understandable
that when people do not attribute their symptoms to an underlying disease process, they are more likely
to consider that the advice provided to them is irrelevant. Facilitating a shared understanding of what
symptoms a person is experiencing and what is realistic for them to achieve with regular therapy is an
important place to start.

Recognizing deterioration in symptoms

Recognizing deterioration in symptoms is important as timely intervention can potentially avert progression
to a severe exacerbation. The evidence for effectiveness of self-monitoring of symptoms is more evident
for asthma patients than those with COPD. It is interesting to note that the latest UK BTS-SIGN Asthma
guideline has moved away from the term ‘self-monitoring’, using the term ‘recognition of deteriorating
symptoms’ instead. An analysis of exacerbations (n = 425) within a large randomized clinical trial (RCT) of
asthma treatments found that participants displayed evidence of deteriorating asthma control (a decline
in peak expiratory flow, increase in symptom scores or increase in reliever use) occurring gradually and
progressively for 5–7 days followed by a more rapid change over the 2–3 days before the exacerbation.
Other studies have found similar results, implying that there is a ‘window of opportunity’ to initiate
treatment to prevent progression to a severe exacerbation. Unfortunately, most patients lack action plans
and an effective way of improving uptake of self-monitoring remains elusive. New technologies, such as
smartphone and tablet computer apps could be used to address these issues, but the evidence for
effectiveness remains unclear. Additionally, even when self-management occurs, the resulting behaviour
is sometimes not appropriate or in accordance with the prior agreed action plan even in the context of
asthma clinical trials when presumed exemplary education on self-monitoring is provided.

Provision of an asthma action plan can support patients to self-monitor by providing written advice about
recognizing deteriorating symptoms and instructions on how to alter medications appropriately or when
to seek help. Discussing and agreeing an action plan is a collaborative activity between a patient and a
clinician and so takes time. Unfortunately the evidence is clear that they are not being used regularly, with
the majority of patients lacking an action plan, which in some cases leads to potentially preventable deaths.
Self-monitoring by individuals with COPD is recommended, although less emphasized in guidelines, due to
less evidence of effectiveness. This is particularly true of action plans that are often only recommended in
the immediate post-discharge situation as part of more extensive case management. However, they are
also sometimes provided to patients at risk of exacerbations in conjunction with self-held antibiotic and
oral steroid courses, despite the absence of a firm evidence base.

Technological advances have been employed in recent trials to promote self-monitoring in asthma. One
example is using a sensor on a reliever inhaler to detect increasing use, communicating via Bluetooth to a
smartphone to trigger alerts. It seems plausible that this type of ‘passive’ monitoring may be acceptable to
patients in the future and may lessen the treatment burden associated with self-management and self-
monitoring, thus potentially increasing adherence.

Therefore although the evidence quoted earlier shows that asthma self-monitoring, in association with a
written action plan, is best practice, it is clear that new strategies to increase uptake are needed. Several
systematic reviews have highlighted that for such interventions to be effective they have to consider
patient, professional and organizational issues, a feature that is not commonly found in published
interventions to date.

Promoting adherence to maintenance therapies

Non-adherence with maintenance therapy is common in people with long-term conditions, including lung
disease. When faced with patients with chronic respiratory diseases, it is important to consider whether
they are taking medications as prescribed, and to try and assess levels of adherence and understand
reasons for non-adherence in a non-judgemental way.

Taking medicines as prescribed in asthma and COPD is crucial to avoid exacerbations, improve day-to-day
control and reduce the risk of hospitalizations and death. For example, in asthma, falling levels of adherence
to inhaled corticosteroids (ICS) is associated with progressively poorer outcomes, with evidence that for
every 25% increase in time without ICS, the rate of asthma-related hospitalization doubles. Population
mean adherence rates to ICS are low, usually reported at 30–50%, with marked variability between
patients.

Not taking medications as prescribed can be intentional or unintentional. Common reasons for
unintentional non-adherence are poor inhaler technique and forgetting to take medication. Electronic
reminder systems show promise in the case of unintentional non-adherence due to forgetfulness, but seem
unlikely to be effective in those intentionally non-adherent and as yet there is no robust evidence relating
to their benefits, in terms of long-term adherence or improvements in clinical outcomes. Inhaler technique
problems are compounded by an ever-increasing array of inhalers with evidence that health professionals
can be as confused as patients. Checking inhaler technique is an essential part of any review. Instructional
videos have been shown to be an effective way of improving correct inhaler use, particularly in those with
limited health literacy and may be a useful option particularly where placebo inhalers are unavailable.

A qualitative synthesis by Pound et al. provides a detailed exploration of ‘why’ people do not take medicines
as prescribed. Many prefer not to take medicines at all where possible, with contributory factors being: (1)
doubts about the need for the medications in the first place (in asthma specifically, this is compounded by
a reluctance to accept the diagnosis) and (2) concerns about potential side effects of treatments. Actively
establishing underlying concerns during a review is essential to address adherence issues.

Lifestyle advice and triggers

Typical triggers for inducing symptoms in those with asthma or COPD are cigarette smoke, other
environmental irritants such as air pollution, allergens, infections, exercise and certain medications (e.g.
non-steroidal anti-inflammatory drugs, beta-blockers and aspirin).

The benefits of stopping smoking and achieving a smoke-free environment are clear in both asthma and
COPD, and for those with COPD, smoking cessation influences the natural history of the disease. Despite
this, one-third or more of patients with COPD continue to smoke, and smoking rates in people with asthma
are similar to those of the general population. Going forward, technology-supported interventions such as
txt2Stop may be increasingly considered. Infections are a well-recognized trigger for both asthma and
COPD, and promoting uptake of vaccinations is considered the best practice. While handwashing to the
reduce spread of infection has always been advocated, there is now firm evidence that this does reduce
spread of respiratory infections. Advice on avoidance of other triggers is less clear-cut. For example, UK
asthma guidelines discuss the potentially paradoxical effects of removing a pet from the home: it may
improve symptoms; however, removal of the allergen source also reduces the opportunity for tolerance
developing, which itself may reduce symptoms. House dust mites are a trigger for some individuals;
however, both chemical and physical methods of reducing house dust mites have been shown to be
ineffectual, and therefore advice to these individuals may revolve more around promoting adherence to
ICS. Regarding exercise, appropriate pharmacological therapy, in particular, using beta agonists before
exertion, should allow most of those with asthma to continue to exercise. While exercise training has not
been shown to specifically improve asthma outcomes, it does improve cardiovascular fitness, and should
be advocated as part of general healthy lifestyle measures. New technologies that promote physical activity
monitoring such as ‘Fitbit’ and ‘JawboneUP’, may prove useful as a means to promote activity, but this
remains an evolving area. For those with COPD there is good evidence that pulmonary rehabilitation classes
relieve symptoms such as dyspnoea and fatigue, and improve emotional functioning and their uptake
should be promoted at every opportunity and, in recent times, pulmonary rehabilitation via telecare has
been increasingly advocated as a potential way to deliver such services. With asthma, stress and anxiety
can be a trigger for some individuals and there is higher prevalence of psychological problems in those with
asthma. Those with anxiety and depression tend to have poorer outcomes, so establishing the presence of
these comorbidities and discussing management strategies is an important aspect of asthma care. As web-
based cognitive behavioural therapy or apps become increasingly available, this provides another
therapeutic option to offer, which might be particularly useful for those for whom lack of time is a
significant barrier to accessing such services.
Can technology improve self-management?

Self-management in chronic respiratory diseases improves outcomes but how best to improve uptake on a
day-to-day basis remains unclear. The traditional method of self-management support and education
during face-to-face reviews only works in a proportion of individuals and the lack of support between
reviews may be a barrier to sustained engagement with self-management. There is increasing interest in
using technology to improve uptake of self-management behaviours. This might work by facilitating
alternatives to face-to-face reviews (such as via telephone) or as a way of providing ongoing tailored
information and support between reviews, such as with digital interventions, as illustrated in Figure 2.
Digital interventions to promote self-management behaviours may work completely independently from
health professionals through the provision of automated tailored advice generated by the intervention
based on information provided by the patient. More commonly, digital interventions are used as telehealth
interventions, where patients provide clinical data to a health professional in a different location, who
reviews it and provides tailored advice back (via the intervention), for example, based on oxygen saturation
levels or peak flows. The majority of digital interventions published to date include a telehealth component,
with completely stand-alone digital interventions in the minority.

There appears to be a divergence in the use of technology when investigating its role in supporting self-
management of chronic respiratory diseases, with telehealth being the most popular modality for COPD,
but with asthma digital interventions generally including automated advice, often supplemented with
additional health professional input. This is possibly driven by the increased evidence and experience of
using action plans in asthma, which lend themselves well to algorithm-based digitally generated advice.

There is also burgeoning literature for digital interventions supporting lifestyle and behaviour change as
part of optimum self-management, for example, interventions supporting stopping smoking and increasing
physical activity.

Technology and COPD

In 2011, McLean et al. provided a clinical overview of telehealthcare for long-term conditions (COPD, heart
failure and diabetes), noting that telehealthcare interventions were proliferating rapidly. They reported
some isolated examples of success, particularly in those with severe chronic diseases such as problematic
asthma and diabetes that it could reduce hospital admissions, without increasing mortality, and suggesting
that less complex interventions may be more cost-effective. They also detailed potential pitfalls associated
with introducing telehealthcare such as enduring technical difficulties, safety concerns (data loss,
confidentiality), potential adverse effects on workload and negative effects on patient–professional
relationships. A Cochrane review focusing on COPD reported more convincing findings, with evidence of
improvements in QOL and ED attendances, although noting that these telehealth interventions were often
part of a larger complex intervention so that teasing out which elements were effective was not possible.
These findings mirror that of the UK government-funded Whole Systems Demonstrator (WSD) project that
investigated the role of telehealth and telecare technologies in chronic disease management and included
the world’s largest RCT of telehealth involving 6191 patients with diabetes, COPD or heart failure. Across
the three chronic diseases (disease-specific data is not available for these outcomes), it showed some
reductions in emergency admission rates, length of admission, markedly reduced mortality rates (4.6% vs
8.3%, p < 0.001), but overall was not found to be cost-effective.
Pinnock et al. evaluated integrating a COPD telehealth intervention into existing clinical services with both
control and intervention groups having care from the same clinical provider. They found no difference in
their primary outcome, time to first admission, or in any secondary outcomes (including disease-specific
QOL and length of admission). As well as the mixed results regarding effectiveness, the review by McLean
et al.75 highlighted potential negative implications on the patient–provider relationship, including
reinforcement of historical power relationships with ‘passive patients being monitored by a now distant
medical professional’. However, qualitative studies report that patients are mostly positive about their
experiences, reporting that they felt safer and that they had learned more about their condition, and staff
felt that the improved knowledge could be a useful long-term benefit. Earlier qualitative work had also
suggested that interacting with a telehealth intervention and receiving feedback from the health
professional can increase satisfaction in relation to factors such as continuity of care, understanding of
symptom variability and encouragement of self-management behaviour. While participants were mostly
positive about their role in telemonitoring, several were glad to hand their devices back at the end of this
short (3–6 month) study, stating that they were getting bored using it everyday. This raises the question
about long-term sustainability of such interventions requiring regular work by the patients that increase
their overall treatment burden.37

Qualitative studies suggest that COPD telehealth interventions should complement rather than replace
current clinical care, supporting and encouraging self-management and that interventions that are
specifically developed to be intuitive and easy to use can overcome perceived barriers to using technology
by those with little experience of it.

The uncertainties over telehealth in COPD are such that it is not clear how it would work in real-life settings,
and future research needs to be clear about the aims and structure of the telehealth interventions, and to
consider implementation issues from the outset. If telehealth is to be effective, then it must not add to the
burden of treatment that patients already endure. There are suggestions from qualitative, but not
quantitative studies, that there may be a group of patients for whom telehealth reduces the burden of
disease and increases confidence. Strategies for establishing who is most likely to benefit from telehealth
interventions is another important gap in the available evidence.

Other uses of technology in COPD include the provision of information or support online, for example, via
social media. Many disease-based charities such as the British Lung Foundation or American Lung
Association have a linked Facebook page or website, with forums where users can ask questions and hear
about experiences of others with similar problems. These may be useful for practical queries that users
may have, for example, recommendations for a suitable backpack for carrying home oxygen. However, a
quick review of such sites shows evidence of potentially harmful advice being posted by other users. For
example, one user requesting advice due to experiencing increased shortness of breath and cough, was
advised to drink plenty of water to ‘thin the phlegm down’. Following such advice would have detrimental
effects if heart failure was the underlying pathology.

‘YouTube’ is another commonly used source of information and COPD is one of the few disease areas where
the quality of information provided on YouTube has been formally evaluated. Unsurprisingly they report
the quality as mixed: 70% of the 223 patient education videos they evaluated demonstrated high scores
providing quality and trustworthy health information, but 20% were very poor. This suggests that clinicians
may want to find videos they have looked at themselves to ensure they are suitable, and be specific in
recommendations.

Technology and asthma

A Cochrane review focusing on telehealth in asthma concluded that the likelihood of clinically meaningful
benefits in those with mild-to-moderate asthma was low, with more potential demonstrated in those with
severe disease. As alluded to above, there is more interest in the role of digital interactive interventions for
supporting self-management in asthma, which are inexpensive to produce in comparison with professional
care and so have the potential to be cost-effective. A systematic review of automated digital interventions
to support self-management for adults with asthma concluded that there was some evidence of
effectiveness, but that understanding of the active ingredients of such interventions was not possible due
to lack of detail in the descriptions, particularly as there was little evidence that intervention development
had been theory informed. A later systematic review also found that the majority of interventions did not
use any theoretical frameworks or guidelines to inform their design. With increasing emphasis on the
importance of theory-informed development, it may be that the evidence picture becomes clearer over
the next decade.

Future directions

Support for self-management aims to improve outcomes in a number of ways: improved recognition of
deteriorating symptoms, more appropriate responses to exacerbations, improving adherence (intentional
and non-intentional) to medication and empowering patients to take control of their illness.

As a treatment strategy, self-management support is not offered enough by health professionals or utilized
enough by those with the potential to benefit. Health professionals need to develop a more patient-centred
approach, recognizing the importance of a positive patient–provider relationship if outcomes are to
improve.

Technology has potential to facilitate effective self-management, particularly around ways of reducing the
burden of self-management such as with passive monitoring, improving the delivery of self-management
education and the development of more sophisticated interactive interventions that can provide safe and
clinically appropriate advice directly to the user 24 hours a day. Research into digital interventions to
support self-management is still in its infancy, and previously evaluated interventions have not always been
developed using best practice. The key will be ensuring that future interventions are developed using best
available evidence, are ‘person-based’ (i.e. developed with adequate attention to user experience),
robustly evaluated and with implementation issues considered from the beginning including at patient,
professional and organizational levels.

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or
publication of this article.

Funding
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or
publication of this article: D Morrison swas undertaking a fellowship funded by the Chief Scientist Office
Scotland at the time of writing this review (Ref CAF 11/08). This research received no other specific grant
from any funding agency in the public, commercial, or not-for-profit sectors.