Changing the conversation about health

Winner: Michael Pittilo essay prize 2010

feet on scalesAn integrated approach to a patient on long-term systemic corticosteroid treatment

By Fiona Price-Kuehne –  University College London Medical School

Corticosteroids have played a vital role in the life-saving treatment of my systemic vasculitis, Wegener’s granulomatosis. Indeed without their help, I may not have been here today. However, the treatment has come at a price; mood-swings, muscle-wastage and osteoporosis are just a few of the side-effects that I have battled with as a result of long-term systemic steroid treatment.  

For patients like me with a chronic inflammatory or autoimmune condition, those with scleroderma, Crohn’s disease or rheumatoid arthritis to name just a few, the anti-inflammatory and immunosuppressant actions of long-term steroid therapy can give us a quality of life and a control of our diseases that would otherwise be impossible. Unfortunately, the systemic nature of the drug means that its side-effects are wide-ranging and potentially devastating to our health and general wellbeing.  

I believe that an integrated approach to patients on long-term steroids is the key to lessening the impact that the treatment has on the patient’s life, with particular focus on weight-control, bone-health and psychological problems. While some benefits would be evident straight away and others would be seen ten years on and beyond, the person’s journey through healthcare and life in general could be transformed for the better.  

An Integrated Approach  

Central to an integrated approach to the person on long-term steroids is patient-education from the very beginning of treatment, explaining the possible short-term and long-term consequences of steroid-therapy. By empowering the person with the knowledge to self-care and self-manage, they are encouraged to take responsibility for their health. Crucially, the person must decide themselves to make choices and changes in their life that will keep them well. They can only do this with guidance and education.  

Support from experts in fields such as diet and nutrition, stress-relief and exercise is essential. These specialists would be well-versed in the complexities of a patient with an underlying disease who is on long-term systemic steroid treatment. The specialist would also appreciate the individuality of the person, taking into account their unique needs, feelings and way of life, as a whole. Together the patient, specialist and medical team can confront weight control, bone health and mental wellbeing.    

applesEating well and dealing with an increased appetite  

Dramatic weight-gain is one of the most dreaded side-effects of treatment with corticosteroids. While obesity is a well-established risk factor for cardiovascular disease, strokes and diabetes in the general population, for the person on long-term steroid treatment weight-gain takes on an even greater significance. Obesity can exacerbate other steroid-related problems such as osteoporosis and hypertension and it may well affect the course of the person’s underlying disease. Therefore, weight control is extremely important.  

The problem is that steroid-induced weight-gain is associated with a vast increase in the patient’s appetite. This is not to be underestimated; the appetite felt by people on long-term steroids can be, quite literally, all-consuming. I remember well the early days of my treatment when I could have easily wolfed down a whole loaf of bread in one go…and then another an hour later.  The oft-repeated advice “stop eating when you are full” is unhelpful for the person on steroids and a ‘one-size-fits-all’ diet plan would be wholly inappropriate. Working with a dietician to produce a well considered diet plan that offers strategies to deal with an increased appetite is the key to success.  

Importantly, the patient and dietician must work together and discuss the patient’s lifestyle and feelings. This way, dietary advice will fit to the individuality of the person and will tackle any unhealthy eating habits. Advice on classes of food, calories and portion size can help to control weight-gain and deal with the increased appetite. It may be necessary to begin with a reasonably strict diet-plan but over time, as the person better understands their needs and their new steroid-appetite, their diet will naturally become more varied.  

Communication between dietician, patient and healthcare workers will ensure that limitations and restrictions due to the underlying disease, such as the ability to prepare a meal or interactions with other medication, are taken into account. It will also mean that appropriate dietary guidelines are followed; an adequate dietary intake of calcium and vitamin D is important to help prevent steroid-induced osteoporosis. [i]  

It is significant that the patient understands how maintaining a healthy weight and eating well will impact positively on their future health and wellbeing. Dramatic weight-gain can be incredibly demoralising, and to avoid it is fantastic. Ten years later, the person will be less likely to suffer from diabetes, cardiovascular disease, strokes and cancer, and their underlying condition may well have benefited, too. As I will discuss, the psychological impact of the patient being empowered to take control of their diet and weight will positively affect their other experiences in life and healthcare ten years down the line and beyond.    

man on exercise bikeThe importance of exercise  

Those who take corticosteroids on a long-term basis are at an increased risk of developing osteoporosis; corticosteroid-treatment is thought to double the risk of fractures of the hip and at least quadruple the risk of vertebral fractures.[ii] However, despite the substantial effects that steroids have on bone metabolism, life-style factors still play a huge part in the prevention of the condition: a fact emphasised by the Royal College of Physicians’ guidelines on steroid-induced osteoporosis. In addition to avoiding excessive alcohol intake and not smoking, exercise is a key way of protecting and promoting bone-health while on long-term steroids. Specifically, bone responds positively to regular weight-bearing and resistance exercise.  

It is important that the patient works with, and is educated by, a physiotherapist who is sensitive to the needs of a person on long-term steroids with a chronic condition. Together, they can work to find a way of exercising that works with the illness, and not
against it. The underlying disease may cause issues with pain, mobility and energy levels, all of which must be taken into consideration; it is imperative that the exercise does not do more harm than good! A weight-bearing and enjoyable form of exercise can be found that is perfect for the person, whether it be dancing, walking or lifting small weights. With advice from the medical-team, the person can be educated on how often they should be exercising and for how long. To find this exercise and for the patient to understand the significance of the exercise to their future bone and overall health, a trusting and educational relationship with the physiotherapist is vital.  

The patient on long-term steroid treatment who has been eating healthily and keeping as active as their body allows will be reaping the benefits in ten years’ time. Muscles will have retained strength, despite having to fight against wastage caused by steroids, and the development of osteoporosis may have been avoided. By keeping bones strong, the person will hopefully have avoided steroid-related fractures, which can cause substantial disfigurement, disability and pain. Of course, regular exercise also has huge benefits for future cardiovascular health and may help with psychological issues such as depression, from which people with chronic illnesses are more likely to suffer.[iii]    

Dealing with psychological effects  

The psychological effects of corticosteroids can be devastating. Treatment-induced mood-swings, anxiety, stress and irritability impact negatively on the person’s wellbeing and cause problems in their home-life, work-life and relationships. Mood-swings in the patient on steroids can be dramatic, switching from almost-euphoric happiness one moment to overwhelming irritability and anxiety the next.[iv]  It is vital that the person learns how to deal with these psychological problems that steroids can bring to help reduce the impact that the treatment has on their life and general wellbeing.  

Mindfulness-based therapy (MBT) is derived from ancient Buddhist and Yoga practices. Including mindfulness-based cognitive therapy and stress-reduction programmes, the practice aims to teach how to find a quiet, peaceful state of mind and deal with stressors in life. One review of literature demonstrated that MBT is a promising intervention for treating anxiety and mood problems in clinical populations, including those who suffer from problems caused by medication. MBT is also associated with a general reduction in stress, perhaps by encouraging the patients to relate differently to their physical symptoms, so that when the symptoms do occur the impact is lessened.[v]  

By following a mindfulness-based therapy programme, the person on steroids is taught to train their mind to function in a non-judgemental minute-to-minute mode. This means that while encouraged to take note of their thoughts and emotions, the person learns to let the feelings pass without judging them or becoming immersed in them. This is extremely helpful, since, for the patient on steroids, a stressful situation that a person could usually take in their stride, such as a misunderstanding with a co-worker, spouse or shop assistant, becomes emotionally overwhelming and the patient’s response to the situation can be excessive. With practice, MBT would empower the patient to take control of these unpredictable emotions. By reducing their excessive and distressing responses to situations, the person would be better able to carry out their day-to-day activities without feeling controlled by stress and anxiety.  

In mindfulness-based stress-reduction, a structured programme combines mindfulness-based meditation with Hatha yoga. The yoga, which involves postures that are gentle and suitable for those with disabilities, has the added benefit of giving the person with physical illness some degree of control over their bodies. [vi]  

The techniques learnt in MBT would become part of everyday life and a peaceful state of mind, often lost through steroid-treatment, could be found. Reducing the frequency and impact of steroid-induced anxiety, mood-swings and irritability would leave the person better able to enjoy relationships with the people around them, better able to cope in a work environment and, of course, happier in themselves. Learning how to deal with stressors in life would positively impact on the patient’s wellbeing for, potentially, the rest of their life.    

The empowered patient  

A chronic disease, with all its concomitant treatment, hospital visits and investigations, can make a patient feel a loss of ownership over their body. Indeed, at times I have felt as if it is my kidneys, my eyes or my joints that are the patients in the hospital, rather than me, Fiona. Long-term corticosteroid treatment adds to this bewildering loss of control because of the systemic nature of its side-effects and the wide-ranging impact that they have. A feeling of a loss of control over your body can be damaging; when you feel detached from your body, it is all too easy to stop taking responsibility for it, feeling like efforts you make are futile and out of your hands anyway.  

Understanding the impact of their actions and making the decision to take control of their lifestyle can go a long way in repairing the fragmented relationship that the patient may have with their body and their mind. An integrated approach that teaches self-management and self-care develops a real sense of empowerment for the patient on long-term steroids: an empowerment that will continue to benefit them for years to come. I know that through taking an active role in the management of my condition I now understand, better than anybody, how my body and mind are affected by my lifestyle, my disease and my medication. This insight has helped to make me an equal partner in my healthcare since my opinions are valued and respected as being the expert judgement on my overall wellbeing. This is the approach that I will continue to develop for the rest of my life. An empowered patient is not to be underestimated; it is the empowered patient who makes clear choices in the way they live their life and who feels confident that they have some control over their future.  

 A final word  

The number of patients in the United Kingdom who require long-term corticosteroid treatment is likely to increase.[vii]  Without an integrated approach for these patients on long-term steroid therapy, they and their healthcare teams could have a lot of problems to deal with after ten years of continuous treatment; steroid-related muscle wastage, obesity, fractures of the wrists and vertebrae due to osteoporosis, chronic stress, anxiety, hypertension and glucose-intolerance are all realistic possibilities. In contrast, with an integrated approach that encourages self-management and is underpinned by support from experts in diet, exercise and mental-wellbeing, many of these problems could be lessened, if not altogether prev
ented. The impact of the treatment on the person’s life could be dramatically reduced.  

All in all, I truly believe that by following an integrated approach, the person on long-term systemic steroid treatment will be able to enjoy a more satisfying journey through healthcare and, most importantly, a happier journey through life.        References: 5   [i] Royal College of Physicians’ Glucocorticoid guidelines 2002, National Osteoporosis Society Accessed online 11.4.2010.

[ii] Lips P. Editorial: Prevention of corticosteroid induced osteoporosis. British Medical Journal 1999; 318:1366-1367

[iii] Simon GE. Treating depression in patients with chronic disease. Western Journal of Medicine 2001; 175(5): 292-293

[iv] NHS Choices. Health A-Z: Corticosteroids. . Accessed online 11.4.2010.

[v] Hofmann S, Sawyer A, Witt A and Oh D. The Effect of Mindfulness-Based Therapy on Anxiety and Depression: A Meta-Analytic Review J Consult Clin Psychol. 2010; 78(2): 169–183.

[vi] Praissman S. Mindfulness-based stress reduction: A literature review and clinician’s guide. Journal of the American Academy of Nurse Practitioners. 2008; 20(4): 212-216

[vii] Walsh LJ, Wong CA, Pringle M, Tattersfield AE. Use of oral corticosteroids in the community and the prevention of secondary osteoporosis: a cross sectional study. British Medical Journal. 1996; 313(7053): 344-346.