Lisa Kettler, M.App.Psych, Psychologist
INTRODUCTION
I am delighted to have this opportunity to write an article about treatment adherence in CF for CFW and would like to thank the Editor for her kind invitation. My background no doubt, influences the perspective presented in this article. I am a psychologist with 8 years of clinical experience and three years of doctoral research training. I have worked in diverse areas of psychological practice and had the great privilege to establish a psychology service in the adult CF center in South Australia before beginning my PhD studies. At present I am writing my doctoral thesis on the topic of adherence to treatment in adults with CF.
In this paper, I will discuss the experiences which motivated me to do research in this area, present you with a summary of the research which has been published in the scientific literature about treatment adherence among adults with CF, and also describe to you the research which I am currently undertaking. I will present some of my recent research findings and offer some thoughts about future directions for research in this area.
“…the way in which CF interfered in different aspects of their lives…”
There is no doubt that CF is a demanding disease, with enormous expectations of those with the condition for ongoing attention to health matters and treatment, combined with a certain social expectation to “get on with life as normal”. When I began working in a CF clinic, vitality and positive outlook were evident in most of the people with CF that I met. It soon became clear that while many people experienced distress because of their disease from time to time, it was the practical matters of day-to-day management, or of the way in which CF interfered in different aspects of their lives that brought people to seek psychological help most often. This observation is one which has been made by many clinicians working and writing about CF. I remain amazed, nevertheless, at the resourcefulness with which most people with CF tackle the daily round of self-care and treatment and find ways to balance those responsibilities with the pressures of everyday life.
Summary of Research about Adherence
“Adherence” has become something of a hot topic in CF in the last few years and there is now a growing body of scientific literature in which researchers have begun to explore this complex issue and understand the factors that influence the way people with CF manage their daily care. What exactly does “adherence” mean? Up until the mid 1990’s people tended to use the term “compliance” rather than adherence, and there was a fairly clear consensus that this meant an evaluation of how closely patients followed “doctors’ orders”. Around the mid 1990’s there was a shift in terminology to “adherence”, with the implication of “sticking” to treatments, reflecting an active decision process on the part of patients. The further implication of this change in terminology was that patients were presumed to be involved in making decisions about their health care regimen in the first place rather than simply told what they were to do. The definition of what adherence really means continues to vary somewhat from paper to paper and this poses some difficulties when trying to interpret research outcomes. Further, there remains no clear consensus about how much a person needs to do to be considered adherent to treatment1. After conducting research into this issue and working clinically with patients who carry a large burden of self-care responsibility, I personally think about adherence in terms of “co-ordinating care” or “keeping up” with treatments.
“…failure to maintain prescribed treatments can have serious consequences…”
There are some good reasons for health teams to care about and, in some instances, worry about the way the people in their care keep up with the demands of treatment. Research from many areas of medicine and health has demonstrated that failure to maintain prescribed treatments can have serious consequences such as more frequent and more substantial medical emergencies, the need for more potent and more expensive drugs, faster disease progression, and greater disability2. Nevertheless, there are often good reasons for the people prescribed treatment to adhere less than perfectly to many treatment recommendations. The treatments may be very time-consuming, difficult to perform, inherently unpleasant, or they may produce side effects or problems of their own. People may perceive that the treatment interferes with other important aspects of their daily life. Debate continues to rage hotly about how to weigh the relative importance of all of these factors and to find a tenable and ongoing balance between them.
Quite a large amount of research about adherence has been conducted with children who have CF and their families. The findings about adherence in children and adolescents are in many ways different to those in adults and will not be discussed further here, as the focus of this article is on adult behaviors.
We now understand some of the ways adults manage their CF treatment. Research findings indicate that there is little evidence that gender, age, financial status, the severity of disease or general knowledge about CF are related to how well a person adheres to their prescribed treatment course in CF3,4. It may be that evidence will emerge to support relationships between these and adherence in future. In particular, it has been postulated (but not yet properly investigated) that there might be a relationship between disease severity and adherence, in that people with moderate disease severity may adhere better to their treatments overall than people with mild or severe disease.
The argument is that people with mild disease may feel that they do not need their prescribed treatments, especially when they are well, while people with severe disease may either be too unwell to manage their treatments, or perceive little benefit when they do their treatments, therefore adhering less. The people in the middle may experience both a need and an obvious benefit from their treatments and be well enough to keep up with treatment.
“…adherence to long-term treatments is around 57%.”
There is evidence from self-report research showing that adults with CF generally adhere better to some parts of the usual treatment regimen than others. It has been reported that adherence to antibiotic treatments (oral or intravenous) is high, at 80—95%5 and moderate to high for nebulised medicines and pancreatic enzymes, at 65—80%. In contrast, adherence to vitamin therapy, dietary management, exercise regimens and physiotherapy or airway clearance is 40—55%3. With the exception of the last figure, which is of considerable concern to health care teams, adherence to treatments by adults with CF appears to be quite good when compared with summary information from the general medical literature about people with other chronic illnesses6. Those figures suggest that, on average, adherence to long-term treatments is around 57%. The reports of adherence in CF need to be interpreted cautiously, however, as they are derived from people’s recall of how often they did particular treatments, not from an independent, objective measure. It may also interest readers to know that doctors have been found to be very poor judges of how well their patients adhere to prescribed treatments7.
Efforts to understand the reasons for high or low levels of adherence have met with limited success. Worrying about CF has been found to be associated with better adherence to treatment, as has trust in the medical practitioners prescribing the treatment8. When 60 adults with CF in the U.K. were surveyed anonymously and asked to choose from a substantial list of reasons why they might not adhere to particular treatments from time to time, the most common reason endorsed for all the treatments reviewed was, “I simply forget”3. For a more substantial discussion of these issues, including some very important concerns about the measurement of adherence, readers are directed to two recent reviews devoted to the subject.9,1
My Research
As stated earlier, I would like to describe some of my own research examining adherence to treatment by adults with CF. In essence, my research interest is in the variability of adherence between treatments and what links there may be between treatment adherence and the beliefs and opinions that people hold about both their CF and its treatment. There is growing evidence from health psychology that health beliefs and, perceptions along with beliefs about medicines, can predict the way that people adhere to treatments for numerous chronic illnesses10,11. There are two components to this research, both of which are ongoing and, therefore, unpublished. This research has been presented at recent CF conferences12,13,14.
The first component is the development and validation of a new questionnaire measure for adults with CF, called the Cystic Fibrosis Perceptions Inventory (CFPI). This measure is designed to assist health teams to better understand the beliefs and opinions which people with CF hold about the disease and its treatment. Further, it is expected that information gathered from this measure will add considerably to understanding how and why people with CF adhere to, or fail to keep up with, different aspects of their treatment regimen.
Initial data from this measure highlighted once again that people with CF report different levels of adherence to different treatments. In my study of 39 adults with CF from South Australia, 74% of participants reported that they always took their enzymes, compared with 18% who reported that they always did their physiotherapy. For most treatments, the majority of participants reported that they mostly or sometimes adhered to the treatment as prescribed. Perhaps the most important outcome from this study was the finding that the importance that people ascribed to their different treatments was significantly related to how much they reported adhering to the treatment. This relationship was particularly strong for physiotherapy, enzymes, Pulmozyme and exercise.
“I need ‘time-out’ from my CF treatment routine from time to time”
More detailed examination of the data from the CFPI revealed the following relationships. A belief that the costs associated with treatment outweighed the benefits, was statistically related to poorer adherence to all treatments except for dietary management and Pulmozyme. An overall belief in the effectiveness of CF treatment and the importance of following treatment plans was related significantly to better adherence to physiotherapy, exercise, dietary management and Pulmozyme. Receiving information about decreased lung function, and factors (such as recent outpatient clinic visits or hospital admissions) appeared to have a positive relationship with adherence to physiotherapy, exercise regimens and Pulmozyme. Almost 54% of participants agreed or strongly agreed that “I need ‘time-out’ from my CF treatment routine from time to time”, while 49% of participants agreed or strongly agreed that “I will beat CF”. More than half of the respondents answered that they forget to do some of their treatment at times.
Since this initial study was completed, a study with a much larger group of participants has commenced, so that the CFPI can be fully validated. I am excited that this study will include adults with CF from both Australia and the United Kingdom as well as some adolescents from the United States of America.
The second component of my research tackles the very difficult problem of how to measure adherence in an objective and accurate way. Whilst self-report questionnaires like the CFPI, (as well as treatment diaries, pharmacy records, blood tests and counts of left over tablets) have been used to measure adherence, all of these methods are indirect measures of what people are doing, and prone to error and in some cases, intentional falsification.
“…it has become possible to use microchip recording devices in pill containers…”
In the past decade, it has become possible to use microchip recording devices in pill containers, inhalers and nebulisers, to keep track of the way in which people are using their medication dispensers. Provided that people are aware that their behavior is being monitored and have given their consent, this form of measurement can be a simple, ethical and comparatively non-invasive way of keeping track of people’s treatment behaviors with a significant improvement in accuracy over the other methods described. It has been demonstrated15 that being monitored only changes people’s normal medication taking behavior for approximately one day. Electronic monitoring is a particularly attractive option, as the participants involved are not required to do anything except to use their medication in the way that they usually would. This form of measurement can be very expensive and has its own limitations16,1, but has begun to prove itself to be a valuable tool in research of this kind.
In this study I am using electronic monitoring as described above to gather information about the way that 50 adults with CF manage once daily vitamin tablets and nebulised Pulmozyme (see Figure 1).
|
Figure 1. Electronic Monitoring Equipment: on the left is the tablet container, with monitoring device built into the bottom. On the right is a standard nebuliser pump with a “black box” electronic monitor at the back. |
|
|
Figure 2. Average number of days on which each participant took their Pulmozyme and average number of days on which each participant took their vitamins. |
|
This information is then used in conjunction with the CFPI to examine more closely the links between treatment and health perceptions and the way that the participants have adhered to the two treatments over 3 months. These two treatments have been chosen for several reasons. Both are usually prescribed to be taken once per day, and dose changes are generally infrequent, making them comparable for measurement and a stable component of treatment over a long period. They were also chosen based on the outcome of the first study which indicated that they were perceived as having different levels of importance and reported to be adhered to differently. The technology was also available to measure both tablet taking and nebulised medications using electronic monitors.
To date, 23 men and women, aged 19 to 48 years, have completed this study, displaying a wide variability in pulmonary function. Preliminary results indicate that on average participants took their vitamin therapy on 42% of days (range 3—100%) and took their Pulmozyme on 78% of days (range 0—100%). (See Figure 2)
Overall, participants rated Pulmozyme as more important than vitamin therapy to their ongoing health. There was also a moderate association between participants’ reports of the importance of Pulmozyme to their ongoing health, and the percentage of days in the 3 months on which they took their Pulmozyme. This relationship did not hold true for vitamin therapy.
“…it seems increasingly likely that most people keep up better with some treatments than others.”
This study, to my knowledge, is the first to be conducted using electronic monitoring to measure adherence to more than one treatment at a time in adults with CF. It has allowed us to demonstrate a significant difference in adherence (at least in this group of PWCF) between treatments and may help to dispel the perception that some people are adherent while others are not. Certainly, there may always be some people who are remarkably good at keeping up with all their treatments and others who are not. However it seems increasingly likely that most people keep up better with some treatments than others and may also keep up better at some times than others. I look forward to exploring these questions further.
What Next?
There is so much research that still needs to be done to improve understanding in this area. One obvious need is to be able to understand how people change their treatment behavior over time. Three months is only long enough for us to get a glimpse of how people manage treatments over time. Other needs include examinations of the way that treatment plans are negotiated between health teams and adults with CF and what information or assistance is given to patients in different clinics about how to perform and prioritize treatments. Optimal treatment will always need to be determined on an individual basis, and there are always new treatments being introduced to assist in treating CF. I believe that it will be valuable to investigate the impact that the introduction of additional or different treatments into an existing treatment regimen has on adherence to existing treatments.
CONCLUSION
I would like to finish on a light note. Recently, I asked the audience for their participation during a conference presentation about my research. At the start of the presentation, all the people who had consulted with a medical practitioner in the past year were asked to stand up. Unsurprisingly, most people in the room stood. I then asked those who were prescribed a treatment to remain standing—most remained standing. Lastly, all who could say with honesty that they had adhered perfectly to the prescribed treatment were asked to remain standing—most rather sheepishly sat down!
“…collaborative and effective process between people with CF and their health care teams.”
It was fascinating to observe how quickly the audience of practitioners concerned about how to “convince their patients to do all their treatments” became aware of the difficulty of the task they had set both for themselves and for their patients. Be heartened! People are fallible and can do only their best on any given day. I believe there are great hopes that as mutual understanding improves, the treatment of CF will become an increasingly collaborative and effective process between people with CF and their health care teams. I am very much looking forward to the journey.
Lisa Kettler
Psychologist
Department of Psychology
University of Adelaide
South Australia 5005
Australia
Email: lisa.kettler @ psychology.adelaide.edu.au
Fax: +61 (08) 8303 3770
Acknowledgements: Associate Professor Helen Winefield, Dr. Hugh Greville, Associate Professors Susan Sawyer and John Wilson, Professors Janice Abbott and Alexandra Quittner, and Roche Pharmaceuticals for their funding assistance.
Editor’s Note: When addressing the topic of adherence it is important to give full acknowledgment to those of us who live with CF and often struggle with achieving a balance between a good quality of life and doing all that is prescribed.
This article focused on adherence to treatment in adults with CF. For information about adherence to treatment in families who have a child with CF, readers may find it helpful to begin by exploring any of the many recent research papers on the subject. Suggested authors are: Professor Alexandra Quittner from the University of Florida, or (for an anthropological perspective) Dr. Myra Bluebond-Langner. For assistance locating this research please contact us: editor @ cfww.org
