A simple method to enable patient-tailored treatment and to motivate the patient to change behaviour

Self-management and motivation to change behaviour

Chronic obstructive pulmonary disease (COPD) is a common, preventable and treatable disease, is characterized by persistent airway limitation that is usually progressive and is associated with an enhanced inflammatory response in the airways and the lung to noxious particles or gasses. ¹ Exacerbations and comorbidities contribute to disease severity in individual patients. Patients with COPD not only have physiological disorders but also may experience symptoms, functional impairment, and a diminished quality of life. Many studies have shown that the severity of symptoms, functional impairment, and quality of life are poorly related to the severity of the physiological disorder. ^{2 –4} These three domains are determined not only by disease activity but also by the degree to which the patient has adequately adapted to his illness. Examples of adequate adaptation are adherence to medication regimens, exacerbation management, adopting a healthy life style (regular exercise, dietary intake, smoking cessation), energy-saving strategies, breathing regulation, stress management, and so on. It is imperative to note that all these aspects of adaptation to the illness require behaviour change by the patient. ⁵ Even the typical physiological goals such as increasing physical fitness require structural behaviour change by the patient. For example, if a patient has improved his or her physical fitness in an 8-week training program, then goes home and returns to a sedentary life style, his or her physical fitness will decrease very quickly. Mrs Smith obviously shows poor adaptation with respect to regular exercise and smoking. However, as we will see later, she showed other and more prominent aspects of poor adaptation, which resulted in severe impairments in her health status.

Many interventions have been designed to teach the patient adequate self-management in order to achieve optimal adaptation to the disease. However, many patients like Mrs Smith are unwilling to participate in such programmes in the first place ^6,7 and the effectiveness of these programmes is disappointing. ⁸ Thus, motivating patients to change their behaviour or to enrol in a self-management intervention programme appears to be difficult. In fact, poor motivation sometimes is considered a key characteristic of patients with COPD. ⁹ Caregivers often experience the process of achieving adequate self-management in patients with COPD as difficult and frustrating due to the fact that patients are very unwilling to change their behaviour. In daily practice, it occurs that the caregiver ‘gives up’ on the patient.

However, high motivation to change behaviour is not a trait of a patient but is the end result of a process within that patient. Therefore, increasing motivation should be one of the first steps to take in any intervention. When looking more closely at the content of self-management interventions, specific interventions to achieve high motivation are often lacking. ¹⁰ Moreover, many caregivers by nature are ‘problem solvers’. This attitude of the caregiver may be an important reason why we as caregivers do not take the time to question whether the patient agrees with us on the problems we see and the solution we offer. To put it bluntly, in daily practice it is common that the caregiver tells the patient he or she has COPD and therefore he or she has to quit smoking, start regular exercise and change his or her dietary habits. The patient very often does not accept these goals and most certainly does not change his or her behaviour. So how can this be explained?

Let us first look at the fundamentals of motivation to change behaviour. The key issue for motivation to change behaviour is ‘what will be the benefit of this behaviour for me?’ In COPD, the desired adaptive behaviours mean that the patient has to give up behaviours that have a positive value for him or her (e.g. smoking) and has to adopt behaviours that are very unattractive to him (e.g. regular exercise). So, apprehending the personal benefits of the new behaviours (which is the prerequisite for motivation to behaviour change) for most patients is a long way to go.

The grieving process and motivation to change behaviour

As the disease progresses, patients are increasingly confronted with many experiences of loss (e.g. health, independence, work, hobbies, and social activities). This triggers a process of mourning, which initially is characterized by denial or trivialization of complaints, followed by resistance, sadness and eventually acceptance. COPD is a progressive disease that starts very mildly and evolves slowly. Complaints or impairments then for many years can be attributed to ‘normal’ causes, such as age or being in a bad physical condition, can be ignored or trivialized. This typically is the situation in the stage of denial. In the stage of resistance patients are fully aware of the seriousness of their problems in health status but are frustrated that they cannot continue many normal activities and increasingly have to give up activities or hobbies. These patients struggle to maintain their activities and therefore do not change behaviour to achieve optimal adaptation to the disease. The stage of sorrow is characterized by sadness and passivity. Acceptance, in fact, is the end stage of the grieving process in which the patient has given up denial, resistance, and sadness. In reality, of course, these stages are not clear cut but may overlap in time. Also, the time in which a certain stage is predominant may be very different for each patient. Especially the stage of denial can take many years and may be a cause why the patient does not visit his general practitioner in the first place. As losses occur over the years the grieving process the patient may experience multiplies. In Table 1 an overview is presented of the different stages and their related core cognitions (key thoughts), emotions and behaviours.

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Table 1.

Stages of the grieving process in COPD and related core cognitions (disease-related ideas/attitudes), emotions and behaviours

Stage	Core cognition	Emotion	Behaviour
Denial	‘I have no problem’	Neutral	No adaptive behaviours
Resistance	‘I want my normal life back’	Frustration	No adaptive behaviours, even maladaptive behaviours
Sorrow	‘All is hopeless’	Sadness, despair	Passive, no adaptive behaviours
Acceptance	‘If I adapt to my disease I will have less symptoms and better quality of life’	Neutral	Performing adaptive behaviours

The grieving process may complicate the motivation process. Patients in denial do not experience any problem (whether or not there is a problem) and therefore are not willing to adopt any unattractive new behaviours. Patients who predominantly are in the stage of resistance want to reinstall their normal activities. Patients who predominantly are sad mainly are passive, as they see no hope in any improvement.

Increasing motivation to change behaviour: motivational interviewing

From two psychotherapeutical main streams (client-centred therapy and cognitive-behavioural therapy), techniques can be derived, which are effective in increasing motivation to change behaviour. One of these is motivational interviewing. ¹¹ In its essence motivational interviewing attempts to increase a person’s awareness of the potential problems of his or her actual behaviour and to change his or her thinking of this behaviour to ultimately consider what might be gained through change (creating a discrepancy between what you are and what you want to be). In COPD this often means that the patient has to become aware of the severity of his or her disease, of his or her problems in health status, and the negative effects of his or her maladaptive behaviours. Motivational interviewing originally was developed to treat substance abuse but also has been found promising to increase health behaviours in chronic diseases. ^12,13 There are few studies on motivational interviewing in COPD, mostly related to smoking cessation.

Motivational interviewing requires specific skills of the caregiver. First of all, the caregiver has to express empathy, which means that the caregiver can express to the patient that he or she can see the world through the patient’s eyes in a nonjudgmental way. Expressing empathy is crucial as the patient feels understood, which has the effect that the patient will be more open to explore his or her behaviour and consider alternative behaviours. The caregiver does not fight resistance, but “rolls with it,” because challenging resistance increases resistance. The patient is responsible for choosing his or her behaviour, the caregiver supports the patient in this respect. The main goals of motivational interviewing are to establish an active interaction between the patient and caregiver, establish a discrepancy between his or her actual behaviour and his or her desired behaviour, elicit ‘change talk’, and to achieve commitment from the patient.

The techniques by which this can be achieved depend on the attitude of the caregiver: motivation is elicited from the patient, not imposed upon by the caregiver; it is the patient’s task to change behaviour, not the caregiver’s; persuasion is not effective to change behaviour, although the caregiver should be directive in guiding the patient to examine and resolve the discrepancy between his present behaviour and alternative adaptive behaviour. The caregiver thus operates as a coach.

Assessment issues

The case of Mrs Smith certainly is not an exception. Many patients experience problems in health status but are poorly motivated to adopt adequate health behaviours or to enrol in self-management programs, such as pulmonary rehabilitation programs. However, the root of the problem not only lies in the patient, professionals also play a significant part in this.

The phenomena ‘patient delay’ and ‘doctor delay’ are well-known causes of underdiagnosis in COPD. The same phenomena are to a major part responsible for underdiagnosis of problems with respect to complaints, functional impairment, quality of life, and self-management. The doctor underestimates these problems (doctor delay) and the patient does not present these problems or is not motivated to adopt adequate health behaviours resulting in poor adaptation to the illness (patient delay). The phenomena doctor delay and patient delay may leave problems in symptoms, functional impairment, quality of life, and poor self-management unidentified and untreated. In many patients this may lead to escalation of these problems. Mrs Smith is clearly at least at risk in this respect.

Doctors are by their profession primarily focused on the physiological disorders. In addition, complaints, functional impairment, and quality of life are highly subjective phenomena and are therefore very difficult to evaluate during a routine visit. In the case of Mrs Smith, the doctor revealed airway obstruction and underweight. Besides fatigue, no problems in other complaints, functional impairment, or quality of life became apparent.

With respect to patient delay, the grieving process and motivational factors play a crucial role. Mrs Smith was not motivated to adopt adequate health behaviours (smoking cessation and regular exercise), was not motivated to engage in a pulmonary rehabilitation program, and did not report any problems besides fatigue. What her specific impairments in health status were, and why she was not motivated we will find out later in this article.

The Nijmegen clinical screening instrument (NCSI) method

To summarize thus far, assessment and treatment should focus not only on the physiological disorders but also on symptoms, functional impairment, quality of life, and adequate adaptation (i.e. self-management). In clinical practice problems in these domains often are not identified by the caregiver and the patient does not present these problems or is not motivated to deal with these problems. Moreover, patients may be very different in the type and severity of problems they may experience. But even if a patient has adopted adequate adaptive behaviours, at some point in time these adaptive behaviours may fade away or may not be adequate anymore. The latter situation may be caused by disease progression or life events such as a partner who needs support, a divorce, and so on. Such new problems should be identified as early as possible. Therefore, a patient has to be monitored for the rest of his life. Thus, what we need in clinical practice on the level of the individual patient is:

an instrument suitable for use in clinical practice that helps to identify problems in health status and poor adaptation/self-management;

The NCSI method in usual care: Mrs Smith revisited

The pulmonologist referred Mrs Smith to the pulmonary nurse with the question to analyse her situation and to motivate her to quit smoking. The anamnesis by the pulmonary nurse provided additional information. Mrs Smith was married, with two adult children. She worked three mornings and one whole day as a housecleaner. She found her work tiring, but in general she did not experience functional impairments in her daily life. Because of her work she was too tired to do any sports activities. She was very explicit in her refusal to quit smoking. When asked, Mrs Smith indicated not to have any goal in reference to her disease.

The NCSI method: assessment

The personal PatientProfileChart of Mrs Smith is presented in Figure 1. The ‘•’ represent her scores. Inspection of the PatientProfileChart reveals the following. Main domain Physiological Functioning: airflow limitation between 50% and 60% of predicted and underweight. Main domain Complaints: extreme fatigue and severe dyspnoea severity, dyspnoea burden, and dyspnoeic when physically active. She is not anxious when dyspnoeic, but her frustration level is at the verge of ‘severe’. Main domain functional impairment: there are no behavioural impairments with respect to activities at home or when walking. On the subjective level she experiences mild impairments. Main domain quality of life: she is not depressed, but her satisfaction with life in general is severely disturbed. She is dissatisfied with her physical functioning but has confidence in the future and is satisfied with her social functioning. The grieving profile on the ADIQ is remarkable; high levels of denial, even higher levels of resistance, a moderate level of sadness and a low level of accepting her illness.

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Figure 1.

PatientProfileChart of Mrs Smith. The green score range indicates ‘normal functioning’, the yellow score range indicates ‘mild problems’, and the red score range indicates ‘severe problems’. n.a.:not available; dysp.: dyspnoea; subj.: subjective; accep:  acceptance; •: pretreatment scores; X: posttreatment scores.

Regular screening of patients: NCSI monitor

Although the NCSI enables a quick assessment of health status, still it takes 15–20 min to increase quality and efficiency in clinical care and to help nonpsychologists to make a correct interpretation of the PPC, we developed an instrument that makes this conclusion automatically.

Analyses identified 8 items of the NCSI which together predicted through a mathematical formula whether or not a patient would show a deviant profile on the PatientProfileChart or not. In 91% of cases this formula correctly predicted the diagnosis of the psychologists. Sensitivity was 0.91 and specificity was 0.94. This 8-item instrument was called NCSI monitor.

Note that NCSI monitor is not a short version of the NCSI. The 8-item NCSI monitor only predicts whether a patient would have a deviant profile on the NCSI or not. What these problems are and what the causes of these problems are can only be elucidated by the NCSI instrument and the NCSI intervention. This instrument thus would be an ideal monitoring instrument. It enables a very quick and automated prediction of a patient at risk.

Comparison to other health status instruments and self-management interventions

When comparing the NCSI assessment instrument to other commonly used health status instruments important differences can be noted. The NCSI measures much more aspects of health status (Figure 1) than any other instrument. The St George’s Respiratory Questionnaire (SGRQ) ¹⁹ contains three subscales but was shown to measure only two distinct aspects of health status. ²⁰ The Clinical COPD Questionnaire (CCQ) ²¹ at best measures three aspects and the COPD Assessment Test (CAT) ²² only measures one aspect. The latter two instruments are shorter though. In addition, the NCSI is web-based, allowing completion of the questionnaire at home, has clinical meaningful scores based on normative data, and the scores and norms are presented automatically by the graphical PatientProfileChart, which makes interpretation of results very easy for the caregiver and for the patient.

Despite the strong qualities of the NCSI assessment, the NCSI method also contains an integrated intervention, which is by far more important than the assessment instrument by its own. The NCSI intervention helps to formulate individualised treatment goals and it motivates the patient to adhere to these goals and change his or her behaviour. Self-management programs in general educate the patient how to cope with COPD to achieve adequate self-management and thereby primarily are directed at the treatment goals. Specific interventions directed at increasing motivation to adhere to these goals and dealing with denial and resistance commonly are lacking. The NCSI method and motivational interviewing are alike with respect to the basic principles and communication techniques in achieving individualised treatment goals and increasing motivation to adhere to these goals. Motivational interviewing, however, heavily relies on the skills and expertise of the caregiver. In the NCSI intervention, the PatientProfileChart, and the structured way to discuss the PatientProfileChart provide much more guidance and structure to the caregiver. The PatientProfileChart provides a very simple but powerful tool for the caregiver to deal with denial and resistance. The latter two aspects explain why the NCSI method requires fewer sessions than motivational interviewing as a technique by itself. The NCSI method is only applicable in the stage of formulating treatment goals and increasing motivation of the patient. The subsequent treatment itself, that is executing the treatment goals, is out of the range of the NCSI method. Although the PatientProfileChart can be used in the treatment phase to maintain motivation, in this phase motivational interviewing and other behaviour change techniques are required.