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Guideline Relapse Prevention Anorexia Nervosa

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Tamara Berends

Berno van Meijel

Annemarie van Elburg


Working with a relapse prevention plan to prevent or early detect relapse in patients with anorexia nervosa


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Index Practical Manual

Chapter 6 Early signalling and early intervention 3

Chapter 7 Working with the Relapse Prevention Workbook 5

STEP 1: The preparation 5

STEP 2: Filling in the Relapse Prevention Workbook 7

STEP 3: Filling in the Relapse Prevention Plan 12

STEP 4: Aftercare program 14


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6 Early signalling and early intervention

Two activities are central to working with the Relapse Prevention Workbook: early signalling and early intervention. These two activities are described briefly below.

1.1 Early signalling

Early signalling involves the detection of triggers and early signs. Triggers are factors, mainly in the patient’s immediate surroundings, which can trigger a relapse. Examples of a trigger might be eating out, comments from others about appearance, or loss of structure while on holiday. Also consider events/provocations from the patient’s past. Early signs are feelings, thoughts, behaviours and physical signals that precede a relapse into the eating disorder and therefore could serve as warning signs for relapse. Examples of an early sign might be eating less (throwing away food during the day), physical manifestations (having cold hands and feet), increase in exercising (taking a longer than normal bike route), negative thoughts (‘I’m not pretty enough’ or ‘Do other people think I’m attractive?’) and deterioration of social function (no longer seeing friends). 1.2 Early intervention (actions)

Early interventions are activities that can be carried out to prevent a threatening relapse. Relapse is when a recovered patient, or a patient in remission

relapses back into the disease with anorectic behaviour and thoughts. Actions specific to the severity of the relapse have to be carried out. The more severe the relapse is, the more support, effort and direction the patient will need from her social surroundings. The patient might have to consider things like making eating appointments with the network members. The degree of structure the patient needs from her social surroundings varies to prevent further relapse. Interventions are – depending on the nature and the severity of the relapse – focused on normalising and structuring the eating and exercise patterns, or normalising psychological and social functioning. Patients have to take their own responsibility for this, but the social surroundings can offer their support. The extent to which the patients themselves are able to carry out these actions is dependent on the severity of the relapse or threatening relapse. When patients find themselves at the start of the relapse process (Stage 2), they will be better able to carry out these actions successfully themselves than they would be at later stages. As the relapse risk gets larger (Stages 3 and 4) the patients will be more depending on the support of the people in their social surroundings (partner, family, friends and health professionals).

1.3 Stages of relapse

The figure below illustrates the principles of early signalling and early intervention. Triggers and early signs offer insight into the process of relapse. Patients can gain insight into their own triggers and early signs which is a way to better understand their own functioning.


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Figure 1: Relapse process

There are four stages in the process of relapse:

Stage 1: Stable: The patient has a healthy weight appropriate for her age and height. The patient functions well in her living environment. Eating-disorder thoughts might be present, but the patient does not act upon them.

Stage 2: Mild relapse: Eating-disorder thoughts increase and the first behaviours related to the eating disorder occur sporadically, for example, occasionally choosing ‘safe’ products or sometimes omitting a snack.

Stage 3: Moderate relapse: Eating-disorder thoughts predominate and, to an increasing degree, the patient regularly acts on these thoughts by expressing behaviours such as eating less, exercising more or by compensating through vomiting or using laxatives. These behaviours are visible, at least partially, to those in their social surroundings. There is observable weight loss.

Stage 4: Complete relapse: The patient has a weight loss below 85% of the normal weight and menstruation fails to occur. Eating-disorder thoughts predominate intensely and are continuously present. The patient withdraws contact from her social surroundings and exhibits compensating behaviour.


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7 Working with the Relapse Prevention Workbook

In this chapter the different steps are worked out to arrive at an individualised Relapse Prevention Plan together with the patient and their network members. Also the aftercare program is described.

STEP 1: The preparation

Practical preparation of the health professional

The health professional needs to be properly prepared before filling in the Relapse Prevention Workbook with the patient begins. It is important to explore the patient’s background and eating disorder. The information about the patient can be used to get an idea of the factors that could probably increase the risk of a relapse. You can use the following sources of information:

• the patient’s file, including her medical history, psychological examinations, family history and progress notes;;

• other health professionals who could provide information about the patient;; and • information directly from the patient and from significant others (family

members/partner/friends).

Practical preparation of the patient

First and foremost, you give the patient general information about relapse prevention and working with this guideline. Then give the patient the Relapse Prevention Workbook to read through. Give the patient the opportunity to ask questions about this preparation. It is then of major importance that the patients enlist the aid of network members (described in the next section) to assist with their relapse prevention program.

Network members

Patients with an eating disorder often tend to do things alone and have difficulty asking for help when they have relapsed or when relapse threatens to occur. In addition to this, network members are often not sufficiently aware of how they can best help the patient. Network members are people who can help the patient recognise a threatening relapse and possibly prevent it. These are people in the patient’s immediate social surroundings who can help her identify any early signs and react to them effectively. An important aspect of preparation is exploring with the patient which of the people in her life would be good candidates to fill the role of an network member, who can provide this necessary help. Recommend that she read through Part 1 “Network members” in the workbook, where she can find more information about this.


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We make a distinction between active and passive network members:

An active network member is someone from the patient’s immediate social surroundings whom she trusts to ask for support. The contact is bidirectional, in other words it is not only a relationship in which the patient asks the active network member for support when needed, but the active network member also has the task of addressing or confronting the patient when she is exhibiting an increase of eating-disorder behaviour and when a threatening relapse is apparent. A passive network member is someone whom the patient approaches when she feels it is necessary. This mainly happens when the patient takes the initiative. The following steps can be taken to recruit network members who can offer help when drawing up and carrying out the Relapse Prevention Plan.

• Have the patient make a list of people whom she trusts from her immediate social surroundings. Discuss these people’s possible roles regarding the prevention of relapse. Evaluate if these people can be active or passive network members. Write down the decisions in the workbook.

• Have the patient then contact the people who will be active network members and explain their role to them. The patient asks if they would like to take on the role of being an active network member. When someone agrees to do so, the patient can invite him or her to a preparation visit in which a more thorough explanation about relapse prevention and working with the Relapse Prevention Plan is discussed.

Preparation visit

It is important to consult with the patient and the people who will be active network members regarding what relapse prevention is and the specifics on how to work towards that prevention. Use the information from Part 1 of the guideline and properly coordinate the information such that the patient and the network members comprehend it. It is important to tell them that more insight can be gained about the relapse risks by working with the Relapse Prevention Plan. This insight increases the chance of effectively reacting to a threatening relapse by taking actions in a timely manner. Explain the principles of early signalling and early intervention using relevant examples. Have the patient and network members give examples of their own experience with triggers, early signs and helpful interventions. Reflect back together on the things that were learned during the treatment with regard to dealing with the eating disorder. These lessons can be included in the Relapse Prevention Plan.

Let them know that the motivation and active cooperation from the network members is an important condition for drawing up a Relapse Prevention Plan and for being able to work with it effectively in the aftercare program. Patients sometimes think it is very difficult to talk about their strong sides too. Addressing these strong sides are, however, crucial in the prevention of a relapse because the patient has to muster up these very strengths during this process. During this visit, discuss what the patient’s strong sides are with her and the network members.


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STEP 2: Filling in the Relapse Prevention Workbook

The Relapse Prevention Workbook comprises the following eight components which will eventually lead to a Relapse Prevention Plan.

(1) Network members (2) Strong sides (3) Risk factors (4) Comorbidity (5) Triggers (6) Early signs (7) Actions (8) Motivation (9) Relapse Prevention Plan

We will now go through parts of the workbook including tips and examples of how to work with the patient and the network members.

1) Network members

This section is discussed with the patient during preparation. Have the patient write down in the workbook the names of the network members divided into groups of active network members and passive network members.

2) Strong sides

The strong sides of the patient are discussed together with the network members during the preparation visit. Have the patient write these strong sides down in the workbook.

3) Risk factors

At this point you and the patient will inventory the existing relapse risk factors. Risk factors which have been derived from the literature on this subject are listed below. Have the patient describe the existing risk factors in the workbook. Describe each risk factor as detailed as possible in order to gain effective insight into the specific nature of each one.

POSSIBLE RELAPSE RISK FACTORS:

Ø Anorectic thoughts regarding weight and body at the time of discharge.

Ø Compulsive drive to exercise at the time of discharge.

Ø Longer duration of the illness/earlier treatment.

Ø Low psychosocial functioning. The following assumes that the patient does not know how to deal with psychosocial stress factors in their daily life.


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4) Comorbidity

Comorbidity is common in many patients. The most prevalent diagnoses are: neurotic disorders (including anxiety disorders and phobias), affective disorders, obsessive-compulsive disorders, substance addictions and not otherwise described personality disorders (including borderline personality disorders). Have the patient write down if there is any question of comorbidity and how these have affected her eating disorder.

5) Triggers

At this point you, the patient and the network members can explore any potential triggers. What are the specific causes that possibly induce or reinforce the relapse process? Take the following steps when inventorying triggers.

- Explain once again what “triggers” means precisely. Triggers are factors, usually in the patient’s surroundings, that trigger the eating-disorder behaviour and hence contribute to the risk of relapse. Illustrate this with a number of examples. People sometimes relapse into their eating disorder because:

• someone has made a comment about her appearance;; • daily structure falls away when on holiday;; and • someone in the patient’s social surroundings goes on a diet or relapses into

her own eating disorder. - Discuss with the patient which triggers could induce her to relapse. Have the patient look

back on any earlier relapses or reflect on what was happening when her eating disorder first started. Have the patient write down her own triggers in the workbook.

- Ask the patient to work with her network members in figuring out what potential triggers they can anticipate occurring in approximately the next six months. What potential changes or difficulties lie ahead in the patient’s life? An example of that could be a change in study or profession. Also have the patient imagine any possible positive events that could occur in the coming period, for example, falling in love. These situations can also be potential triggers for a relapse into the eating disorder. By looking ahead the patient can prepare for these situations. Have the patient write these findings down in the workbook.

A number of triggers are listed here below to help with this process.

POSSIBLE TRIGGERS (Bloks et al., 1999)

- Negative emotions - Failures - Positive emotions and achieved successes - Interpersonal conflict and relationship problems - Encouragement from others to diet/fast - Stressful working conditions/school situations - Holidays - Major life events such as death, relocation, change of study or profession, etc. - Shocking events - Weight gain - Imbalanced eating pattern or daily structure - Meetings with people the patient knew when she was underweight - Comments about weight or appearance - Financial problems


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Early signs

After inventorying the triggers explore with the patient which personal early signs apply to her. Take the following steps when inventorying early signs. - Explain once again what “early signs” means precisely. Early signs are feelings,

behaviours and physical signals that precede a relapse into the eating disorder and therefore could serve as warning signs for relapse.

- Discuss with the patient what her specific early signs of a relapse into her eating disorder are. It helps to have the patient think about when the eating disorder began in order to inventory early signs. Examples of an early sign might be eating less (“I throw food away at my job”), physical manifestations (“I have cold hands and feet”), increase in exercising (“I take a longer bike route than needed”), negative thoughts (“I’m not pretty enough” or “Do other people think I’m attractive?”) and deterioration of social function (“I no longer see my friends”). Complete the overview called “Early signs” in the Relapse Prevention Workbook.

- Have the patient take a week to think about when the eating disorder began and about any earlier relapses she may have had. Then have her inventory and write down the early signs. Give her the assignment to discuss this with her network members in order to get the most complete impression of the early signs possible. Also have the patient ask the network members which early signs they can describe from their perspective, for example: “As partner/mother/father/friend I’m going to check if the meal has actually been eaten”. The purpose of this is to make everyone aware of the thoughts, feelings, behaviours and physical signs that could potentially precede a relapse. Have the patient add this new information from this assignment to the overview “Early signs” in the Relapse Prevention Workbook.

- When all of the relevant early signs from the perspectives of the patient and the network members have been inventoried, it is important to categorise them under the different stages of relapse. Use the diagram in the workbook for this. For each category (see table below) have the patient inventory which early signs belong in which stage. A number of examples of early signs are listed here below.

Table 1: Possible early signs of relapse

POSSIBLE EARLY SIGNS OF A RELAPSE: Category

Examples

Eating pattern ü Choosing ‘safe’ products ü Regularly eating less than is needed ü Preoccupation with counting calories

Physical characteristics

ü Increase of physical characteristics of underweight ü Having less energy ü Cold hands and feet ü Dizziness

Exercise pattern ü Too much (unhealthy) exercise ü A distorted balance between activity and rest

Cognitions ü Increase of negative thoughts about food, body and weight ü Thinking more negatively about oneself

Social functioning ü Increase of complaints about eating with other people ü Quarrel with family/partner/housemate around eating ü Withdrawal from contact with friends


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7) Actions

You now have the patient establish which actions can be carried out when she is confronted with triggers or when early signs appear.

Actions by triggers:

In consultation with you and her network members have the patient think up the best way to deal with the triggers that she described earlier. What can she do herself instead of relapsing into the eating disorder? The patient might be able to avoid certain triggers or ask for help when confronted with certain triggers. Write these actions down in the Relapse Prevention Workbook.

Actions by early signs:

In consultation with you and the network members have the patient think of which actions are indicated when early signs occur. The following basic principles apply when formulating actions.

- Have the patient search for actions that she can carry out herself as a response to the early signs. Which actions have worked beforehand? And which actions could possibly be of value in the future?

- What can the people in the patient’s social surroundings – such as partner, family and friends – do when early signs occur? Examples of this might be to regularly carry out an activity together such as taking a walk outside to relax or to have a meal together. Actions can also be formulated for a stable situation (Stage 1) for the purpose of maintaining the balance reached.

- Have the patient ask her network members if they would like to make a list of actions that they can take when they see that there might be a threatening relapse for the patient. Actions can then also be formulated to maintain this stable phase.

- The more severe the relapse is, the more support, challenge and direction the patient will need from her social surroundings. An example of this is that the patient can make more appointments to eat with other people. The degree of structure that is offered to the patient from her social surroundings should also vary to prevent further relapse. Make sure the actions correspond with the degree of support and structure that the patient thinks she needs in order to be able to take her own responsibility regarding eating.

- Discuss with the patient what has to happen when she arrives at Stage 4 (complete relapse) of the Relapse Prevention Plan. Examine which issues need to be taken to stop the relapse and to promote recovery. These actions often lie in the focus area of eating and offering support from the social surroundings. The degree of support needed from the social surroundings will strongly increase as the relapse becomes more serious. A tighter structure will then be required. Examples of actions in this phase are: eating with other people, following nutrition advice, no longer exercising, and making contact with health professionals.

- Have the patient fill in the diagram in the workbook by writing down all of the actions she has come up with, and then categorise them in the each of the four stages. Have these actions correspond with the patient’s individual early signs. A number of general examples are listed here below.


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Table 2: Possible actions

STAGES:

POSSIBLE ACTIONS:

Stage 1 (Stable)

ü I weigh myself every two weeks ü Every two weeks I talk with my active network member about how

I am doing Stage 2 ü When I am hungry I make sure that I eat something

ü I stop varying my eating pattern ü I eat more when I am going to do extra activities ü If I am feeling melancholic I will go do something fun ü I do fun things with friends ü I contact one of my network members to talk about my eating-

disorder thoughts ü I tell my friends that I am having difficulty again with eating ü I hang my Relapse Prevention Plan on the refrigerator ü I hang my motivation list in view

Stage 3 ü I agree to eat with somebody else, also at the place where I study or work

ü I eat at regular times ü I use an eating checklist to oversee that I eat everything ü I weigh myself every week at my GP ü When I am cold I wear warmer clothing ü I regularly write in my diary in order to clear my mind of thoughts ü I make a set appointment with my network members to talk about

my eating-disorder thoughts Stage 4 (Complete relapse)

ü I follow-up on my nutrition advice ü I go to my GP weekly to get weighed ü I stop with physical exercises ü If necessary I stop with my study or work ü I contact my health professionals

8) Motivation

The patient has now mainly looked back on the difficult aspects that correspond with having an eating disorder. It is always important to continue working on the subject of motivation. Pleasant activities in everyday life are an important component in maintaining this motivation. Motivation setbacks are unavoidable, the real art of maintaining it is to constantly keep an eye on the positive things in life.

- Have the patient write down in the workbook the activities that she enjoys doing. You can ask if the patient would like to keep a photo album or makes a collage of these activities so that she can evoke memories about the positive things in life and also prompt her to engage in positive experiences when things are not going so well.


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STEP 3: Filling in the Relapse Prevention Plan

After the Relapse Prevention Workbook has been completely filled in, it can be converted into the Relapse Prevention Plan (see Appendix 1 in the Workbook). The Relapse Prevention Plan gives an overview of how a relapse develops from the moment that the patient is steady and stable to the moment when complete relapse has set in. Actions are taken that can contribute to preventing further relapse and to recovering the patient’s equilibrium. We use different stages of relapse in the Relapse Prevention Plan:

• Stage 1: The situation is calm and stable. There is no need for any specific interventions aimed at relapse of the eating disorder.

• Stage 2: The first destabilisations occur that indicate a potential relapse into the eating disorder.

• Stage 3: The patient is considerably destabilised and the risk for a relapse is seriously present.

• Stage 4: The symptoms of the eating disorder are prominently present. The relapse is, for all intents and purposes, a fact.

As the stages of relapse progress, the early signs increase in number and severity, which increases the need to take action to stop the relapse process.

Triggers

Start by having the patient write in the Relapse Prevention Plan the triggers that were inventoried earlier in the Relapse Prevention Workbook. Then have her fill in the inventoried actions that can be carried out when she is confronted with these triggers.

Early signs

Using the early signs already documented in the Relapse Prevention Workbook, have the patient fill in the first column in the Relapse Prevention Plan. This column has the heading “Early signs”. Make sure that while working out this scheme the early signs inventoried in the past are defined properly and that the Relapse Prevention Plan is clearly constructed from a stable situation (Stage 1), through Stages 2 and 3, to Stage 4, which is when there is a complete relapse. Describe the early signs in specific terms so that others can immediately understand what is meant. In other words, do not say something like: ‘I’m eating less’, but rather: ‘I no longer put butter on my sandwich’ or ‘I throw my sandwich away when at school/work’.

The following are some examples for each stage.

Stage 1: Stable

This is where the patient describes what her behaviour is when she is stable and calm. It is written in the first person “I”, succinct and specific so that the patient can recognise herself in it as much as possible. For example: ‘I eat enough during the day. I eat more when I do more activities. I can also add variety to what I eat. I do fun activities with my friends. My thoughts about eating, my body and my weight do not consume my day. I don’t complain about eating with other people’.


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Stage 4: Complete relapse

Have the patient describe the situation in which there is a complete relapse into the eating disorder. For example: ‘I feel insecure about my body and have to think about how much I eat throughout the day. I can no longer concentrate. I am losing weight. I count calories. I also withdraw from contacting my friends. I have to exercise again to burn calories. I no longer eat at set times, and don’t follow my nutrition advice very much’.

Now that the two extreme stages (1 and 4) are completed, the other two stages can be filled in. Stages 2 and 3 are where the early signs already described are present and gradually increase in quantity and/or severity. These are also the stage in which the preventative actions would render the most benefit.

Stage 2:

In this stage the early signs that signal a potential relapse into the eating disorder are visible. They are not yet very strong, but are clearly present incidentally. In this stage describe the thoughts, feelings, behaviours and physical signals in the patient that could be considered as early signs, for example, ‘The thoughts about eating increase. I sometimes do not snack when I should eat to reach my full energy intake. I do fun and exciting activities, but I don’t eat enough for them’.

Stage 3:

In this stage the early signs have progressed to the point that a relapse into the eating disorder is a great threat. Early signs becomes increasingly visible to the people around her. The amount of weight she loses increases. An example of this would be: ‘I have been eating less and I am losing weight. I am withdrawing more from contacting my friends. The thoughts in my mind make it difficult to concentrate on my work/homework. People around me are always checking to see if I’ve eaten’.

Actions When the stages of the early signs have been completed in the Relapse Prevention Plan, the actions can then be transferred from the workbook. Fill these actions in for each stage starting from Stage 1 through Stage 4. Stage 1 is the stable situation where you describe which actions are needed to maintain this stable situation. Then proceed to Stages 2 and 3 where the early signs increase in quantity and severity. Which actions can be carried out here to prevent relapse? Finally, fill in the actions by Stage 4, which is complete relapse that, for all intents and purposes, is a fact. What can happen at that moment to avert the crisis and to prevent the progression of relapse?


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STEP 4: Aftercare Program

Feedback with active network members

The execution phase of the Relapse Prevention Plan can begin once the workbook is completely filled in and the Relapse Prevention Plan has been established. Take the following steps to start.

- Invite at least one of the active network members for a visit. During this visit, have the patient tell how the Relapse Prevention Plan was constructed. Go through the different stages with early signs and actions.

It is necessary that the patient regularly sits down with her active network members to talk about how things are going. There is a good chance that the contact with active network members will dwindle if this does not happen. Asking for help will then become more difficult and avoidance becomes a lurking danger. Talk with the patient and her network members about the necessity to speak with each other often. Write these agreements up in the actions of Stage 1. To summarise, the patient and network members must make clear agreements about cooperating during the execution of the Relapse Prevention Plan. It is important to show the network members the ropes regarding the content of the Relapse Prevention Plan. One agenda item that should be included in these meetings with the active network members is to also mention the things that are going well and what the patient can be proud of. This promotes the patient’s motivation to continue working with the Relapse Prevention Plan.

- Together with the patient go through the agreements that will be made with regard to informing the potential passive network members. They too should be made aware of how the Relapse Prevention Plan works.

Dissemination

Discuss with the patient who should receive a copy of the Relapse Prevention Plan. In any case, at a minimum it should be the patient, the active network members and the passive network members. A copy of the Relapse Prevention Plan is placed in the patient’s file. It may also be important to disseminate the plan to others such as health professionals, for example those conducting the aftercare.

Anorexia follow-up procedure

The chance of relapse is the greatest for patients during the first two years after discharge. However, if the patient has not relapsed during the first 18 months, then the chance of a relapse falls to practically zero. Hence it is necessary to counsel the patient during this time and to effectively deal with any beginning relapse as soon as possible. Having an anorexia follow-up procedure is strongly recommended to accomplish this. The anorexia follow-up procedure comprises low frequent visits with the patient during at least 18 months.

During the aftercare-visits the condition of the patient is thoroughly monitored and discussed. Two scenarios can occur during these visits:

1) The patient is stable, in which case the focus is on maintaining this stable condition by promoting good physical health and optimal personal and social functioning. Actual or possible stressful life events in the near future are discussed and anticipated on.


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2) The patient shows one or more early signs of impending relapse, in which case the main focus during the visit is on obtaining a thorough understanding of the actual triggers of relapse, and how to deal with these in order to promote recovery. In this context specific arrangements are made and actions are planned, based on the content of the previously established relapse prevention plan (RPP).

The frequency of the aftercare visits depends on the patient’s condition and the need for treatment and care. For example, patients who are stable will come for a visit after four to six months. If the patient is less stable the visits can be planned every two months. The patient and the professional can decide to extend the aftercare period after 18 months in case of prolonged vulnerability to relapse, with a maximum of five years.

The visits last 45 minutes and are attended by both the patient and her network members. At each visit the patient is weighed and her condition is evaluated. During the visit, two main topics are discussed, i.e. psychological and social functioning (school, friends, sports, overall moods, etc.) and the presence of AN-symptoms (anorectic cognitions, abnormal eating habits, excessive exercise pattern et cetera). Based on this information, the RPP is updated if necessary. At the end of the visit a new appointment is made for the next visit. The patient’s record contains the following details of each visit: weight, possible stage of relapse, and the arrangements made during the visit.

Between the formal visits, a patient or her relatives can contact the professional at any time in case of need for help. When the 18 months have passed, an evaluation can take place after which the visits can stop if the situation is stable, or you can also agree to continue the sessions.

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