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A Comprehensive Approach to Anorexia Nervosa
A Comprehensive Approach to Anorexia Nervosa WALTER R. ANYAN, JR., M.D.,
AND
JOHN E. SCHOWALTER, M.D.
One hundred fifty-four patients (137 female and 17 male) diagnosed by Feighner criteria as having anorexia nervosa were treated at the Yale-New Haven Hospital outpatient and/or inpatient services for adolescents. The physiologic, psychologic and social criteria used for recommending inpatient treatment are outlined. The inpatient treatment approach is described in detail. Typical patients’ responses to the early, middle and late phases of treatment are given as are the outcome statistics. Medical complications of treatment are summarized, and it is noted in this group that young patients with primary amenorrhea did relatively poorly. Journal of the American Academy of Child Psychiatry, 22,2:122-127,1983.
2. The patient’s negatiuism, with regard to having a problem and needing treatment for it, was determined. Patients who cannot acknowledge any possibility that they have a problem or who appear indifferent to care are often difficult to manage as outpatients. 3. The patient’s opinion regarding the site in which she would be able to get better, home or hospital, was noted. Though a patient is likely to indicate a preference for ambulatory care, her reasons offer a valuable perspective on her view of her own ability to cope with the problem, as well as a view of family-related issues that might help or interfere with progress. When patients say they need to be in the hospital, they are usually correct. In addition to these patient items, three items were appraised in evaluating the family: 1. The presence of marital discord was noted, and an attempt was made to determine its severity. When marital discord exists, treatment is apt to be more complicated: the parents’ needs may compete with those of the patient, and there is a greater likelihood of an unhealthy coalition between one of the parents and the patient. 2. The parents’ realization that care is necessary and their ability to unite in support of her receiving care were estimated. When parents express a belief that the patient will recover without help, they may mean to allow her to deteriorate until her physical condition demands hospital care. 3. The degree to which parents were angry toward the patient, and therefore might strongly desire hospitalization for her, or anxious about the precariousness of her physical or emotional status was also sought. When either or both of these affects is present and cannot be relieved promptly, it can have a detrimental effect on ambulatory care. Some of the data obtained during patients’ evaluations are shown in table 1. For the entire patient
In this paper, we describe: (1) the characteristics documented during the evaluation of 154 patients and their families referred for workup of anorexia nervosa and employed in deciding whether hospital care was to be recommended; (2) our construction of ambulatory and in-patient treatment regimens; and 3) some of the noteworthy responses to the care given.
Patients and the Diagnosis of Anorexia Nervosa On referral, 137 female and 17 male patients were evaluated in the Adolescent Clinic of the Yale-New Haven Medical Center. Their ages ranged from 9 to 28 years. The diagnostic criteria of Feighner et al. (1972) were followed and, as patients were assessed, special emphasis was placed on three items: 1. The patient’s physical condition was evaluated through calculation of a weight score (Anyan, 1974), obtained by multiplying the patient’s weight by 100 and dividing the product by her expected lean body mass as derived according to Forbes (1972). Experience has shown that at weight scores of 85-90, or less, most patients notice increasing fatigue, weakness, and sleep disturbance, and symptoms and signs of functional hypothyroidism become more apparent. The latter include sensitivity to cold, infrequent bowel movements, muscle cramps, as well as bradycardia, hypothermia, hypotension, a variety of skin changes, and delay in the relaxation phase of the ankle jerks. Since weight loss usually does not cease immediately on hospitalization, and intervention should occur before weight reaches a dangerously low level, we use this range of weight scores as indicating a need for inpatient care. Dr. Anyan is Professor of Pediatrics at the Yale University School of Medicine. Reprints may be requested from him at the Department of Pediatrics, 333 Cedar St., New Haven, CT 06510. Dr. Schowalter is Professor of Pediatrics and Psychiatry at the Yale University School of Medicine. 0002-7138/83/2202-0122 $02.00/0. Copyright 01983 by the American Academy of Child Psychiatry. 122
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COMPREHENSIVE APPROACH TO ANOREXIA NERVOSA
TABLE 1 Age, Weight Score (WS), Percent Body Fat (BF) in Patients with Anorexia Nervosa at the Time when Weight Loss Began and at Evaluation (Mean f S.E.M.) At Evaluation
Onset of Weight Loss Group 124 girls with amenorrhea 13 girls without amenorrhea 17 bovs
Age
ws
BF (56)
Age
ws
14.56 f 0.21 16.17 f 0.79 13.33 f 0.63
131.15 rt 1.64 154.0 f 13.79 131.35 f 3.62
24 35 24
15.73 f 0.26 18.31 +- 1.29 14.08 f 0.65
96.86 +- 1.07 114.38 +- 4.13 94.71 +- 3.03
population the female to male ratio was slightly more than 8:l. While most patients fit the criteria for the diagnosis of anorexia nervosa, 13 girls who did not have amenorrhea when evaluated were placed in a separate group. Most of these patients had bulimia and in spite of a 26% weight loss, still had appreciable body fat. Of interest, the boys were more overweight than either group of girls at the onset of weight loss and they lost about 27% of their weight prior to being evaluated. Once the diagnosis was established and given to the patient and her family, the general goals of treatment were outlined. As much as possible, they were related to specific data obtained during the evaluation. Usually the most important reason for the patient’s evaluation was her weight loss, and one of the goals consisted of her re-attaining the minimum amount of weight that would allow her to be in normal physical condition, as determined principally by her weight score. In addition, she would be expected to be able to relinquish her anorectic position and re-establish normal adolescent emotional and behavioral patterns. Another goal, often difficult for the family to appreciate at the time, involved realigning family relationships that may have contributed to, or resulted from, the development of anorexia nervosa.
Selecting a Site for Care In our system, patients and families were offered a choice between ambulatory care in the Adolescent Clinic and inpatient care on the Adolescent Division. The latter is a 21-bed, multidisciplinary, acute-stay facility that is part of the Pediatric Service. Patients and families were also encouraged to explore other treatment options before making a decision. The choice between ambulatory and inpatient care was presented as follows. In ambulatory care the patient would be seen by one staff member, either a pediatrician or a pediatric nurse practitioner, while her parents were seen by another. The clinicians would collaborate in providing treatment that would focus on the needs of each segment of the family and would mandate some changes in the patient’s activity and privileges, to be spelled out in a short protocol. The patient would continue to live at home and, usually,
attend school. Weekly visits would be indicated until the patient and the family had achieved most of the goals, including the patient’s gaining the requisite amount of weight; then, visits would become less frequent. It was anticipated that as progress was made in separate work with the patient and her parents it would becolhe possible and desirable for the staff, patient, and family members to meet occasionally as a group to discuss issues of mutual interest. Hospital care would separate patient and parents for some time, transfer parental responsibility for providing structure to the staff, and provide the patient with more intensive therapy and less time for other activities. Discussion of the choice emphasized that the staff wished to interrupt the patient’s life as little as possible, but that changes would be indicated to the extent that they were necessary to remove or reduce distractions that interfere with improvement. Patients who chose ambulatory care were told that continuation of treatment on that basis would be allowed as long as their weight scores remained at or above 85. A lower score would dictate in-patient care. Families who had witnessed many months of starvation and behavioral change in their daughters often assumed or hoped that hospital care would quickly and easily correct the disorder; we told them that much work had to be done, that improvement was seldom rapid, and that force feeding was not used. They learned that we did not wish to hospitalize anyone who was a reasonable candidate for ambulatory care, nor did we wish to engage in a hopelessly frustrating attempt to treat as an outpatient someone who needed hospital care. To this last point were applied the six specific patient and family findings from the evaluation. While only one characteristic might determine a recommendation for admission, more often the decision was based on consideration of all factors. The patient and the family were encouraged to take an active part in the decision, and except in those instances where the staff did not consider ambulatory care to be possible, their requests were usually followed. Some differences can be seen when patients who selected ambulatory care are compared with those who needed or chose inpatient care. In making these
WALTER R. ANYAN, JR., AND JOHN E. SCHOWALTER
124
comparisons, patients with primary amenorrhea are separated from girls who had reached menarche and then became secondarily amenorrheic. As shown in table 2, girls with primary amenorrhea were younger at the onset of weight loss and at evaluation than those with secondary amenorrhea. While mean weight at onset of the illness was similar both for girls who were hospitalized and who were cared for as outpatients, weight at evaluation was lower in those who were hospitalized. Patients with primary amenorrhea were much more likely to need hospital care than those with secondary amenorrhea. Among boys, no difference in age at onset or at evaluation was noted between those hospitalized and those seen as outpatients. However, those boys who required hospital care tended to have lower weight scores at the onset of illness as well as at evaluation. Only 1 patient from the group of 13 girls without amenorrhea was hospitalized; she began to lose weight at 17.5 years and her weight scores at onset and evaluation were 127 and 97 (her menstrual function had been supported by use of oral contraceptive pills and ceased following evaluation).
The Inpatient Program The anorectic patient is admitted to the Adolescent Division as promptly as possible after a decision for inpatient care is made. Because anorectic patients require enormous investment of staff energy and time, only one is usually admitted at a time. Consequently, 17 of the 59 hospitalized patients were referred to psychiatric inpatient services for care. During the first few days, the patient and her family are seen by staff who will be involved, the patient has an opportunity to familiarize herself with the division, and a treatment program is designed and presented for discussion. The steff most involved in the anorectic’s care include the child psychiatry fellow, the pediatrician, the social worker, and the patient’s primary nurse. Information gathered during these first days in the hospital provides the staff some measure of how active the patient
is, how much and how fast she eats, how much insight and ambivalence the patient has about her anorexia, how she and her family interact, and how she engages other patients. Discharge weight is set as the minimum weight for her age that is likely to allow her to have both normal physical condition and function. The weight is calculated to give her a body composition of 16% body fat, based on a weight score of 119; boys’ goals are set to achieve a 10% body fat composition, using a weight score of 111. Plans for treatment fall into two categories: therapeutic interactions between the staff, the patient, and her family; and a protocol that describes, in relation to her weight, what activities the patient can undertake. Typical of the former are an arrangement regarding the frequency with which the patient will be seen by the pediatrician and child psychiatrist; the amount of involvement of the pediatric residents and medical students regarding general health coverage; the family’s work with the social worker; and the provision of a primary nurse for the patient. This plan keeps to a few the number of clinicians who are involved in treatment, permits clinicians to work closely together, and reduces the chances that patient or family manipulation of the system will succeed. The pediatrician provides overall medical supervision, enforces the patient’s protocol, and gives information about nutrition. The child psychiatrist provides psychotherapy to the patient several times a week, and participates in family therapy. The social worker focuses on providing couple and family therapy. The patient’s nurse provides regular care but does not become involved in discussing the patient’s illness or possible solutions to it. The patient is encouraged to refer these aspects of care to the child psychiatrist. Staff members who do not have a specific role in patient care refrain from any involvement with the patient. The protocol maps the patient’s activities from the beginning of treatment until discharge. As it provides a concrete plan for the entire treatment process, the
TABLE 2 Age, Weight Score (WS), and Percent Body Fat (BF) in Anorectic Patients Treated as Ambulatory Patients or as Inpatients Onset of Weight Loss Group
Primary Amenorrhea Hospitalized Ambulatory Secondary amenorrhea Hospitalized Ambulatory Boys Hospitalized Ambulatory
N
At Evaluation
Age
ws
BF (%)
Age
ws
20 14
11.92 f 0.37 1b.11 k 0.60
120.35 k 4.62 121.00 & 2.86
17 17
12.78 k 0.46 14.84 f 0.71
89.40 f 1.93 94.21 f 2.36
32 58
14.82 f 0.36 15.42 f 0.26
135.59 k 3.50 134.88 f 2.08
26 26
15.88 +- 0.44 16.88 f 0.33
93.91 f 1.89 101.71 k 1.62
6 11
13.17 k 1.27 13.43 zk 0.74
125.67 & 5.41 134.45 f 4.64
20 25
14.01 f 1.30 14.11 +- 0.76
87.17 f 6.09 98.82 f 2.77
COMPREHENSIVE APPROACH TO ANOREXIA NERVOSA
protocol removes distractions that might interfere with the patient’s giving her full attention to the problem and reduces the amount of negotiation over details of treatment. To emphasize the need to conserve energy, only basal activity-customarily complete bed rest with bathroom privileges-is permitted at the weight at which the patient starts treatment, and full, regular activity is re-attained at discharge. The “ladder” of privileges between these points has steps that are 1%of initial body weight, rounded to the nearer 100 g. A set of ground rules is established for the protocol, and they include a description of the patient’s room and activity at the start of treatment. She has a single bedroom, door open, mirror covered, window curtains open; no telephone, television, radio, clock, decorative items, reading material (inclusive of school work), paper, writing implements, games, personal clothes or visitors. The patient chooses her food one day in advance from the standard hospital menu: she can order double servings at meals and can have reasonable between-meal snacks as available on the division. She cannot keep food in her room and cannot have food from outside the hospital. She chooses foods and she has her meals by herself in the amount of time allowed all other patients. Because she will spend all day in bed and is suffering from extensive subcutaneous fat losses and muscle wasting, air mattresses are given to patients on admission. Steps on the protocol cover return of activity, privileges, possessions, and resumption of contact with the family. Finally, they provide for transition from inpatient to outpatient status. Activity is restored gradually, with increases in time out of bed, out of room, and eventually out of hospital; addition of privileges include use of TV, telephone, arts and crafts materials, as well as school work and return of possessions include her own pajamas, clothing, decorative items, teddy bears, etc. Contact with the family is resumed beginning with the family therapy sessions. Receipt of mail, sending mail, gaining telephone privileges, having visitors, and taking passes out of hospital (usually home) with the family follow. During the time the patient has no contact with her family, one staff member arranges to talk with the family to convey general information about her condition and weight, but does not transmit messages. At the start of treatment, the patient may lose certain privileges if her weight falls below its starting level: as an example, a 500-g initial loss might result in her window curtains being closed, 1000-g in loss of bathroom privileges, and 1500-g in having her door closed. Once she advances from the basal step, remaining at a step for 2 days after reaching it results in the patient losing one step’s privileges-to be returned fully when she makes progress again.
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The protocol for ambulatory patients usually has fewer, but larger, steps that accommodate weight changes likely to occur during 1 week. The steps set conditions for general, specific, and special activities and privileges.
Responses to Care As we have observed them, the responses to this treatment system occur during three phases. During the first, ambivalence is high and the extent of the problem is minimized. The second begins when the patient recognizes the need to solve the problem and takes action that is visible as weight gain. The third phase begins as the patient approaches her weight goal and begins to shift toward maintaining her weight and resuming full activity outside the hospital. The length of hospital stay ranged from 4 to 31 weeks with a median of 8 weeks. As she approaches the start of treatment, the patient may fear the separation from her family. As treatment begins, the added isolation and inactivity often are very stressful. In the first phase, the patient continues to postpone making real changes that would increase her weight and frequently tests the integrity of the system by attempting to set one staff member’s comments against another’s, by checking whether rules can be broken or bent, by sequestering food or other contraband in her room, and by prevailing upon other patients or their parents to believe that she is being victimized and/or to carry out missions on her behalf. She may suggest that something must be wrong with the food because she eats so much and gains so little, or protest that, since she has tried so hard and not succeeded in gaining, it is not worthwhile trying anymore. Because of the protocol, her parents cannot directly influence her during this phase, and this fact forces her to deal with the problem without them. However, it is common for patients to agonize over their menus, repeatedly circling and erasing, and to try to persuade the staff to tell them what foods to choose. During most of this first phase, patients will insist that they want to go home, but do not act to realize that wish. During the period before the patient progresses very far on the protocol, but after the parents have realized she is no longer their sole responsibility, parents may experience enormous frustration over the lack of tangible progress in relation to the length of the hospital stay. While this exasperation may result in their expressing anger at the staff, they also often get some satisfaction from the realization that she does not seem to be doing any better in the hospital than she did at home. It is usually at this time that the family is able to drop their concern as to whether they have made the right decision about treatment and to begin
126
WALTER R. ANYAN, JR., A N D JOHN E . SCHOWALTER
to forge a working relationship with the social worker and to increase their motivation to work on solving problems. Parents may also spend time during this phase writing letters to the patient (although they know she will not receive them until she reaches the mail step on her protocol), reading about anorexia, and talking with others who have had the same problem. Meanwhile, the staff has to be extremely patient. If the patient’s weight does not budge, the temptation, especially for novices, to change her protocol or the weight goal may be enormous and must be resisted. An inexperienced staff often wonders if such a patient and family are too great a challenge. Eventually, however, simultaneous work with patient and parents will bring the problems into focus, and the patient will begin to relinquish her self-imposed starvation and gain weight. Responses during the second phase tend to be positive ones, reflecting everyone’s feeling of accomplishment in dealing with the problem. The patient’s mood usually brightens as she rebuilds herself, while the parents change their interactional patterns to accommodate the adolescent’s developmental needs, to regain their status as parents, and to strengthen or clarify marital roles. As the patient’s privileges increase, she and the family are reunited and her interactions with family and with other patients can be observed and discussed. By this time, the staff usually finds treatment moving more easily and discharge planning becomes a focus of attention. The third phase brings new surprises. The patient may slow down or reverse her progress. The patient may delay passes home which have been earned, and when home visits do materialize, they are often tense or stormy. The patient often resists the need to give attention to the ways in which she can resume relationships with her peers and re-enter school as she attains outpatient status. The parents, having contained themselves earlier, may now express anger a t the staff, ambivalence about the patient coming home, or undue optimism about the extent to which the problem has been solved. Although some families are eager to terminate care once the patient is ready for discharge, most appreciate the need to continue treatment, and follow up is usually arranged with the same staff. The patient is seen once a week each by the pediatrician, by the child psychiatrist, and in family therapy under the guidance of the social worker and child psychiatrist. The interval between visits lengthens as goals are achieved, and visits usually cease in 6-12 months.
Outcome Among the 82 ambulatory anorectic patients, 6 made only one visit and did not complete their eval-
uations or start on any treatment. Eight others, who made two or more visits, were noncompliant with ambulatory care. At least 2 of the 8 are known to have required hospitalization subsequently. The other 68 patients received care weekly for 3-4 months in most cases, and then less often as they made progress and reached their goals. Most had follow-up appointments during the year after they completed treatment, and many were seen for several years thereafter: they succeeded in maintaining weight. Of the 42 patients hospitalized on the Adolescent Division, none was transferred to a psychiatric setting during the first admission nor lost to immediate followup, and 10 were rehospitalized. In an illness in which abnormally low weight and risk of death were major reasons for treatment, some comment is due on medical complications encountered and about patients who were unable to maintain weight at or above their goals. Medical complications included metabolic alkalosis, hypokalemia and hypoglycemia. Three patients who had particularly restricted their fluid intake during weight loss developed symptomatic nephrolithiasis. Rapid refeeding often produced dependent edema and occasionally resulted in hyperthermia, hypertension and tachycardia. One of these patients experienced severe pancreatitis which required major medical intervention (Gryboski et al., 1980).One patient suffered reversible cardiopulmonary arrest from a small dose of parenterally administered phenothiazine, and one patient with a childhood history of aplastic anemia developed a pneumococcal infection and died of a recurrence of aplastic anemia with generalized sepsis. Finally, 11 hospitalized patients were unable to maintain weight a t or near their goals. Of these, 9 required a second hospitalization. The other 2 patients needed intensive attention within their follow-ups as outpatients. These data are shown in table 3. It is
TABLE 3 Age at Onset and Weight Scores (WS) at Onset and at - Evaluation of Patients Who Lost Weight during Follow-up Ageat WSat WSat Group Onset Onset Evaluation Primary amenorrhea 11.8 103 91 Primary amenorrhea 10.3 97 78 170 82 Primary amenorrhea 12.6 Primary amenorrhea 15.5 109 84 Primary amenorrhea 10.4 101 79 Primary amenorrhea 10.8 122 103 Secondary amenorrhea 18.3 129 103 Secondary amenorrhea 12.3 123 93 Secondary amenorrhea 14.2 141 94 Secondary amenorrhea 15.0 111 86 Boys 10.0 125 97
COMPREHENSIVE APPROACH TO ANOREXIA NERVOSA
apparent that young patients with primary amenorrhea were less likely than Older Ones with secondary amenorrhea to be able to maintain weight. and it is of interest that 4 of the patients with primary amenorrhea and Of those with secondary amenorrhea had very low weight - scores Drior to the onset of weight loss. One patient, from the group without amenorrhea, required re-hospitdization for other psychiatric problems.
127
References ANYAN,W. R. (1974), Changes in erythrocyte sedimentation rate and fibrinogen during anorexia nervosa. J.Pediat.. 85:525-527. " FEIGHNER,J. P., ROBINS,E., GUZE, S. B., WOODRUFF,R. A,, WINOKUR,G. & MUNOZ,R. (1972), Diagnostic criteria for use in Dsvchiatric research, Arch. Gen. Psychiat,. 26:57-63, FO'R~ES.G. B. (1972). Relation of fean body mass to height in children and adolescents. J.Pediat. Res., 6:32-37. GRYBOSKI, J., HILLEMEIER, C., KOCOSHIS, S., ANYAN,W. & SEASHORE, J. (1980). Refeeding pancreatitis in malnourishedchildren. J.Pediat., 97:441-443.
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ANNOUNCEMENT May 9 and 10, 1983, The Hyman Caplan Memorial Conference: Current Concepts and New Perspectives in Child Psychiatry, Chateau Laurier Hotel, Ottawa, Ontario, sponsored by the Royal Ottawa Hospital and Department of Psychiatry, University of Ottawa. For information contact: J. H. Beitchman, M.D., Royal Ottawa Hosital, 1145 Carling Avenue, Ottawa, Ontario, K1Z 7K4, telephone 613-722-6521.
AND
JOHN E. SCHOWALTER, M.D.
One hundred fifty-four patients (137 female and 17 male) diagnosed by Feighner criteria as having anorexia nervosa were treated at the Yale-New Haven Hospital outpatient and/or inpatient services for adolescents. The physiologic, psychologic and social criteria used for recommending inpatient treatment are outlined. The inpatient treatment approach is described in detail. Typical patients’ responses to the early, middle and late phases of treatment are given as are the outcome statistics. Medical complications of treatment are summarized, and it is noted in this group that young patients with primary amenorrhea did relatively poorly. Journal of the American Academy of Child Psychiatry, 22,2:122-127,1983.
2. The patient’s negatiuism, with regard to having a problem and needing treatment for it, was determined. Patients who cannot acknowledge any possibility that they have a problem or who appear indifferent to care are often difficult to manage as outpatients. 3. The patient’s opinion regarding the site in which she would be able to get better, home or hospital, was noted. Though a patient is likely to indicate a preference for ambulatory care, her reasons offer a valuable perspective on her view of her own ability to cope with the problem, as well as a view of family-related issues that might help or interfere with progress. When patients say they need to be in the hospital, they are usually correct. In addition to these patient items, three items were appraised in evaluating the family: 1. The presence of marital discord was noted, and an attempt was made to determine its severity. When marital discord exists, treatment is apt to be more complicated: the parents’ needs may compete with those of the patient, and there is a greater likelihood of an unhealthy coalition between one of the parents and the patient. 2. The parents’ realization that care is necessary and their ability to unite in support of her receiving care were estimated. When parents express a belief that the patient will recover without help, they may mean to allow her to deteriorate until her physical condition demands hospital care. 3. The degree to which parents were angry toward the patient, and therefore might strongly desire hospitalization for her, or anxious about the precariousness of her physical or emotional status was also sought. When either or both of these affects is present and cannot be relieved promptly, it can have a detrimental effect on ambulatory care. Some of the data obtained during patients’ evaluations are shown in table 1. For the entire patient
In this paper, we describe: (1) the characteristics documented during the evaluation of 154 patients and their families referred for workup of anorexia nervosa and employed in deciding whether hospital care was to be recommended; (2) our construction of ambulatory and in-patient treatment regimens; and 3) some of the noteworthy responses to the care given.
Patients and the Diagnosis of Anorexia Nervosa On referral, 137 female and 17 male patients were evaluated in the Adolescent Clinic of the Yale-New Haven Medical Center. Their ages ranged from 9 to 28 years. The diagnostic criteria of Feighner et al. (1972) were followed and, as patients were assessed, special emphasis was placed on three items: 1. The patient’s physical condition was evaluated through calculation of a weight score (Anyan, 1974), obtained by multiplying the patient’s weight by 100 and dividing the product by her expected lean body mass as derived according to Forbes (1972). Experience has shown that at weight scores of 85-90, or less, most patients notice increasing fatigue, weakness, and sleep disturbance, and symptoms and signs of functional hypothyroidism become more apparent. The latter include sensitivity to cold, infrequent bowel movements, muscle cramps, as well as bradycardia, hypothermia, hypotension, a variety of skin changes, and delay in the relaxation phase of the ankle jerks. Since weight loss usually does not cease immediately on hospitalization, and intervention should occur before weight reaches a dangerously low level, we use this range of weight scores as indicating a need for inpatient care. Dr. Anyan is Professor of Pediatrics at the Yale University School of Medicine. Reprints may be requested from him at the Department of Pediatrics, 333 Cedar St., New Haven, CT 06510. Dr. Schowalter is Professor of Pediatrics and Psychiatry at the Yale University School of Medicine. 0002-7138/83/2202-0122 $02.00/0. Copyright 01983 by the American Academy of Child Psychiatry. 122
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COMPREHENSIVE APPROACH TO ANOREXIA NERVOSA
TABLE 1 Age, Weight Score (WS), Percent Body Fat (BF) in Patients with Anorexia Nervosa at the Time when Weight Loss Began and at Evaluation (Mean f S.E.M.) At Evaluation
Onset of Weight Loss Group 124 girls with amenorrhea 13 girls without amenorrhea 17 bovs
Age
ws
BF (56)
Age
ws
14.56 f 0.21 16.17 f 0.79 13.33 f 0.63
131.15 rt 1.64 154.0 f 13.79 131.35 f 3.62
24 35 24
15.73 f 0.26 18.31 +- 1.29 14.08 f 0.65
96.86 +- 1.07 114.38 +- 4.13 94.71 +- 3.03
population the female to male ratio was slightly more than 8:l. While most patients fit the criteria for the diagnosis of anorexia nervosa, 13 girls who did not have amenorrhea when evaluated were placed in a separate group. Most of these patients had bulimia and in spite of a 26% weight loss, still had appreciable body fat. Of interest, the boys were more overweight than either group of girls at the onset of weight loss and they lost about 27% of their weight prior to being evaluated. Once the diagnosis was established and given to the patient and her family, the general goals of treatment were outlined. As much as possible, they were related to specific data obtained during the evaluation. Usually the most important reason for the patient’s evaluation was her weight loss, and one of the goals consisted of her re-attaining the minimum amount of weight that would allow her to be in normal physical condition, as determined principally by her weight score. In addition, she would be expected to be able to relinquish her anorectic position and re-establish normal adolescent emotional and behavioral patterns. Another goal, often difficult for the family to appreciate at the time, involved realigning family relationships that may have contributed to, or resulted from, the development of anorexia nervosa.
Selecting a Site for Care In our system, patients and families were offered a choice between ambulatory care in the Adolescent Clinic and inpatient care on the Adolescent Division. The latter is a 21-bed, multidisciplinary, acute-stay facility that is part of the Pediatric Service. Patients and families were also encouraged to explore other treatment options before making a decision. The choice between ambulatory and inpatient care was presented as follows. In ambulatory care the patient would be seen by one staff member, either a pediatrician or a pediatric nurse practitioner, while her parents were seen by another. The clinicians would collaborate in providing treatment that would focus on the needs of each segment of the family and would mandate some changes in the patient’s activity and privileges, to be spelled out in a short protocol. The patient would continue to live at home and, usually,
attend school. Weekly visits would be indicated until the patient and the family had achieved most of the goals, including the patient’s gaining the requisite amount of weight; then, visits would become less frequent. It was anticipated that as progress was made in separate work with the patient and her parents it would becolhe possible and desirable for the staff, patient, and family members to meet occasionally as a group to discuss issues of mutual interest. Hospital care would separate patient and parents for some time, transfer parental responsibility for providing structure to the staff, and provide the patient with more intensive therapy and less time for other activities. Discussion of the choice emphasized that the staff wished to interrupt the patient’s life as little as possible, but that changes would be indicated to the extent that they were necessary to remove or reduce distractions that interfere with improvement. Patients who chose ambulatory care were told that continuation of treatment on that basis would be allowed as long as their weight scores remained at or above 85. A lower score would dictate in-patient care. Families who had witnessed many months of starvation and behavioral change in their daughters often assumed or hoped that hospital care would quickly and easily correct the disorder; we told them that much work had to be done, that improvement was seldom rapid, and that force feeding was not used. They learned that we did not wish to hospitalize anyone who was a reasonable candidate for ambulatory care, nor did we wish to engage in a hopelessly frustrating attempt to treat as an outpatient someone who needed hospital care. To this last point were applied the six specific patient and family findings from the evaluation. While only one characteristic might determine a recommendation for admission, more often the decision was based on consideration of all factors. The patient and the family were encouraged to take an active part in the decision, and except in those instances where the staff did not consider ambulatory care to be possible, their requests were usually followed. Some differences can be seen when patients who selected ambulatory care are compared with those who needed or chose inpatient care. In making these
WALTER R. ANYAN, JR., AND JOHN E. SCHOWALTER
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comparisons, patients with primary amenorrhea are separated from girls who had reached menarche and then became secondarily amenorrheic. As shown in table 2, girls with primary amenorrhea were younger at the onset of weight loss and at evaluation than those with secondary amenorrhea. While mean weight at onset of the illness was similar both for girls who were hospitalized and who were cared for as outpatients, weight at evaluation was lower in those who were hospitalized. Patients with primary amenorrhea were much more likely to need hospital care than those with secondary amenorrhea. Among boys, no difference in age at onset or at evaluation was noted between those hospitalized and those seen as outpatients. However, those boys who required hospital care tended to have lower weight scores at the onset of illness as well as at evaluation. Only 1 patient from the group of 13 girls without amenorrhea was hospitalized; she began to lose weight at 17.5 years and her weight scores at onset and evaluation were 127 and 97 (her menstrual function had been supported by use of oral contraceptive pills and ceased following evaluation).
The Inpatient Program The anorectic patient is admitted to the Adolescent Division as promptly as possible after a decision for inpatient care is made. Because anorectic patients require enormous investment of staff energy and time, only one is usually admitted at a time. Consequently, 17 of the 59 hospitalized patients were referred to psychiatric inpatient services for care. During the first few days, the patient and her family are seen by staff who will be involved, the patient has an opportunity to familiarize herself with the division, and a treatment program is designed and presented for discussion. The steff most involved in the anorectic’s care include the child psychiatry fellow, the pediatrician, the social worker, and the patient’s primary nurse. Information gathered during these first days in the hospital provides the staff some measure of how active the patient
is, how much and how fast she eats, how much insight and ambivalence the patient has about her anorexia, how she and her family interact, and how she engages other patients. Discharge weight is set as the minimum weight for her age that is likely to allow her to have both normal physical condition and function. The weight is calculated to give her a body composition of 16% body fat, based on a weight score of 119; boys’ goals are set to achieve a 10% body fat composition, using a weight score of 111. Plans for treatment fall into two categories: therapeutic interactions between the staff, the patient, and her family; and a protocol that describes, in relation to her weight, what activities the patient can undertake. Typical of the former are an arrangement regarding the frequency with which the patient will be seen by the pediatrician and child psychiatrist; the amount of involvement of the pediatric residents and medical students regarding general health coverage; the family’s work with the social worker; and the provision of a primary nurse for the patient. This plan keeps to a few the number of clinicians who are involved in treatment, permits clinicians to work closely together, and reduces the chances that patient or family manipulation of the system will succeed. The pediatrician provides overall medical supervision, enforces the patient’s protocol, and gives information about nutrition. The child psychiatrist provides psychotherapy to the patient several times a week, and participates in family therapy. The social worker focuses on providing couple and family therapy. The patient’s nurse provides regular care but does not become involved in discussing the patient’s illness or possible solutions to it. The patient is encouraged to refer these aspects of care to the child psychiatrist. Staff members who do not have a specific role in patient care refrain from any involvement with the patient. The protocol maps the patient’s activities from the beginning of treatment until discharge. As it provides a concrete plan for the entire treatment process, the
TABLE 2 Age, Weight Score (WS), and Percent Body Fat (BF) in Anorectic Patients Treated as Ambulatory Patients or as Inpatients Onset of Weight Loss Group
Primary Amenorrhea Hospitalized Ambulatory Secondary amenorrhea Hospitalized Ambulatory Boys Hospitalized Ambulatory
N
At Evaluation
Age
ws
BF (%)
Age
ws
20 14
11.92 f 0.37 1b.11 k 0.60
120.35 k 4.62 121.00 & 2.86
17 17
12.78 k 0.46 14.84 f 0.71
89.40 f 1.93 94.21 f 2.36
32 58
14.82 f 0.36 15.42 f 0.26
135.59 k 3.50 134.88 f 2.08
26 26
15.88 +- 0.44 16.88 f 0.33
93.91 f 1.89 101.71 k 1.62
6 11
13.17 k 1.27 13.43 zk 0.74
125.67 & 5.41 134.45 f 4.64
20 25
14.01 f 1.30 14.11 +- 0.76
87.17 f 6.09 98.82 f 2.77
COMPREHENSIVE APPROACH TO ANOREXIA NERVOSA
protocol removes distractions that might interfere with the patient’s giving her full attention to the problem and reduces the amount of negotiation over details of treatment. To emphasize the need to conserve energy, only basal activity-customarily complete bed rest with bathroom privileges-is permitted at the weight at which the patient starts treatment, and full, regular activity is re-attained at discharge. The “ladder” of privileges between these points has steps that are 1%of initial body weight, rounded to the nearer 100 g. A set of ground rules is established for the protocol, and they include a description of the patient’s room and activity at the start of treatment. She has a single bedroom, door open, mirror covered, window curtains open; no telephone, television, radio, clock, decorative items, reading material (inclusive of school work), paper, writing implements, games, personal clothes or visitors. The patient chooses her food one day in advance from the standard hospital menu: she can order double servings at meals and can have reasonable between-meal snacks as available on the division. She cannot keep food in her room and cannot have food from outside the hospital. She chooses foods and she has her meals by herself in the amount of time allowed all other patients. Because she will spend all day in bed and is suffering from extensive subcutaneous fat losses and muscle wasting, air mattresses are given to patients on admission. Steps on the protocol cover return of activity, privileges, possessions, and resumption of contact with the family. Finally, they provide for transition from inpatient to outpatient status. Activity is restored gradually, with increases in time out of bed, out of room, and eventually out of hospital; addition of privileges include use of TV, telephone, arts and crafts materials, as well as school work and return of possessions include her own pajamas, clothing, decorative items, teddy bears, etc. Contact with the family is resumed beginning with the family therapy sessions. Receipt of mail, sending mail, gaining telephone privileges, having visitors, and taking passes out of hospital (usually home) with the family follow. During the time the patient has no contact with her family, one staff member arranges to talk with the family to convey general information about her condition and weight, but does not transmit messages. At the start of treatment, the patient may lose certain privileges if her weight falls below its starting level: as an example, a 500-g initial loss might result in her window curtains being closed, 1000-g in loss of bathroom privileges, and 1500-g in having her door closed. Once she advances from the basal step, remaining at a step for 2 days after reaching it results in the patient losing one step’s privileges-to be returned fully when she makes progress again.
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The protocol for ambulatory patients usually has fewer, but larger, steps that accommodate weight changes likely to occur during 1 week. The steps set conditions for general, specific, and special activities and privileges.
Responses to Care As we have observed them, the responses to this treatment system occur during three phases. During the first, ambivalence is high and the extent of the problem is minimized. The second begins when the patient recognizes the need to solve the problem and takes action that is visible as weight gain. The third phase begins as the patient approaches her weight goal and begins to shift toward maintaining her weight and resuming full activity outside the hospital. The length of hospital stay ranged from 4 to 31 weeks with a median of 8 weeks. As she approaches the start of treatment, the patient may fear the separation from her family. As treatment begins, the added isolation and inactivity often are very stressful. In the first phase, the patient continues to postpone making real changes that would increase her weight and frequently tests the integrity of the system by attempting to set one staff member’s comments against another’s, by checking whether rules can be broken or bent, by sequestering food or other contraband in her room, and by prevailing upon other patients or their parents to believe that she is being victimized and/or to carry out missions on her behalf. She may suggest that something must be wrong with the food because she eats so much and gains so little, or protest that, since she has tried so hard and not succeeded in gaining, it is not worthwhile trying anymore. Because of the protocol, her parents cannot directly influence her during this phase, and this fact forces her to deal with the problem without them. However, it is common for patients to agonize over their menus, repeatedly circling and erasing, and to try to persuade the staff to tell them what foods to choose. During most of this first phase, patients will insist that they want to go home, but do not act to realize that wish. During the period before the patient progresses very far on the protocol, but after the parents have realized she is no longer their sole responsibility, parents may experience enormous frustration over the lack of tangible progress in relation to the length of the hospital stay. While this exasperation may result in their expressing anger at the staff, they also often get some satisfaction from the realization that she does not seem to be doing any better in the hospital than she did at home. It is usually at this time that the family is able to drop their concern as to whether they have made the right decision about treatment and to begin
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WALTER R. ANYAN, JR., A N D JOHN E . SCHOWALTER
to forge a working relationship with the social worker and to increase their motivation to work on solving problems. Parents may also spend time during this phase writing letters to the patient (although they know she will not receive them until she reaches the mail step on her protocol), reading about anorexia, and talking with others who have had the same problem. Meanwhile, the staff has to be extremely patient. If the patient’s weight does not budge, the temptation, especially for novices, to change her protocol or the weight goal may be enormous and must be resisted. An inexperienced staff often wonders if such a patient and family are too great a challenge. Eventually, however, simultaneous work with patient and parents will bring the problems into focus, and the patient will begin to relinquish her self-imposed starvation and gain weight. Responses during the second phase tend to be positive ones, reflecting everyone’s feeling of accomplishment in dealing with the problem. The patient’s mood usually brightens as she rebuilds herself, while the parents change their interactional patterns to accommodate the adolescent’s developmental needs, to regain their status as parents, and to strengthen or clarify marital roles. As the patient’s privileges increase, she and the family are reunited and her interactions with family and with other patients can be observed and discussed. By this time, the staff usually finds treatment moving more easily and discharge planning becomes a focus of attention. The third phase brings new surprises. The patient may slow down or reverse her progress. The patient may delay passes home which have been earned, and when home visits do materialize, they are often tense or stormy. The patient often resists the need to give attention to the ways in which she can resume relationships with her peers and re-enter school as she attains outpatient status. The parents, having contained themselves earlier, may now express anger a t the staff, ambivalence about the patient coming home, or undue optimism about the extent to which the problem has been solved. Although some families are eager to terminate care once the patient is ready for discharge, most appreciate the need to continue treatment, and follow up is usually arranged with the same staff. The patient is seen once a week each by the pediatrician, by the child psychiatrist, and in family therapy under the guidance of the social worker and child psychiatrist. The interval between visits lengthens as goals are achieved, and visits usually cease in 6-12 months.
Outcome Among the 82 ambulatory anorectic patients, 6 made only one visit and did not complete their eval-
uations or start on any treatment. Eight others, who made two or more visits, were noncompliant with ambulatory care. At least 2 of the 8 are known to have required hospitalization subsequently. The other 68 patients received care weekly for 3-4 months in most cases, and then less often as they made progress and reached their goals. Most had follow-up appointments during the year after they completed treatment, and many were seen for several years thereafter: they succeeded in maintaining weight. Of the 42 patients hospitalized on the Adolescent Division, none was transferred to a psychiatric setting during the first admission nor lost to immediate followup, and 10 were rehospitalized. In an illness in which abnormally low weight and risk of death were major reasons for treatment, some comment is due on medical complications encountered and about patients who were unable to maintain weight at or above their goals. Medical complications included metabolic alkalosis, hypokalemia and hypoglycemia. Three patients who had particularly restricted their fluid intake during weight loss developed symptomatic nephrolithiasis. Rapid refeeding often produced dependent edema and occasionally resulted in hyperthermia, hypertension and tachycardia. One of these patients experienced severe pancreatitis which required major medical intervention (Gryboski et al., 1980).One patient suffered reversible cardiopulmonary arrest from a small dose of parenterally administered phenothiazine, and one patient with a childhood history of aplastic anemia developed a pneumococcal infection and died of a recurrence of aplastic anemia with generalized sepsis. Finally, 11 hospitalized patients were unable to maintain weight a t or near their goals. Of these, 9 required a second hospitalization. The other 2 patients needed intensive attention within their follow-ups as outpatients. These data are shown in table 3. It is
TABLE 3 Age at Onset and Weight Scores (WS) at Onset and at - Evaluation of Patients Who Lost Weight during Follow-up Ageat WSat WSat Group Onset Onset Evaluation Primary amenorrhea 11.8 103 91 Primary amenorrhea 10.3 97 78 170 82 Primary amenorrhea 12.6 Primary amenorrhea 15.5 109 84 Primary amenorrhea 10.4 101 79 Primary amenorrhea 10.8 122 103 Secondary amenorrhea 18.3 129 103 Secondary amenorrhea 12.3 123 93 Secondary amenorrhea 14.2 141 94 Secondary amenorrhea 15.0 111 86 Boys 10.0 125 97
COMPREHENSIVE APPROACH TO ANOREXIA NERVOSA
apparent that young patients with primary amenorrhea were less likely than Older Ones with secondary amenorrhea to be able to maintain weight. and it is of interest that 4 of the patients with primary amenorrhea and Of those with secondary amenorrhea had very low weight - scores Drior to the onset of weight loss. One patient, from the group without amenorrhea, required re-hospitdization for other psychiatric problems.
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References ANYAN,W. R. (1974), Changes in erythrocyte sedimentation rate and fibrinogen during anorexia nervosa. J.Pediat.. 85:525-527. " FEIGHNER,J. P., ROBINS,E., GUZE, S. B., WOODRUFF,R. A,, WINOKUR,G. & MUNOZ,R. (1972), Diagnostic criteria for use in Dsvchiatric research, Arch. Gen. Psychiat,. 26:57-63, FO'R~ES.G. B. (1972). Relation of fean body mass to height in children and adolescents. J.Pediat. Res., 6:32-37. GRYBOSKI, J., HILLEMEIER, C., KOCOSHIS, S., ANYAN,W. & SEASHORE, J. (1980). Refeeding pancreatitis in malnourishedchildren. J.Pediat., 97:441-443.
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ANNOUNCEMENT May 9 and 10, 1983, The Hyman Caplan Memorial Conference: Current Concepts and New Perspectives in Child Psychiatry, Chateau Laurier Hotel, Ottawa, Ontario, sponsored by the Royal Ottawa Hospital and Department of Psychiatry, University of Ottawa. For information contact: J. H. Beitchman, M.D., Royal Ottawa Hosital, 1145 Carling Avenue, Ottawa, Ontario, K1Z 7K4, telephone 613-722-6521.