ORIGINAL ARTICLE
Burden and psychiatric symptoms on key relatives of patients with eating disorders: a preliminary study D. saccon. A. Favaro. P. Santonastaso Department of Neurological and Psychiatric Sciences. University of Padova. Padova. Italy
ABSTRACT. Although eating disorders are serious illnesses that affect adolescents and strongly involve their families, no study to date investigated the burden of these families. Forty-three relatives of 26 patients with eating disorders were assessed on subjective and objective burden, overinvolvement, hypercriticism and psychiatric symptoms. The subjective burden reported by the key relatives of patients with Anorexia Nervosa was significantly greater than that of the key relatives of patients with Bulimia Nervosa. Moreover, the relatives of anorexic patients scored higher for overinvolvement and psychiatric symptoms than the relatives of bulimic patients. The findings of the present study suggest the usefulness of treatment programs that include family counselling. (Eating Weight Disord. 1, 1-4, 1996). ©1996, Editrice Kurtis
INTRODUCTION
Key words: Anorexia nervosa, bulimia nervosa, caregivers, key relative, family burden.
Correspondence: Prof. Paolo Santonastaso Dipartimento di Scienze Neurologiche e Psichiatriche Universitil di Padova Via Giustiniani 5 35128 Padova, Italy
The notion of burden involves problems, difficulties, or negative events that afflict the key relatives of a psychiatric patient (1). After a particular attention to the etiologic role of the family of the psychiatric patient, only recently the psychiatric literature have looked at the impact of an ill member on the rest of the family (2, 3). At the beginning, the studies on the family effect of severe illness were focused on schizophrenia, while later they have been extended to other psychiatric diseases (2, 4, 5). Similarly, the notion of Expressed Emotion and the use of psychoeducational programmes for schizophrenic patients' relatives were further extended to other pathologies (6). A correlation is possible between Expressed Emotion aspects - overinvolvemen!, hypercriticism, hostility, etc. - and burden perceived by the key relatives. For this reason the distinction between "objective" and "subjective" burden is necessary (2). The first concerns objective problems related to the patient's illness, while the latter is the burden subjectively perceived by the key relatives. Although eating disorders are serious illnesses that affect adolescents and strongly involve their families, no study to date investigated the burden of these families.
In the present study we carried out a preliminary assessment of the burden on the key relatives of patients with eating disorders with the aim of investigating the relationship between family burden and type and seriousness of eating disorders.
MATERIALS AND METHODS
Subjects We studied 43 key relatives of 26 patients referred consecutively to our Outpatient Eating Disorders Unit from May to September 1995. They were 23 mothers, 18 fathers, 1 sister and 1 husband. Patients were diagnosed as having Anorexia Nervosa (AN; n=9L Bulimia Nervosa (BN; n=12), Binge Eating Disorder (BED; n=2) and Eating Disorders Not Otherwise Specified (EDNOS; n=3) according to DSM-IV criteria (7). The mean age was 20.52 ± 2.76 years in the whole sample; 19.45 ± 2.04 among AN and 21.91 ± 3.51 among BN. Mean BMI (Body Mass Index) was 15.87 ± 1.56 among AN and 20.06 ± 2.54 among BN. The mean duration of illness was 51± 37 months.
Assessment instruments To evaluate family burden among key relatives, we used the self-administered Family
Family burden in cming disorders
Problems Questionnaire {FPQ; 8). The two burden sections {objective and subjective) and the two Expressed Emotion sections {overinvolvement and hypercriticism) were used in the present study. Psychiatric symptoms were studied by a shortened version of the H-SCL 90 (SCL-58). A semi-structured interview and some self-report questionnaires - EAT {9), ED! {10), H-SCL 90 {11) - were administered to the patients.
RESULTS Subjective burden (SB) and overinvolvement scores were significantly greater among AN than among BN relatives: 2.10 ± 0.49 vs 1.64 ± 0.49 (p=0.006) and 1.98 ± 0.29 vs 1.76 ± 0.32 (p=0.03). Objective burden (OB) and criticism scores were greater among AN relatives but not in a significant way: 1.41 ± 0.19 vs 1.25 ± 0.31 (p=0.06) and 2.20 ± 0.29 vs 2.08 ± 0.39 (p=0.28). Tables 1 and 2 show the mean items score on the OB and SB sections of FPQ. Although the burden was generally greater in AN than in BN, significant differences were found only for the SB.
The SB was found to be higher than the
08 both in AN and BN, but this difference
was greater in AN (OB I SB = 1.48), rather than in BN (OBI SB = 1.36). Although the mothers showed slightly higher scores than the fathers, there were not significant differences between mothers and fathers in FPQ and SCL-58 scores. The relatives of anorectic patients scored higher than the relatives of bulimic patients on SCL-58 total score (p=0.02) and on interpersonal sensitivity (p=0.03), depression (p=0.003) and anxiety subsca!es (p=0.05). In the whole sample, no significant relationships appear to exist between relatives' burden and patients' variables (EAT, EDI and SCL-90 scores, the duration and the severity of illness, the number of previous treatments, etc.). Parental criticism was positively correlated with the number of previous treatments (r=0.45; p=0.004), with EDI perfectionism (r=0.41; p=0.01), and with SCL-90 hostility {r=0.51; p=0.001) of the patients. The overinvolvement was positively correlated with the total score on EAT that evaluates the severity of eating symptoms (r=0.32; p=0.04). In the AN group significant correlations were found between the objective burden
TABLE 1 Content and scores of objective burden items. FPQ - Objective burden items
ED
AN
BN
p
PSY
NEU
1. Frequent awakenings in the night
1.30
1.28
1.32
ns
1.8
1.5
2. Neglect of hobby
1.71
1.94
1.57
ns
2.1
1.9
3. Difficulty in taking holidays
1.33
1.44
1.27
ns
2.0
1.8
4. Difficulty in taking trips on Sunday
1.46
1.50
1.50
ns
2.1
1.6
5. Difficulty in inviting friends or relatives
1.56
1.89
1.36
0.02
1.9
1.8
6. Poor social relationships
1.81
2.00
1.68
ns
2.4
2.1
7. Poor social relationships due to the patient
1.35
1.61
1.18
ns
2.4
1.8
8. Work difficulties or absence from work or school
1.19
1.22
1.14
ns
1.7
1.3
9. Financial difficulties due to the patient
1.05
1.00
1.09
nc
1.6
1.5
10. Interruptions or changes of work
1.05
1.00
1.09
nc
1.3
1.1
11. Need to work more to get the money needed
1.14
1.22
1.09
ns
1.1
1.1
12. Need to move house
1.00
1.00
1.00
nc
1.1
1.1
13. Neglect of other family members
1.28
1.28
1.27
ns
2.3
1.6
ED=total sample of Eating Disorders; PSY=sample with diagnosis of schizophrenic in Veltre's study (5); NEU=somple with diagnosis of neurotic disorders in Veltre's sludy (5). 2
D. Saccon. A. Favaro. P. Santonastaso
TABLE 2 Content and scores of subjective burden items FPQ • Subjective burden items
ED
AN
BN
PSY
NEU
14. Feeling of having given up leading one's life as wanted
1.60
2.00
1.36 .005 2.1
1.7
15. Health problems
1.81
2.00
1.68
ns
2.1
1.7
16. Feeling of not being able to stand the situation longer
1.98
2.12
1.90
ns
2.1
1.8
17. Crying or depressive feelings
1.98
2.28
1.71
.02
2.4
2.3
18. Need For a moment of rest
2.09
2.33
1.86
.03
2.4
2.1
19. Feeling of bein~ completely at patient's bee and call
1.71
1.88
1.57
ns
2.1
1.9
20. Worries of patient harming him/herself
1.91
2.33
1.64 .002 1.9
1.6
p
and the patients' hostility at SCL-90 (r=0.49; p=0.05) and between the criticism and the number of previous treatments (r=0.57; p=0.02). In the BN group, criticism appears to be positively correlated vvith the number of previous treatments (r=0.44; p=0.04), ED! bulimia (r=0.63; p=0.002) and perfectionism (r=0.45; p=0.04), SCL-90 interpersonal sensitivity, hostility and phobic anxiety (r=0.50; p=0.02). The overinvolvement was correlated with EDI bulimia (r=0.63; p=0.002).
DISCUSSION The findings of this preliminary study are of some interest because they are the results of the first investigation on family burden in eating disorders. The family burden appeared to be greater for AN than for BN, but this difference is statistically significant only for the SB. Subjective burden is greater than OB both in AN and in BN. As a study with similar methods was performed by Veltro et al. (5) on a sample of 27 patients with diagnosis of schizophrenia and 19 patients with severe neurotic disorders, the scores reported by our sample of relatives can be compared to the findings of Veltro et al.'s study (Tables 1 and 2). OB item's scores reported by AN relatives were similar to those of the neurotics of Veltro's study. Instead, the SB items of the same group were higher than those of neurotics and similar to those of schizophren-
ics. In bulimic patients the scores of OB and SB were lower than those of both schizophrenics and neurotics. No significant relationship emerged between the family burden and the severity and the duration of the illness. These results should be confirmed on larger samples since it is important to understand if the burden reported by the relatives is linked to the only presence of the illness or to some of its characteristics. Both in AN and BN, family criticism is positively related to the number of previous treatments. It could be interesting to understand whether family criticism is associated with a higher risk of drop-out or if criticism increases after treatments' failures. In AN we have found a greater criticism and overinvolvement than in BN. In the latter group there are significant correlations between criticism and the severity of binges, perfectionism, interpersonal sensitivity, hostility, phobic anxiety. It seems that in AN criticism is linked to the only presence of the disease, while in BN it is caused by some of the symptoms that involve interpersonal relationship. It is noteworthy that mothers' scores are not higher than fathers' at the overinvolvement subscale, in contrast to what is usually considered about mothers' emotional involvement and fathers' "absence". In conclusion, our results confirm the importance of involving the family in the treatment, offering them a specific counselling. This makes their cooperation in the treatment easier, reassuring the relatives and alleviating their feelings of guilt (12). Research on the family burden may help to improve the counselling programmes (5). Acknowledgements We acknowledge dr. Franco Veltro for the permission to usc FPQ and for his collaboration.
REFERENCES 1. Platt S.: Measuring the burden of psychiatric illness on the family: an evaluation of some ratings scales. Psycho!. Med., 15, 383393, 1985. 2. Fadden G., Bebbington P., Kuipers L.: The burden of care: the impact of functional psychiatric illness on the patient's family. Br. J. Psychiatry 150, 285-292, 1987. 3
Family burden in eating disorders
3. Morosini P., Veltro F., Cerreta A., Gaia R., Palomba U., Ventra C.: Disabilita sociale e carico familiare. Studio di riproducibilita di un nuovo strumento di valutazione. Rivista Sperimentale di Freniatria 3, 541-563, 1988. 4. Fadden G., Bebbington P., Kuipers L.: Caring and its burdens: a study of the spouses of depressed patients. Br. J. Psychiatry 151, 660-667, 1987. 5. Veltro F., Magliano L., Lobrace S., Morosini P.L., Maj M.: Burden on key relatives of patients with schizophrenia vs neurotic disorders: a pilot study. Soc. Psychiatry Psychiatr. Epidemiol. 29, 66-70, 1994. 6. Casacchia M., Roncone R.: Trattamento psicoeducazionale. In: Cassano G.B., Pancheri P. (Eds.), Trattato Italiano di Psichiatria. Milano, Masson, 1992, pp. 2689-2702. 7. American Psychiatric Association, Diagnostic and Statistical Manual of Mental Disorders, 4th ed., Washington DC.. A.P.A. Press, 1994.
8. Morosini P., Roncone R., Veltro F., Palomba U., Casacchia M.: Routine assessment tools in psychiatry: a case of questionnaire of attitudes and burden. Italian Journal of Psychiatry and Behavioural Science 1, 95101, 1991. 9. Garner D.M., Garfinkel P.E.: The eating attitudes test: an index of the symptoms of anorexia nervosa. Psycho!. Med. 9, 13-28, 1979. 10. Garner D.M., Olmsted M.P., Polivy J.: Development and validation of a multidimensional eating disorder inventory for anorexia nervosa and bulimia. International Journal of Eating Disorders 2, 15-34, 1983. 11. Derogatis L.R., Lipman R.S., Covi L.: H-SCL90: an outpatient psychiatric rating scale preliminary report. Psychopharmacol. Bull. 9, 13-28, 1973. 12. Favaro A., Santonastaso P.: Anoressia e bulimia: quello che i genitori (e altri) vogliono sapere. Verona, Positive Press, 1996.
Burden and psychiatric symptoms on key relatives of patients with eating disorders: a preliminary study D. saccon. A. Favaro. P. Santonastaso Department of Neurological and Psychiatric Sciences. University of Padova. Padova. Italy
ABSTRACT. Although eating disorders are serious illnesses that affect adolescents and strongly involve their families, no study to date investigated the burden of these families. Forty-three relatives of 26 patients with eating disorders were assessed on subjective and objective burden, overinvolvement, hypercriticism and psychiatric symptoms. The subjective burden reported by the key relatives of patients with Anorexia Nervosa was significantly greater than that of the key relatives of patients with Bulimia Nervosa. Moreover, the relatives of anorexic patients scored higher for overinvolvement and psychiatric symptoms than the relatives of bulimic patients. The findings of the present study suggest the usefulness of treatment programs that include family counselling. (Eating Weight Disord. 1, 1-4, 1996). ©1996, Editrice Kurtis
INTRODUCTION
Key words: Anorexia nervosa, bulimia nervosa, caregivers, key relative, family burden.
Correspondence: Prof. Paolo Santonastaso Dipartimento di Scienze Neurologiche e Psichiatriche Universitil di Padova Via Giustiniani 5 35128 Padova, Italy
The notion of burden involves problems, difficulties, or negative events that afflict the key relatives of a psychiatric patient (1). After a particular attention to the etiologic role of the family of the psychiatric patient, only recently the psychiatric literature have looked at the impact of an ill member on the rest of the family (2, 3). At the beginning, the studies on the family effect of severe illness were focused on schizophrenia, while later they have been extended to other psychiatric diseases (2, 4, 5). Similarly, the notion of Expressed Emotion and the use of psychoeducational programmes for schizophrenic patients' relatives were further extended to other pathologies (6). A correlation is possible between Expressed Emotion aspects - overinvolvemen!, hypercriticism, hostility, etc. - and burden perceived by the key relatives. For this reason the distinction between "objective" and "subjective" burden is necessary (2). The first concerns objective problems related to the patient's illness, while the latter is the burden subjectively perceived by the key relatives. Although eating disorders are serious illnesses that affect adolescents and strongly involve their families, no study to date investigated the burden of these families.
In the present study we carried out a preliminary assessment of the burden on the key relatives of patients with eating disorders with the aim of investigating the relationship between family burden and type and seriousness of eating disorders.
MATERIALS AND METHODS
Subjects We studied 43 key relatives of 26 patients referred consecutively to our Outpatient Eating Disorders Unit from May to September 1995. They were 23 mothers, 18 fathers, 1 sister and 1 husband. Patients were diagnosed as having Anorexia Nervosa (AN; n=9L Bulimia Nervosa (BN; n=12), Binge Eating Disorder (BED; n=2) and Eating Disorders Not Otherwise Specified (EDNOS; n=3) according to DSM-IV criteria (7). The mean age was 20.52 ± 2.76 years in the whole sample; 19.45 ± 2.04 among AN and 21.91 ± 3.51 among BN. Mean BMI (Body Mass Index) was 15.87 ± 1.56 among AN and 20.06 ± 2.54 among BN. The mean duration of illness was 51± 37 months.
Assessment instruments To evaluate family burden among key relatives, we used the self-administered Family
Family burden in cming disorders
Problems Questionnaire {FPQ; 8). The two burden sections {objective and subjective) and the two Expressed Emotion sections {overinvolvement and hypercriticism) were used in the present study. Psychiatric symptoms were studied by a shortened version of the H-SCL 90 (SCL-58). A semi-structured interview and some self-report questionnaires - EAT {9), ED! {10), H-SCL 90 {11) - were administered to the patients.
RESULTS Subjective burden (SB) and overinvolvement scores were significantly greater among AN than among BN relatives: 2.10 ± 0.49 vs 1.64 ± 0.49 (p=0.006) and 1.98 ± 0.29 vs 1.76 ± 0.32 (p=0.03). Objective burden (OB) and criticism scores were greater among AN relatives but not in a significant way: 1.41 ± 0.19 vs 1.25 ± 0.31 (p=0.06) and 2.20 ± 0.29 vs 2.08 ± 0.39 (p=0.28). Tables 1 and 2 show the mean items score on the OB and SB sections of FPQ. Although the burden was generally greater in AN than in BN, significant differences were found only for the SB.
The SB was found to be higher than the
08 both in AN and BN, but this difference
was greater in AN (OB I SB = 1.48), rather than in BN (OBI SB = 1.36). Although the mothers showed slightly higher scores than the fathers, there were not significant differences between mothers and fathers in FPQ and SCL-58 scores. The relatives of anorectic patients scored higher than the relatives of bulimic patients on SCL-58 total score (p=0.02) and on interpersonal sensitivity (p=0.03), depression (p=0.003) and anxiety subsca!es (p=0.05). In the whole sample, no significant relationships appear to exist between relatives' burden and patients' variables (EAT, EDI and SCL-90 scores, the duration and the severity of illness, the number of previous treatments, etc.). Parental criticism was positively correlated with the number of previous treatments (r=0.45; p=0.004), with EDI perfectionism (r=0.41; p=0.01), and with SCL-90 hostility {r=0.51; p=0.001) of the patients. The overinvolvement was positively correlated with the total score on EAT that evaluates the severity of eating symptoms (r=0.32; p=0.04). In the AN group significant correlations were found between the objective burden
TABLE 1 Content and scores of objective burden items. FPQ - Objective burden items
ED
AN
BN
p
PSY
NEU
1. Frequent awakenings in the night
1.30
1.28
1.32
ns
1.8
1.5
2. Neglect of hobby
1.71
1.94
1.57
ns
2.1
1.9
3. Difficulty in taking holidays
1.33
1.44
1.27
ns
2.0
1.8
4. Difficulty in taking trips on Sunday
1.46
1.50
1.50
ns
2.1
1.6
5. Difficulty in inviting friends or relatives
1.56
1.89
1.36
0.02
1.9
1.8
6. Poor social relationships
1.81
2.00
1.68
ns
2.4
2.1
7. Poor social relationships due to the patient
1.35
1.61
1.18
ns
2.4
1.8
8. Work difficulties or absence from work or school
1.19
1.22
1.14
ns
1.7
1.3
9. Financial difficulties due to the patient
1.05
1.00
1.09
nc
1.6
1.5
10. Interruptions or changes of work
1.05
1.00
1.09
nc
1.3
1.1
11. Need to work more to get the money needed
1.14
1.22
1.09
ns
1.1
1.1
12. Need to move house
1.00
1.00
1.00
nc
1.1
1.1
13. Neglect of other family members
1.28
1.28
1.27
ns
2.3
1.6
ED=total sample of Eating Disorders; PSY=sample with diagnosis of schizophrenic in Veltre's study (5); NEU=somple with diagnosis of neurotic disorders in Veltre's sludy (5). 2
D. Saccon. A. Favaro. P. Santonastaso
TABLE 2 Content and scores of subjective burden items FPQ • Subjective burden items
ED
AN
BN
PSY
NEU
14. Feeling of having given up leading one's life as wanted
1.60
2.00
1.36 .005 2.1
1.7
15. Health problems
1.81
2.00
1.68
ns
2.1
1.7
16. Feeling of not being able to stand the situation longer
1.98
2.12
1.90
ns
2.1
1.8
17. Crying or depressive feelings
1.98
2.28
1.71
.02
2.4
2.3
18. Need For a moment of rest
2.09
2.33
1.86
.03
2.4
2.1
19. Feeling of bein~ completely at patient's bee and call
1.71
1.88
1.57
ns
2.1
1.9
20. Worries of patient harming him/herself
1.91
2.33
1.64 .002 1.9
1.6
p
and the patients' hostility at SCL-90 (r=0.49; p=0.05) and between the criticism and the number of previous treatments (r=0.57; p=0.02). In the BN group, criticism appears to be positively correlated vvith the number of previous treatments (r=0.44; p=0.04), ED! bulimia (r=0.63; p=0.002) and perfectionism (r=0.45; p=0.04), SCL-90 interpersonal sensitivity, hostility and phobic anxiety (r=0.50; p=0.02). The overinvolvement was correlated with EDI bulimia (r=0.63; p=0.002).
DISCUSSION The findings of this preliminary study are of some interest because they are the results of the first investigation on family burden in eating disorders. The family burden appeared to be greater for AN than for BN, but this difference is statistically significant only for the SB. Subjective burden is greater than OB both in AN and in BN. As a study with similar methods was performed by Veltro et al. (5) on a sample of 27 patients with diagnosis of schizophrenia and 19 patients with severe neurotic disorders, the scores reported by our sample of relatives can be compared to the findings of Veltro et al.'s study (Tables 1 and 2). OB item's scores reported by AN relatives were similar to those of the neurotics of Veltro's study. Instead, the SB items of the same group were higher than those of neurotics and similar to those of schizophren-
ics. In bulimic patients the scores of OB and SB were lower than those of both schizophrenics and neurotics. No significant relationship emerged between the family burden and the severity and the duration of the illness. These results should be confirmed on larger samples since it is important to understand if the burden reported by the relatives is linked to the only presence of the illness or to some of its characteristics. Both in AN and BN, family criticism is positively related to the number of previous treatments. It could be interesting to understand whether family criticism is associated with a higher risk of drop-out or if criticism increases after treatments' failures. In AN we have found a greater criticism and overinvolvement than in BN. In the latter group there are significant correlations between criticism and the severity of binges, perfectionism, interpersonal sensitivity, hostility, phobic anxiety. It seems that in AN criticism is linked to the only presence of the disease, while in BN it is caused by some of the symptoms that involve interpersonal relationship. It is noteworthy that mothers' scores are not higher than fathers' at the overinvolvement subscale, in contrast to what is usually considered about mothers' emotional involvement and fathers' "absence". In conclusion, our results confirm the importance of involving the family in the treatment, offering them a specific counselling. This makes their cooperation in the treatment easier, reassuring the relatives and alleviating their feelings of guilt (12). Research on the family burden may help to improve the counselling programmes (5). Acknowledgements We acknowledge dr. Franco Veltro for the permission to usc FPQ and for his collaboration.
REFERENCES 1. Platt S.: Measuring the burden of psychiatric illness on the family: an evaluation of some ratings scales. Psycho!. Med., 15, 383393, 1985. 2. Fadden G., Bebbington P., Kuipers L.: The burden of care: the impact of functional psychiatric illness on the patient's family. Br. J. Psychiatry 150, 285-292, 1987. 3
Family burden in eating disorders
3. Morosini P., Veltro F., Cerreta A., Gaia R., Palomba U., Ventra C.: Disabilita sociale e carico familiare. Studio di riproducibilita di un nuovo strumento di valutazione. Rivista Sperimentale di Freniatria 3, 541-563, 1988. 4. Fadden G., Bebbington P., Kuipers L.: Caring and its burdens: a study of the spouses of depressed patients. Br. J. Psychiatry 151, 660-667, 1987. 5. Veltro F., Magliano L., Lobrace S., Morosini P.L., Maj M.: Burden on key relatives of patients with schizophrenia vs neurotic disorders: a pilot study. Soc. Psychiatry Psychiatr. Epidemiol. 29, 66-70, 1994. 6. Casacchia M., Roncone R.: Trattamento psicoeducazionale. In: Cassano G.B., Pancheri P. (Eds.), Trattato Italiano di Psichiatria. Milano, Masson, 1992, pp. 2689-2702. 7. American Psychiatric Association, Diagnostic and Statistical Manual of Mental Disorders, 4th ed., Washington DC.. A.P.A. Press, 1994.
8. Morosini P., Roncone R., Veltro F., Palomba U., Casacchia M.: Routine assessment tools in psychiatry: a case of questionnaire of attitudes and burden. Italian Journal of Psychiatry and Behavioural Science 1, 95101, 1991. 9. Garner D.M., Garfinkel P.E.: The eating attitudes test: an index of the symptoms of anorexia nervosa. Psycho!. Med. 9, 13-28, 1979. 10. Garner D.M., Olmsted M.P., Polivy J.: Development and validation of a multidimensional eating disorder inventory for anorexia nervosa and bulimia. International Journal of Eating Disorders 2, 15-34, 1983. 11. Derogatis L.R., Lipman R.S., Covi L.: H-SCL90: an outpatient psychiatric rating scale preliminary report. Psychopharmacol. Bull. 9, 13-28, 1973. 12. Favaro A., Santonastaso P.: Anoressia e bulimia: quello che i genitori (e altri) vogliono sapere. Verona, Positive Press, 1996.
