Method: We conducted open-ended interviews of 20 parents of children with anorexia nervosa, and did a qualitative analysis of the interviews. We then developed an online questionnaire that 16 parents filled out, and incorporated that data into the analysis.
Results: The vast majority of parents reported their child was a "good" eater with a healthy appetite. When asked if the child's eating seemed "different," many reported they had displayed an unusually mature and adventurous palate. Families were aware of healthy eating recommendations. Recognition of early subtle symptoms was difficult, and almost all their child's initial interest in exercise and "healthy eating" that delayed the diagnosis.
Discussion: Since the observations and insights of parents have been neglected for many years, these observations challenge the historical focus on "picky eaters" as a risk factor for anorexia nervosa, and suggest the alternative unusually adventurous and "carefree" food selection may be a risk factor. The subtle onset of the disorder should be more widely publicized especially to parents and pediatricians.
The majority of the interviews were approximately two hours; most interviews were conducted by telephone; all interviews, whether in person or via telephone, were recorded and transcribed. The Boston University Institutional Review Board approved this protocol, and all parents signed an informed consent, or gave consent over a recorded line.
After completing twenty interviews we developed a 150-question survey to ensure our questions of interest were answered by most of the participants. A partial list of questions is on Table 2. Most questions were rated on a 5 part-Likert scale. Almost every question had unlimited room for writing in comments. We then requested the participants fill out the questionnaire over the Internet.
None of the families were vegetarians. Seven of the 20 families reported one parent being on a diet at times or someone in the family struggling with their weight. None of the children ate diet foods or artificial sweeteners, but these products were in the house. Interestingly, none of the participants considered skim milk, low fat salad dressing, or low fat mayonnaise to be diet food. The usual drink at dinner was milk or juice. Only one family drank whole milk. Six children who had shown intolerance
Age onset |
Length of illness |
Sex |
Status |
Source |
BMI lowest |
% Body Weight Lost |
Parent |
12 |
2 yr |
F |
Recovered |
Website |
14.8 |
9% |
Mother |
14 |
1.5 |
F |
Improving |
Website |
19.1 |
24% |
Mother |
14 |
5 yr |
F |
Relapsed |
Website |
15.8 |
49% |
Father |
10 |
6 mo |
M |
Improving |
Website |
15.1 |
12% |
Mother |
13 |
2 yr |
F |
Improving |
Website |
17.8 |
15% |
Mother |
13 |
2 yr |
F |
Improving |
Therapist |
17.5 |
22% |
Mother |
15 |
9 mo |
F |
Improving |
Website |
14.7 |
16% |
Mother |
14 |
15 mo |
F |
Improving |
Therapist |
22.5 |
11.5% |
Mother |
13 |
18 mo |
F |
Improving |
Therapist |
15.6 |
21% |
Mother |
15 |
5 yr |
F |
Slowly Improving |
Friend |
14.6 |
34% |
Mother Father |
10 |
20 mo |
F |
Improving |
Therapist |
|
22% |
Mother |
13 |
6 mo |
F |
Improving |
Website |
|
11% |
Mother |
17 |
9 mo |
F |
Improving |
Website |
17.9 |
11% |
Mother |
19 |
8 mo |
M |
Improving |
Website |
16.5 |
18% |
Mother Father |
18 |
8 mo |
F |
Improving |
Website |
18.5 |
13% |
Mother |
14 |
20 mo |
F |
Improving |
Website |
|
14% |
|
9 |
12 mo |
F |
Improving |
Website |
|
35% |
Mother |
14 |
3 yrs |
M |
Improving |
Website |
|
20% |
Mother |
17 |
6 mo |
F |
Improving |
Website |
15.6 |
28% |
Mother |
19 |
2 ½ yr |
F |
Relapsed |
Website |
16.4 |
14% |
Mother |
Sample questions and prompts from Interview Please describe your daughter/son eating as an infant, baby, toddler, and school aged child. Prompts: breast, bottle fed, starting solids, picky eater, had a sweet tooth, concerns eating too much or too little Did you notice her eating or food choices were different from her friends? Could you tell me about the onset of her illness? Prompts Did she have any sickness, growth spurt, emotional trauma, difficulty in school, or anything else that comes to mind that was going on about that time? _________________________________________________________________________________________________ Sample questions from Questionnaire (Answered on 5 point scale: agree strongly, agree slightly, neutral, disagree slightly, disagree strongly Generally as a child he/she had limited repertoire of foods he/she would eat Generally as a child he/she was willing to try new goods As a child he/she had concerns about textures of food—too mushy etc As a child he/she liked very spicy and strong flavors. As a child you worried that he/she was eating too much and had concerns about portion control. Most meals were home cooked Generally chicken was eaten at least once/week Someone in the family really enjoyed cooking |
All the families allowed free access to the kitchen, and most reported their child began to select their own foods for snack at age 9 or 10. Most reported there were sweets in the house -it was most frequently ice cream, baked goods, and/ or cookies. All the families would eat out for dinner occasionally; 13 never ate at fast food restaurants, and 5 occasionally did.
Quotes that capture the responses are as follows:
"She adored beans with a passion. String beans, lentil, peas, People loved to have her sleep over because she was so easy to feed. She ate what the adults ate. She even liked hot peppers."
"Only difference from her peers, she ate healthier, did not like fries, and liked a good sirloin."
"Her eating was different from her sister who was a plain Jane. My husband would buy these pickled onions in vinegar, and she would pop them into her mouth like they were candy."
Two of the children were described as "picky"; they liked the same food everyday, no spice, and liked "white food" such as white bread without crust and macaroni and cheese.
Most parents were surprised that this particular child developed AN, as the parents noted he/she always enjoyed eating and was a pleasure to feed.
It was very difficult for most parents to pinpoint the moment they became concerned, then alarmed. Many parents reported that the initial changes were very subtle; an unhappiness, an avoidance of friends, a desire to exercise, some obsessive symptoms, such as having to score a basket a specified number of times until he could allow himself to stop practicing, but it was difficult to see it as abnormal. Some parents thought their child was showing emotional signs of adolescence. Several children developed a strong interest in cookbooks and preparing food approximately two or three years before being diagnosed with anorexia nervosa. All reported the child developed an interest in healthy eating. Over 50% gave up foods such as desserts or "junk food;" sometimes these were given up for Lent. Many parents were initially delighted with these changes. Several parents noted their child took part in a school-based programs based around healthy eating and exercise. No one thought these programs were intrinsically causative, but instead saw their child as uniquely vulnerable. Seven children chose to become vegetarian several months to one year prior to diagnosis (only one was allowed to continue after diagnosis). This period of vague concern varied from six months or less, up to two years before the diagnosis was made.
Six children had chronic prolonged (greater than 1 year continuous) antibiotic use throughout childhood - four for recurrent otitis media; one for recurrent pulmonary infections; one prophylaxis because she was on steroids.
Several case/control studies have looked at early "picky eating" as a risk along with other risk factors, finding weak correlations [8-14]. It is important to recognize that parents were not included in development of the questionnaires frequently used in these studies, so the analysis was limited to the researcher's assumptions, which were derived from focus groups consisting of only researchers and patients. In 2011 Dellava examined retrospective maternal reports of early feeding difficulties, picky eating, and gastrointestinal symptom in a group of patients with AN [15]. Mothers were asked, "How often was your child a picky eater?" While the subject who filled out the questionnaire, was the mother rather than the patient, there was no parental involvement in the development of the instrument, and there were no questions examining other eating behaviors such as adventurous palates, or being unusually easy to feed. Dellava's results showed no association between early eating problems and subsequent AN; only 11% of the women with AN were described by their mothers as picky eaters. It is interesting that our results 2 out of 20 (10%) were also described as picky.
A recent review of a population based cohort of 4,018 from Rotterdam, The Netherlands, noted that 46% of the children were "picky eaters" at some point before age 6 [16]. Noting that "picky eater" remains a vague concept, the authors defined it as a parent's positive answer to two questions; whether the child "does not eat well: or "refuses to eat." The authors note that "picky eating can be considered a normal developmental phase, and hypothesized the evolutionary advantage that "picky eating" as a youngster helps the child avoid toxins.
Is this "adventurous, mature palate" we were noticing, paradoxically indicative of immature taste development? Can it be that the food restriction in later childhood or early puberty that develops into AN is a delayed "normal" response that is occurring at a vulnerable developmental period?
We found that families appeared to be on the healthiest end of the continuum of ordered eating. They ate home cooked meals, were aware of eating seasonally, ate dinners as a family and were aware of "healthy eating." While this is laudable, we wonder whether the decreased milk intake might be significant. Only one of these children drank whole milk; most avoided fast foods, and were aware of limiting fat. These families were aware of nutritional recommendations. The 2006 American Academy of Pediatrics toddler recommendations are that a child be weaned from breast milk to skim milk if there is a family history of obesity [17].
We noted a substantial minority; six of the 20 (30%) were on chronic prophylactive antibiotics for at least one year in early childhood. This is interesting in light of some evidence that gut microflora could act via the immune system to influence hypothalamic appetite regulating proteins [18]. Most parents reported being initially pleased that their child showed an interest in "healthy" eating and exercise, and cooking. Although widely appreciated in eating disorder clinics that this cluster of behavior can be an early warning of AN [19], none of the parents were aware of that initially.
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