Eating Disorders - Cystic Fibrosis Trust

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Nutrition and Body Image in
Adolescents with CF
Alison Morton
Consultant Dietitian, St James’ Hospital, Leeds
Dr Mandy Bryon
Consultant Clinical Psychologist, GOSH
Importance of Nutrition in CF

Positive association between nutritional
status and lung function (Zemel et al., 2002; Steinkamp
et al, 2002; Peterson et al., 2003; Kastner-Cole et al., 2005;
Pedreira et al., 2005)

Positive association between survival and
body weight, height and BMI (Kraemer et al., 1978;
Corey et al., 1988; Beker et al., 2001; Sharma et al., 2001; Stern et
al., 2008)
Importance of Nutrition in CF

Impact of poor nutritional status on health in CF

Delayed puberty (Dodge, 1992; Johannesson et al., 1997;
Arrigo et al., 2003; Umlawska et al., 2010)

Decreased exercise tolerance (Marcotte et al., 1986; de
Meer et al., 1999)

Impaired respiratory muscle function (Zemel et al.,
2000)
Change in BMI at Leeds Adult Unit
Importance of Nutrition in CF
BMI and Acute Exacerbations Adults
100%
80%
60%
3+
2
40%
1
20%
0
0%
15
17
19
21
23
25
27
29
31
33
BMI
Data from Hebe Quinton CFF Patient Registry
Association of Body Mass Index with
Common Complications
50%
Glucose Problems
40%
30%
CFRD
20%
Osteopenia/osteoporosis
10%
0%
15
17
19
21
23
25
27
29
31
33
Data from Hebe Quinton CFF Patient Registry
35
Age Distribution of Death 2011
Median age of death 26 years – adolescence is a time of vulnerability
Optimising Nutrition in
Adolescence is Essential…
Optimising Nutrition in
Adolescence is Essential…
Energy & protein requirements greatest at time of peak growth
95% peak bone mass achieved by the end of the pubertal growth spurt
BUT
Adherence issues
Independence and risk taking behaviour
Peer pressure
Body weight struggles and body image challenges
Diagnostic Criteria for Eating
Disorders

Anorexia Nervosa





Refusal to maintain minimal body weight
Fear of weight gain or fatness
Body shape/weight disturbance
Amenorrhoea
Bulimia Nervosa



Recurrent binge eating
Inappropriate behaviour to prevent weight gain
Self-evaluation based on shape/weight
CF-related Eating Attitudes and
Behaviours

Clinically observed in CF:
 Poor appetite even when free of infection (Durie & Pencharz,
1989)
 Avoidance of foods associated with gastro-intestinal symptoms or
reduction of overall food intake (Murphy & Wooton, 1998)
 Manipulation of enzyme or insulin use (Bryon et al., 2008)
 Non-adherence to dietary supplements or recommendations
(Gilchrist & Lenney, 2008)
 Pressure from others to eat (Abbott et al., 2000, 2007)
 Feeling full easily (Pumareiga et al., 1986)
 Denial of hunger (too ill to eat) (Pumariega et al., 1986)
 Idiosyncratic: fear of stomach pushing up into lungs, choking on
food if eat too fast (Pumariega et al., 1986)
Neil 15 years

Neil aged 15 years lives with both parents.
Father is diagnosed with a mental health
problem. Neil complained a few years ago of
hating his fat stomach and didn’t like having to
eat high fat foods. Neil’s rate of weight increase
slowed and it transpired that he had in mind a
set weight that he would not go over
(underweight for height). He recently became
vegetarian and stopped Creon and vitamins for
moral reasons. His weight gain is static.
Maddie 17 years

Lives with both parents and younger sister,
not CF. Very well until aged 15, weight loss
++, Pa growth, IV’s. Refused to attend
school, very shy. Hates how her body looks,
very selective in food range, only drinks
water. Very supportive and concerned
parents. Difficult to engage Maddie in any
consultation, speaks through mum.
Group 1

Thinking about the two cases:

What could be the signs that someone is
having problems with body image and eating
disturbance?
What might contribute to the problem?

Group 2:

From your clinical experience what have you
found to be helpful and unhelpful in cases
like these?
Beginning Approach




Avoid judgment
Avoid being the food police
Avoid hyper focus on weight
Think first before talking about specifics e.g.
weight goals, specific energy targets, weight
changes
Questioning/Getting to Know
Habits and Patterns



Open ended questions about
eating/mealtimes
Typical routine for school/work, weekend,
holidays
What are their challenges and concerns with
weight, food, body image?
More Detailed Questioning








Are you concerned about your weight?
Are you concerned about your appearance?
How do you handle these concerns?
How much do you want to weigh?
How often do you weigh yourself?
Anything about your body you want to change?
Do you take Creon as recommended?
Do you have any difficulties buying/preparing food?
Team Approach is Best





Remain a team and use all members
Act but be careful and mindful of approach
Communication is essential
CF teams have a lot of resources when
expertise is pooled but…
If eating disorders is suspected ask for expert
help
Conclusion




The existence of eating disturbance and
disturbed body image is of concern in
adolescents and adults with CF
These adolescents and adults have lower selfesteem than those without eating disturbance
and are likely to have other stressors
Consideration of team pressures on eating
attitudes and behaviours
Need for early identification and treatment of any
disturbance – screening tool
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