1. Lake E1
, Barnes R1
, Morton A2
, Wolf S2
1
Cystic FibrosisTrust, UK; 2
Regional CF Unit, Leeds, UK
Is Dietetics the Cinderella of the CF MultidisciplinaryTeam in CF Specialist Centers and Clinics in the UK?
Over the past two years, the Cystic Fibrosis Trust has peer reviewed three quarters of the 50 or so CF
centres in the UK. It has been notable that weaknesses in the service, normally reflecting poor staffing levels,
often include inadequate dietetic support.
Consequently, the Cystic Fibrosis Trust initiated a survey amongst adults with CF and the parents of children
with Cystic Fibrosis. We also separately surveyed Specialist CF Centre dietitians.
It is recognised that a poor BMI, especially when combined with a deteriorating lung function, is associated
with a poorer prognosis for those with Cystic Fibrosis.
I N T R O D U C T I O N
We wished to establish the number of people with CF suffering with weight and digestive problems and
whether as part of the multidisciplinary team, there was appropriate specialist CF dietetic support, given by
dietitians with experience, commitment and time to ensure that the special nutritional needs of those with
CF are effectively addressed.
A I M
The questionnaire used was developed by the Cystic Fibrosis Trust in conjunction with the advice and
recommendations of the joint chairs of the UK Dietitians’ Cystic Fibrosis Interest Group:Alison Morton
(Adult Specialist CF Dietitian) and Sue Wolfe (Paediatric Specialist CF Dietitian).
There were two parallel versions of the questionnaire – one for parents/guardians of children with CF aged
0-15 years and one for adults with CF aged 16 and over.The content of the questionnaires was very similar,
with the parent’s version having an extra question regarding growth.
The questionnaire was sent to most of the adults with CF (3,500) and just under half of the parents of
children with CF (1,800) who were on the CF Trust’s database at the time of the mailing.
M E T H O D
These responses raise a number of serious questions.
Firstly, do all patients fully understand the nature of the dietetic support they should be getting and its
importance. Many of the 80% plus who said they were satisfied with their dietetic service were not seen
regularly by a specialist dietitian.
Secondly, comments were made to the effect that dietetics was seen as significantly less important than other
aspects of CF care by their CF clinical team.Those with CF routinely saw specialist doctors, nurses and
physiotherapists more frequently than they saw specialist CF dietitians.
“More regular contact i.e. dietitian used to be present with Dr’s and physio at the clinic but this has not happened for
2 years”
Adult
“I do notice the dietetic support has always taken a backseat compared to lung function.”
Adult
Thirdly, there is a lack of clarity as to how a specialist CF dietitian is recognised as such. There is no specific
qualification which acknowledges that a dietitian has adequate knowledge and experience and as patients said
“how do I know if my dietitian is a specialist or not?”.
D I S C U S S I O N
These findings indicate a significant lack of appropriate, specialist dietetic support, given by dietitians with
experience, commitment and time to ensure that the special nutritional needs of those with CF are
effectively addressed.
C O N C L U S I O N
Response rate
The survey amongst patients resulted in a response rate of 21% (595 questionnaires from parents and 559
from adults).
Whilst well over 80% of both adults and the parents of children responding to this survey felt that their
nutritional care and dietetic support was good, around 14% raised concerns about this aspect of care.
“Excellent support! Our dietitian is available at every
hospital appointment and gives good advice when we
need it.”
Parent of a nine year old
“The dietitian is always available on the phone;
appointments can be made immediately if required.”
Parent of a one year old
“Very supportive, lots of practical advice and suggestions
our dietitian is very, very friendly, supportive and helpful.
She explains things efficiently and I feel that I could ask
her any question and it would be answered clearly.“
Adult
Problems were reported in contacting a dietitian out of clinic hours by a significant minority of respondents.
“3 weeks ago I was told I’d be contacted by my dietitian
but I am still waiting. I have a number but it’s always the
answer phone”
Adult
“Support outside of appointments would help. In the real
world this is our life not just a job!”
Parent of an 11 year old
The number of patients who reported having not seen a dietitian at all or having only seen a dietitian once in
the last year was worrying, and some patients did indeed feel let down in this respect. They reported an
inadequate level of dietetic support, especially in clinic, or in some cases no dietetic support at all. A number
reported only having access to a dietitian at their annual review.
This was particularly worrying for the parents of small children, who could go months without seeing a
dietitian. In the case of the time lapse between a relatively young baby and a toddler, this could have
significant implications. These include the management of enzymes as babies are weaned and feeding
problems often associated with toddlers, which are obviously of great concern to the parents of CF children.
“We get support but maybe not as regular as we would like.Although the CF team will give advice whenever there is a
need, you want to ensure your child is receiving the best possible care, support and guidance.”
Parent of a three year old
“We had one follow up appointment when our little boy was a few months old to discuss weaning and then we have
had no contact since. I feel we were left to go through the weaning process completely unsupported and had to cope
with this challenging time alone.”
Parent of a one year old
“[would like]More regular (monthly?) contact whilst our daughter is weaning.”
Parent of a ten month old
Access to dietitians was variable, as illustrated in the two charts below:
Reasons for this were either identified or speculated on by respondents. In some cases, there were just too
few dietitians for the number of patients and they did not have adequate time for each patient.
“They make time to see us but are extremely busy and very much in demand and under a lot of pressure from CF
unit.”
Parent of a six year old
“Currently we only have one dietitian amongst all our patients, inpatients, clinic etc.We used to have two but the post
was withdrawn. It is much harder to contact a dietitian now there is only one.”
Adult
In other cases, they felt the problem was due to lack of appropriate cover for dietitians on long-term sick or
maternity leave.
“When our dietitian was on maternity leave, we did not see anyone for nearly a year.”
Parent of a three year old
“We would like to see a CF Specialist Dietitian on a monthly basis (like we see the rest of the team)…this has been
difficult due to the current CF dietitian on long term sick.”
Parent of a one year old
The fact that shared care clinics were recognised as often not having a specialist dietitian was a further
problem. In such cases, patients recognised that access to specialist dietitians was determined and, indeed,
limited by whatever the arrangements with the specialist centre were, and whether they would include the
presence of a dietitian, which was not always the case.
“The dietitian from the CF team that we see once a year is very helpful.”
Parent of an 11 year old
“We are meant to be under shared care but we never get to see one normally. Local hospital does not have a
dedicated dietitian, had to visit the Specialist CF Centre to see a specialist dietitian.”
Parent of a four year old
Some patients were concerned about whether their dietitian was a specialist or not. Some reported
dietitians who they felt were of a general nature and who knew very little about CF. In such cases, they often
avoided contact with the dietitian, especially if they felt they were being offered repetitive, limited or unhelpful
advice.
Perhaps significantly, over 25% of the sample did not know the name of their specialist CF dietitian.
R E S U L T S
Do you feel that you/you and your child
get good support from your dietitian?
Yes
No
Both
Not answered
Don't know
84%
11%
3% 2%
(One respondent)
Length of time since last
seen dietitian (in months)
No.ofPatients
0
100
200
300
400
500
Adults
Parents
Notanswered
Don’tknow
AnnualReview
AtClinic
LastVisit
10Years
6Years
5Years
4Years
3Years
2Years
1Year
11
10
9
8
7
6
5
4
3
2
1
0
Everyvisit
Atclinic
Lots
Don’tknow
Notanswered
20+
19
18
17
16
15
14
13
12
11
10
9
8
7
6
5
4
3
2
1
0
No. of Episodes of contact in past year
No.ofPatients
0
30
60
90
120
150
Parents
Adults
Can you contact your dietitian quickly
and easily?
Yes
No
Both
Not answered
Don't know
81%
11%
3% 4%
1%
“Also I don’t know if she is a general dietitian, i.e. for all
conditions, as I don’t think she is very knowledgeable
about CF.”
Parent of a three year old
“Our regular dietitian is not a CF specialist and I
sometimes get the feeling that she is just repeating the
same mantra of ‘butter in mash potatoes’‘have we tried
Scandishakes.’.”
Parent of an eight year old
“To be frank I’ve lost complete confidence in her such
that I shan’t contact her again.”
Parent of a six year old
“We have found the dietitian at our local hospital to be
unhelpful and gives contradictory advice and thus don’t
see her anymore (this has been the case for several
years).”
Parent of an eight year old