Psychosocial Aspects of Our Cystic Fibrosis Patients
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Transcript of Psychosocial Aspects of Our Cystic Fibrosis Patients
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Psychosocial Aspects of Psychosocial Aspects of Our Cystic Fibrosis Our Cystic Fibrosis
PatientsPatients
Psychosocial Aspects of Psychosocial Aspects of Our Cystic Fibrosis Our Cystic Fibrosis
PatientsPatients
Güzin Cinel, Deniz Doğru, Ebru Yalçın, Nazan Güzin Cinel, Deniz Doğru, Ebru Yalçın, Nazan Çobanoğlu, Çobanoğlu,
Sevgi Pekcan, Uğur Özçelik,Bahire Ulus,Nural KiperSevgi Pekcan, Uğur Özçelik,Bahire Ulus,Nural Kiper
Hacettepe Üniversitesi Hacettepe Üniversitesi
Pediatri Anabilim Dalı Pediatri Anabilim Dalı
Göğüs Hastalıkları ÜnitesiGöğüs Hastalıkları Ünitesi
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Cystic Fibrosis (CF)
As CF is a non-curable disease, it leads to so many psychosocial problems on patients and their families
These children are at greater risk of having significant emotional or behavioural problems
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Life expectancy in CF
The life expectancy of children born with CF has been steadily increasing over the past two decades as a result of major advances in diagnosis and treatment
The median life expectancy is now 33,4 years
Within this context, quality of life is increasingly recognised as an important therapeutic consideration and variable to measure
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The factors that affect quality of life
Besides the patients’ clinical state Adherence to routine visits Adherence to recommended therapies Psychiatric support School life Social life Family structures Health insurance
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Aim:
To determine the factors that affect psychosocial life of our CF patients
Method: In December 2005, we arranged a CF family
meeting in our department and we applied questionnaires to these families
In these questionnaires we looked for our patients’ adherence to therapies, school lives social activities and family structures
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Results
QUESTIONNAIRE NUMBER
(n)
DEMOGRAPHIC FEATURES OF OUR CF PATIENTS
AGE AT DIAGNOSIS
(month)(min-max)F/M
MEAN AGE (year), (min.-max)
85 39/467
(4 ay-30,6)4
(0-21 yıl)
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Education of our CF patients
44%
41%
11% 4%not attending toschool yet
primary school
high school
university
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School problems
37%
38%
2%2%4%4%
8%
5%
not answered
no problem
irregularattendancecrowded
cough
infection risk
diffi culty to followdrugsothers
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Routine clinic visits
In CF, practise guidelines recommend that all patients have periodic evaluations four times per year in order to assess and monitor the status of the disease
According to an epidemiologic study in 1995, there were over 12000 CF patients in US and Canada, and only 27% of patients had four or more routine visits during 12 months observation period*
* Konstan MW, Butler SM, Schidlow DV, Morgan WJ, Julius JR, Johnson CA. Patterns of medical practise in cystic fibrosis: part 1. Evaluation and monitoring of health status in patients. Pediatr Pulmonol 1999;28:242-247
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Examination interval
20%
6%
51%
6%6%
2% 9%monthly
2 months
3 months
4 months
6 months
once a year
not answered
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In routine clinic visits
Besides the clinical monitorisation of the disease
Attendance to recommended drug therapy Attendance to recommended diet program Attendance to recommended respiratory
physiotherapy
are evaluated
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Attendance to diet program
0
10
20
30
40
50
60
attending
not attending
not answered
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Attendance to respiratory physiotherapy
0
20
40
60
80
attending
not attending
not answered
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Psychiatric problems
The Vienna CF centre reported a life-time prevalence of psychiatric disorders of 18% among 162 parents*
Alcohol dependence was the most frequent disorder in fathers
In mothers recurrent depressive disorders predominated
* Götz I. Psychosocial background of families with a child with cystic
fibrosis. Israel J Med Sci 1996;(Suppl):66-67
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Psychiatric support
0
20
40
60
80
100
get support
don't get support
not answered
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Besides,
%10 of our patients take some drugs other than recommended (some vitamines, Schweden Bitter)
%24 of our patients take some drugs and vegetal teas known as alternative medicine (bioenergy, onion+radish water, honey+black cumin, rose hip, linden tea, sage tea)
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Social activities
64%19%
17% don't have anysocial activity
spor, music, dance
not answered
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This limitation in social activities
may be originating from
Over protected attitude of the families
Clinical status of some patients are not suitable for some activities
Patients may be uncomfortable in crowded places and may have discomfort from the physical environment
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Smoking-1 Studies have shown that active smoking is
prevalent in CF population The age of onset was often later than in their peers
(mean 13-14 years; compared to 11-12 years)
*In 1998, a multicentre trial; among CF patients 21% had tried smoking 11% were smoking *Britto MT, Garret JM, Dugliss MA, et al. Risky behavior in teens with
cystic fibrosis or sickle cell disease: a multicenter study. Pediatrics 1998;101:250-6
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Smoking-2
In another trial*
For every 10 cigarettes smoked FEV1 4%, FVC 3% reduced
There may also be an improvement in spirometric deterioration when the patient decides to stop smoking
*Smyth A, O’Hea U, Williams G, Smyth R, Heaf D. Passive smoking and impaired lung function in cystic fibrosis. Arch Dis Child 1994;71:353-4.
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Passive smoking
Pulmonary function and an increased tendency for chest infections correlated with parental smoking
Maternal smoking seemed to be more harmful to the patient
*Gilljam H, Stenlund C, Ericsson-Hollsing A, Strandvik B. Passive
smoking in cystic fibrosis. Resp Med 1990;84:289-91
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Smoking at home
43%
7%31%
9%2% 8% don't smoke
mother
father
mother+father
father+other
other
One of our patients smokes cigarettes (17years old, male)
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Family structure
The family affects the child’s adjustment, and similarly the child’s disease affects the family functioning
Family environment itself can be a considerable source of stress, meaning that individuals with CF have to cope with a variety of problems in addition to CF
It’s important to know and recognize the family background to identify and solve the psychosocial problems of CF patients
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Our CF families
different social backgrounds different economic status different educational levels
They only share in common that CF impacts on their lives
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Our CF patients’ family structures and physical environment they live in
Families consist of median 4 persons (2-9) At least one member has a job Median income is 800 YTL (200-6000 YTL) 35% live in rented houses, 54% live in their
own 42% use stoves for heating up their houses 6 families have more than one child with
CF 38% have family members having other
health problems
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Education of mothers
56%24%
19% 1%
primary school
high school
university
not literate
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Education of fathers
42%32%
26%
primary school
high school
university
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Health insurance
96,4% of patients’ health expenditures are covered by the government
32% complain that social foundations don’t cover the drug expenditures enough; and although having report about the disease they don’t pay some drugs such as vitamines
10,6% have shipping problems between the foundations when they need hospitalisation
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Conclusion-1
The follow-up of CF patients must be carried out in biopsychosocial health concept
To know biologic, social and psychologic factors and their interactions improves the effectivity of the therapy and quality of life
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Conclusion-2
The most important problems of our CF patients:
passive smoking noncompliance to recommended diet and
physiotherapy programmes family education
Information and support should be available to patients and their parents, to assist them in coping with this chronic illness