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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

13

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