Psychosocial aspects of our cystic fibrosis patients
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Psychosocial Aspects of Our Cystic Fibrosis Patients. Güzin Cinel, Deniz Doğru, Ebru Yalçın, Nazan Çobanoğlu, Sevgi Pekcan, Uğur Özçelik,Bahire Ulus,Nural Kiper Hacettepe Üniversitesi Pediatri Anabilim Dalı Göğüs Hastalıkları Ünitesi. Cystic Fibrosis (CF).

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Psychosocial Aspects of Our Cystic Fibrosis Patients

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Psychosocial Aspects of Our Cystic Fibrosis Patients

Güzin Cinel, Deniz Doğru, Ebru Yalçın, Nazan Çobanoğlu,

Sevgi Pekcan, Uğur Özçelik,Bahire Ulus,Nural Kiper

Hacettepe Üniversitesi

Pediatri Anabilim Dalı

Göğüs Hastalıkları Ünitesi

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

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

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


  • To determine the factors that affect psychosocial life of our CF patients


  • 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


Education of our CF patients

School problems

Routine clinic visits

  • In CF, practise guidelines recommend that all patients have periodic evaluationsfour 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

Examination interval

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

Attendance to diet program

Attendance to respiratory physiotherapy

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

Psychiatric support


  • %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)

Social activities

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


  • Studies have shown that active smoking is prevalent in CF population

  • The age of onset was often later than in their peers (mean 13-14years; 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


  • 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.

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

Smoking at home

One of our patients smokes cigarettes (17years old, male)

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

Our CF families

  • different social backgrounds

  • different economic status

  • different educational levels

  • They only share in common that CF impacts on their lives

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

Education of mothers

Education of fathers

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


  • 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


  • 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

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