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The Psychosocial Burden of Cooley’sAnemia in Affected Children and Their Parents

NAOMI KLEIN,a ARJUNE SEN,a JENNIFER RUSBY,a SIRET RATIP,b

BERNADETTE MODELL,c AND NANCY F. OLIVIERIa,d

aThe Hospital for Sick Children, Toronto, CanadabUniversity of Oxford Medical School, Oxford, United KingdomcUniversity College London Medical School, London N19 5NF, UnitedKingdom

The psychosocial effects of chronic disease have long been recognized. In some casesthese are of more concern to the patient than the underlying pathology, but it is only

recently that the medical profession has sought to quantify this aspect of disease. In addi-tion, there have been dramatic improvements in the prognosis of life-threatening childhooddiseases, such as Cooley’s anemia, so that the numbers affected by the burden of chronicillness continues to grow.

The psychosocial problems of Cooley’s anemia, in particular, despite this, remain con-siderable. They include anxiety, stigmatization, denial and isolation, and may be accentu-ated by the fact that thalassemia patients are often without overt physical deformity.

In response to the growing psychosocial problems, the World Health Organization(WHO) undertook a large multicenter trial in 1995 to evaluate the psychosocial aspects ofthalassemia major and sickle cell disease. A group based at the University of Londonfound that the questionnaires used by the WHO were either inappropriate for thalassemiamajor or rather cumbersome in a clinical context.1 They devised a simple set of psychoso-cial questions which could be asked in a structured interview with thalassemia patients ortheir parents. We undertook an extensive study of children with Cooley’s Anemia, and theirparents, at The Hospital for Sick Children in Toronto, Canada, which is among the largestcenters for the care of Cooley’s anemia patients in North America. In our study, we notonly assess the correlation between psychosocial and clinical burden, but also attempt todiscover which aspects within the psychosocial burden are of greatest importance. At atime when there is still no effective cure for thalassemia, we believe that this will providea basis from which therapeutic interventions can be accurately targeted so as to limit anypsychosocial damage that the young thalassemic may suffer.

METHODS

Our study is based on consecutive patients with Cooley’s anemia and their parentsattending the outpatient clinic at the Hospital for Sick Children in Toronto over a one

dAddress for Correspondence: Dr. Nancy Olivieri, Division of Hematology/Oncology, TheHospital for Sick Children, 555 University Avenue, Toronto, Ontario M5G 1X8; Canada; Tel: (416)813-6823; Fax: (416) 813-5346; E-mail: noliv@sickkids.on.ca

month period. All of those who gave consent and who spoke enough English to completethe questionnaire were interviewed.

Assessment was carried out in a structured interview. This was done to ensure compli-ance and accurate replies as the interviewer is able to ask the respondent to expand on andclarify the answers given.

We assessed three groups of respondents: i) parents answering questions about theirchildren (under 16), ii) parents answering questions about themselves, iii) children (age 7to 15 inclusive) answering questions about themselves.

The questionnaires used were those devised and validated by Ratip and his col-leagues at the University of London. These questionnaires cover a variety of “aspects”of the psychosocial burden, such as education, anxiety, isolation and feelings of differ-ence. There are several questions relating to each aspect and from the answers an aspectscore was deduced.

Using a similar scoring system ranging from zero to three, aspects of the clinical bur-den were assessed by the consultant hematologist in charge of the child’s care. These cat-egories differ in their importance and were assigned a multiplying factor to reflect this.

DISCUSSION

In accordance with the work of Ratip1 we found that neither the parent’s own psy-chosocial burden nor the parent’s assessment of their child’s psychosocial burden wasrelated to the child’s clinical state. Data for children reporting on their own psychosocialburden is not correlated with their clinical score, in contrast to the work of Ratip on adultthalassemia patients.1

We concluded that clinical and psychosocial burdens are not correlated for parents orchildren; parent’s perception of their child’s psychosocial burden correlates well while thechild is young, but not as the child reaches adulthood; the psychosocial burden felt by chil-dren is affected by that felt by their parents and vice versa; and while the overall psychoso-cial burden is similarly perceived by affected children and their parents, the value placed onindividual aspects of this burden may differ considerably between family members.

REFERENCE

1. RATIP, S. 1996. Methods for measurement of clinical and psychosocial burden in the tha-lassemias. MD Thesis, University of London.

KLEIN et al.: PSYCHOSOCIAL BURDEN OF COOLEY’S ANEMIA 513