PhD defence Rebecca Valery Steenaard
Supervisors: Prof. dr. H.R. Haak, Prof. dr. R.A. Feelders
Keywords: Adrenocortical carcinoma, Centralization, Questionnaire, Quality of life
"Quality of life and care in adrenocortical carcinoma: Kwaliteit van leven en zorg in bijnierschorscarcinoom"
Every year 20 to 30 persons in the Netherlands are diagnosed with adrenocortical carcinoma, a rare cancer. This often comes with hormonal imbalances, major treatment and a large impact on very day life.
Research provides new insight in the treatment and guidance of patients. Data from the Netherland Cancer Registry shows that patients treated in an expert center generally had a better survival than patients treated elsewhere. This confirms the need for centralization of care for this rare condition.
Many patients experience fatigue, emotional problems and limitation in daily activity. These effects can persist even years after treatment. Together with patients, the first disease specific quality of life questionnaire was developed. This can be used to improve patient guidance to prevent early discontinuation of treatment due to loss of quality of life.
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