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Partners of Huntington patients: implications of the disease and opinions about predictive testing and prenatal diagnosis.

Gerry Evers‐Kiebooms, An Swerts, Van den Berghe H

Open publisher page 35 citations

Abstract

Huntington's disease imposes a considerable burden on the patient and also on the family, especially on the partner. The present paper is based on a survey about the consequences of the disease from the point of view of the partner of the Huntington patient. The mental deterioration and the personality changes seem to be the most difficult aspects to cope with. The threat that their own children may later on develop the same disease is one of the most dramatic aspects. Most partners were aware of the availability of predictive testing for Huntington's disease and were concerned about the far-reaching consequences of the test result. There was a relatively high consensus that the test should only be delivered within a counseling context. Three out of four respondents were in favour of the availability of prenatal diagnosis for Huntington's disease.

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What this paper is about

Huntington's disease imposes a considerable burden on the patient and also on the family, especially on the partner. The present paper is based on a survey about the consequences of the disease from the point of view of the partner of the Huntington patient. The mental deterioration and the personality changes seem to be the most difficult aspects to cope with. The threat that their own children may later on develop the same disease is one of the most dramatic aspects. Most partners were aware of the availability of predictive testing for Huntington's disease and were concerned about the far-reaching consequences of the test result. There was a relatively high consensus that the test should only be delivered within a counseling context. Three out of four respondents were in favour of the availability of prenatal diagnosis for Huntington's disease.

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OpenAlex reports 35 citations for this work. Citation counts describe recorded attention and do not establish research quality.

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Available abstract

Huntington's disease imposes a considerable burden on the patient and also on the family, especially on the partner. The present paper is based on a survey about the consequences of the disease from the point of view of the partner of the Huntington patient. The mental deterioration and the personality changes seem to be the most difficult aspects to cope with. The threat that their own children may later on develop the same disease is one of the most dramatic aspects. Most partners were aware of the availability of predictive testing for Huntington's disease and were concerned about the far-reaching consequences of the test result. There was a relatively high consensus that the test should only be delivered within a counseling context. Three out of four respondents were in favour of the availability of prenatal diagnosis for Huntington's disease.

Key concepts: Predictive testing, Huntington's disease, Disease, Context (archaeology), Medicine, Test (biology), Psychiatry, Prenatal diagnosis

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Partners of Huntington patients: implications of the disease and opinions about predictive testing and prenatal diagnosis. — Research Paper | ScholarLens