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Peter Deman Henny Janssen

What influences the practice of ID-MDs working with adults with Down Syndrome and subclinical hypothyroidism ? A qualitative study. Peter Deman Henny Janssen. Background. Subclinical hypothyroidism is frequently found in adults with Down syndrome.

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Peter Deman Henny Janssen

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  1. What influences the practice of ID-MDs working with adults with Down Syndrome and subclinical hypothyroidism?A qualitative study Peter Deman Henny Janssen

  2. Background • Subclinical hypothyroidism is frequently found in adults with Down syndrome. • Literature provides no evidence about whether this condition should be treated. • Diagnosis is based on laboratory measurements; symptoms are difficult to define.

  3. The thyroid and its function • The thyroid produces hormones that stimulate the metabolism. • Hypothyroidism: the thyroid does not produce enough hormones. The metabolic rate is lowered.

  4. Laboratory measurements-definitions of thyroid dysfunction

  5. Symptoms of hypothyroidism • Lowered metabolic rate: weight gain, cold intolerance, constipation, inactiveness, fatigue and menstrual problems. • Complaints and symptoms are not specific. • Predictive value of complaints is low.

  6. Frequent SH in DS • High prevalence, 12-33% • According to international guidelines, adults with DS should be screened for thyroid function.

  7. General population(the Netherlands) Prevalence of SH much lower:4-8% No screening, and thyroid function tests only in case of complaints, according to NHG- standard. Treatment with levothyroxine replacement when there is no other explanation for complaints and symptoms.

  8. Background • Subclinical hypothyroidism is frequently found in adults with Down syndrome. • Literature provides no evidence about whether this condition should be treated. • Diagnosis is based on laboratory measurements; symptoms are difficult to define.

  9. Evidence Based Medicine • Clinical expertise • Best research evidence • Patient’s unique values and circumstances

  10. What influences the practice and decision-making of ID-MDs? • Knowledge ? • Experience? • Difficulties? • Questions ? • Suggestions for futher research?

  11. Monique • 44 years old • Woman with Down syndrome • TSH 5,3 (ref 0,4-4,0 mU/l) • FT4 13 (ref 9-25 pmol/l)

  12. Questions for focus group discussion • Do you recognise this situation? Do you have experience with it? What is your first reaction? • How do you act in this situation? • Are there subgroups of people with DS where you act differently? • Have any aspects been left out?

  13. Travelling around the Netherlands Focus group Focus group Focus group Focus group

  14. Analysis - Grounded theory ( Glaser & Strauss, 1967) Transcripts from five discussions (5278 sentences) Key points marked (21 codes) Grouped in concepts (six themes) Basic categories (two categories) Theory or conceptual framework

  15. Results: “Recognition” Category • Diagnostic testing and interpretation of results varies according to ID-MD. • Investigation and registration of symptoms proves to be a difficult task. • Various resources of evidence; not always certain.

  16. Diagnostictesting and interpretation of resultsvaries

  17. Investigation and registration of symptoms proves to be a difficult task

  18. Various resources of evidence; not always certain

  19. Results: “Action” Category • Most ID-MDs are reluctant to treat. • The minority of ID-MDs administer thyroid hormone until normalisation of laboratory findings. • They may feel uncertain or inadequate.

  20. No improvement No risks Possible side-effects of treatmentLack of scientific evidence

  21. Experience of improved functioning Risk of development of hypothyroidismSide-effects are negligibleShould there always be scientific evidence?Unethical not to treat

  22. How to improvedecision-making?

  23. Suggestionsforfurther research

  24. Research proposal • Describe and measure with validated rating scales • Study the natural history • Involve patients and interest groups • Evaluate if a Randomised Controlled Trial on the effects of treatment is possible or useful • The development of guidelines will eventually become possible

  25. Until then Expertise and experience of ID-MD combined with the unique values and circumstances of the patient will guide the decision-making.

  26. AcknowledgmentsProf. Dr. H. van SchrojensteinLantman – de ValkDr. I. ProotDr. P. van Trotsenburgand Huisartsenpraktijk Berkenhove

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