NICE Adult GHR
News:  (September 2006) NICE has postponed its re-appriasal of the GH Guidelines until 2009

After the 2001 – 03 NICE Appraisal of Human Growth hormone in Adults there are positive, but challenging guidelines.

NICE published their Guidelines for Adult Growth Hormone Replacement Therapy on their website (www.nice.org.uk) on Wednesday 27th August 2003

A year previously NICE said that no Growth Hormone Deficient Adult could receive the vital hormone replacement they need. It is due largely to the determination and work of the Foundation’s activists and by many leading endocrinologists they agreed that patients can be selected – as is current UK practice – and have defined their criteria as to which patients they deem ‘cost-effective’.

Despite the high hurdles produced by the health economics, many patients are able to benefit. Importantly, patients currently on treatment will be able to remain on treatment, not be taken off as had previously been suggested.

Key to any NICE appraisal decision is whether or not a treatment is “cost-effective”. This judgement results from calculation of complex health economics, totally beyond the understanding of non-specialists.

The Appeal Board emphasised "this guidance does not override the individual responsibility of health professionals to make appropriate decisions in the circumstances of the individual patient, in consultation with the patient and/or guardian or carer."

For new adult patients to gain treatment with GH replacement therapy there are two stages in this process:

  1. They need to satisfy these three conditions...
    • They have severe GH deficiency, as measured by biochemical tests, usually the insulin tolerance test.
    • They score at least 11 on the AGHDA questionnaire (25 questions which measure Quality of Life).
    • They are already receiving full replacement with other deficient pituitary hormones.
  2. For them to continue treatment...
    • After a 9-month trial they need to demonstrate a 7-point improvement on their AGHDA questionnaire score.

For current adult patients on GH to continue treatment:
Existing adult patients receiving GH will be reassessed by their endocrinologists as part of their routine care – as happens now.

For adults treated with GH during childhood:
Two main groups are involved - former childhood users of GH reaching the age of 25 and adult survivors of childhood cancer who receive GH treatment. They will need to meet the same criteria as new adult patients following a break in their treatment.

It has been a long and arduous journey …

The Pituitary Foundation’s first experience of a NICE appraisal has not been a good one. Over two and a half years after it started, a long and arduous struggle with two rounds of Appraisal meetings and two Appeals - and an indeterminate amount of stress for GH patients - this left us to believe we have Guidelines that we can live with. A history of that is at…
History of the 2001 – 03 NICE Appraisal of Human Growth Hormone for Adults.

The AGHDA questionnaire

The following is taken from the Foundation’s written input to the 2nd round Appraisal meeting in January 2003.

AGHDA Scores

The AGHDA Questionnaire asks you to say 'yes' if any of the following 25 statements applies to you. Each 'yes' scores 1 point; the higher the score the worse the quality of life.

  1. I have to struggle to finish jobs.
  2. I feel a strong need to sleep during the day.
  3. I often feel lonely even when I am with other people.
  4. I have to read things several times before they sink in.
  5. It is difficult for me to make friends.
  6. It takes a lot of effort for me to do simple tasks.
  7. I have difficulty controlling my emotions.
  8. I often lose track of what I want to say.
  9. I lack confidence.
  10. I have to push myself to do things.
  11. I often feel very tense.
  12. I feel as if I let people down.
  13. I find it hard to mix with people.
  14. I feel worn out even when I've not done anything.
  15. There are times when I feel very low.
  16. I avoid responsibilities if possible.
  17. I avoid mixing with people I don't know well.
  18. I feel as if I'm a burden to people.
  19. I often forget what people have said to me.
  20. I find it difficult to plan ahead.
  21. I am easily irritated by other people.
  22. I often feel too tired to do the things I ought to do.
  23. I have to force myself to do all the things that need doing.
  24. I often have to force myself to stay awake.
  25. My memory lets me down.

If you would like more information about the appraisal then please contact us.

Last Updated ( Friday, 15 September 2006 )