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  1. 1. SPECIALISED SERVICES NATIONAL DEFINITIONS SET (2nd EDITION) Specialised Endocrinology Services (Adult) - Definition No. 27 Preface 36 specialised services are covered by the Specialised Services National Definitions Set (2nd edition). The definitions were developed through national working groups (one for each service). Many clinicians, hospital managers, finance and information staff and commissioners were directly involved in working group meetings and many more provided comments during the consultation stages. Some of the definitions have been endorsed by the relevant national organisations. The definitions identify the activity that should be regarded as specialised and therefore subject to collaborative commissioning arrangements. The definitions provide a helpful basis for service reviews and strategic planning and enable commissioners to establish a broad base-line position and make initial comparisons on activity and spend. It should be noted that, currently, many of the definitions have coding gaps and other information problems as well as a lack of agreed standard service currencies; further work is needed in these areas. Production of the Specialised Services National Definitions Set is an iterative process. Over time new specialised services will be provided by the NHS whilst other services will become more commonplace and cease to be specialised. Each definition is divided into two sections. Section A provides descriptions of the various services covered. In most definitions, the existing pattern or model of service provision is described as well as the clinical service. Each definition includes a list of relevant national guidelines, such as DoH or Royal College of Publications, and identifies any national databases containing health outcomes information. Section A also includes sections on finance and information, examines the best way of identifying the relevant activity in information systems and acknowledges any coding gaps or difficulties. Most of the definitions include a recommended standard currency for the service (eg. banded bed days). Section B includes specific issues considered to be important by the working group concerned. The views expressed in Section B are those of the particular working group and do not necessarily represent opinion within the DoH or the NHS. Resolving these issues is not within the remit of the definitions project. It should be noted that the definitions are not service specifications nor do they prescribe service models or set service standards. Where national standards for a service already exist these may be referred to in the definition but specific decisions regarding the planning and procurement of a specialised service are matters for NHS commissioners themselves to address. Inclusion of a treatment or intervention in a definition should not be taken to mean that there is established evidence of clinical or cost effectiveness. 1
  2. 2. Comments and suggested improvements to the definitions are very welcome and can be sent to the email address: SECTION A 1. General Description Specialised endocrinology services are not available in every local hospital and are provided in hospitals, which take referrals for specialised services from a number of local hospitals. The specialised service therefore provides services to a number of neighbouring PCTs. The service covers:  pituitary and peri-pituitary tumours  hypopituitarism  thyroid malignancy  benign thyroid disease  complicated hypothyroidism and thyrotoxicosis  severe or progressive thyroid associated ophthalmopathy  parathyroid disease  adrenal disease  management of neuro-endocrine tumours  surveillance of adult survivors of childhood and endocrine disease and malignancy  reproductive endocrinology  complex metabolic bone disease  diabetes mellitus  complex hyperlipidaemia  androgen replacement  multiple endocrine neoplasia (MEN) syndromes and other familial endocrine disorders  multi-disciplinary joint services  morbid obesity 2. Rationale for the Service being included in the Specialised Services Definitions Set. The provision of specialised endocrinology services should usually be centralised in one location with clinicians from local hospitals and local GPs referring to the service. In the future clinical services for endocrinology are increasingly likely to be organised within clinical networks. Services will usually be delivered in one location, however this will be dependent upon the distribution of local expertise within a network. 3. Links to Other Services on the Specialised Commissioning List No.1, Specialised Cancer Services (adult) No.4, Specialised Services for Women’s Health (adult) No.8, Specialised Neurosciences Services (adult) – neurosurgery, neurology and 2
  3. 3. ophthalmology-pituitary disease in particular No.20, Medical Genetic Services (all ages) No.23, Specialised Services for Children No.24, Specialised Dermatology Services (adult) No.25, Specialised Pathology Services (all ages) No.30, Specialised Vascular Services (adult) No.35, Specialised Morbid Obesity Services (all ages) 4. Detailed Description of Specialised Activity Diagnosis may occur in primary or secondary care but in the majority of cases patients will normally be referred to the specialised services for further management. Management of these conditions requires a multi-disciplinary approach with appropriate competencies in each of the disciplines concerned. A significant number of these conditions present in childhood, therefore arrangements for transition from paediatric care will need to be carefully managed; in particular adrenal disease, neuro- endocrine tumours, Turner’s syndrome and Type I diabetes. Specialised services are divided by condition groupings and will include: 4.1 Pituitary disease 4.1.1 Pituitary and peri-pituitary tumours  Functioning – e.g. acromegaly, Cushing’s disease, prolactinomas  Functioning - examples include acromegaly, Cushing’s disease, prolactinomas  Non-functioning  Peri-pituitary tumours e.g. meningiomas, glioma, craniopharyngiomas, dysgerminomas  Other pituitary-hypothalamic disease e.g. pituitary sarcoid 4.1.2 Hypopituitarism  Anterior pituitary hormone deficiency which will include growth hormone deficiency  Posterior pituitary hormone deficiency  Diabetes insipidus 4.2 Thyroid and parathyroid associated disease 4.2.1 Thyroid malignancy  Differentiated thyroid carcinoma  Medullary thyroid cancer (link with genetics services and management of multiple endocrine neoplasia)  Other malignancies e.g. thyroid lymphoma, anaplastic carcinoma. These conditions require complex multi-disciplinary management. The above conditions are also included in Definition No 1, Specialised Cancer Services (Adult) for the commissioning of services and are included here for completeness. 3
  4. 4. 4.2.2 Benign thyroid disease Examples include nodular goitre, retrosternal extension, reoperative thyroid surgery. 4.2.3 Complicated hypothyroidism and thyrotoxicosis  Management of thyrotoxicosis in pregnancy  Radio iodine treatment  Surgical management of thyrotoxicosis 4.2.4 Severe or progressive thyroid associated ophthalmopathy Treatments include:  Orbital decompression  Rehabilitative surgery  Corrective surgery 4.2.5 Parathyroid disease Most patients with hyperparathyroidism and hypoparathyroidism should be managed by an endocrinologist or endocrine surgeon. 4.3 Adrenal disease  Functioning adrenal tumours e.g. Conn’s, Phaeochromocytoma, Cushing’s syndrome  Non-functioning adrenal tumours e.g. Adenoma and carcinoma  Primary adrenal failure e.g. Congenital adrenal hyperplasia (CAH), Addison’s disease 4.4 Management of neuro-endocrine tumours  Pancreatic e.g. glucagonomas, insulinomas, gastrinomas  Carcinoid tumours For commissioning purposes these are included in Definition No.1, Specialised Cancer Services (adult). 4.5 Surveillance of adult survivors of childhood malignancy and endocrine disease The services should include planned transition to adult care for children. Examples of conditions will include leukaemia and any tumour for which cranio-spinal irradiation has been given. 4.6 Reproductive endocrinology  Management of pregnant patients with diabetes and other endocrine disease  Management of Turner’s syndrome  Male infertility – sperm storage, sperm antibodies  Some aspects of female infertility, including hypopituitarism, hyperprolactinaemia  Joint management with gynaecologist of ovulation induction, IVF, GIFT, ICSI, donor insemination, and ovarian diathermy 4.7 Complex metabolic bone disease  Cases where diagnosis is problematic and management of complex cases e.g. osteogenesis imperfecta, osteoporosis in young patients and males 4.8 Diabetes mellitus Most diabetes will be dealt with in primary care and local general hospitals. There are, however, a small number of patients who have substantial complications or require specialised treatments. Examples include: 4
  5. 5.  Unpredictable severe hypoglycaemia with or without symptomatic awareness  Recurrent hyperglycaemic coma (so-called brittle diabetes)  Poor glycaemic control despite attempted optimisation of therapy  Consideration, commencement and/or management of continuous subcutaneous insulin infusion  Consideration for continuous monitoring using glucose sensors  Progressive microvascular complications affecting the eye (in conjunction with ophthalmology), kidney (in conjunction with nephrology), peripheral and autonomic nervous system, despite optimal therapy  Uncontrolled hypertension despite optimal therapy  Neurovascular complications of the lower limb including critical ischaemia (in conjunction with vascular surgery), infection and Charcot arthropathy  Complex macrovascular disease affecting coronary and cerebral arteries (in conjunction with cardiology and vascular surgery) 4.9 Complex hyperlipidaemia 4.10 Multiple endocrine neoplasia (MEN) syndromes and other familial endocrine disorders  Links to genetics service for family screening  Links to oncology, specialist pituitary surgery, and pancreatic-biliary surgery  von Hippel Lindau  Neurofibromatosis 4.11 Multi-disciplinary joint services There is substantial input from the specialised endocrinology service to specialised multi-disciplinary joint services, which are organised with:  Surgery  Endocrine surgery  Oncology  Radiotherapy  Neurosurgery  Gynaecology  Rheumatology  Paediatrics 4.12 Morbid obesity Patients who are morbidly obese are often referred to the specialised endocrine service and in some instances the patient may be managed as part of the endocrine service. 4.13 Complex inherited metabolic disease The incidence of these conditions is very low, and the services provided in one location are likely to cover the populations of a number of strategic health authorities. Examples include Fabry’s disease, Gaucher’s disease. 5. Recommended Units of Activity / Currency Measurement The recommended units of activity are:  inpatient episodes (Finished Consultant Episodes) 5
  6. 6.  outpatient attendances Minimum data sets can be obtained for units of activity, including a diagnosis and procedure/operation code for day cases and inpatient episodes. It is important, especially in outpatient settings that when patients are seen by other professionals within the multi-disciplinary team, that all of the activity is recorded. With regard to inpatient activity there are no OPCS 4 codes available for some procedures, an example being reoperative endocrine surgery, as the OPCS 4 code only indicates a surgical procedure. Attached is an Appendix, which lists both OPCS 4 and ICD 10 codes that identify the majority of specialised endocrinology diseases. 6. Elements of Service / Guidance for Costing Detailed, accurate costs for specialised endocrinology for both inpatient/daycases and outpatient services are important. Health Resource Groups (HRGs) are available for day case and inpatient costs. Outpatient activity needs to differentiate between a first outpatient attendance, and subsequent attendances; and the costs of investigations and imaging associated with the outpatient services should be included. Currently, there are no HRGs for outpatient attendances. With regard to endocrine disorders in pregnancy, a woman may wish to have her baby delivered in the local general hospital, and if jointly the obstetrician and endocrinologist agree with her wish, then the costs of the endocrinology service, supporting the obstetric service should be identified separately. There are some treatments, which include the use of high cost drugs and therapies, and in such instances service agreements for individual named patients may be appropriate. 7. Recommended National Standards, Guidelines, Protocols, References  Consensus Statement for Good Practice and Audit Measures in the Management of Hypothyroidism and Hyperthyroidism. British Medical Journal 1996; 313: 539-543, Vanderpump MPJ, Ahlquist JAO, Franklyn JA, Clayton RN  Pituitary Tumours – Recommendations for Service Provision and Guidelines for Management of Patients, Royal College of Physicians, 1997  Guidelines for the Management of Thyroid Cancer in Adults, Royal College of Physicians, 2002  The use of Somatostatin in Analogues in Patients with Acromegaly – A Position Statement from the Society for Endocrinology, November 2000  Guidelines for Diagnosis and Therapy of MEN Type 1 and Type 2, Society for Endocrinology, 2001 6
  7. 7.  Guidelines for the Surgical Management of Endocrine Disease and Training Requirements for Endocrine Surgery, British Association of Endocrine Surgeons, 2000  The Use of Growth Hormone Replacement in Adult Patients with Severe Growth Hormone Deficiency – A Position Statement from the Society for Endocrinology, October 2000 7
  8. 8. Appendix Specialised Endocrinology Services Pituitary disease ICD 10 codes TSH-oma Pituitary tumour secretion C75.3 Pineal gland (malignant) C79.8 Secondary malignant neoplasm of other specified site D35.4 Pineal gland (benign) D44.5 Pineal gland (uncertain/unknown behaviour) (with functional activity e.g. E05.8) D35.2 Prolactinoma E22.0 Acromegaly E24 Cushing’s disease E24.1 Nelson’s syndrome Non-functioning adenoma – no code Gonadotrophinoma – no code Hypothalamic disorders E23.0 Kallmann’s syndrome E23.0 Isolated hypog hypog E23.2 Diabetes insipidus N25.1 Nephrogenic diabetes insipidus E28.8 Functional amenorrhoea F50.0 Anorexia nervosa Q87.1 Prader-Willi R63.2 Hyperphagia Adipsia – no code AHC – no code 8
  9. 9. Appendix Tumours of sella region Pineal tumour C75.3 Pineal gland (malignant) C79.8 Secondary malignant neoplasm of other specified site D35.4 Pineal gland (benign) D44.5 Pineal gland (uncertain/unknown behaviour) (E34.8 only included if functional activity) D32, M9530/0 Meningioma D35.2 Pituitary Adenoma: Microadenoma Mesoadenoma Macroadenoma Proximity to optic chiasm visual field defect (H53.4, D35.2) Cavernous sinus involvement ocular-motor palsy (H49.0, D35.2) D35.3 Rathke’s cleft cyst D44.1 Craniopharyngeoma M9060/3 Dysgerminoma - coded to site malignant or if site unspecified male C62.9/female C56.X M9370/3 Chordoma - need site M938-948, C71 Glioma - need specified site or C71.9 OPCS 4 codes B01.1 Transethmoidal hypophysectomy Excision of pituritary gland - B01 B01.2 Transphenoidal hypophysectomy B01.3 Transseptal hypophysectomy B01.4 Transcranial hypophysectomy B01.8 Other specified B01.9 Unspecified Includes: Hypophysectomy nec Destruction of pituitary gland - B02 B02.1 Cryotherapy to pituitary gland B02.2 Implantation of radioactive substance into pituitary gland B02.3 Injection of destructive substance into pituitary gland nec B02.8 Other specified B02.9 Unspecified 9
  10. 10. Appendix Other operations on pituitary gland B04.1 Excision of lesion of pituitary gland - B04 B04.2 Biopsy of lesion of pituitary gland Includes: Biopsy of pituitary gland B04.3 Decompression of pituitary gland B04.4 Exploration of pituitary gland B04.5 Operations on pituitary stalk B04.8 Other specified B04.9 Unspecified ICD 10 codes C25.4 Glucagonoma malignant pancreas Endocrine tumours Specified site or unspecified C25.4 Insulinoma malignant pancreas Specified site or unspecified C25.4 Gastrinoma malignant pancreas Specified site or unspecified APUDoma – no code E34.0 Carcinoid syndrome C16.9 Stomach C25.9 Pancreas C34.9 Chest D37.3 Appendix Thyroid and parathyroid associated disease OPCS 4 codes B08.1 Total thyroidectomy Excision of thyroid gland - B08 B08.2 Subtotal thyroidectomy B08.3 Hemithyroidectomy B08.4 Lobectomy of thyroid gland nec B08.5 Isthmectomy of thryoid gland B08.6 Partial thyroidectomy nec B08.8 Other specified B08.9 Unspecified Includes: Thyroidectomy nec Operations on aberrant thyroid B09.1 Excision of substernal thyroid tissue tissue - B09 B09.2 Excision of sublingual thyroid tissue B09.8 Other specified B09.9 Unspecified Other operations on thyroid gland - B12.1 Excision of lesion of thyroid gland B12 B12.2 Biopsy of lesion of thyroid gland Includes: Biopsy of thyroid gland B12.3 Incision of lesion of thyroid gland B12.4 Exploration of thyroid gland B12.8 Other specified B12.9 Unspecified 10
  11. 11. Appendix ICD 10 codes C73 (M8050/3) Papillary Thyroid cancer - C73 malignant C73 (M8330/3) Follicular neoplasm of thyroid gland C73 Mixed C73 (M8021/3) Anaplastic C73 (M8510/3) Medullary C85.9 (M9590/3) Lymphoma Other thyroid - E07.8 E07.8 Thyroid hormone resistance E07.8 Sick euthyroid syndrome Thyroid nodule(s) E04.0 Simple/colloid E04.1 Euthyroid single thyroid nodule E04.2 Euthyroid multinodular goitre Thyroiditis E06.0 Viral E06.3 Hashimoto’s E06.4 Drug-induced E06.5 Riedel’s O90.5 Post-partum Thyrotoxicosis E05.0 Graves’ disease E05.1 Solitary hot nodule E05.2 Toxic multinodular goitre E05.8, Y52.2 Amiodarone-induced E05.8, Y56.0/Y57.6 Iodine- induced E05, H06.2A Thyroid-associated orbitopathy Hypothyroidism E03.0/E07.1 Dyshormonogenesis E03.1 Congenital E03.2, Y42.2 Carbimazole/PTU-induced? E03.2, Y52.2 Amiodarone-induced E03.2, E89.0 Post-surgery E03.9 Primary E89.0 Post-radioiodine Compensated – no code OPCS 4: B14.1 Global parathyroidectomy and Excision of parathyroid gland - B14 transposition of parathyroid tissue B14.2 Global parathyroidectomy nec B14.3 Partial parathyroidectomy and transposition of parathyroid tissue B14.4 Partial parathyroidectomy nec B14.5 Excision of lesion of parathyroid gland B14.8 Other specified B14.9 Unspecified Includes: Parathyroidectomy nec 11
  12. 12. Appendix Other operations on parathyroid B16.1 Modification of transposed gland - B16 parathyroid gland B16.2 Biopsy of lesion of parathyroid gland Includes: Biopsy of parathyroid gland B16.3 Exploration of parathyroid gland B16.8 Other specified B16.9 Unspecified Adrenal Disease OPCS 4 codes B22.1 Bilateral adrenalectomy and Excision of adrenal gland - B22 transposition of adrenal tissue B22.2 Bilateral adrenalectomy nec B22.3 Unilateral adrenalectomy Includes: Adrenalectomy nec B22.4 Partial adrenalectomy B22.8 Other specified B22.9 Unspecified Operations on aberrant adrenal B23.1 Excision of lesion of aberrant adrenal tissue - B23 tissue B23.2 Exploration of aberrant adrenal tissue B23.8 Other specified B23.9 Unspecified Other operations on adrenal gland - B25.1 Excision of lesion of adrenal gland B25 B25.2 Biopsy of lesion of adrenal gland Includes: Biopsy of adrenal gland B25.3 Embolisation of adrenal gland B25.4 Exploration of adrenal gland B25.8 Other specified B25.9 Unspecified ICD 10 codes A18.7D, E35.1A Tuberculous Addison’s Hypoadrenalism E25.0 CAH (21-hydroxylase) E25.8/9 CAH (others) E27.1 Autoimmune Addison’s E27.3 Drug-induced AHC – no code Adrenal tumour/hyperfunction C74.- Adrenal carcinoma C74.1 Phaeochromocytoma (if malignant site unspecified coded to be benign D35.0) D35.0 Non-functional adrenal adenoma E24.3 Ectopic ACTH secretion E24.4 Pseudo-Cushing’s, alcohol induced E24.8 10 adrenocortical Cushing’s E26.0 Conn’s syndrome 12
  13. 13. Appendix Reproductive endocrinology ICD 10: E28.3 Premature ovarian failure E89.4 Post-chemo E89.4 Post-surgery E89.4 Post-radiotherapy 10 gonadal failure E29.1 10 testicular failure E89.5 Post-chemo E89.5 Post-surgery E89.5 Post-radiotherapy E98.0/1/2/4 Klinefelter’s G71.1 Dystrophia myotonica Q96.0 Turner’s syndrome Q99.1, Q96.9 XY gonadal dysgenesis Q99.1, Q96.9 XX gonadal dysgenesis Other Complete androgen-insensitivity syndrome – no code Partial androgen-insensitivity syndrome – no code E28.2 Polycystic ovary syndrome E30.0 Pubertal delay Constitutional Systemic disease Nutritional Miscellaneous E30.1 Precocious puberty F52.2 Erectile dysfunction (nonorganic) Q51.0, Q52.0 Mullerian agenesis N62 Gynaecomastia N64.3 Galactorrhoea N91.0 10 amenorrhoea N91.1 20 amenorrhoea Metabolic disease ICD 10 codes M81.0 +5th Digit Post-menopausal Osteoporosis (M81.9) M81.1 +5th Digit Post-gonadectomy M81.4 +5th Digit Steroid-induced Hypercalcaemia E21.0 10 hyperparathyroidism C00-D48, E83.5 Malignancy-associated E83.5 Familial hypocalciuric Hyponatraemia E22.2 SIADH E86 Volume depletion R63.1 10 polydipsia Glucose metabolism E10.- Type 1 diabetes E11.- Type 2 diabetes IGT – no code 13
  14. 14. Appendix Multiple endocrine neoplasia (MEN) syndromes and other familial endocrine disorders ICD 10 codes C56 Ovarian cancer (malignant) C62.9 Testicular cancer (malignant) D44.8 MEN 1 D44.8 MEN2 Q85.0 Neurofibromatosis (non-malignant) Q85.8 Von Hippel-Lindau Complex inherited metabolic disease ICD 10 codes Fabry’s disease E75.2 Note 1. In some circumstances, e.g. in metabolic disease or reproductive endocrinology, the diagnosis would be classified as a specialised endocrine service, when a primary diagnosis is given. In addition some of the diagnoses could be a secondary complication of another primary endocrine disease, e.g. Cushing’s syndrome, Prader Willi syndrome. 2. Non endocrine tumours will be a primary diagnosis, with endocrine diagnoses secondary. 14