Turner syndrome transition clinic in the West of Scotland : a perspective
Copyright © 2023 Zahra, Sastry, Freel, Donaldson and Mason..
Introduction: Turner Syndrome (TS) is the commonest chromosomal abnormality in females. Establishing and maintaining long-term follow-up after transition to adult endocrine services, to allow for essential lifelong surveillance of hypertension and cardiovascular disease, and optimal hormone replacement, remains a challenge. A TS transition clinic was established with the aim of supporting successful transfer and establishing long-term follow-up in adult endocrine services. Our objectives are to evaluate the success of our TS transition service primarily in achieving and maintaining follow-up after transfer to adult services and to assess the adequacy of health surveillance post-transition with a specific focus on cardiac monitoring and hormone replacement.
Methods: A departmental database was used to identify young people whose care had transferred to adult endocrine services. An electronic case record was utilised to obtain clinic attendance and relevant clinical information on cardiovascular monitoring and hormone replacement therapy (HRT).
Results: Forty-six (n=46) young people transferred to adult endocrine services during the observed 20-year period, 1998-2017. Thirty-six (n=36) had transferred prior to 2015, of whom sixteen (n=16, 44%) are lost to long-term follow-up at 5 years. Overall, 41 (89%) patients have had cardiac imaging surveillance since transferring, However, only 30 (73%) of these were carried out at the recommended frequencies. All 20 women in established follow-up have had cardiac imaging. Five out of the 46 (11%) patients do not have any documented cardiovascular monitoring. Forty (86.9%) women have had a documented BP measurement. Nineteen of the 20 women who are in 5- year established follow-up have a documented blood pressure. Five (11%) women are not on HRT, while two (4%) remain on oestrogen-only HRT. Thirty-seven (80.4%) women are on combined HRT, only eight (21.6%) are on the recommended form of oestradiol. Two (4%) are not on HRT due to normal ovarian function.
Conclusion: A significant proportion of girls with TS are currently lost to adult endocrine services. Strategies to improve long-term endocrine follow-up are needed to ensure lifelong health needs and adequate hormone replacement are met. Whilst similar parameters are monitored in adult endocrine services a group of patients may be at risk of receiving inadequate HRT and developing cardiovascular complications.
| Medienart: |
E-Artikel |
|---|
| Erscheinungsjahr: |
2023 |
|---|---|
| Erschienen: |
2023 |
| Enthalten in: |
Zur Gesamtaufnahme - volume:14 |
|---|---|
| Enthalten in: |
Frontiers in endocrinology - 14(2023) vom: 12., Seite 1233723 |
| Sprache: |
Englisch |
|---|
| Beteiligte Personen: |
Zahra, Baryab [VerfasserIn] |
|---|
| Links: |
|---|
| Themen: |
4TI98Z838E |
|---|
| Anmerkungen: |
Date Completed 19.09.2023 Date Revised 19.09.2023 published: Electronic-eCollection Citation Status MEDLINE |
|---|
| doi: |
10.3389/fendo.2023.1233723 |
|---|
| funding: |
|
|---|---|
| Förderinstitution / Projekttitel: |
|
| PPN (Katalog-ID): |
NLM362174083 |
|---|
| LEADER | 01000naa a22002652 4500 | ||
|---|---|---|---|
| 001 | NLM362174083 | ||
| 003 | DE-627 | ||
| 005 | 20231226090706.0 | ||
| 007 | cr uuu---uuuuu | ||
| 008 | 231226s2023 xx |||||o 00| ||eng c | ||
| 024 | 7 | |a 10.3389/fendo.2023.1233723 |2 doi | |
| 028 | 5 | 2 | |a pubmed24n1207.xml |
| 035 | |a (DE-627)NLM362174083 | ||
| 035 | |a (NLM)37720538 | ||
| 040 | |a DE-627 |b ger |c DE-627 |e rakwb | ||
| 041 | |a eng | ||
| 100 | 1 | |a Zahra, Baryab |e verfasserin |4 aut | |
| 245 | 1 | 0 | |a Turner syndrome transition clinic in the West of Scotland |b a perspective |
| 264 | 1 | |c 2023 | |
| 336 | |a Text |b txt |2 rdacontent | ||
| 337 | |a ƒaComputermedien |b c |2 rdamedia | ||
| 338 | |a ƒa Online-Ressource |b cr |2 rdacarrier | ||
| 500 | |a Date Completed 19.09.2023 | ||
| 500 | |a Date Revised 19.09.2023 | ||
| 500 | |a published: Electronic-eCollection | ||
| 500 | |a Citation Status MEDLINE | ||
| 520 | |a Copyright © 2023 Zahra, Sastry, Freel, Donaldson and Mason. | ||
| 520 | |a Introduction: Turner Syndrome (TS) is the commonest chromosomal abnormality in females. Establishing and maintaining long-term follow-up after transition to adult endocrine services, to allow for essential lifelong surveillance of hypertension and cardiovascular disease, and optimal hormone replacement, remains a challenge. A TS transition clinic was established with the aim of supporting successful transfer and establishing long-term follow-up in adult endocrine services. Our objectives are to evaluate the success of our TS transition service primarily in achieving and maintaining follow-up after transfer to adult services and to assess the adequacy of health surveillance post-transition with a specific focus on cardiac monitoring and hormone replacement | ||
| 520 | |a Methods: A departmental database was used to identify young people whose care had transferred to adult endocrine services. An electronic case record was utilised to obtain clinic attendance and relevant clinical information on cardiovascular monitoring and hormone replacement therapy (HRT) | ||
| 520 | |a Results: Forty-six (n=46) young people transferred to adult endocrine services during the observed 20-year period, 1998-2017. Thirty-six (n=36) had transferred prior to 2015, of whom sixteen (n=16, 44%) are lost to long-term follow-up at 5 years. Overall, 41 (89%) patients have had cardiac imaging surveillance since transferring, However, only 30 (73%) of these were carried out at the recommended frequencies. All 20 women in established follow-up have had cardiac imaging. Five out of the 46 (11%) patients do not have any documented cardiovascular monitoring. Forty (86.9%) women have had a documented BP measurement. Nineteen of the 20 women who are in 5- year established follow-up have a documented blood pressure. Five (11%) women are not on HRT, while two (4%) remain on oestrogen-only HRT. Thirty-seven (80.4%) women are on combined HRT, only eight (21.6%) are on the recommended form of oestradiol. Two (4%) are not on HRT due to normal ovarian function | ||
| 520 | |a Conclusion: A significant proportion of girls with TS are currently lost to adult endocrine services. Strategies to improve long-term endocrine follow-up are needed to ensure lifelong health needs and adequate hormone replacement are met. Whilst similar parameters are monitored in adult endocrine services a group of patients may be at risk of receiving inadequate HRT and developing cardiovascular complications | ||
| 650 | 4 | |a Journal Article | |
| 650 | 4 | |a HRT | |
| 650 | 4 | |a Turner syndrome | |
| 650 | 4 | |a blood pressure | |
| 650 | 4 | |a cardiovascular | |
| 650 | 4 | |a transition | |
| 650 | 7 | |a Estradiol |2 NLM | |
| 650 | 7 | |a 4TI98Z838E |2 NLM | |
| 700 | 1 | |a Sastry, Aparna |e verfasserin |4 aut | |
| 700 | 1 | |a Freel, Marie |e verfasserin |4 aut | |
| 700 | 1 | |a Donaldson, Malcolm |e verfasserin |4 aut | |
| 700 | 1 | |a Mason, Avril |e verfasserin |4 aut | |
| 773 | 0 | 8 | |i Enthalten in |t Frontiers in endocrinology |d 2010 |g 14(2023) vom: 12., Seite 1233723 |w (DE-627)NLM208813357 |x 1664-2392 |7 nnns |
| 773 | 1 | 8 | |g volume:14 |g year:2023 |g day:12 |g pages:1233723 |
| 856 | 4 | 0 | |u http://dx.doi.org/10.3389/fendo.2023.1233723 |3 Volltext |
| 912 | |a GBV_USEFLAG_A | ||
| 912 | |a GBV_NLM | ||
| 951 | |a AR | ||
| 952 | |d 14 |j 2023 |b 12 |h 1233723 | ||