THU212 Exploring The Experiences Of Adult Patients With Turner Syndrome At A Multidisciplinary Clinic
Notice bibliographique
Résumé
Abstract Disclosure: S. Shin: Grant Recipient; Self; Canadian Menopause Society Pfizer Research Award. L. Liang: None. C. Korenvain: None. L. McCarthy: None. I.C. Lega: None. Context: Turner syndrome (TS), a genetic condition affecting 1 in 2500 live female births, is associated with short stature, infertility, and premature menopause. Patients with TS are often followed by multidisciplinary clinics as children, but such care is often lacking in adulthood. A multidisciplinary clinic in Canada fills this gap, providing dual visits with an endocrinologist and gynecologist. There is a paucity of research exploring the experiences of adults with TS with respect to menopause and fertility, and the perceived impact of a multidisciplinary team. Objective: To explore the experiences of adults with TS regarding 1) reproductive health and menopause, and 2) interacting with a multidisciplinary team for the management of TS. Methods: Qualitative semi-structured interviews were conducted with 21 adult TS patients who attend a multidisciplinary TS clinic. Interviews were transcribed verbatim and coded by two independent researchers. A codebook was developed using an iterative process with input from the entire research team. Themes were generated using thematic analysis. Results: Twenty-one participants aged 20 to 65 were interviewed and five themes emerged from the data. 1) Participants’ differing feelings toward fertility status. Experience with fertility differed widely and was affected by the timing of diagnosis, how the diagnosis was communicated, and feelings toward having children. 2) Resiliency. Participants sought ways to adapt to living with TS, striving towards resilience by leaning on support from family and others with TS. 3) Involvement in one’s own care. Many participants were actively engaged in their care and sought support in learning more about their condition. 4) Desire for comprehensive health care. Many participants felt the multidisciplinary TS clinic was knowledgeable, convenient, and effective in managing their comorbidities. 5) Barriers to accessing health care. Participants identified challenges in accessing health care providers with TS expertise, in navigating the financial burden involved in comprehensive TS care, and in accessing inclusive care. Conclusion: Infertility appeared to have a variable impact on participants, ranging from those who felt it was an important aspect in developing their self-identity to those who felt it had little impact. Our research highlights the importance of using a tailored approach to providing fertility care. Participants desired to be actively involved in their own healthcare and for further access to educational resources. The participants greatly appreciated the care provided in the multidisciplinary care model and called for further capacity building in TS expertise among all healthcare providers. To improve the care of our TS patients, our findings support the demand/need for additional TS-specific clinics across the world. Presentation: Thursday, June 15, 2023
Récupéré en direct depuis OpenAlex et désinversé. Les résumés ne sont pas conservés dans cette base de données : les index inversés représentent 8,6 Go des 9,3 Go de texte de la base, et le serveur dispose de 13 Go libres.
Comment cette classification a été obtenuedéplier
Prédiction machine sur la base complète
Imitation des enseignantsNi prévalence calibrée, ni vérité terrain. Validation humaine à venir. Le volet Gemma est une étiquette directe du modèle pour chaque travail de la base, lue sur la notice réduite au titre. Le volet Codex est un classifieur appris des 10 348 étiquettes directes de Codex et calibré sur les taux pondérés de l'échantillon; les champs sans appui suffisant ne portent aucun appel Codex. Le mode candidate est l'union des deux volets; le consensus est leur intersection. Ces sorties portent le statut machine_predicted_unvalidated et ne sont pas des étiquettes humaines.
Scores du classifieur distillé par catégorie (deux têtes)
| Catégorie | Codex | Gemma |
|---|---|---|
| Métarecherche | 0,005 | 0,007 |
| Méta-épidémiologie (sens strict) | 0,000 | 0,000 |
| Méta-épidémiologie (sens large) | 0,000 | 0,000 |
| Bibliométrie | 0,000 | 0,001 |
| Études des sciences et des technologies | 0,007 | 0,004 |
| Communication savante | 0,003 | 0,002 |
| Science ouverte | 0,001 | 0,005 |
| Intégrité de la recherche | 0,001 | 0,002 |
| Charge utile insuffisante (le modèle a refusé de juger) | 0,004 | 0,000 |
Scores machine (provisoires)
Les deux têtes enseignantes du modèle étudiant, lues sur ce travail. Un score ordonne la base pour la relecture; il n'affirme jamais une catégorie, et le statut de validation accompagne chaque rangée tel quel.
Scores de référence d'un modèle non mature (critères de maturité non atteints, 7 itérations). Un score ordonne; il n'affirme jamais une catégorie.
score_only:v0-immature-baseline · tel quel depuis la passe de notation : score_only signifie que le nombre peut ordonner les travaux, et qu'aucune étiquette de catégorie n'en découleClassification
machine, non validéePrédiction automatique; un appel candidat d’une seule source (Gemma direct ou Codex distillé), pas un consensus.
Le détail, modèle par modèle et score par score, se trouve en fin de page sous « Comment cette classification a été obtenue ».