Pituitary最新文献

{"title":"Pituitary hypophysitis in granulomatosis with polyangiitis (GPA): a case series.","authors":"Majid Alameri, Abdulla Alnuaimi, Niamh M Martin, Karim Meeran, Anastasia Gontsarova, Tara D Barwick, Spencer Ellis, Stephen McAdoo, James Tomlinson, Florian Wernig","doi":"10.1007/s11102-023-01378-5","DOIUrl":"10.1007/s11102-023-01378-5","url":null,"abstract":"<p><p>Granulomatosis with polyangiitis (GPA) rarely involves the pituitary gland. Pituitary involvement has been reported in ~ 1% of all cases of GPA. Most commonly, pituitary swelling and inflammation results in symptoms due to pituitary mass effect and arginine vasopressin deficiency. To date, there are no pituitary-specific treatment guidelines for this rare condition. We present three patients with GPA-related hypophysitis highlighting the spectrum of pituitary involvement. All three patients were successfully treated with immunosuppressive regimens that included rituximab (RTX). Following remission induction with high-dose glucocorticoids, patients received 6 monthly RTX for remission maintenance. RTX was well tolerated without significant side effects.</p>","PeriodicalId":20202,"journal":{"name":"Pituitary","volume":null,"pages":null},"PeriodicalIF":3.8,"publicationDate":"2024-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11009729/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139651527","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Correction: Impulse control disorders in patients with dopamine agonist-treated pituitary adenomas: a cross-sectional multicenter study.","authors":"Mussa H Almalki, Moayad A Alsuraikh, Eyad Almalki, Faisal Aziz, Raya Almazrouei, Khaled M AlDahmani, Fahad Alshahrani, Meshal Alaqeel, Moeber Mahzari, Aishah Ekhzaimy","doi":"10.1007/s11102-024-01390-3","DOIUrl":"10.1007/s11102-024-01390-3","url":null,"abstract":"","PeriodicalId":20202,"journal":{"name":"Pituitary","volume":null,"pages":null},"PeriodicalIF":3.8,"publicationDate":"2024-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140120385","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Impulse control disorders in patients with dopamine agonist-treated pituitary adenomas: a cross-sectional multicenter study.","authors":"Mussa H Almalki, Moayad A Alsuraikh, Eyad Almalki, Faisal Aziz, Raya Almazrouei, Khaled M AlDahmani, Fahad Alshahrani, Meshal Alaqeel, Moeber Mahzari, Aishah Ekhzaimy","doi":"10.1007/s11102-024-01383-2","DOIUrl":"10.1007/s11102-024-01383-2","url":null,"abstract":"<p><strong>Background: </strong>Impulse control disorders (ICDs) have been described as underrecognized side effects of dopamine agonists (DAs) in neurological disorders but are not sufficiently understood in endocrine conditions.</p><p><strong>Objective: </strong>To identify the prevalence of DAs induced ICDs and determine potential risk factors related to these disorders in patients with prolactinoma and non-function pituitary adenomas (NFPAs).</p><p><strong>Methods: </strong>This is a cross-sectional multicenter study involving 200 patients with prolactinoma and NFPAs, who received follow-ups in tertiary referral centers. DA-induced ICDs were assessed using ICD questionnaires modified from prior studies.</p><p><strong>Result: </strong>At least one ICD was reported by 52% of participants, among whom 28.5% mentioned compulsive shopping, 24.5% punding, and 24.5% hypersexuality. Furthermore, 33% of the patients reported the presence of one type of ICD behavior, while 12% specified two and 7% had three types of such behavior. The multivariable logistic regression showed that the significant risk factors of ICD were younger age (adjusted odds ratio [AOR]: 0.92, 95% confidence interval [CI]: 0.88-0.97, p 0.001), being single (AOR: 0.15, 95%CI: 0.03-0.84, p 0.03), and a positive history of psychiatric illness (AOR: 7.67, 95% CI: 1.37-42.97, p 0.021).</p><p><strong>Conclusion: </strong>ICDs with a broad range of psychiatric symptoms are common in individuals with DA-treated prolactinoma and NFPAs. Endocrinologists should be aware of this potential side effect, particularly in patients with a personal history of psychiatric disorder.</p>","PeriodicalId":20202,"journal":{"name":"Pituitary","volume":null,"pages":null},"PeriodicalIF":3.8,"publicationDate":"2024-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139723717","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Elevated risk of recurrence and retreatment for silent pituitary adenomas.","authors":"Saksham Gupta, Samantha E Hoffman, Neel H Mehta, Blake Hauser, Marcelle Altshuler, Joshua D Bernstock, Timothy R Smith, Omar Arnaout, Edward R Laws","doi":"10.1007/s11102-024-01382-3","DOIUrl":"10.1007/s11102-024-01382-3","url":null,"abstract":"<p><strong>Purpose: </strong>Pituitary adenomas are the most common tumor of the pituitary gland and comprise nearly 15% of all intracranial masses. These tumors are stratified into functional or silent categories based on their pattern of hormone expression and secretion. Preliminary evidence supports differential clinical outcomes between some functional pituitary adenoma (FPA) subtypes and silent pituitary adenoma (SPA) subtypes.</p><p><strong>Methods: </strong>We collected and analyzed the medical records of all patients undergoing resection of SPAs or FPAs from a single high-volume neurosurgeon between 2007 and 2018 at Brigham and Women's Hospital. Descriptive statistics and the Mantel-Cox log-rank test were used to identify differences in outcomes between these cohorts, and multivariate logistic regression was used to identify predictors of radiographic recurrence for SPAs.</p><p><strong>Results: </strong>Our cohort included 88 SPAs and 200 FPAs. The majority of patients in both cohorts were female (48.9% of SPAs and 63.5% of FPAs). SPAs were larger in median diameter than FPAs (2.1 cm vs. 1.2 cm, p < 0.001). The most frequent subtypes of SPA were gonadotrophs (55.7%) and corticotrophs (30.7%). Gross total resection (GTR) was achieved in 70.1% of SPA resections and 86.0% of FPA resections (p < 0.001). SPAs had a higher likelihood of recurring (hazard ratio [HR] 3.2, 95% confidence interval [95%CI] 1.6-7.2) and a higher likelihood of requiring retreatment for recurrence (HR 2.5; 95%CI 1.0-6.1). Subset analyses revealed that recurrence and retreatment were more both likely for subtotally resected SPAs than subtotally resected FPAs, but this pattern was not observed in SPAs and FPAs after GTR. Among SPAs, recurrence was associated with STR (odds ratio [OR] 9.3; 95%CI 1.4-64.0) and younger age (OR 0.92 per year; 95%CI 0.88-0.98) in multivariable analysis. Of SPAs that recurred, 12 of 19 (63.2%) were retreated with repeat surgery (n = 11) or radiosurgery (n = 1), while the remainder were observed (n = 7).There were similar rates of recurrence across different SPA subtypes.</p><p><strong>Conclusion: </strong>Patients undergoing resection of SPAs should be closely monitored for disease recurrence through more frequent clinical follow-up and diagnostic imaging than other adenomas, particularly among patients with STR and younger patients. Several patients can be observed after radiographic recurrence, and the decision to retreat should be individualized. Longitudinal clinical follow-up of SPAs, including an assessment of symptoms, endocrine function, and imaging remains critical.</p>","PeriodicalId":20202,"journal":{"name":"Pituitary","volume":null,"pages":null},"PeriodicalIF":3.8,"publicationDate":"2024-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11014773/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139723716","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Successful treatment of medically and surgically refractory lymphocytic hypophysitis with fractionated stereotactic radiotherapy: a single-center experience and systematic literature review.","authors":"Mehdi Khaleghi, Guilherme Finger, Kyle C Wu, Vikas Munjal, Luma Ghalib, Peter Kobalka, Dukagjin Blakaj, Khaled Dibs, Ricardo Carrau, Daniel Prevedello","doi":"10.1007/s11102-023-01367-8","DOIUrl":"10.1007/s11102-023-01367-8","url":null,"abstract":"<p><strong>Purpose: </strong>To explore the potential role of focused radiotherapy in managing the lymphocytic hypophysitis (LH) refractory to medical therapy and surgery.</p><p><strong>Method: </strong>A systematic literature review was conducted following PRISMA guidelines to identify the studies on radiation treatment for hypophysitis, along with the experience in our institution.</p><p><strong>Results: </strong>The study included eight patients, three from our institution and five from existing literature. The age at presentation ranged from 37 to 75 years old, with a median age of 58. The presenting symptoms involved headache in seven patients and diplopia in two patients. Pre-radiation visual field defects were noticed in four patients. All patients exhibited variable degrees of hypopituitarism before radiation, with oral corticosteroids being the initial medical treatment. Immunosuppressive therapy was attempted in two patients prior to radiation. Seven patients had a history of transsphenoidal surgery with a histologically confirmed LH. Three patients underwent stereotactic radiosurgery (SRS), while the remaining received FSRT, with a mean irradiation volume of 2.2 cm³. A single-session total dose of 12 -15 Gy was administered in the SRS group. In the FSRT group, doses ranged from 24 to 30 Gy with a median dose of 25 Gy, delivered in 2 Gy fractions. Four patients achieved a resolution of visual field defects, while another two patients demonstrated improvement in their associated focal neurologic deficits. No change in pre-existing endocrine status was shown after radiation, except in one patient. Clinical response was achieved in seven patients after a single course of radiation, while one patient required the second course. Six patients remained stable on low-dose glucocorticoid during at least a 12-month follow-up period, and one discontinued it entirely without experiencing relapse. Three patients demonstrated a complete radiologic response, while the remaining showed a partial radiologic response.</p><p><strong>Conclusions: </strong>Focused radiation, including FSRT, can play a role in symptomatic relief, effective mass shrinkage, and minimizing radiation exposure to critical surrounding structures in patients with refractory LH. However, further research efforts are necessary to better clarify its effects and optimal dose planning.</p>","PeriodicalId":20202,"journal":{"name":"Pituitary","volume":null,"pages":null},"PeriodicalIF":3.3,"publicationDate":"2024-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139545840","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Glucose intolerance in acromegaly is driven by low insulin secretion; results from an intravenous glucose tolerance test.","authors":"Laura Georgiana Zaifu, Dan Alexandru Niculescu, Andreea Elena Kremer, Andra Caragheorgheopol, Mariana Sava, Carmen Nicoleta Iordachescu, Roxana Dusceac, Iulia Florentina Burcea, Catalina Poiana","doi":"10.1007/s11102-024-01386-z","DOIUrl":"10.1007/s11102-024-01386-z","url":null,"abstract":"<p><strong>Purpose: </strong>Insulin sensitivity (S_i) and its role in glucose intolerance of acromegaly has been extensively evaluated. However, data on insulin secretion is limited. We aimed to assess stimulated insulin secretion using an intravenous glucose tolerance test (IVGTT) in active acromegaly.</p><p><strong>Methods: </strong>We performed an IVGTT in 25 patients with active acromegaly (13 normal glucose tolerance [NGT], 6 impaired glucose tolerance [IGT] and 6 diabetes mellitus [DM]) and 23 controls (8 lean NGT, 8 obese NGT and 7 obese IGT). Serum glucose and insulin were measured at 20 time points along the test to calculate S_i and acute insulin response (AIRg). Medical treatment for acromegaly or diabetes was not allowed.</p><p><strong>Results: </strong>In acromegaly, patients with NGT had significantly (p for trend < 0.001) higher AIRg (3383 ± 1082 pmol*min/L) than IGT (1215 ± 1069) and DM (506 ± 600). AIRg was higher in NGT (4764 ± 1180 pmol*min/L) and IGT (3183 ± 3261) controls with obesity than NGT (p = 0.01) or IGT (p = 0.17) acromegaly. S_i was not significantly lower in IGT (0.68 [0.37, 0.88] 10⁶*L/pmol*min) and DM (0.60 [0.42, 0.84]) than in NGT (0.81 [0.58, 1.55]) patients with acromegaly. NGT (0.33 [0.30, 0.47] 10⁶*L/pmol*min) and IGT (0.37 [0.21, 0.66]) controls with obesity had lower S_i than NGT (p = 0.001) and IGT (p = 0.43) acromegaly.</p><p><strong>Conclusion: </strong>We demonstrated that low insulin secretion is the main driver behind glucose intolerance in acromegaly. Compared to NGT and IGT controls with obesity, patients with NGT or IGT acromegaly had higher S_i. Together, these findings suggest that impaired insulin secretion might be a specific mechanism for glucose intolerance in acromegaly.</p>","PeriodicalId":20202,"journal":{"name":"Pituitary","volume":null,"pages":null},"PeriodicalIF":3.8,"publicationDate":"2024-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139913266","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Current status of artificial intelligence technologies in pituitary adenoma surgery: a scoping review.","authors":"Seyed Farzad Maroufi, Yücel Doğruel, Ahmad Pour-Rashidi, Gurkirat S Kohli, Colson Tomberlin Parker, Tatsuya Uchida, Mohamed Z Asfour, Clara Martin, Mariagrazia Nizzola, Alessandro De Bonis, Mamdouh Tawfik-Helika, Amin Tavallai, Aaron A Cohen-Gadol, Paolo Palmisciano","doi":"10.1007/s11102-023-01369-6","DOIUrl":"10.1007/s11102-023-01369-6","url":null,"abstract":"<p><strong>Purpose: </strong>Pituitary adenoma surgery is a complex procedure due to critical adjacent neurovascular structures, variations in size and extensions of the lesions, and potential hormonal imbalances. The integration of artificial intelligence (AI) and machine learning (ML) has demonstrated considerable potential in assisting neurosurgeons in decision-making, optimizing surgical outcomes, and providing real-time feedback. This scoping review comprehensively summarizes the current status of AI/ML technologies in pituitary adenoma surgery, highlighting their strengths and limitations.</p><p><strong>Methods: </strong>PubMed, Embase, Web of Science, and Scopus were searched following the PRISMA-ScR guidelines. Studies discussing the use of AI/ML in pituitary adenoma surgery were included. Eligible studies were grouped to analyze the different outcomes of interest of current AI/ML technologies.</p><p><strong>Results: </strong>Among the 2438 identified articles, 44 studies met the inclusion criteria, with a total of seventeen different algorithms utilized across all studies. Studies were divided into two groups based on their input type: clinicopathological and imaging input. The four main outcome variables evaluated in the studies included: outcome (remission, recurrence or progression, gross-total resection, vision improvement, and hormonal recovery), complications (CSF leak, readmission, hyponatremia, and hypopituitarism), cost, and adenoma-related factors (aggressiveness, consistency, and Ki-67 labeling) prediction. Three studies focusing on workflow analysis and real-time navigation were discussed separately.</p><p><strong>Conclusion: </strong>AI/ML modeling holds promise for improving pituitary adenoma surgery by enhancing preoperative planning and optimizing surgical strategies. However, addressing challenges such as algorithm selection, performance evaluation, data heterogeneity, and ethics is essential to establish robust and reliable ML models that can revolutionize neurosurgical practice and benefit patients.</p>","PeriodicalId":20202,"journal":{"name":"Pituitary","volume":null,"pages":null},"PeriodicalIF":3.3,"publicationDate":"2024-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139111152","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Basal cortisol in relation to metyrapone confirmation in predicting adrenal insufficiency after pituitary surgery.","authors":"Pieter E Huisman, Sarah E Siegelaar, Jantien Hoogmoed, René Post, Shariefa Peters, Moniek Houben, Jacquelien J Hillebrand, Peter H Bisschop, Alberto M Pereira, Eveline Bruinstroop","doi":"10.1007/s11102-023-01374-9","DOIUrl":"10.1007/s11102-023-01374-9","url":null,"abstract":"<p><strong>Purpose: </strong>Pituitary surgery can lead to post-surgical adrenal insufficiency with the need for glucocorticoid replacement and significant disease related burden. In patients who do not receive hydrocortisone replacement before surgery, at our center, an early morning plasma cortisol concentration using a cut-off value of 450 nmol/L 3 days after surgery (POD3) is used to guide the need for hydrocortisone replacement until dynamic confirmatory testing using metyrapone. The aim of this study was to critically assess the currently used diagnostic and treatment algorithm in patients undergoing pituitary surgery in our pituitary reference center.</p><p><strong>Methods: </strong>Retrospective analysis of all patients with a POD3 plasma cortisol concentration < 450 nmol/L who received hydrocortisone replacement and a metyrapone test after 3 months. Plasma cortisol concentration was measured using an electrochemiluminescence immunoassay (Roche). All patients who underwent postoperative testing using metyrapone at Amsterdam UMC between January 2018 and February 2022 were included. Patients with Cushing's disease or those with hydrocortisone replacement prior to surgery were excluded.</p><p><strong>Results: </strong>Ninety-five patients were included in the analysis. The postoperative cortisol concentration above which no patient had adrenal insufficiency (i.e. 11-deoxycortisol > 200 nmol/L) was 357 nmol/L (Sensitivity 100%, Specificity 31%, PPV:32%, NPV:100%). This translates into a 28% reduction in the need for hydrocortisone replacement compared with the presently used cortisol cut-off value of 450 nmol/L.</p><p><strong>Conclusion: </strong>Early morning plasma cortisol cut-off values lower than 450 nmol/L can safely be used to guide the need for hydrocortisone replacement after pituitary surgery.</p>","PeriodicalId":20202,"journal":{"name":"Pituitary","volume":null,"pages":null},"PeriodicalIF":3.8,"publicationDate":"2024-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11009774/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139502964","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Diffusion-weighted imaging does not seem to be a predictor of consistency in pituitary adenomas.","authors":"Monique Alvares Barbosa, Eduardo Giardini Rodovalhe Pereira, Paulo José da Mata Pereira, André Accioly Guasti, Felipe Andreiuolo, Leila Chimelli, Leandro Kasuki, Nina Ventura, Monica R Gadelha","doi":"10.1007/s11102-023-01377-6","DOIUrl":"10.1007/s11102-023-01377-6","url":null,"abstract":"<p><strong>Purpose: </strong>To prospectively evaluate the usefulness of T1-weighted imaging (T1WI) and diffusion-weighted imaging (DWI) sequences in predicting the consistency of macroadenomas. In addition, to determine their values ​​as prognostic factors of surgical outcomes.</p><p><strong>Methods: </strong>Patients with pituitary macroadenoma and surgical indication were included. All patients underwent pre-surgical magnetic resonance imaging (MRI) that included the sequences T1WI before and after contrast administration and DWI with the apparent diffusion coefficient (ADC) map. Post-surgical MRI was performed at least 3 months after surgery. The consistency of the macroadenomas was evaluated at surgery, and they were grouped into soft and intermediate/hard adenomas. Mean ADC values, signal on T1WI and the ratio of tumor ADC values ​​to pons (ADC_R) were compared with tumor consistency and grade of surgical resection.</p><p><strong>Results: </strong>A total of 80 patients were included. A softened consistency was found at surgery in 53 patients and hardened in 27 patients. The median ADC in the soft consistency group was 0.532 × 10^-3 mm²/sec (0.306 - 1.096 × 10^-3 mm²/sec), and in the intermediate/hard consistency group was 0.509 × 10^-3 mm²/sec (0.308 - 0.818 × 10^-3 mm²/sec). There was no significant difference between the median values ​​of ADC, ADC_R and signal on T1W between the soft and hard tumor groups, or between patients with and without tumor residue.</p><p><strong>Conclusion: </strong>Our results did not show usefulness of the DWI and T1WI for assessing the consistency of pituitary macroadenomas, nor as a predictor of the degree of surgical resection.</p>","PeriodicalId":20202,"journal":{"name":"Pituitary","volume":null,"pages":null},"PeriodicalIF":3.8,"publicationDate":"2024-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139564677","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Different patient versus provider perspectives on living with Cushing's disease.","authors":"Amanda Halstrom, I-Hsin Lin, Andrew Lin, Marc Cohen, Viviane Tabar, Eliza B Geer","doi":"10.1007/s11102-024-01381-4","DOIUrl":"10.1007/s11102-024-01381-4","url":null,"abstract":"<p><strong>Context: </strong>Patients with Cushing's disease (CD) face challenges living with and receiving appropriate care for this rare, chronic condition. Even with successful treatment, many patients experience ongoing symptoms and impaired quality of life (QoL). Different perspectives and expectations between patients and healthcare providers (HCPs) may also impair well-being.</p><p><strong>Objective: </strong>To examine differences in perspectives on living with CD between patients and HCPs, and to compare care goals and unmet needs.</p><p><strong>Design: </strong>Memorial Sloan Kettering Pituitary Center established an annual pituitary symposium for pituitary patients and HCPs. Through anonymous pre-program surveys distributed at the 2020 and 2022 symposia, patients and HCPs answered questions related to their own sense, or perception of their patients' sense, of hope, choice, and loneliness in the context of living with CD.</p><p><strong>Participants: </strong>From 655 participants over two educational events, 46 patients with CD and 116 HCPs were included. Median age of both groups was 51 years. 78.3% of the patients were female vs. 53.0% of the HCPs.</p><p><strong>Results: </strong>More patients than HCPs reported they had no choices in their treatment (21.7% vs. 0.9%, P < 0.001). More patients reported feeling alone living with CD than HCPs' perception of such (60.9% vs. 45.5%, P = 0.08). The most common personal care goal concern for patients was 'QoL/mental health,' vs. 'medical therapies/tumor control' for HCPs. The most common CD unmet need reported by patients was 'education/awareness' vs. 'medical therapies/tumor control' for HCPs.</p><p><strong>Conclusions: </strong>CD patients experience long term symptoms and impaired QoL which may in part be due to a perception of lack of effective treatment options and little hope for improvement. Communicating experiences and care goals may improve long term outcomes for CD patients.</p>","PeriodicalId":20202,"journal":{"name":"Pituitary","volume":null,"pages":null},"PeriodicalIF":3.8,"publicationDate":"2024-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11009766/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139692669","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}