Different patient versus provider perspectives on living with Cushing’s disease Journal Article
| Authors: | Halstrom, A.; Lin, I. H.; Lin, A.; Cohen, M.; Tabar, V.; Geer, E. B. |
| Article Title: | Different patient versus provider perspectives on living with Cushing’s disease |
| Abstract: | Context: 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. Objective: To examine differences in perspectives on living with CD between patients and HCPs, and to compare care goals and unmet needs. Design: 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. Participants: 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. Results: 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. Conclusions: 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. © The Author(s) 2024. |
| Keywords: | adolescent; adult; clinical article; controlled study; aged; middle aged; cancer radiotherapy; neurosurgery; neoplasm; neoplasms; quality of life; patient education; psychology; motivation; symptom; longitudinal studies; attitude to illness; ketoconazole; cancer control; awareness; decision making; patient attitude; mental health; health personnel attitude; loneliness; longitudinal study; hormone substitution; rare disease; rare diseases; symposium; nurse; hypophysis; patient-reported outcome; private practice; pituitary; patient reported outcomes; hope; endocrinologist; neurosurgeon; cushing disease; humans; human; male; female; article; cabergoline; metyrapone; pituitary acth hypersecretion; virtual education; unmet medical need; distance learning; osilodrostat; cushing’s |
| Journal Title: | Pituitary |
| Volume: | 27 |
| Issue: | 2 |
| ISSN: | 1386-341X |
| Publisher: | Springer |
| Date Published: | 2024-04-01 |
| Start Page: | 141 |
| End Page: | 150 |
| Language: | English |
| DOI: | 10.1007/s11102-024-01381-4 |
| PUBMED: | 38315244 |
| PROVIDER: | scopus |
| PMCID: | PMC11009766 |
| DOI/URL: | |
| Notes: | The MSK Cancer Center Support Grant (P30 CA008748) is acknowledged in the PubMed record and PDF. Corresponding MSK author is Eliza B. Geer -- Source: Scopus |
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