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.
Download full-text PDF |
Source |
|---|---|
| http://www.ncbi.nlm.nih.gov/pmc/articles/PMC11009766 | PMC |
| http://dx.doi.org/10.1007/s11102-024-01381-4 | DOI Listing |
Publication Analysis
Top Keywords
Similar Publications
Care for older adults living with dementia in the emergency department: a systematic review and meta-synthesis of care partner roles and perspectives.
Emerg Med J
January 2025
Department of Community Health Sciences, University of Calgary Cumming School of Medicine, Calgary, Alberta, Canada.
Objective: Care partners play a vital role in supporting persons living with dementia (PLWD) in using medical services. We conducted a meta-synthesis to explore care partner perspectives of ED care for PLWD, as well as healthcare provider (HCP) perceptions of care partner roles within the ED, to identify care gaps and facilitators across the ED continuum.
Methods: MEDLINE, PsycINFO and Embase databases were searched from inception to 8 May 2023.
Developing a patient toolkit for opioid use and management through co-creation.
Patient Educ Couns
January 2025
Office of Professional Development and Educational Scholarship, Queen's University, 385 Princess Street, Kingston, ON K7L 1B9, Canada.
Canada has been experiencing an opioid use crisis, and urgent efforts are being made to stem the tide. With funding support from Health Canada, the Association of Faculties of Medicine of Canada (AFMC) recently developed a series of asynchronous online bilingual modules to educate key players across the medical education spectrum on chronic pain and opioid use. The curriculum for the modules which informed the development of the Patient-Physician Partnership Toolkit was co-created through an authentic collaboration between healthcare professionals (HCPs), and patient subject matter experts who were patients with lived experience.
View Article and Find Full Text PDFMeasuring Self-Reported Well-Being of Physicians Using the Well-Being Thermometer: Cohort Study.
JMIR Form Res
January 2025
Sheffield Teaching Hospitals NHS Foundation Trust, Sheffield, United Kingdom.
Background: Advancements in medical science have focused largely on patient care, often overlooking the well-being of health care professionals (HCPs). This oversight has consequences; not only are HCPs prone to mental and physical health challenges, but the quality of patient care may also endure as a result. Such concerns are also exacerbated by unprecedented crises like the COVID-19 pandemic.
View Article and Find Full Text PDFPatient and Healthcare Professional Perspectives on Crohn's Perianal Fistula Treatment: Results From a Discrete Choice Experiment.
Crohns Colitis 360
January 2025
GI Medical, Takeda Pharmaceuticals USA, Inc., Lexington, MA, USA.
Background: Crohn's perianal fistulas (CPF) are difficult to manage and often require multiple interventions. This study aimed to assess the preferences of patients and healthcare professionals (HCPs) for attributes of CPF-related procedures/surgeries to better inform CPF management.
Methods: This US cross-sectional, observational study was conducted via a web-enabled questionnaire (October 2021-January 2022) among patients aged 21-89 years with a self-reported physician diagnosis of CPF (with or without CPF-related surgery experience) and HCPs (gastroenterologists and colorectal surgeons who managed ≥3 patients with CPF in the past 12 months).
Results from a UK consensus about the optimal prescribing of medium strength triple therapy in uncontrolled adult asthma patients in the NHS.
J Family Med Prim Care
December 2024
Medicines Evaluation Unit, Manchester University National Health Service Foundation Trust, University of Manchester, Manchester, United Kingdom.
Context: An inhaled corticosteroid (ICS) in combination with a long-acting β2-agonist (LABA) is a common treatment approach for asthma patients not controlled on ICS alone, but a significant proportion of patients remain uncontrolled on this combination and treatment adherence can also be a challenge. One of the options for adults whose asthma is uncontrolled in an ICS/LABA is the addition of a long-acting muscarinic receptor antagonist (LAMA), an approach commonly referred to as 'triple therapy'. The use of medium-strength ICS/LABA/LAMA is established in treating chronic obstructive pulmonary disease but is less well-established in asthma.
View Article and Find Full Text PDFWant AI Summaries of new PubMed Abstracts delivered to your In-box?
Enter search terms and have AI summaries delivered each week - change queries or unsubscribe any time!