The role of primary care in rare disorders: A qualitative study of parents and patients managing complex vascular anomalies
These videos have been matched automatically. Contact us if they are not relevant.
These videos have been matched automatically. Contact us if they are not relevant.
View abstract on PubMed
Summary
This summary is machine-generated.Primary care clinicians play a crucial role in managing rare vascular anomalies. Supportive and facilitating actions improve patient care, while disregarding and interfering behaviors hinder it.
Area Of Science
- Medical Care
- Rare Diseases
- Vascular Anomalies
Background
- Complex rare disorders necessitate multidisciplinary specialist care.
- Effective primary care and specialty care coordination is vital for high-quality patient outcomes.
- Limited research exists on primary care clinicians' roles in the ongoing management of rare disease patients.
Purpose Of The Study
- To explore the multifaceted roles of primary care clinicians (PCCs) in the care continuum of patients with rare and complex vascular anomalies.
Main Methods
- Qualitative study employing semi-structured interviews with 34 parents and 25 adult patients affected by vascular anomalies.
- Participants shared experiences regarding diagnosis, care, and clinician communication.
- Thematic analysis was used to identify key PCC behaviors and roles.
Main Results
- PCC roles were categorized into four distinct behaviors: supporting, facilitating, interfering, and disregarding.
- Supporting and facilitating behaviors involved proactive engagement, learning, referrals, and problem-solving.
- Interfering and disregarding behaviors included lack of coordination, incorrect referrals, and narrow focus on primary care needs.
Conclusions
- Findings highlight significant opportunities for enhancing primary care for patients with vascular anomalies.
- Negative PCC behaviors (interfering, disregarding) exacerbate care fragmentation and impede comprehensive management.
- Positive PCC actions (supporting, facilitating) demonstrate commitment and improve patient and family care experiences.
These videos have been matched automatically. Contact us if they are not relevant.
These videos have been matched automatically. Contact us if they are not relevant.
Related Concept Videos
Secondary healthcare is offered by a specialist, generally in hospitals or clinics for patients referred by primary healthcare providers. It occurs when a person has an illness or injury that requires specific medical care. Secondary care is often referred to as acute care. Secondary care can range from uncomplicated care to repair a minor laceration or treat a strep throat infection to more complicated emergent care, such as treating a head injury sustained in an automobile accident. Whatever...
Specialized care provided over an extended period is called tertiary care. Usually, a primary or secondary care physician will refer a patient to tertiary care. A patient's maximum physical and mental function is restored in tertiary care, which is caused due to the impact of a chronic illness or condition. Tertiary care aims to achieve the highest level of functioning possible while managing chronic illness. For example, a patient who falls and fractures their hip will need secondary care...
The case management model is a multidisciplinary approach that involves healthcare professionals from diverse disciplines, such as physicians, nurses, therapists, social workers, and pharmacists, working collaboratively to address the various needs of patients. Each healthcare professional brings unique expertise and perspectives, contributing to a more comprehensive understanding of the patient's condition and tailoring treatment plans accordingly.
For example, a patient with a chronic...
Esophageal varices often manifest as gastrointestinal bleeding episodes, presenting symptoms like hematemesis (vomiting of blood), hematochezia (passing fresh blood via the rectum), and melena (black, tarry stools). Other signs can include weight loss, anorexia, abdominal discomfort, jaundice, pruritus, altered mental status, and muscle cramps.
In the initial assessment, a thorough review of the patient's medical history is vital to identify risk factors such as liver disease, alcohol...
The levels of care describe the services provided in the healthcare system. Accordingly, there are six levels of the traditional healthcare system in the US: preventive, primary, secondary, tertiary, restorative, and continuing healthcare. A nurse must understand how the healthcare industry organizes and provides services within these levels of care.
The preventive healthcare service includes tests for screening. Preventive health care services include identifying and reducing disease risk...
Cardiovascular diseases, encompassing a range of conditions, can significantly affect the heart's operations and the overall circulatory system. These conditions impair the heart's ability to pump blood, leading to a deficit in oxygen supply to crucial organs. Anomalies in the heart's electrical system, known as arrhythmias, can cause heartbeats to accelerate or slow down. Usually, heart rates increase during physical activity and decrease while resting or sleeping. However,...