Related Experiment Video
Updated: May 26, 2025
Measurements of Motor Function and Other Clinical Outcome Parameters in Ambulant Children with Duchenne Muscular Dystrophy
Published on: January 12, 2019
A Formal Needs Assessment in Palliative Care Clinic Development for Adolescent/Young Adults (AYAs) With Neuromuscular
Taylor H Jersak1, Loren Steinfeldt2, Kelstan L Ellis1
1Division of Palliative Medicine (T.H.J., K.L.E, J.L.), Children's Mercy Kansas City, Kansas City, Missouri, USA.
Background:
Although medical advancements have prolonged survival in Duchenne muscular dystrophy (DMD), it remains a life-limiting diagnosis with numerous challenges. Palliative care is recommended for all patients with DMD, but there is no consensus on the recommended outpatient care model. Our initial objective was to establish a palliative care clinic for adolescents and young adults (AYA) with DMD.
Methods:
We used the Center to Advance Palliative Care (CAPC) Community-Based Palliative Care Needs Assessment and Decision-Making Tool to identify a patient population, create structured surveys, and conduct stakeholder interviews. We developed a referral process and created a combination in-person/telehealth clinic.
Results:
Three major themes were identified based on five surveys and two interviews: (1) stakeholder needs, (2) anticipated challenges, and (3) ideas for collaboration. Between December 2022 and August 2023, there were 16 completed referrals with a median patient age of 21.5 years.
Conclusion:
Using a formal needs assessment tool, we successfully developed a neuromuscular-focused AYA palliative care clinic.
Related Concept Videos
01:24Nursing Process for Patient and Caregiver Teaching I: Assessment and Diagnosis
It is critical to determine the patient's learning needs during the assessment. Determination of learning needs compounds data...
01:29Nursing Assessment
The nurse collects all aspects of the patient's health in the initial assessment, establishing priorities for ongoing focused assessments...
01:29Documentation in Long-Term and Home Healthcare Setting
Long-Term Care Facilities
01:28Disorders of the Skeletal Muscle
Musculoskeletal disorders
Musculoskeletal disorders involve injuries and conditions affecting the skeletal muscles and associated connective tissues. These disorders can arise from acute biomechanical stresses or chronic overuse and can occur across different age groups. Common injuries include sprains, fractures, and muscular strains, often resulting from...
01:20Myasthenia Gravis: Overview and Treatment
These antibodies interfere with the function of the nicotinic receptors in three ways: by binding to the receptor and disrupting acetylcholine binding; by causing cross-linking of receptors which...
01:15Myasthenia Gravis: Diagnostic Tests
The edrophonium test is a diagnostic tool for myasthenia gravis. It involves...