Myotonic Dystrophy and Huntington's Disease Care: "We Like to Think We're Making a Difference"

Area of Science:

• Neurology
• Patient Care
• Healthcare Management

Background:

• Myotonic dystrophy (DM1) and Huntington's disease (HD) are progressive, life-limiting neurological conditions.
• Cognitive and behavioral impairments in patients can challenge patient-centered care.
• No prior research explored healthcare providers' (HCPs') perspectives on patient-centered care for DM1/HD patients.

Purpose of the Study:

• To explore healthcare providers' perspectives on delivering patient-centered care to individuals with myotonic dystrophy (DM1) and Huntington's disease (HD).

Main Methods:

• Constructivist grounded theory approach.
• Semistructured interviews with eleven HCPs treating DM1 or HD patients.
• Iterative data collection and analysis using three stages of coding.

Main Results:

• HCPs described an evolving care approach based on disease stage and caregiver involvement.
• Key goals included providing hope through medical management, crisis prevention, support, and advocacy.
• HCPs perceived patients benefited from proactive clinical care despite the absence of curative treatments.

Conclusions:

• Care for DM1/HD patients involves balancing care provision challenges and rewards.
• HCPs must balance symptom management with quality of life concerns for patients and caregivers.
• The study raises questions about the feasibility of patient-centered care with cognitive decline and the evolution of chronic neurological care.