Optimizing the patient journey in hypertrophic cardiomyopathy—Patient and clinician perspectives: Summary of CME from Medscape

Dharsshini. N*

Group Clinical Pharmacist, Kauvery Hospital, Trichy

*Correspondence: [email protected]

Background

Hypertrophic cardiomyopathy (HCM) is a genetic heart disorder characterized by abnormal thickening of the heart muscle, which can lead to obstructed blood flow and other complications. Effective management of HCM requires a comprehensive, patient-centred approach involving both medical and lifestyle interventions.

Patient Perspectives

  1. Diagnosis and Information

Early and accurate diagnosis is crucial. Patients often experience symptoms like chest pain, shortness of breath, and palpitations, which need timely evaluation. Patients value clear, accessible information about their condition, treatment options, and lifestyle modifications.

  1. Emotional Support

HCM can be associated with anxiety and fear of sudden cardiac events. Emotional and psychological support is vital.

  1. Involvement in Care

Patients prefer being actively involved in their care decisions. Shared decision-making enhances patient satisfaction and adherence to treatment. Regular follow-ups and open communication with healthcare providers are important for monitoring disease progression and adjusting treatments.

 

Clinician Perspectives

  1. Diagnosis and Risk Assessment

Clinicians emphasize the importance of genetic testing and detailed family history to identify HCM and assess risk accurately. Advanced imaging techniques, such as echocardiograms and MRI, are essential for detailed evaluation of the heart’s structure and function

  1. Treatment Strategies

Beta-blockers and calcium channel blockers are commonly used medications to manage symptoms. In some cases, surgical interventions like septal myectomy or alcohol septal ablation are necessary. Implantable cardioverter-defibrillators (ICDs) may be recommended for patients at high risk of sudden cardiac death.

  1. Interdisciplinary Approach

Effective management of HCM often involves a multidisciplinary team, including cardiologists, geneticists, electrophysiologists, and sometimes surgeons. Coordinated care and communication among healthcare providers are critical for optimizing patient outcomes.

  1. Ongoing Education and Research

Clinicians need to stay informed about the latest research and treatment advances in HCM. Participation in clinical trials and registries can provide valuable insights into the disease and improve care practices.

Patient’s Journey with HCM

2017 = 50-year aged women with murmur and no symptoms. Medical history of Rheumatoid arthritis for 17yrs, Methotrexate oral alternate every other week. Family history not known. Cardiologist suspected HCM and performed tests. HCM diagnosis confirmed.

2018-2021 = This women in her 50s with confirmed Obstructive HCM  gets  progressively winded and started limiting her activities. Borderline hypertension confirmed. Referred to pulmonologist who tested for COPD and prescribed inhalers. Also had Covid-19 infection multiple times. Started on Metoprolol twice daily.

2022 = No relief of symptoms with metoprolol or inhalers. She continued living with poor QOL. Discussed further procedure or new medication. Referred to HCM specialist.

Shared Decision-Making Patient-clinician

  • Beta Blockers or CCB. Issues: Bradycardia, Hypotension
  • Issues: Light-headedness, Dry Mouth
  • Septal Reduction Therapy: Denied by patient
  • Cardiac Myosin Inhibitors: Echo Monitoring. Patient decided to wait since it was new.

2023 = She initiated Mavacamten 5 mg once daily.  She would travel 2 hours for echos and follow up visits. Incorporated telehealth visits to reduce travel burden. Patient can breathe now.

2024 = She is in maintenance phase with Mavacamten. Her QOL has improved. She looks forward for going back to her favourite activities.

Patient-Clinician Shared Decision Making

 

Conclusion

Optimizing the patient journey in HCM requires a collaborative approach that addresses both the medical and psychosocial aspects of the disease. Empowering patients with knowledge, involving them in care decisions, and providing comprehensive, coordinated care are key strategies for improving outcomes and enhancing the quality of life for those living with HCM.

Reference

https://www.medscape.org/viewarticle/1000570

Dharsshini. N
Group Clinical Pharmacist

Journals

Kauvery Hospital
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