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Primary health care professionals' experiences with caring for patients with advanced Huntington's disease: a

Marleen R van Walsem1,2,3, Emilie I Howe3,4, Nada Andelic3,4

  • 1Department of Neurohabilitation, Oslo University Hospital, P.O. Box 4950, Nydalen, 0424, Oslo, Norway.

BMC Primary Care
|May 7, 2024
PubMed

Insights

Managing advanced Huntington's disease (HD) in primary care presents challenges for healthcare professionals. Effective care requires strong individual competency, supportive teams, and organizational resources.

Area of Science:

  • Neurology
  • Primary Health Care
  • Patient Management

Background:

  • Huntington's disease (HD) significantly impacts patients and their families.
  • Advanced HD management poses challenges for primary healthcare professionals.

Purpose of the Study:

  • To explore healthcare professionals' experiences managing advanced Huntington's disease patients in primary care.
  • To identify challenges faced by primary healthcare professionals in advanced HD care.

Main Methods:

  • Qualitative study utilizing four focus group interviews.
  • Involved 22 primary healthcare professionals with experience in HD care in Norway.
  • Data analyzed using systematic text condensation (qualitative content analysis).

Main Results:

  • Challenges identified include patient behavior, family dynamics, professional competency, and organizational context.
  • Successful advanced HD management depends on individual skills, teamwork, and leadership support.
  • Professionals highlighted the need for specific competencies and "everyday tactics".

Conclusions:

  • Individual suitability and competency are crucial for managing advanced HD.
  • Well-functioning primary care teams and organizational support are vital for effective HD care.
  • Training and organizational support enhance professionals' ability to manage advanced HD patients.
Abstract

Keywords:
Advanced huntington’s diseaseCareHealth care professionalsQualitative research

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