Poorer health services for HSP

Linked to limited HSP knowledge


People with HSP report lower satisfaction, trust and participation in meetings with both their GP/family doctor and specialist health services than people in the general population. Poorer experiences with health services were associated with more health problems.


Whilst the results of this large Norwegian study of 108 people with HSP cannot be confidently assumed to hold in Australia, the same basis for this situation exists in both locations, namely limited knowledge about HSP amongst health professionals.


Background: Persons with rare disorders may experience poorer health services due to limited knowledge about rare disorders among health professionals. Knowledge about how persons with rare disorders perceive health services can help inform service providers to enhance their practices.

Methods: We conducted a self-report survey among adults with the rare disorders hereditary spastic paraparesis (HSP; n = 108; mean age 57.7 years; 54.2% females) and neurofibromatosis type 1 (NF1, n = 142; mean age = 50.3 years; 62.0% females). Their responses concerning perceived health experiences were compared to healthy controls from the population study HUNT-3 (n = 7,312).

Results: Both rare disorder groups reported lower satisfaction, trust, and participation in meetings with their general practitioner and specialist health services. More reported health problems were overall associated with poorer health service experiences.

Conclusion: There is a need to identify predictors of health service experiences at the patient and health service provider levels with the aim to tighten the gap between the health experiences of patients with and without rare disorders.


SOURCE: Mol Genet Genomic Med. 2020 Sep 14;8(10):e1399. doi: 10.1002/mgg3.1399. Online ahead of print. PMID: 32924306 © 2020 The Authors. Molecular Genetics & Genomic Medicine published by Wiley Periodicals LLC.

Health service experiences among adults with hereditary spastic paraparesis or neurofibromatosis type 1

Krister W Fjermestad  1   2 Øivind Kanavin  2 Livø Nyhus  2 Lise B Hoxmark  2

  1. Department of Psychology, University of Oslo, Oslo, Norway.
  2. Frambu resource centre for rare disorders, Siggerud, Norway.


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