IDEAS home Printed from https://ideas.repec.org/a/sae/sagope/v4y2014i4p2158244014559018.html
   My bibliography  Save this article

Assessing the Needs of the SMA Population

Author

Listed:
  • Matthew A. Halanski
  • Karen G. Patterson
  • Sarah A. Sund
  • Linda M. Makholm
  • Mary K. Schroth

Abstract

To define issues of greatest importance to families and health care professionals (HCP) involved in caring for patients with spinal muscular atrophy (SMA), an electronic survey was distributed to patients, families, and HCPs to determine the most important issues facing patients with SMA. Seventy-seven patients/families (30 SMA type I, 36 SMA type II, 11 SMA type III) and 89 HCPs (17 pulmonologists; 10 physical, speech, and occupational therapists; 19 orthopedic surgeons, 12 neurologists; 13 nurses; 10 nutritionists; 8 others) completed the survey. Breathing issues, impact of diet, impact of disease on the family, spinal deformity, and surgical interventions were the five most frequently identified topics in order of importance to the patients/families. Important topics were similar for the HCP ranking those as follows: breathing issues, impact on family, spinal deformity, impact of diet, and impact of medications. This investigation reports the current most important perceived health care needs of patients with SMA. The perceived needs were similar between patients, families, and HCPs.

Suggested Citation

  • Matthew A. Halanski & Karen G. Patterson & Sarah A. Sund & Linda M. Makholm & Mary K. Schroth, 2014. "Assessing the Needs of the SMA Population," SAGE Open, , vol. 4(4), pages 21582440145, November.
    • Handle: RePEc:sae:sagope:v:4:y:2014:i:4:p:2158244014559018
    DOI: 10.1177/2158244014559018
    as

    Download full text from publisher

    File URL: https://journals.sagepub.com/doi/10.1177/2158244014559018
    Download Restriction: no
    File URL: https://libkey.io/10.1177/2158244014559018?utm_source=ideas
    LibKey link: if access is restricted and if your library uses this service, LibKey will redirect you to where you can use your library subscription to access this item
    ---><---

    Corrections

    All material on this site has been provided by the respective publishers and authors. You can help correct errors and omissions. When requesting a correction, please mention this item's handle: RePEc:sae:sagope:v:4:y:2014:i:4:p:2158244014559018. See general information about how to correct material in RePEc.

    If you have authored this item and are not yet registered with RePEc, we encourage you to do it here. This allows to link your profile to this item. It also allows you to accept potential citations to this item that we are uncertain about.

    We have no bibliographic references for this item. You can help adding them by using this form .

    If you know of missing items citing this one, you can help us creating those links by adding the relevant references in the same way as above, for each refering item. If you are a registered author of this item, you may also want to check the "citations" tab in your RePEc Author Service profile, as there may be some citations waiting for confirmation.

    For technical questions regarding this item, or to correct its authors, title, abstract, bibliographic or download information, contact: SAGE Publications (email available below). General contact details of provider: .

    Please note that corrections may take a couple of weeks to filter through the various RePEc services.

    IDEAS is a RePEc service. RePEc uses bibliographic data supplied by the respective publishers.