TY - JOUR
T1 - Assessing the needs of the SMA population
T2 - Survey results of health care providers and families
AU - Halanski, Matthew A.
AU - Patterson, Karen G.
AU - Sund, Sarah A.
AU - Makholm, Linda M.
AU - Schroth, Mary K.
N1 - Publisher Copyright:
© The Author(s) 2014.
PY - 2014/12/1
Y1 - 2014/12/1
N2 - 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.
AB - 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.
KW - FSMA
KW - Health care professional
KW - Needs
KW - SMA
KW - Survey
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U2 - 10.1177/2158244014559018
DO - 10.1177/2158244014559018
M3 - Article
AN - SCOPUS:84927587508
SN - 2158-2440
VL - 4
JO - SAGE Open
JF - SAGE Open
IS - 4
ER -