Care needs of persons with long-term spinal cord injury living at home in the Netherlands.
METHODS
Cross-sectional survey.


OBJECTIVE
To describe the care received, care needs and preventability of secondary conditions according to persons with long-term spinal cord injury (SCI) living at home.


METHODS
The Netherlands.


METHODS
A questionnaire was sent to all members of the Dutch SCI Patient Organisation. From a list of 26 SCI secondary conditions, participants chose the five conditions they perceived as most important. For each of these conditions, they described the type of care they received, their need for (extra) care and its preventability.


RESULTS
Response rate was 45% (n=453) and mean time after injury was 13.3 years. In case of secondary conditions, participants were more likely to visit their general practitioner (58%) than another medical specialist (29%) or rehabilitation specialist (25%). For all most-important secondary conditions, care was received in 47% and care, or extra care, was needed in 41.3%. Treatment was the type of care most often received (29.5%) and needed (17.2%). However, for information and psychosocial care, the care needed (12.2 and 9.9%, respectively) was higher than the care received (7.6 and 5.9%, respectively). Thirty-four percent of all most-important secondary conditions were perceived as preventable, the rate increasing to 52.8% for pressure sores, of which 29.9% were considered to be preventable by the participants themselves.


CONCLUSIONS
This study showed substantial unmet care needs in persons with long-term SCI living at home and underlines the further improvement of long-term care for this group. Information, psychosocial care and self-efficacy seem to be the areas to be enhanced.
van Loo
M A
MA
Centre of Excellence in Rehabilitation Medicine, Rehabilitation Centre De Hoogstraat, Utrecht, The Netherlands.
Post
M W M
MW
Bloemen
J H A
JH
van Asbeck
F W A
FW
D000293:Adolescent; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D017028:Caregivers / Q000706:statistics & numerical data / Q000639:trends; D003430:Cross-Sectional Studies; D005260:Female; D019538:Health Care Surveys; D006297:Health Services Accessibility / Q000706:statistics & numerical data / Q000639:trends; D006301:Health Services Needs and Demand / Q000706:statistics & numerical data* / Q000639:trends; D006699:Home Care Services / Q000706:statistics & numerical data* / Q000639:trends; D006801:Humans; D008297:Male; D008511:Medicine / Q000706:statistics & numerical data / Q000639:trends; D008875:Middle Aged; D009426:Netherlands; D010146:Pain / Q000209:etiology / Q000451:nursing / Q000523:psychology; D017060:Patient Satisfaction / Q000706:statistics & numerical data; D003668:Pressure Ulcer / Q000209:etiology / Q000451:nursing / Q000523:psychology; D011787:Quality of Health Care / Q000706:statistics & numerical data* / Q000639:trends; D011788:Quality of Life / Q000523:psychology; D012944:Social Support; D013035:Spasm / Q000209:etiology / Q000451:nursing / Q000523:psychology; D013119:Spinal Cord Injuries / Q000150:complications* / Q000451:nursing* / Q000523:psychology; D011795:Surveys and Questionnaires; D001750:Urinary Bladder, Neurogenic / Q000209:etiology / Q000451:nursing / Q000523:psychology; D055815:Young Adult