Author
MEESTER-DELVER Anke; BEELEN Anita; HENNEKAM Raoul; et al;
Predicting additional care in young children with neurodevelopmental disability: a systematic review.
Journal citation/publication details
Developmental Medicine and Child Neurology, 48(2), 2006, pp.143-150.
Summary
This review focuses on literature that involves the use of seven assessment instruments with young children who have permanent, non-progressive developmental disabilities such as cerebral palsy or spina bifida. The aim is to identify how useful these instruments are in assessing future dependency on additional care. None is found to be wholly suitable, and the authors advise that new instruments need to be developed.
Context
Children who have permanent, non-progressive developmental disorders are likely to suffer associated impairments that will require additional care and support throughout their lives. Tools for assessing the care implications of these impairments are important not only for diagnostic purposes but to inform parents, and other care givers or care providers, about likely future support needs.
Methods
What sources were used?
Medline was searched from January 1966 to June 2005 and the references to relevant papers were checked. The authors describe this latter process as citation tracking, but it is unclear whether additional citation searches were performed, e.g. on authors or titles, in electronic databases.
What search terms/strategies were used?
The search terms listed are: disabled children, developmental disabilities, needs assessments, outcome assessments, child health services, disability evaluation, rehabilitation, habilitation. The results of searches on each of the terms, and combinations of them, are given in Table I.
What criteria were used to decide on which studies to include?
Eligible studies were in English, German and Dutch and covered children (aged 0-18) with permanent, non-progressive developmental disabilities. The need for additional care was defined by the authors (following Stein et al, 1993) as: (1) dependency on medication or a special diet, medical technology, assistive devices or personal assistance; and/or (2) a need for educational, medical or related services over and above the norm for the child's age; and/or (3) a need for special ongoing treatment, intervention or accommodation at home or in school.
Who decided on their relevance and quality?
The initial searches identified 1,748 potentially relevant papers, which were scanned against the inclusion criteria on the basis of titles and abstracts. No details of who carried out this procedure are given.
How many studies were included and where were they from?
Fifty-two studies met the inclusion criteria, yielding seven standardised assessment instruments for review. Basic features of the instruments and their ability to measure care are summarised in Tables II and III.
How were the study findings combined?
Using data from the studies, the seven assessment instruments were evaluated in terms of: the type and amount of care assessed; the comprehensiveness of the instrument in respect of additional care needs; its ability to predict future additional care needs; and the degree to which it describes the additional age-related care that is needed.
Findings of the review
Each of the seven instruments was assessed in turn against the four evaluation criteria.
Pediatric Evaluation of Disability Inventory (PEDI)
Uses interviews and parent reports.
Covers mobility, self-care and social functioning (not comprehensive by Stein's definition).
Does not predict future additional care needs.
Describes age-related additional care needs.
Functional Independence Measure for Children (WeeFIM)
Uses observation or parent report.
Covers self-care, mobility and cognition (not comprehensive by Stein's definition).
Can measure progress but does not predict future additional care needs.
Describes age-related additional care needs.
Health Utility Index (HUI-3)
Uses a parental questionnaire.
Covers vision, hearing, speech, ambulation, dexterity, emotion, cognition and pain (not comprehensive by Stein's definition).
Can measure changes in health status but does not predict future additional care needs.
The functions measured, and related care requirements, are not age-related.
Life Habits Assessment (LIFE-H)
Uses a questionnaire.
Covers level of accomplishment in 248 life habits in 13 categories: personal care, mobility, housing, nutrition, fitness, communication, recreation, community, education, responsibility, family relations, interpersonal relations and employment (not comprehensive by Stein's definition).
Can measure progress but does not predict future additional care needs.
Describes age-related additional care needs.
Lifestyle Assessment Questionnaire (LAQ)
Covers the burden experienced by parents and siblings of the child in terms of employment, finances, travel, care giving, stress, and also examines the child in terms of communication, mobility, self-care, domestic life, relationships outside the home and in the family, family participation, social life and civic life. Not comprehensive by Stein's definition because it focuses on the experienced burden of care, rather than care itself.
Does not predict future additional care needs.
The primary focus is on burden (which is described as not age-related), rather than care itself.
Supports Intensity Scale (SIS)
Uses a semi-structured interview, originally developed for learning disabled subjects.
Covers eight support needs (home living community living, life-long learning, employment, health and safety, social behaviour, protection and advocacy); four medical areas (respiratory care, feeding assistance, skin care and ‘exceptional medical needs); and four challenging behaviour areas (externally directed destructiveness, self-directed destructiveness, sexual problem behaviour and ‘other challenging behaviours'). Not comprehensive by Stein's definition because it focuses on the support needed to provide care, rather than care itself.
Does not predict future additional care needs.
Is age-related but focuses on achieving goals and desires rather than care.
Amount of Assistance Questionnaire (AAQ)
A parent (or teacher) questionnaire.
Covers individual performance (motor, language, play, self-care, social-emotional functioning), compared with other children of the same age; treatment received by the child; and care needs (eating, dressing, toileting, locomotion). Not comprehensive by Stein's definition because it focuses on the time and assistance needed to provide care, rather than care itself.
Does not predict future care needs.
Describes age-related additional care needs.
Authors' conclusions
Although the functional outcomes of developmental disabilities in young children are routinely assessed, studies have reported ‘an urgent need to express the consequences of these conditions also in terms of need for additional care' that will have to be provided by both parents and the community over the long term. None of the assessment instruments identified meet this need in terms of focus, with three addressing functional performance (PEDI, WeeFIM, LIFE-H), three the burden on caregivers (SIS, AAQ, LAQ) and one health status (HUI-3). In addition, all are designed to inform medical professionals about a child's current condition, rather than provide useful information for parents and other care givers and providers to plan for the future. The authors suggest that new assessment instruments are required to meet this need.
Implications for policy or practice
None are discussed.
Related references
None