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Background A large number of children are affected by foot and ankle problems owing to congenital deformities, clinical syndromes, neuromuscular conditions or trauma. This study aimed to identify how children's lives are affected by foot and ankle problems from the child's perspective as the first stage in developing a family-assessed instrument.
Methods This was a qualitative study using focus groups involving children with a variety of foot and ankle problems aged 5-7, 8-11 and 12-15 years, and separate concurrent groups for their parents. The focus groups were child-centred and involved creative activities; there were two main exercises. The first activity involved agreeing or disagreeing with several statements about children with foot and ankle problems; the second activity explored a typical 'day in the life' of a child with a foot or ankle problem. All the groups were audio-recorded and transcribed; grounded theory and comparative content analysis were used to identify and code themes participants reported as important.
Results The groups ran successfully with children in all ages. Consistent themes identified by all groups were; (i) specific activities that were more difficult; (ii) physical symptoms; (iii) reduced participation in certain life situations; and (iv) self-consciousness. There were few differences in the issues raised by each age group although the life situations children encounter tend to become more complex as they get older; there is also the difficulty of negotiating a larger school campus at senior compared with junior school. There were no differences in the issues raised by children and their parents.
Conclusions Focus groups involving creative child-centred activities were used successfully to elicit children's experience of their health problems. In addition to expected activity limitations and physical symptoms some children with foot or ankle problems endure participation restrictions and self-consciousness that are exacerbated by the behaviour of other people or their environment, particularly at school. The findings of this study informed the development of a questionnaire to measure how severely children are affected by foot or ankle problems from the child's perspective.
Interesting stuff. I have been looking at doing some work around measuring the impact on quality of life in children with foot problems, and the impact on quality of life of foot orthoses for those with foot pathology leading to pain. One instrument I did find is known as the PODCI. See here: http://www.aaos.org/research/outcomes/outcomes_peds.asp
Does anyone have any experience/knowlege of these types of quality of life outcomes in children with regard to the foot?
Perth Royal Infirmary,
We developed the Oxford ankle foot questionnaire to assess the disability associated with foot and ankle problems in children aged from five to 16 years. A survey of 158 children and their parents was carried out to determine the content, scaling, reliability and validity of the instrument. Scores from the questionnaire can be calculated to measure the effect of foot or ankle problems on three domains of children’s lives: physical, school and play, and emotional. Scores for each domain were shown to be internally consistent, stable, and to vary little whether reported by child or parent. Satisfactory face, content and construct validity were demonstrated. The questionnaire is appropriate for children with a range of conditions and can provide clinically useful information to supplement other assessment methods. We are currently carrying out further work to assess the responsiveness of questionnaire scores to change over time and with treatment.
PURPOSE: To evaluate how scores from the Oxford Ankle Foot Questionnaire change over time and with treatment using both distribution-based and anchor-based approaches.
METHODS: Eighty children aged 5-16 and their parent or carer completed questionnaires at orthopaedic or trauma outpatient clinics. They were asked to complete and return a second set of questionnaires again within 2 weeks (retest), and then mailed a third set of questionnaires to complete again after 2 months (follow-up). The follow-up questionnaires included a global rating of change 'transition' item.
RESULTS: Child- and parent-reported mean domain scores (Physical, School & Play, and Emotional) were all stable at retest, whereas positive mean changes were observed at follow-up. As we hypothesised, trauma patients had poorer scores than elective patients at baseline, and showed greater improvement at follow-up. For trauma patients, mean changes in per cent scores were large (scores improved between 40 and 56 for the Physical and School & Play domains, and 17 and 21 for Emotional); all effect sizes (ES) were large (>0.8). For elective patients, the mean improvement in per cent scores were more moderate (Physical: child 10, ES = 0.4, parent 11, ES = 0.5; School & Play child 0, ES = 0, parent 9 ES = 0.4; Emotional: child 6, ES = 0.2; parents 8, ES > 0.3). Minimal detectable change (MDC(90)), an indication of measurement error, ranged from 6 to 8. Half the standard deviation of baseline scores ranged from 11 to 18. Minimal important difference could only be calculated for elective patients (9 child and 13 parent ratings), these ranged from 7 to 17.
CONCLUSIONS: The findings support the responsiveness and longitudinal validity of the scales. Changes in domain scores of, or exceeding, the MDC(90) (6-8) are likely to be beyond measurement error; further work is required to refine the estimate of change that can be considered important.
There is increasing recognition of the credibility and utility of patient reported outcome measures, both in research and as routine quality indicators. This paper reviews the development of a questionnaire for children with foot or ankle problems and integrates the findings from three previously published studies in a cohesive way for the orthotic community. The Oxford Ankle Foot Questionnaire for Children was designed to evaluate the effectiveness of interventions. The development process was conducted in three phases. First the items were devised through focus groups with children affected by foot and ankle problems, and their parents. Second, test versions of child and parent questionnaires were evaluated to enable scales to be developed and tested for validity and reliability. Finally, findings from a prospective study assessing how scores changed over time and/or with treatment supported the longitudinal validity and responsiveness of the scales. The questionnaire offers an inexpensive and expedient means to evaluate the effectiveness of orthoses and other interventions used to treat children's foot or ankle problems. The Oxford Ankle Foot Questionnaire for Children has broad utility both in routine clinical settings, or applied research to evaluate treatment programmes and interventions used in paediatric orthopaedics, trauma and rheumatology.
I thought it was free to use on the individual/clinical setting but if you are using them in large amounts in a research study there was a license fee. Probably best to check. I know we have a license for use as we are using it for research.
Cylie.... in a permanent state of confusion