Psychometric Validation of the Autism Impact Measure (AIM).
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ABSTRACT:
SUBMITTER: Houghton R
PROVIDER: S-EPMC6546866 | biostudies-literature | 2019 Jun
REPOSITORIES: biostudies-literature
Publications
Psychometric Validation of the Autism Impact Measure (AIM).
Houghton Richard R Monz Brigitta B Law Kiely K Loss Georg G Le Scouiller Stephanie S de Vries Frank F Willgoss Tom T
Journal of autism and developmental disorders 20190601 6
The Autism impact measure (AIM) is a caregiver-reported questionnaire assessing autism symptom frequency and impact in children, previously shown to have good test-retest reliability, convergent validity and structural validity. This study extended previous work by exploring the AIM's ability to discriminate between 'known-groups' of children, and estimating thresholds for clinically important responses. Data were collected online and electronically on computer and mobile devices; hence, it was ...[more]
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Project description:The Autism Impact Measure (AIM) was designed specifically for treatment-outcome assessment in children with ASD, focusing on treatment-relevant aspects of symptom presentation and efficient detection of short-term improvement. The AIM demonstrated strong reliability and validity in initial psychometric studies. The current study evaluated the AIM's sensitivity to change across well-established treatments. The sample included 471 children with ASD (ages 2-14) participating in one of six treatments. The AIM was administered at baseline and 6-week intervals and a battery of domain-specific concurrent measures was also administered. A longitudinal repeated measures design examined the degree to which: (a) AIM domain scores changed over time in response to treatment and (b) change in AIM domains was associated with change in measures of similar constructs. Results across growth curve models indicated that AIM domains are sensitive to change in symptoms across treatment. Across all models, symptoms decreased over time, with some deceleration in rate of improvement. For all AIM domains except Repetitive Behavior, symptoms improved as a function of treatment group. Correlations of change between AIM and other measures varied across domains (from 0.01-0.43 across measures). This was the first large-scale study to systematically evaluate sensitivity to change in a measure of core ASD symptoms. The results provide support for the AIM's ability to detect short-term improvement across symptom domains and indicate that AIM domains are sensitive to change overall and as a function of different treatment conditions. The brief repeated assessment window also highlights the AIM's utility for detecting improvements across short-term treatments. Autism Res 2020, 13: 1867-1879. © 2020 International Society for Autism Research and Wiley Periodicals LLC LAY SUMMARY: Good measures are important for assessing outcomes in children with autism. However, there are few tools for tracking short-term changes in autism symptoms. This study tested a new measure, the Autism Impact Measure (AIM), in a large group of children with autism. The results showed that the AIM appears to be a valid and accurate tool for measuring autism symptoms. The AIM may be a helpful tool for researchers and clinicians interested in tracking short-term improvements in autism symptoms.
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Project description:ObjectiveThe aim of this study was to perform psychometric testing of the Growth Hormone Deficiency-Child Impact Measure (GHD-CIM): a patient-reported outcome (PRO) for children with GHD aged 9 to < 13 years and an observer-reported outcome (ObsRO) for parents/guardians of children who are unable to answer for themselves.MethodsA non-interventional, multicenter, clinic-based study was conducted in 30 private-practice and large institutional sites in the US and the UK. Psychometric analyses were conducted following an a priori validation statistical analysis plan.ResultsA preliminary examination of the data determined a PRO version for children aged 9 to < 13 years was not psychometrically sound and therefore the decision was made to have only an ObsRO measure of the GHD-CIM, which would be suitable for children aged 4 to < 13 years. The GHD-CIM ObsRO validity analyses included 98 parents/guardians. Factor analyses identified three domains: Physical Functioning (PHYS), Social Well-Being (SWB), and Emotional Well-Being (EWB). Internal consistency reliability was acceptable for all domains and for the overall score (Cronbach's alpha > 0.70), as was test-retest reliability for the SWB, EWB and overall (above 0.70). At least one convergent validity hypotheses for each domain and overall was proven (r > 0.40). Known-groups validity hypotheses for the EWB and SWB domains were significant (p < 0.05). Associated effect sizes ranged from - 0.40 to - 0.58, indicating that the GHD-CIM is sensitive to change. Anchor-based patient and clinician ratings of severity of disease suggest a preliminary minimally important difference of 5 points for the overall score, and 5 for PHYS, 7 for EWB, and 5 for SWB.ConclusionsThe GHD-CIM ObsRO was found to be a reliable and valid measure to assess disease-specific functioning, which will provide a more complete patient-centric picture to the growth hormone therapy experience in children.Trial registrationClinicalTrials.gov NCT02580032, first posted 20 October 2015.
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Project description:Validated outcome measures with the capacity to reflect meaningful change are key to assessing potential interventions for autism spectrum disorder (ASD). We derive clinically meaningful change thresholds (MCTs) of the Autism Impact Measure (AIM) and identify factors associated with meaningful change. Baseline and 12-months follow-up survey of caregivers of 2,761 children with ASD aged 3-17 years from the U.S. Simons Foundation Powering Autism Research for Knowledge (SPARK) cohort were analyzed. Using caregiver-reported anchors for change, the 12-month change in estimated AIM MCT (95% confidence interval) for symptom improvement was -4.5 (-7.61, -1.37) points and 9.9 (5.12, 14.59) points for symptom deterioration. These anchor-based MCTs will facilitate future assessments of caregiver-reported change in AIM scores.
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Project description:PurposeRecurrent urinary tract infection (rUTI) is a highly prevalent condition associated with significant poor quality of life outcomes. A patient-reported outcome measure (PROM) of rUTI-associated psychosocial impact is urgently required to supplement clinical evaluation and validate the challenges experienced by patients. This study therefore developed and validated the Recurrent UTI Impact Questionnaire (RUTIIQ).MethodsA rigorous four-stage methodology was followed: (I) concept elicitation through a qualitative survey of the experiences of people with rUTI (N = 1983); (II) Delphi expert screening of the RUTIIQ with expert rUTI clinicians (N = 15); (III) one-to-one cognitive interviews with people experiencing rUTI (N = 28) to evaluate the comprehensiveness and comprehensibility of the RUTIIQ, and (IV) full pilot testing of the RUTIIQ with people experiencing rUTI (N = 240) to perform final item reduction and psychometric analysis.ResultsExploratory factor analysis demonstrated a five-factor structure comprising: 'patient satisfaction', 'work and activity interference', 'social wellbeing', 'personal wellbeing', and 'sexual wellbeing', collectively accounting for 73.8% of the total variance in pilot scores. Results from expert clinicians and patients indicated strong item content validity (I-CVI > .75). The internal consistency and test-retest reliability of the RUTIIQ subscales were excellent (Cronbach's α = .81-.96, ICC = .66-.91), and construct validity was strong (Spearman's ρ > .69).ConclusionThe RUTIIQ is a 30-item questionnaire with excellent psychometric properties, assessing the patient-reported psychosocial impact of living with rUTI symptoms and pain. This new instrument delivers the unique opportunity to enhance patient-centred care through standardised observation and monitoring of rUTI patient outcomes.Trial registrationThis study was pre-registered with ClinicalTrials.gov (identifier: NCT05086900).
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Project description:INTRODUCTION: The Fibromyalgia Impact Questionnaire (FIQ) is a commonly used instrument in the evaluation of fibromyalgia (FM) patients. Over the last 18 years, since the publication of the original FIQ, several deficiencies have become apparent and the cumbersome scoring algorithm has been a barrier to widespread clinical use. The aim of this paper is to describe and validate a revised version of the FIQ: the FIQR. METHODS: The FIQR was developed in response to known deficiencies of the FIQ with the help of a patient focus group. The FIQR has the same 3 domains as the FIQ (that is, function, overall impact and symptoms). It differs from the FIQ in having modified function questions and the inclusion of questions on memory, tenderness, balance and environmental sensitivity. All questions are graded on a 0-10 numeric scale. The FIQR was administered online and the results were compared to the same patient's online responses to the 36-Item Short Form Health Survey (SF-36) and the original FIQ. RESULTS: The FIQR was completed online by 202 FM patients, 51 rheumatoid arthritis (RA) or systemic lupus erythematosus (SLE) patients (31 RA and 20 SLE), 11 patients with major depressive disorder (MDD) and 213 healthy controls (HC). The mean total FIQR score was 56.6 +/- 19.9 compared to a total FIQ score of 60.6 +/- 17.8 (P < 0.03). The total scores of the FIQR and FIQ were closely correlated (r = 0.88, P < 0.001). Each of the 3 domains of the FIQR correlated well with the 3 related FIQ domains (r = 0.69 to 0.88, P < 0.01). The FIQR showed good correlation with comparable domains in the SF-36, with a multiple regression analysis showing that the three FIQR domain scores predicted the 8 SF-36 subscale scores. The FIQR had good discriminant ability between FM and the 3 other groups; total FIQR scores were HC (12.1 +/- 11.6), RA/SLE (28.6 +/- 21.2) and MDD (17.3 +/- 11.8). The patient completion time was 1.3 minutes; scoring took about 1 minute. CONCLUSIONS: The FIQR is an updated version of the FIQ that has good psychometric properties, can be completed in less than 2 minutes and is easy to score. It has scoring characteristics comparable to the original FIQ, making it possible to compare past FIQ results with future FIQR results.
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