Self-Reporting Tool On Pain in People with Intellectual Disabilities (STOP-ID!): a Usability Study

ABSTRACT

The use of the Self-reporting Tool On Pain in people with Intellectual Disabilities (STOP-ID!), an online application developed by the authors to aid in the self-reporting of pain, was evaluated in 40 adults with Down syndrome. Comprehension of the use of the tool (the ability to recognize representations for vocabulary and pain, and to navigate the tool interface), and the use of the tool to self-report pain experience, were investigated. The use of the online tool was investigated with both a laptop and a tablet computer in a crossover design. The results provide evidence that more participants recognized representations of pain location and pain affect than representations of pain intensity and pain quality. A small percentage of participants demonstrated the ability to recognize all of the representations of vocabulary items and to navigate the tool without assistance (18% laptop, 18% tablet). Half of the participants were able to report at least one pain component of a current or remembered pain experience without assistance (50% laptop, 53% tablet). Ways to improve the design of tools for reporting pain and to improve performance are suggested.

KEYWORDS:

• Down syndrome
• pain assessment
• augmentative and alternative communication
• computer applications

Acknowledgements

We would like to thank the participants of Stichting Philadelphia Zorg, their families, and caregivers for participating in the study; J. Verbeek and his team (Stichting OOKJIJ) for the development of the STOP-ID!; the physicians M. J. A. Hermans, E. Booij, and E. Middelhoven for their review of physical conditions; Sclera for the development of the facial pictograms and the pictograms for quality of pain; and Prof. J. Passchier (Department of Clinical Psychology of VU University) for his critical reading of the manuscript.

Disclosure statement

The authors report no conflicts of interests. The authors alone are responsible for the content and writing of this paper.

Funding information

This research was supported by grants from Fonds NutsOhra [Grant: 1003-083], Fonds Verstandelijk Gehandicapten [Grant: 2010/020], Innovatiefonds Zorgverzekeraars [Grant: 2360], and Alzheimer Nederland [Grant: WE.09-2012-01].

Notes

1 The scores for the intellectual level for the participants should be interpreted with caution, as there is evidence that for at least two of the participants, the use of the SRZ-P instead of the SRZ appeared incorrect according to guidelines in the manuals.

2 The scores for language level should be interpreted with caution, as they are based on adaptations made by the current research team in creating a modified Dutch version of the WPPSI-R Vocabulary test, which may have resulted in a slight over-estimation of their language ability (as reported using age-equivalent scores).

3 A Latitude E5530 laptop is a product of Dell Inc., Round Rock, TX, USA.

4 Google Chrome is a product of Google Inc., Mountain View, CA, USA.

5 The iPad 2 and Smart Case are products of Apple Computers Inc., Cupertino, CA, USA.