An Informant Report Behavior Diary for Measuring Temper Outbursts in an Intervention Setting

Bull, Leah; Oliver, Chris; Tunnicliffe, P; Woodcock, Kate

doi:10.1007/s10882-015-9429-1

Cited by 4 publications

(4 citation statements)

References 49 publications

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“…In previous research with the present participants, recordings of heart rate and activity level have indicated that physiological arousal is consistently elevated during periods when caregivers report outburst occurrences. In addition, high concurrence between outburst nature as described in diaries and informant report structured interviews was demonstrated (Bull, Oliver, Tunnicliffe et al, 2015). Importantly, this previous examination of the validity of the behaviour diaries did not allow investigation of the validity of the 10-point intensity ratings.…”

Section: Informant Report Behaviour Diarymentioning

confidence: 93%

“…All families had previously participated in the studies described in (Bull, Oliver, Tunnicliffe & Woodcock, 2015;and Bull, Oliver, Callaghan & Woodcock, 2015), which included the development of the presently applied behaviour diary, and table top games used here in the researcher led teaching (below). The telephone interview was conducted at the beginning of the participation timeline across all studies (which ran over up to 24 months).…”

Section: Participantsmentioning

confidence: 99%

See 1 more Smart Citation

Signalling changes to individuals who show resistance to change can reduce challenging behaviour

Bull

Oliver

Woodcock

2017

Journal of Behavior Therapy and Experimental Psychiatry

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Section: Informant Report Behaviour Diarymentioning

confidence: 93%

Section: Participantsmentioning

confidence: 99%

Signalling changes to individuals who show resistance to change can reduce challenging behaviour

Bull

Oliver

Woodcock

2017

Journal of Behavior Therapy and Experimental Psychiatry

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“…Finally, the Aberrant Behavior Checklist (ABC-2 [ 60 ]; irritability scale) which has been used widely in studies on those with intellectual disability may provide a useful validated measure of temper outbursts in PWS. Bespoke informant diary measures [ 61 ] and structured interviews [ 54 ] have also been used with some preliminary evidence of validity in PWS.…”

Section: Temper Outbursts In Pwsmentioning

confidence: 99%

Behavioral features in Prader-Willi syndrome (PWS): consensus paper from the International PWS Clinical Trial Consortium

Schwartz

Caixàs

Dimitropoulos

et al. 2021

J Neurodevelop Disord

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Prader-Willi syndrome (PWS) is a rare neurodevelopmental genetic disorder associated with a characteristic behavioral phenotype that includes severe hyperphagia and a variety of other behavioral challenges such as temper outbursts and anxiety. These behaviors have a significant and dramatic impact on the daily functioning and quality of life for the person with PWS and their families. To date, effective therapies addressing these behavioral challenges have proven elusive, but several potential treatments are on the horizon. However, a limiting factor for treatment studies in PWS is the lack of consensus in the field regarding how to best define and measure the complex and interrelated behavioral features of this syndrome. The International PWS Clinical Trials Consortium (PWS-CTC, www.pwsctc.org) includes expert PWS scientists, clinicians, and patient advocacy organization representatives focused on facilitating clinical trials in this rare disease. To address the above gap in the field, members of the PWS-CTC “Behavior Outcomes Working Group” sought to develop a unified understanding of the key behavioral features in PWS and build a consensus regarding their definition and description. The primary focus of this paper is to present consensus definitions and descriptions of key phenotypic PWS behaviors including hyperphagia, temper outbursts, anxiety, obsessive–compulsive behaviors, rigidity, and social cognition deficits. Patient vignettes are provided to illustrate the interrelatedness and impact of these behaviors. We also review some available assessment tools as well as new instruments in development which may be useful in measuring these behavioral features in PWS.

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“…The design was based on a previous semi-structured interview for assessing temper outbursts in people with PWS (Tunnicliffe et al, 2014). This interview had good inter-rater reliability and showed convergent validity with another measure of temper outbursts, a behaviour diary (Bull et al, 2015). Open questions were designed to allow free response from informants whilst minimising bias from the interviewer.…”

Section: Methodsmentioning

confidence: 99%

Skin Picking in People with Prader–Willi Syndrome: Phenomenology and Management

Bull

Oliver

Woodcock

2020

J Autism Dev Disord

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Skin picking is highly prevalent in people with Prader-Willi syndrome (PWS). This study addressed the temporal (frequency, duration) and wider characteristics (e.g. type of skin picked, apparent motivations, or management strategies) of skin picking to inform intervention strategies. Nineteen parents/carers who observe skin picking shown by the person they care for completed a semi-structured interview. Results were consistent with previous research but advanced the field by finding that most participants picked skin with an imperfection and that parents/carers most commonly use distraction as a management strategy. Interventions that are behavioural, support emotion regulation and/ or are used in the typically developing population are therefore likely to be beneficial for future research.

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An Informant Report Behavior Diary for Measuring Temper Outbursts in an Intervention Setting

Cited by 4 publications

References 49 publications

Signalling changes to individuals who show resistance to change can reduce challenging behaviour

Signalling changes to individuals who show resistance to change can reduce challenging behaviour

Behavioral features in Prader-Willi syndrome (PWS): consensus paper from the International PWS Clinical Trial Consortium

Skin Picking in People with Prader–Willi Syndrome: Phenomenology and Management

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