Consumer Satisfaction with Involvement in Drug Research: A Social Validity Study

Caregiver Satisfaction with a Multisite Trial of Atomoxetine and Parent Training for Attention-Deficit/Hyperactivity Disorder and Behavioral Noncompliance in Children with Autism Spectrum Disorder

“…Notably, these are elements of the research experience that may set research apart from routine treatment (e.g., few families would willingly choose a distant care provider, whereas the distance from home to the research laboratory was an unfortunate fact of life that could not be optimized for every participant). In general, the high level of satisfaction in the current study confirms findings in earlier studies (Aman and Wolford 1995;McAdam et al 2002;Tierney et al 2007;Rundberg-Rivera et al 2015). We found, much as previous studies did, that caregiver satisfaction was not necessarily linked to perceived clinical response, as both responders and nonresponders to the study interventions were satisfied with the study as a whole.…”

“…The first was a survey of 40 of 63 caregivers (63.5%) whose children with intellectual disability participated in pharmacological trials to treat attention-deficit/hyperactivity disorder (ADHD) symptoms (Aman and Wolford 1995). When asked if they would join the study again if they had the option to repeat, 88% of caregivers indicated that they would, 5% were uncertain, and 7% said that they would not.…”

“…Rundberg-Rivera reported very high levels of satisfaction, with 136 caregivers (91%) stating that they would join the study again, 11 (7%) saying maybe, and 1 indicating that she would not. Therefore, of the four studies published to date, three involved children with developmental disabilities (ASD) (Aman and Wolford 1995;McAdam et al 2002;Tierney et al 2006) and one involved typically developing children (Rundberg-Rivera et al 2015). The existing evidence relating to participant satisfaction has been remarkably favorable and consistent despite varying participant diagnoses, target symptoms, intensity and duration of treatments, and modes of treatment (e.g., pharmacological, psychosocial, combination).…”

Parent satisfaction in a multi-site acute trial of risperidone in children with autism: a social validity study

“…The instrument used in the satisfaction study At week 8 (end of the acute double-blind trial) or upon early termination, parents were given a 10-item questionnaire, which was adapted for this trial from Aman and Wolford (1995), with a 3-point Likert scale (Table 1). The identity of the respondent was recorded on the survey form.…”

“…In general, parents were highly satisfied with their research experiences. In the first-ever pharmacological-social validity study involving pediatric subjects, Aman and Wolford (1995) found a high level of satisfaction among parents whose children participated in two trials involving methylphenidate and fenfluramine in children with mental retardation and ADHD. The remaining studies, which occurred between 1993 and 2003 (Johnston and Fine 1993;Pelham et al 2001;Wolraich et al 2001;Biederman et al 2002;Dirkson et al 2002;Wan and Bukstein 2003;Wilens at al.…”