Table 3.
Overview of nine studies in which aggregate results were offered to participants
| Study | Year | No of patients | Population | Comment |
|---|---|---|---|---|
| Elbourne 11 | 1987 | 247 | Pregnant women allowed access to their obstetric records | 99/247 women mentioned looking forward to receiving study results in response to an open‐ended question about their feelings regarding enrolment |
| Bunin et al. 12 | 1996 | 109 | Mothers of paediatric patients with brain tumours | Mothers of patients rated the importance of study results as 4.5/5 on Likert scale |
| Snowdon et al. 13 | 1998 | 24 | Parents of infants in a clinical trial of extracorporeal membrane oxygenation (ECMO) | Qualitative description that parents of infants in trial ‘felt strongly they should be sent the trial results’ |
| Partridge et al. 14 | 2003 | 51 | Women in a trial of treatment for breast cancer | 96% of respondents wanted to be informed of trial results |
| Schulz et al. 15 | 2003 | 382 | Children who survived retinoblastoma and parents of affected children | 1.4% of respondents would have preferred not to receive results regarding their risk of developing future cancers |
| Fernandez et al. 16 | 2005 | 20 | Adolescents with cancer and parents of children with cancer | 90% of participants wished to receive the results of research in which they participated |
| Partridge et al. 1 | 2005 | 94 | Women in a treatment trial for ductal carcinoma in situ | 90% of participants elected to receive results related to the early closure of the trial |
| Dixon‐Woods et al. 8 | 2006 | 8,941 | Women in a randomized controlled trial of antibiotics during pregnancy | 20% of participants requested trial results Many of those who requested aggregate results also wanted information regarding their treatment allocation |
| Fernandez et al. 17 | 2007 | 40 | Adolescents with cancer and parents of children with cancer | 100% of 30 parents and 10 adolescents wanted to receive study results regardless of implication. More than 95% felt they had ‘strong’ or ‘very strong’ rights to receive study results |
| Dorsey et al. 19 | 2008 | 217 | Men and women with mild to moderate Huntingdon’s disease | 89% of participants reported high satisfaction with site telephone call but only 50% were satisfied with the sponsor’s press release |
| Fernandez et al. 18 | 2009 | 495 | Parents of children with cancer and adolescents with cancer | 94% parents felt that they had a right to see the results of research and had specific preferences of how and what information should be communicated |
Adapted and updated from Shalowitz and Miller.