A B S T R A C T PurposeThere is an increasing demand for researchers to provide research results to participants. Our aim was to define an appropriate process for this, based on needs and attitudes of participants. MethodsA multicenter survey in five sites in the United States and Canada was offered to parents of children with cancer and adolescents with cancer. Respondents indicated their preferred mode of communication of research results with respect to implications; timing, provider, and content of the results; reasons for and against providing results; and barriers to providing results. ResultsFour hundred nine parents (including 19 of deceased children) and 86 adolescents responded. Most parents (n ϭ 385; 94.2%) felt that they had a strong right to research results. For positive results, most wanted a letter or e-mail summary (n ϭ 238; 58.2%) or a phone call followed by a letter (n ϭ 100; 24.4%). If the results were negative, phone call (n ϭ 136; 33.3%) or personal visits (n ϭ 150; 36.7%) were preferred. Parents wanted the summary to include long-term sequelae and suggestions for participants (n ϭ 341; 83.4%), effect on future treatments (n ϭ 341; 83.4%), and subsequent research steps (n ϭ 284; 69.5%). Understanding the researcher was a main concern about receiving results (n ϭ 145; 35.5%). Parents felt that results provide information to support quality of life (n ϭ 315; 77%) and raise public awareness of research (n ϭ 282; 68.9%). Adolescents identified similar preferences. ConclusionParents of children with cancer and adolescents with cancer feel strongly that they have a right to be offered research results and have specific preferences of how and what information should be communicated.

Palliative radiotherapy (PRT) can improve quality of life for people dying of cancer. Variation in the delivery of PRT by factors unrelated to need may indicate that not all patients who may benefit from PRT receive it. In this study, 13,494 adults who died of cancer between 2000 and 2005 in Nova Scotia, Canada, were linked to radiotherapy records. Multivariate logistic regression was used to examine the relationships among demographic, clinical, service, and geographic variables, and PRT consultation and treatment. Among the decedents, 4188 (31.0%) received PRT consultation and 3032 (22.3%) treatment. PRT declined with increased travel time and community deprivation. Females, older persons, and nursing home residents also had lower PRT rates. Variations were observed by cancer site and previous oncology care. Variations in PRT use should be discussed with referring physicians, and improved means of access to PRT considered. Benchmarks for optimal rates of PRT are needed.

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