Background-Both during and after treatment, cancer survivors experience declines in physical and psychosocial quality of life (QoL). Prior research indicates that exercise interventions alleviate problems in physical functioning and some aspects of psychological functioning. For survivors seeking social support, exercise programs that are conducted in group settings may foster optimal QoL improvement (by addressing additional issues related to isolation, social support) over individually-based exercise programs.
Conducting rigorous psychosocial intervention research with cancer patients has many challenges including encouraging them to join studies, asking them to engage in interventions or be part of control conditions, and to provide data over follow-up assessments. Here, we highlight valuable insights regarding such challenges provided by investigators studying psychosocial interventions for cancer patients. Handling these skillfully has important implications for the internal and external validity of this research and the ethical treatment of participants. Challenges noted in research reports included in a systematic review of 25 years of research (comprising 488 unique projects) investigating interventions designed to enhance cancer patients' quality of life were compiled. Among the difficulties mentioned was the fact that patients may not feel the need for psychosocial interventions and thus may not be interested in joining an intervention study. Patients who do feel the need for such interventions may be deterred from joining trials by the prospect of being randomized to a non-preferred group; if they do join a trial, participants may be disappointed, drop out, or seek compensatory additional assistance if they are assigned to a control group. Apart from randomization, other aspects of research may be off-putting to participants or potential participants, such as the language of consent forms or the intrusiveness of questions being asked. Potential remedies, such as research awareness interventions, monetary incentives, partnering with cancer support organizations, and using designs that take preferences into account merit consideration and further research inquiry.
Little research has deliberately investigated the effects of participant preferences for treatment condition in unblinded randomized controlled trials. We designed a study with a non-patient sample comparing a randomized arm to a preference arm of the same trial to investigate: (1) whether having a choice to select one's preference affects feelings about participation, belief in treatment effectiveness, treatment contamination, intervention adherence and engagement, and trial attrition; and (2) the interaction of preferences and treatment assignment on these variables. Contamination and attrition were rare and excluded from analyses. There was no effect of choice. Participants mismatched to preference felt less positive about their experience, but this did not affect belief in treatment, adherence, or engagement. Stronger effects may occur for patient populations.
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