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A Study of Distress and Parenting Concerns Among Adults with Cancer


The proposed survey study seeks to refine and validate the Parenting Concerns Questionnaire (PCQ), a new instrument that measures parenting concerns among adults with cancer who have children 18 years of age or younger. Background: The NCI estimates that 24% of adults with cancer have children under 18. Parenting concerns likely contribute to psychosocial distress in this population. Women under 50 are known to have greater psychosocial morbidity and poorer QoL, compared to older breast cancer patients, but it is not clear what the contributing factors are. Patients with clinically significant psychosocial distress are more likely to report problems dealing with their children, and yet there are no other data on parenting status and it's impact on patient distress. Pilot data on the PCQ indicates that parents with cancer have at significant levels of concern about their children and how to help them cope with the illness. Specific aims include: 1) To qualitatively refine and ensure acceptability of the PCQ. 2) To establish the reliability and validity of the PCQ. 3) To document the nature, pervasiveness and intensity of parenting concerns among cancer patients. Methods: This is an observational survey of 150 parents with cancer to test reliability and validity of the PCQ, and to document levels of psychosocial distress. Focus groups and qualitative data analyses will be used to refine the PCQ, followed by survey data collection in the outpatient clinics at the MGH Cancer Center (N=150). Principal components analyses with varimax rotation and Cronbach's alpha will be used to establish reliability and validity. Descriptive analyses of PCQ scores will be conducted, and scores will be correlated to measures of psychological distress (Distress Thermometer, HADS), QoL (FACT) and perceived prognosis. We will use a simultaneous multiple regression model for scores on the new PCQ, controlling for other measures of distress, to assess whether parenting concerns independently predict psychosocial distress. Conclusions: By developing a valid and reliable that can describe the nature and intensity of parenting concerns scale for clinical and research practice, we will contribute to an understanding of how these concerns affect the psychosocial distress of adults in treatment for cancer. This is a first step towards effectively addressing these issues and preventing multi-generational family distress.


Funded by the NIH National Center for Advancing Translational Sciences through its Clinical and Translational Science Awards Program, grant number UL1TR002541.