The impact of pediatric blood and marrow transplant on parents: Introduction of the parent impact scale

Background: Parents often experience stress-related complications when their child requires blood and marrow transplant (BMT). Previous studies have described the emotional toll BMT places on parents during the acute phase of care and within the context of clinical complications. In this paper we introduce the Parent Impact Scale (PARimpact), designed to capture physical and emotional challenges of the child's health on the parent. The primary aim of this paper is to examine psychometric properties of PARimpact, and the secondary aim is to explore factors associated with PARimpact scores for further hypothesis generation. Methods: This analysis used a merged dataset of two longitudinal studies. Accompanying parents (n = 363) of children undergoing BMT were surveyed up to six times from pre-BMT baseline to one year after their child's BMT. For this analysis, pre-BMT baseline responses to PARimpact were used to examine the factor structure with Principal Component Analysis (PCA) and Exploratory Factor Analysis (EFA). Construct validity was assessed, and multivariable regression was used to examine relationships between PARimpact and BMT clinical variables. Results: PCA and EFA revealed a one-factor solution with acceptable item loading; Cronbach's aα was 0.83 at baseline. Hypothesized differences in known groups were detected for BMT complications with significantly higher PARimpact scores for those with vs. without each complication. In the adjusted multivariable regression models, acute graft versus host disease (b = 5.3; p = 0.03), end organ toxicity (b = 5.9; p < 0.01), and systemic infection (b = 9.1; p < 0.01) were associated with significantly higher mean PARimpact scores in the first 3 months following transplant. After the first 3 months to 1 year post BMT, systemic infection was associated with increased mean PARimpact scores (b = 19.2; p < 0.01). Conclusions: Initial results suggest that the PARimpact is valid and reliable. Our finding that clinical complications increase the impact of BMT on the caretaking parent indicates the need for BMT healthcare professionals to identify these events and help parents navigate the BMT course. Clinical application of the PARimpact scale should be considered to identify high-risk families and provide targeted interventions to augment care

Using self-reported data on the social determinants of health in primary care to identify cancer screening disparities: opportunities and challenges

BACKGROUND: Data on the social determinants of health can help primary care practices target improvement efforts, yet relevant data are rarely available. Our family practice located in Toronto, Ontario routinely collects patient-level sociodemographic data via a pilot-tested survey developed by a multi-organizational steering committee. We sought to use these data to assess the relationship between the social determinants and colorectal, cervical and breast cancer screening, and to describe the opportunities and challenges of using data on social determinants from a self-administered patient survey. METHODS: Patients of the family practice eligible for at least one of the three cancer screening types, based on age and screening guidelines as of June 30, 2015 and who had answered at least one question on a socio-demographic survey were included in the study. We linked self-reported data from the sociodemographic survey conducted in the waiting room with patients’ electronic medical record data and cancer screening records. We created an individual-level income variable (low-income cut-off) that defined a poverty threshold and took household size into account. The sociodemographic characteristics of patients who were overdue for screening were compared to those who were up-to-date for screening for each cancer type using chi-squared tests. RESULTS: We analysed data for 5766 patients for whom we had survey data. Survey participants had significantly higher screening rates (72.9, 78.7, 74.4% for colorectal, cervical and breast cancer screening respectively) than the 13, 036 patients for whom we did not have survey data (59.2, 65.3, 58.9% respectively). Foreign-born patients were significantly more likely to be up-to-date on colorectal screening than their Canadian-born peers but showed no significant differences in breast or cervical cancer screening. We found a significant association between the low-income cut-off variable and cancer screening; neighbourhood income quintile was not significantly associated with cancer screening. Housing status was also significantly associated with colorectal, cervical and breast cancer screening. There was a large amount of missing data for the low-income cut-off variable, approximately 25% across the three cohorts. CONCLUSION: While we were able to show that neighbourhood income might under-estimate income-related disparities in screening, individual-level income was also the most challenging variable to collect. Future work in this area should target the income disparity in cancer screening and simultaneously explore how best to collect measures of poverty. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (doi:10.1186/s12875-017-0599-z) contains supplementary material, which is available to authorized users