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1.  Identification of Minimal Clinically Important Difference Scores of the PedsQL in Children, Adolescents, and Young Adults With Type 1 and Type 2 Diabetes 
Diabetes Care  2013;36(7):1891-1897.
To establish minimal clinically important difference (MCID) scores representing the smallest detectable change in quality of life (QOL), using the Pediatric Quality of Life Inventory (PedsQL) Generic Core and Diabetes Module among youth with diabetes and their parents, and to identify demographic and clinical correlates of QOL change over 1 year.
Participants in the SEARCH for Diabetes in Youth Study aged >5 years and parents of youth aged <18 years completed PedsQL surveys at their initial and 12-month study visits. MCIDs for each PedsQL module were calculated using one standard error of measurement. Demographic and clinical characteristics associated with QOL change were identified through multiple linear and logistic regression analyses.
The sample comprised 5,004 youth (mean age, 12.5 ± 4.7 years; mean diabetes duration, 3.4 ± 3.7 years). Of 100 possible points, PedsQL total score MCIDs for youth with type 1 and type 2 diabetes, respectively, were Generic Core, 4.88, 6.27 (parent) and 4.72, 5.41 (youth); Diabetes Module, 4.54, 6.06 (parent) and 5.27, 5.96 (youth). Among 1,402 youth with a follow-up visit, lower baseline QOL, male sex, private insurance, having type 1 diabetes, longer diabetes duration, and better glycemic control predicted improvements in youth- and parent-reported PedsQL total scores over 1 year. Clinically meaningful (≥1 MCID) improvements in total score for at least one PedsQL module were predicted by private insurance, lower BMI, and lower A1C at baseline.
These diabetes-specific reference points to interpret clinically meaningful change in PedsQL scores can be used in clinical care and research for youth with type 1 and type 2 diabetes.
PMCID: PMC3687260  PMID: 23340884
2.  Resilience and psychosocial outcomes in parents of children with cancer 
Pediatric blood & cancer  2013;61(3):552-557.
The psychosocial function of parents of children with cancer can impact the well-being of the entire family. Resilience resources are likely related to psychosocial outcomes and may be amenable to intervention. We hypothesized that parents with lower resources would report worse outcomes.
In the “Understanding Resilience in Parents of Children with Cancer” study, comprehensive surveys were mailed to consecutive, English-speaking parents of children with cancer who were treated at Seattle Children’s Hospital and completed therapy between 01/01/2009 and 12/31/2010. Resilience resources were measured by the Connor-Davidson Resilience Scale; outcome measures included psychological distress, health-related behaviors, social and family function, and perceived communication with the medical team.
96 parents (86% of contactable) completed the survey. Compared to population norms, enrolled parents had lower resilience resources, higher psychological distress, and more commonly reported binge drinking. Conversely, they reported higher social support and family adaptability (p<0.001–0.006). Lower resilience resources were associated with higher distress, lower social support, and lower family function (p<0.001–0.007). Parents in the lowest quartile of resilience resources had higher odds of frequent sleep difficulties (OR 5.19, 95% CI 1.74,15.45), lower health satisfaction (OR 5.71, 95% CI 2.05,15.92), and decreased ability to express worries to the medical team (OR 4.00, 95% CI 1.43,11.18).
Parents of children with cancer are at risk for poor psychosocial outcomes and those with low resilience resources may be at greater risk. Interventions directed at promoting resilience resources may provide a novel and complimentary approach towards improving outcomes for families facing pediatric cancer.
PMCID: PMC4066960  PMID: 24249426
resilience; psychosocial outcomes; parents; pediatric cancer; whole patient care
3.  Resilience Among Patients Across the Cancer Continuum: Diverse Perspectives 
Each phase of the cancer experience profoundly affects patients’ lives. Much of the literature has focused on negative consequences of cancer; however, the study of resilience may enable providers to promote more positive psychosocial outcomes before, during, and after the cancer experience. The current review describes the ways in which elements of resilience have been defined and studied at each phase of the cancer continuum. Extensive literature searches were conducted to find studies assessing resilience during one or more stages of the adult cancer continuum. For all phases of the cancer continuum, resilience descriptions included preexisting or baseline characteristics, such as demographics and personal attributes (e.g., optimism, social support), mechanisms of adaptation, such as coping and medical experiences (e.g., positive provider communication), as well as psychosocial outcomes, such as growth and quality of life. Promoting resilience is a critical element of patient psychosocial care. Nurses may enable resilience by recognizing and promoting certain baseline characteristics and optimizing mechanisms of adaptation.
PMCID: PMC4002224  PMID: 24476731
resilience; cancer; adaptation cancer screening; cancer survivorship; end-of-life care; palliative care
4.  Self-Detection Remains a Key Method of Breast Cancer Detection for U.S. Women 
Journal of Women's Health  2011;20(8):1135-1139.
The method by which breast cancer is detected becomes a factor for long-term survival and should be considered in treatment plans. This report describes patient characteristics and time trends for various methods of breast cancer detection in the United States.
The 2003 National Health Interview Survey (NHIS), a nationally representative self-report health survey, included 361 women survivors diagnosed with breast cancer between 1980 and 2003. Responses to the question, How was your breast cancer found? were categorized as accident, self-examination, physician during routine breast examination, mammogram, and other. We examined responses by income, race, age, and year of diagnosis.
Most women survivors (57%) reported a detection method other than mammographic examination. Women often detected breast cancers themselves, either by self-examination (25%) or by accident (18%).
Despite increased use of screening mammography, a large percentage of breast cancers are detected by the patients themselves. Patient-noted breast abnormalities should be carefully evaluated.
PMCID: PMC3153870  PMID: 21675875
5.  A Person-Focused Analysis of Resilience Resources and Coping in Diabetes Patients 
This study investigated the resilience resources and coping profiles of diabetes patients. A total of 145 patients with diabetes completed a questionnaire packet including two measurements of coping (COPE and Coping Styles questionnaires), and personal resources. Glycosylated hemoglobin (HbA1c) was also assessed. Resilience was defined by a factor score derived from measures of self-esteem, self-efficacy, self-mastery, and optimism. All of the maladaptive coping subscales were negatively associated with resilience (r's range from −.34 to −.56, all p's <.001). Of the adaptive coping subscales, only acceptance, emotional support, and pragmatism were positively associated with resilience. The upper, middle, and lower tertiles of the resilience factor were identified and the coping profiles of these groups differed significantly, with low resilience patients favoring maladaptive strategies much more than those with high or moderate resilience resources. Resilience groups did not differ in HbA1c levels; correlation coefficients of the coping subscales with HbA1c were explored. This study demonstrates a link between maladaptive coping and low resilience, suggesting that resilience impacts one's ability to manage the difficult treatment and lifestyle requirements of diabetes.
PMCID: PMC2880488  PMID: 20526415
Diabetes; Resilience; Coping; HbA1c

Results 1-5 (5)