The cancer caregiving burden trajectory over time: varying experiences of perceived versus objectively measured burden.

INTRODUCTION: The objective of this study was to comprehensively understand the burden experienced by caregivers (CGs) providing home-based, end-of-life care to patients with cancer. We examined the relationship between objective and subjective burden including whether and how burden changes over time. METHODS: A case series of terminal cancer patient-caregiver dyads (n = 223) were recruited from oncology clinics and followed for 12 months or until patient death. Data were collected every other week and in-person from CGs in their homes using quantitative surveys, diaries, and monthly structured observations. RESULTS: Bivariate correlations revealed a significant association between subjective burden and activities of daily living (ADLs), instrumental activities of daily living (IADL), high-intensity tasks, and time spent on ADLs; these correlations varied over time. Models examining the slope of subjective burden revealed little systematic change; spouse caregiver and patient functional limitations were positively, and Black caregiver was negatively associated with subjective burden. Generally, the slopes for measures of objective burden were significant and positive. Models showed subjective burden was positively associated with most measures of objective burden both within caregiver (concurrent measures were positively associated) and between CGs (those with higher subjective also had higher objective). CONCLUSIONS: Cancer caregiving is dynamic; CGs must adjust to the progression of the patient's disease. We found an association between subjective and objective burden both within and between CGs. Black CGs were more likely to report lower subjective burden compared to their White counterparts. More detailed investigation of the sociocultural components that affect caregiver experience of burden is needed to better understand how and where to best intervene with targeted supportive care services.

The presence of a secondary caregiver differentiates primary cancer caregiver well-being.

BACKGROUND: Informal caregivers play a fundamental role in the care of hematological cancer patients, but less is known about how secondary caregivers are involved. We assessed the presence or absence of a secondary caregiver, the types of caregiving activities performed by primary and secondary caregivers, and examined whether the presence of a secondary caregiver was associated with primary caregiver characteristics and well-being over time. METHODS: A case series of hematological cancer patient-caregiver dyads (n = 171) were recruited from oncology clinics in Virginia and Pennsylvania and followed for 2 years. Multilevel models were developed to examine the associations between the presence of a secondary caregiver and the primary caregivers' well-being. RESULTS: Most (64.9%) primary caregivers reported having secondary caregivers. Multilevel models showed primary caregivers without help had higher baseline mental and physical health, but experienced deteriorating physical health over time, compared to supported primary caregivers. Supported primary caregivers reported improvements in mental health over time that was associated with improvements in physical health. CONCLUSIONS: Primary caregivers in good physical and mental health at the beginning of their caregiving journey but who have the least assistance from others may be at greatest risk for detrimental physical health effects long term. Attention to the arrangement of caregiving roles (i.e., who provides what care) over time is needed to ensure that caregivers remain healthy and well supported.

Adverse childhood experiences, adult trauma, and depressive symptom trajectories.

OBJECTIVES: Associations among adverse childhood experiences prior to age 18 (ACEs), subjective reports of trauma during Hurricane Sandy, and trajectories of depressive symptoms reported by community-dwelling older people were examined. METHODS: We analyzed 6 waves of data from 5,688 people aged 50-74 recruited in 2006 and followed for 12-years using multilevel mixed effects models. RESULTS: We found that: (1) people who experienced ACEs had trajectories of depressive symptoms in late life that were higher than people not having these experiences, (2) people experiencing two or more ACEs were more likely to report fear and distress when Hurricane Sandy hit than people experiencing either one or no adverse childhood experiences, and (3) while both ACE exposure and peri-traumatic stress were associated with trajectories having higher levels of depressive symptoms, the risk associated with ACEs (especially multiple ACEs) was greater. CONCLUSION: Findings support life course stress theories including the cumulative inequality theory and stress proliferation theory, suggesting that inequalities are manifested over the life course and that people experiencing adversity during childhood are at increased risk of experiencing adversity in late life. By studying the relationship between adverse childhood experiences and response to Hurricane Sandy our findings demonstrate that adverse childhood experiences can alter the way traumatic events in adulthood are experienced. This finding in turn, has important implications for clinical practice, as it identifies a group of people likely to be at risk for adult trauma.

The Prospective Association of Personality Traits and Successful Aging.

We used data (N = 928) from ORANJ BOWL, a six-wave panel of adults (aged 50-74 at baseline) to address the association between personality and successful aging at two points in time, 8 years apart. Regressions examined the associations between Wave 2 neuroticism, extraversion, openness, agreeableness, and conscientiousness and Wave 3 subjective success, functional ability, pain, and chronic conditions. Models tested personality traits independently and then simultaneously, with interactions. Confirmatory analyses used Waves 5/6 data. All traits but openness were individually associated with successful aging at both time points. When testing traits simultaneously, only neuroticism and extraversion were consistently associated with subjective success, with an interaction at Waves 2/3. Neuroticism (Waves 2/3) and conscientiousness (Waves 5/6) were associated with functional ability. Neuroticism was associated with pain (Waves 2/3). Personality was not associated with chronic conditions. These analyses set up future work examining relationships between change in personality and change in successful aging.

A cross-sectional analysis of associations between lifestyle advice and behavior changes in patients with hypertension or diabetes: NHANES 2015-2018.

Clinicians supporting patients in lifestyle behavior change is an important strategy to help reduce chronic disease burden. Using National Health and Nutrition Examination Survey (NHANES) data from 2015 to 2018, this study assessed rates of and associations between patient-reported receipt of lifestyle behavior change advice and corresponding self-reported behavior change for four different lifestyle behaviors: 1) weight loss, 2) increase physical activity, 3) reduce sodium, and 4) reduce fat and calories. Adult survey respondents with hypertension and/or diabetes (n = 4716) who received lifestyle advice ranged from 43% to 58%, with the most common recommendation being to increase physical activity. Between 61% and 73% of respondents reported currently modifying health behaviors, with the greatest number reporting weight loss. Multiple logistic regression models were used to test associations for each lifestyle behavior advice-behavior change pair, adjusting for demographic characteristics. Compared to those who received no advice, respondents who received advice had significantly higher odds of reporting losing weight (aOR: 1.93; 95% CI: 1.51, 2.48); increasing physical activity (aOR 2.02; 95% CI: 1.73, 2.37); reducing dietary sodium (aOR 4.95; 95% CI: 3.93, 6.25); and reducing intake of fat/cal (aOR 3.57; 95% CI: 2.86, 4.45). This study utilized population level data to lend further evidence that provider advice about lifestyle behaviors for patients who have hypertension or diabetes may influence patient behavior. However, prevalence of advice is low, and differences in rates of behavior change exist across socioeconomic status and race/ethnicity, indicating a need to further research how providers might better support patients with varying social needs.

Making a family decision to donate the brain for genomic research: lessons from the genotype-tissue expression project (GTEx).

This study sheds light on the attitudes and circumstances that influence decisions by families to donate the brain of a deceased family member for research. This study, a part of the Genotype-Tissue Expression (GTEx) project, interviewed families of patients who had authorized organ and/or tissue donation for transplantation. A total of 384 family decision makers (FDMs) who decided to donate organs and/or tissues for transplantation were also asked to donate to GTEx. Of these, 297 families were asked to donate their loved one's whole brain and 87 families responded to a hypothetical request for brain donation. The decision to donate the brain to GTEx, actually or hypothetically, was the major outcome measure. The majority of the FDMs would choose to donate the brain, 78%. Unwillingness to donate the brain was associated with four attitudes: (1) the FDM unwillingness to donate their own tissues for research (OR 1.91, 95% CI .67 to 2.96; p = .05), (2) concern with potential for-profit use of tissues (OR 2.12, 95% CI 1.2 to 3.7; p = .008), (3) reported squeamishness about tissue donation (OR 1.34, 95% CI 1.1 to 1.7; p = .006), and (4) belief that FDMs should have a say in how the donated tissues are used (OR 1.36, 95% CI 1.13 to 1.5; p = .01). Organ and tissue donors may present a plenteous source of brains for research. Family concerns about tissue use and collection should be addressed by requesters.

Hematological cancer patient-caregiver dyadic communication: A longitudinal examination of cancer communication concordance.

OBJECTIVE: Informal caregivers play a fundamental role in care and decision making with hematological cancer patients. Concordant patient-caregiver communication is a critical antecedent to high quality decision making. Little is known about patterns of dyadic communication throughout the cancer treatment continuum. The objective of this study was to assess patterns of cancer communication concordance regarding treatment and care among hematological cancer patients undergoing active treatment and their informal caregivers and test whether patterns were associated with participant characteristics. METHODS: A case series of hematological cancer patient-caregiver dyads (n = 171) were recruited from oncology clinics in Virginia and Pennsylvania and followed for 2 years. Latent Class Growth Models (LCGM) were used to analyze longitudinal data captured using Cancer Communication Assessment Tool for Patients and Families (CCAT-PF) and the association with participant characteristics. RESULTS: White patient-caregiver dyads demonstrated decreased communication concordance and African American dyads demonstrated increased communication concordance over time. Lower communication concordance was found among dyads with lower levels of education and income, and cancers diagnosed at more advanced stages; these relationships were stable over time. Modeling identified the presence of three distinct communication groups (Stable Concordant (57.4%), Fluctuating Medium Concordant (37.8%), High Discordant (5.4%)) that differed by baseline level of communication concordance, patterns of concordance over time, race, income and the dyad relationship. CONCLUSIONS: Patient-caregiver cancer communication concordance was not static overtime. Results suggest the presence of a new dyadic cancer communication typology that could help preemptively identify dyads at risk for communication difficulties that impede treatment decision making.

Authorization of tissues from deceased patients for genetic research.

Tissues from deceased donors provide important data for genomic research and Organ Procurement Organizations (OPOs) play a significant role. To understand the decisions of families who donated for transplantation and made decisions about donation to the Genotype-Tissue Expression Project (GTEx), we examined donation decisions of family decision makers (FDMs). 413 families were interviewed by telephone. The OPO staff who made the transplant and research requests completed self-administered surveys; a total of 309 matching surveys from 99 OPO staff were obtained. 76.8% of families donated to the GTEx project. Logistic regression analysis found that FDM consent to GTEx donation was associated with endorsement of policies to promote biobanking (OR = 1.35), positive attitudes about medical research (OR = 1.1), lack of concern regarding a breach of confidentiality (OR = 1.54), comfort with tissue donation (OR = 1.24), and prior authorization to solid organ donation (OR = 3.17). OPO staff characteristics associated with GTEx donation included being female (OR = 3.57), White (OR = 4.97), comfort with hospital staff role in donation (OR = 1.61), and number of topics discussed with families (OR = 57.9). Donor type, FDM attitudes, OPO staff sociodemographics, OPO comfort with the GTEx authorization process, and intensity of discussing research-specific issues were significantly associated with GTEx donation decisions.

How Inaccurate Metrics Hide the True Potential for Organ Donation in the United States.

BACKGROUND: There is a discrepancy between the reported increase in donor conversion rates and the number of organs available for transplant. METHODS: Secondary analysis of data obtained from the Scientific Registry of Transplant Recipients from January 2003 through December 2015 was performed. The primary outcomes were the (1) number of brain-dead donors from whom solid organs were recovered and (2) number of the organs transplanted. Descriptive statistics and growth plots were used to examine the trajectory of organ donation, recovery, and transplantation outcomes over the 11-year period. RESULTS: From 2003 to 2006, the number of brain-dead donors increased from 6187 to 7375, remaining relatively stable at approximately 7200 thereafter. The average eligible deaths per organ procurement organization dropped from 182.7 (standard deviation [SD]: 131.3) in 2003 to 149.3 (SD: 111.4) in 2015. This suggests a total of 12 493 unrealized potential donors (2006-2015). CONCLUSIONS: Since 2006, a steady decline in the number of donor-eligible deaths was reported. In 2003, the reported eligible deaths was 11 326. This number peaked in 2004 at 11 346, tumbling to 9781 eligible donors in 2015, despite a 9% increase in the US population. From 2006 to 2015, the data indicate an artificial depression and underestimation of the true potential of brain-dead donors in the United States of conservatively 12 493 donors or 39 728 missing organs. New metrics providing objective but verifiable counts of the donor pool are needed.

Illness Representations of Multiple Chronic Conditions and Self-Management Behaviors in Older Adults: A Pilot Study.

This article explores the intraindividual variability in illness representations of people with multiple chronic conditions and examines how representations of hypertension and arthritis are associated with self-management. Intraclass correlations determined the proportion of within-person variability in illness representations including Timeline, Consequences, Personal Control, and Timeline-Cyclical for 25 adults aged 64 and older. Within-person consistency across illnesses was present for Timeline and Timeline-Cyclical, but variability across illnesses in Personal Control and Consequences. Correlations revealed associations of diet, exercise, and sleep with illness representations of people with arthritis and hypertension. Representations of hypertension (Personal Control, Timeline-Cyclical, and Consequences) were associated with adherence to a reduced fat diet, walking, and total sleep time. Representations of arthritis were not associated with health behaviors. Findings demonstrate that clinical practice must consider the illness representations patients have about each of their chronic illnesses to begin to sustain positive self-management behaviors.

Impact of Cognitive Load on Family Decision Makers' Recall and Understanding of Donation Requests for the Genotype-Tissue Expression (GTEx) Project.

Genomic research projects that collect tissues from deceased organ and tissue donors must obtain the authorization of family decision makers under difficult circumstances that may affect the authorization process. Using a quasi-experimental design, the Ethical, Legal, and Social Issues (ELSI) substudy of the Genotype-Tissue Expression (GTEx) project compared the recall and understanding of the donation authorization process of two groups: family members who had authorized donation of tissues to the GTEx project (the comparison group) and family members who had authorized organ and tissue donations in years previous, who subsequently participated in two different mock-authorization processes that mimicked the GTEx authorization process (the intervention groups). Participants in the comparison and intervention groups were matched on key demographic characteristics. We found that participants in the intervention groups who experienced a mock-authorization process demonstrated better recall of the tissue donation request than members of the comparison group. Our data indicate that the stress associated with the loss of a loved one limited the ability of family members to recall details about the GTEx project. However, we found a similar lack of knowledge in both the comparison and the intervention group participants, suggesting lack of knowledge may be due to the complexity and unfamiliarity of the information presented to them during the authorization process. We discuss these findings in the context of everyday clinical decision making in cognitively challenging conditions.

Oral health-related quality of life in youth receiving cleft-related surgery: self-report and proxy ratings.

PURPOSE: This paper evaluated the impact of cleft-related surgery on the oral health-related quality of life (OHRQoL) of youth with cleft over time. METHODS: Data were derived from a 5-year, multi-center, prospective, longitudinal study of 1196 youth with cleft lip and/or palate and their caregivers. Eligible youth were between 7.5 and 18.5 years old, spoke English or Spanish, and were non-syndromic. During each observational period, which included baseline, and 1- and 2-year post-baseline follow-up visits, youths and their caregivers completed the Child Oral Health Impact Profile, a validated measure of OHRQoL. Multilevel mixed-effects models were used to analyze the effects of receipt of craniofacial surgery on OHRQoL over time. RESULTS: During the course of this study a total of 516 patients (43 %) received at least one surgery. Youth in the surgery recommendation group had lower self- (ß = -2.18, p < 0.05) and proxy-rated (ß = -2.92, p < 0.02) OHRQoL when compared to non-surgical self- and proxy-rated OHRQoL at baseline. Both surgical and non-surgical youth (ß = 3.73, p < 0.001) and caregiver (ß = 1.91, p < 0.05) ratings of OHRQoL improved over time. There was significant incremental improvement (time × surgery interaction) in self-reported OHRQoL for youth postsurgery (ß = 1.04, p < 0.05), but this postsurgery increment was not seen in the caregiver proxy ratings. CONCLUSIONS: Surgical intervention impacts OHRQoL among youth with cleft. Youth who were surgical candidates had lower baseline self- and caregiver-rated OHRQoL when compared to non-surgical youth. Youth who underwent cleft-related surgery had significant incremental improvements in self-rated but not caregiver (proxy)-rated OHRQoL after surgery.

Exposure to Hurricane Sandy, neighborhood collective efficacy, and post-traumatic stress symptoms in older adults.

OBJECTIVES: Older adults exposed to natural disasters are at risk for negative psychological outcomes such as post-traumatic stress disorder (PTSD). Neighborhood social capital can act as a resource that supports individual-level coping with stressors. This study explores the ability of perceived neighborhood collective efficacy, a form of social capital, to moderate the association between exposure to Hurricane Sandy and PTSD symptoms in older adults. METHOD: Data from 2205 older individuals aged 54-80 residing in New Jersey who self-reported exposure to Hurricane Sandy in October of 2012 were identified and extracted from the ORANJ BOWL™ research panel. Participants completed baseline assessments of demographic and individual-level characteristics in 2006-2008 and follow-up assessments about storm exposure, perceived neighborhood collective efficacy (social cohesion and social control), and PTSD symptoms 8-33 months following the storm. Zero-inflated Poisson regression models were tested to examine the association between exposure, neighborhood collective efficacy, and PTSD symptoms. RESULTS: After accounting for known demographic and individual-level covariates, greater storm exposure was linked to higher levels of PTSD symptoms. Social cohesion, but not social control, was linked to lower reports of PTSD symptoms and moderated the association between exposure and PTSD. The impact of storm exposure on PTSD symptoms was less for individuals reporting higher levels of social cohesion. CONCLUSION: Mental health service providers and disaster preparedness and response teams should consider the larger social network of individuals served. Building social connections in older adults' neighborhoods that promote cohesion can reduce the negative psychological impact of a disaster.

The Great Recession, Life Events, and Mental Health of Older Adults.

Historical events and personal experiences have the potential to alter the way people age. Using a life-course model, we examined how the Economic Recession of 2008 and experienced life events affected the mental health of 3,393 older adults in New Jersey. Data collected between 2006 and 2012 revealed a significant increase in mean depressive symptoms. Multinomial logistic regression analyses indicated that people with incident depression were more likely to have lost a job, become a caregiver, experienced a major illness, or have a family member with a major illness than people with no depression. Compared with the incident depression group, those with remitted depression were less likely to report having lost a job or experienced a major illness. Modeling the effects of individual life events and the economic recession on depression enriches understanding about the association between macro socioeconomic events, life events, and the mental health of older adults.

Nationwide 2.5-Year School-Based Public Health Intervention Program Designed to Reduce the Incidence of Caries in Children of Grenada.

UNLABELLED: This paper describes an innovative public health intervention, called 'Smile Grenada', targeting the oral health of children in Grenada utilizing the resources of a US dental school, several oral health care companies, local governmental and public health authorities, and Grenadian school personnel. METHODS: Preintervention visual/tactile caries examinations were collected from 1,092 schoolchildren (mean age 9.9 years, standard deviation, SD = 3.7) in 2010. The intervention included: (1) classroom-based toothbrushing with fluoridated toothpaste, (2) fluoride varnish applied by trained dental students, teachers and local providers 3 times a year and (3) glass ionomer sealants placed on first permanent molars in children aged 6-8 years. Postintervention data were collected in May, 2013 (n = 2,301, mean age 9.8 years, SD = 3.7). Decayed and demineralized surfaces were examined for the whole sample and decay/demineralization and sealant retention on 6-year molars were examined separately (ages 6-8 in 2013 cohort). RESULTS: The number of decayed/demineralized surfaces declined across all age groups. The average number of decayed surfaces dropped from 9 at baseline to just over 6 (F1, 3,393 = 69.8, p < 0.0001) and the average number of demineralized surfaces dropped from 6 to less than 2 (1.8 surfaces; F1, 3,393 = 819.0, p < 0.0001). For children aged 6-8 years, there were statistically significantly fewer decayed surfaces (t1, 2,086 = 12.40, p < 0.0001; mean baseline 0.93, SD = 1.75; mean follow-up 0.23, SD = 0.83) and demineralized surfaces (t1, 2,086 = 19.7, p < 0.0001; mean baseline 2.11, SD = 2.74; mean follow-up 0.50, SD = 0.97) on 6-year molars. The Smile Grenada program successfully demonstrated a locally sustainable model for improving oral health in children in a developing country.

Oral Health-Related Quality of Life and Self-Rated Speech in Children With Existing Fistulas in Mid-Childhood and Adolescence.

OBJECTIVE: To report the associations of oro-nasal fistulae on the patient-centered outcomes oral health-related quality of life and self-reported speech outcomes in school aged-children. DESIGN: Prospective, nonrandomized multicenter design. SETTING: Six ACPA-accredited cleft centers. PARTICIPANTS: Patients with cleft palate at the age of mixed dentition. INTERVENTIONS: None. MAIN OUTCOME MEASURES: Prevalence of fistula and location of fistula (Pittsburgh Classification System). Patients were placed into one of three groups based on the following criteria: alveolar cleft present, no previous repair (Group 1); alveolar cleft present, previously repaired (Group 2); no congenital alveolar cleft (Group 3). Presence of fistula and subgroup classification were correlated to oral health-related quality of life (Child Oral Health Impact Profile [COHIP]) and perceived speech outcomes. RESULTS: The fistula rate was 5.52% (62 of 1198 patients). There was a significant difference in fistula rate between the three groups: Group 1 (11.15%), Group 2 (4.44%), Group 3 (1.90%). Patients with fistula had significantly lower COHIP scores (F1,1188 = 4.79; P = .03) and worse self-reported speech scores (F1,1197 = 4.27; P = .04). Group 1 patients with fistula had the lowest COHIP scores (F5,1188 = 4.78, P =.02) and the lowest speech scores (F5,1188 = 3.41, P = .003). CONCLUSIONS: Presence of palatal fistulas was associated with lower oral health-related quality of life and perceived speech among youth with cleft. The poorest outcomes were reported among those with the highest fistula rates, including an unrepaired alveolar cleft.

Parent-Reported Family Functioning Among Children With Cleft Lip/Palate.

OBJECTIVE: To examine family functioning related to sociodemographic and clinical characteristics in youth with cleft lip and/or palate (CL/P). DESIGN: Cross-sectional, multi-site investigation. SETTING: Six U.S. cleft centers. PATIENTS/PARTICIPANTS: A diverse sample of 1200 children with CL/P and their parents. MAIN OUTCOME MEASURE: Parents completed the Family Environment Scale (FES), which assesses three domains of family functioning: cohesion (or closeness), expressiveness (open expression of feelings), and conflict. Demographic and clinical characteristics were also assessed including race, ethnicity, type of insurance, and surgical recommendations. RESULTS: The FES scores for families seeking team evaluations for their youth with CL/P (mean age = 11.6 years) fall within the average range compared with normative samples. Families receiving surgical recommendations for their youth also had FES scores in the average range, yet families of children recommended for functional surgery reported greater cohesion, expressiveness, and less conflict compared with those recommended for aesthetic surgery (P < .05). For cohesion and expressiveness, significant main effects for race (P = .012, P < .0001, respectively) and ethnicity (P = .004, P < .0001, respectively) were found but not for their interaction. No significant differences were found on the conflict domain. Families with private insurance reported significantly greater cohesion (P < .001) and expressiveness (P < .001) than did families with public insurance. CONCLUSIONS: Family functioning across domains was in the average range. However, observed differences by race, ethnicity, type of insurance, and surgical recommendation may warrant consideration in clinical management for patients and families.

Neighborhood food environment and obesity in community-dwelling older adults: individual and neighborhood effects.

OBJECTIVES: We tested hypotheses about the relationship between neighborhood-level food sources and obesity, controlling for individual-level characteristics. METHODS: Data (collected November 2006-April 2008) derived from a random-digit-dial sample of 5688 community-dwelling adults aged 50 to 74 years residing in 1644 census tracts in New Jersey. Using multilevel structural equation models, we created latent constructs representing density of fast-food establishments and storefronts (convenience stores, bars and pubs, grocery stores) and an observed indicator for supermarkets at the neighborhood level, simultaneously modeling obesity and demographic characteristics (age, gender, race, education, household income) at the individual level. RESULTS: When we controlled for individual-level age, gender, race, education, and household income, densities of fast-food establishments and storefronts were positively associated with obesity. Supermarkets were not associated with obesity. CONCLUSIONS: Because people living in neighborhoods with a higher density of fast food and storefronts are more likely to be obese, these neighborhoods may be optimal sites for interventions.

Examination of a theoretical model for oral health-related quality of life among youths with cleft.

OBJECTIVES: We evaluated relationships among physical and psychological indicators and oral health-related quality of life (OHRQOL) in youths with cleft. METHODS: We recruited youths aged 7 to 18 years with cleft palate (n = 282) or cleft lip and palate (n = 918) and their caregivers into a 5-year observational investigation at 6 US treatment centers from 2009 to 2011. At baseline, youths completed surveys to assess psychological status. After clinical evaluation, 433 youths received a recommendation for surgery. We developed structural models from the baseline data incorporating age, gender, race, and cleft diagnosis to examine direct relationships between depressive symptoms and, in separate models, self-concept and sense of mastery and OHRQOL. Subsequent models examined the possible mediating effect of surgical recommendation. RESULTS: Depressive symptoms were negatively and self-concept and self-efficacy were positively associated with OHRQOL. Surgical recommendation appeared to mediate the effect of psychological well-being, but not depression, on OHRQOL, even after adjustment for cleft diagnosis. In some models, individual-level characteristics were significant. CONCLUSIONS: Path analyses support the theoretical model and underscore the importance of examining positive psychosocial characteristics such as resiliency and self-concept in this patient population.

Evaluation of the similarities and differences in response patterns to the Pediatric Quality of Life Inventory and the Child Oral Health Impact Scores among youth with cleft.

PURPOSE: To examine (a) the pattern of responses to a generic health-related quality of life (HRQL) measure (Pediatric Quality of Life Inventory--PedsQL) and an oral health-related quality of life (OHRQoL) measure (Child Oral Health Impact Profile--COHIP), and (b) the associations of these scores with surgical recommendation status among youth with cleft. METHODS: Cross-sectional data (baseline) regarding clinicians' surgical recommendations and quality of life (QoL) measures were examined from an ongoing observational study on treatment outcomes. Approximately one-third of the racially and geographically diverse sample (N = 1,200; mean = 11.6 years) received surgical recommendations to correct either visible (aesthetic) or invisible (functional) defects. Effect sizes were used to quantify differences in QoL based on surgical recommendation and to compare the sensitivity of the PedsQL and COHIP subscales. Using Pearson coefficients, the scores of those recommended for surgery were compared with those without a surgical recommendation. RESULTS: A moderate correlation (0.52) was found between the total scores on the PedsQL and COHIP (p < 0.0001). Subscale correlations between the QoL measures ranged from 0.19 to 0.48 with the strongest correlation between the PedsQL Emotional (r = 0.47) and COHIP Socioemotional Well-being subscale. The effect size for the COHIP Socioemotional Well-being (0.39) was larger than the PedsQL Social/Emotional (0.07/0.11) subscale (Z = 5.30/Z = 4.64, p < 0.0001, respectively), and the total COHIP (0.31) was significantly greater than the total PedsQL scale (0.15, z = 2.65, p = 0.008). CONCLUSIONS: A significant relationship was found between generic HRQL, OHRQoL, and surgical needs among youth with cleft with the COHIP having larger effect sizes than the PedsQL among surgical groups.