Rationale, Procedures, and Response Rates for a Pilot Study to Sample Cancer Survivors for NCI's Health Information National Trends Survey: HINTS-SEER 2021.

The National Cancer Institute's (NCI) Health Information National Trends Survey (HINTS) is a nationally representative survey of U.S. adults in which 12-17% of respondents report a cancer history. To increase representation from adult cancer survivors, in 2021, NCI sampled survivors from three Surveillance, Epidemiology, and End Results (SEER) program cancer registries: Iowa, New Mexico, and the Greater Bay Area. Sampling frames were stratified by time since diagnosis and race/ethnicity, with nonmalignant tumors and non-melanoma skin cancers excluded. Participants completed a self-administered postal questionnaire. The overall response rate for HINTS-SEER (N = 1,234) was 12.6%; a non-response bias analysis indicated few demographic differences between respondents and the pool of sampled patients in each registry. Most of the sample was 10+ years since diagnosis (n = 722; 60.2%); 392 respondents were 5 to < 10 years since diagnosis (29.6%); and 120 were < 5 years since diagnosis (10.2%). Common cancers included male reproductive (n = 304; 24.6%), female breast (n = 284; 23.0%), melanoma (n = 119; 9.6%), and gastrointestinal (n = 106; 8.6%). Tumors were mostly localized (67.8%; n = 833), with 22.4% (n = 282) regional, 6.2% (n = 72) distant, and 3.7% (n = 47) unknown. HINTS-SEER data are available by request and may be used for secondary analyses to examine a range of social, behavioral, and healthcare outcomes among cancer survivors.

Neuroticism, cancer mortality salience, and physician avoidance in cancer survivors: Proximity of treatment matters.

OBJECTIVE: To examine if the relationship between neuroticism and physician avoidance/physician visit concerns are mediated by perceptions that cancer is associated with death ("cancer mortality salience"; CMS) for cancer survivors to inform public health interventions and tailored health communications. METHODS: Cancer survivors comprised 42.3% of the total sample (n = 525). Participants completed a 4-item neuroticism scale, 4-item cancer perceptions scale, and 4-item physician avoidance and concerns scale. Multiple linear regression models were used to assess relationships among variables for cancer survivors and separately for those without a history of cancer. RESULTS: Neuroticism was positively associated with CMS for cancer survivors, b = 0.26, (p < 0.001), and those without cancer, b = 0.22, (p < 0.001). There was an association between neuroticism and physician avoidance among cancer survivors with temporally distant treatment courses after controlling for CMS, b = 0.56 (p = 0.006), but not for those currently or recently having had undergone treatment (p = 0.949). There was also an indirect relationship between neuroticism and physician visit concerns that was mediated by CMS for cancer survivors, b = 0.07, CI = [0.03, 0.13], but this relationship was again driven by cancer survivors with more distal treatment courses. CONCLUSIONS: High neuroticism in cancer survivors is associated with physician avoidance and physician visit concerns when treatment is temporally distant. Interventions aimed at decoupling the association between cancer and death can help increase the willingness of cancer survivors to attain cancer care follow-ups and healthcare more generally.

Correction: Tracking Healthy People 2020 Internet, Broadband, and Mobile Device Access Goals: An Update Using Data From the Health Information National Trends Survey.

[This corrects the article DOI: 10.2196/13300.].

Correction: Access to Electronic Personal Health Records Among Patients With Multiple Chronic Conditions: A Secondary Data Analysis.

[This corrects the article DOI: .].

Perceptions of cancer as a death sentence: Tracking trends in public perceptions from 2008 to 2017.

OBJECTIVE: There has been steady progress in reducing cancer mortality in the United States; however, this progress hasn't been evenly distributed across regions. This paper assesses trends in cancer mortality salience (CMS), that is, agreeing that getting cancer is a death sentence, over time in the United States and examines correlates of CMS. METHODS: Data from three administrations of the Health Information National Trends Survey (HINTS), gathered in 2008, 2013, and 2017, were merged, resulting in a total sample of 10,063 respondents. Trends in changes in CMS over time were examined as well as maps of the distribution of CMS in the United States. A logistic regression model was conducted, regressing CMS on a set of sociodemographic, psychological, health-related, and environmental predictors. RESULTS: The aggregated percentage of US adults who agreed with the CMS statement changed over time and was modified by age. Geographic distribution of agreement with CMS was inconsistent across the United States. In the adjusted logistic model, perceived health (worse health), cancer prevention, fatalism, and confusion, and cancer status (no cancer) were all significantly associated with CMS. There was also a significant interaction between survey year and age. CONCLUSION: Despite recent information that cancer mortality rates are decreasing, most US adults still see cancer as a death sentence and this is especially an issue in certain subgroups. These findings have ramifications for groups of people who may be at risk for developing cancer given their attitudes and beliefs that there isn't much they can do to prevent or control it.

Associations of Prostate-Specific Antigen (PSA) Testing in the US Population: Results from a National Cross-Sectional Survey.

Prostate-specific antigen (PSA) testing is one of the standard screening methods for prostate cancer (PC); however, a high proportion of men with abnormal PSA findings lack evidence for PC and may undergo unnecessary treatment. Furthermore, little is known about the prevalence of PSA testing for US men, after the US Preventive Services Task Force (USPSTF) recommended against routine PSA screening in 2012. Our objectives were to: (1) examine the self-reported patterns of PSA testing following a change in the USPSTF prostate cancer screening recommendations and (2) to determine the associated socio-demographic factors. Data were from the 2010 and 2015 National Health Interview Surveys. Men were ages ≥ 40 years and responded to the question "Ever had a PSA test?". Multivariable logistic regression was used to examine PSA testing prevalence in 2010 and 2015, and their associated socio-demographic factors. The analytic sample contained 15,372 men. A majority (75.2%) identified as non-Hispanic (NHW) and 14.2% were foreign-born. Those surveyed in 2015 were less likely to report ever having had a PSA test when compared to those in 2010. Compared to US-born and older NHW men, PSA testing was statistically significantly lower among foreign-born men and men belonging to all other racial categories. Fewer men reported PSA testing following the USPSTF 2012 recommendations. Associated socio-demographic factors included nativity, age, race/ethnicity, educational attainment and type of health insurance. Further studies are required to elucidate our findings and their health implications for the US native and foreign-born population.

Predictors of Patient-Centered Communication among U.S. Adults: Analysis of the 2017-2018 Health Information National Trends Survey (HINTS).

An essential component of patient-centered care is the communication between patients and their providers, which can affect patients' health outcomes A cancer care model, developed by Epstein and Street, includes a multi-dimensional patient-centered communication (PCC) framework with six functions: foster healing relationships, exchange information, respond to emotions, manage uncertainty, make decisions, and enable patient self-management. Seven domains that describe the functions were included on the Health Information National Trends Survey (HINTS) to assess PCC. We examined the association between sociodemographic and health-related factors and PCC as well as how U.S. adults, by different age groups, ranked different domains of PCC.Nationally representative data (n = 5,738) from 2017 to 2018 HINTS were merged to examine predictors of PCC among U.S. adults. Weighted statistics describe the study sample and prevalence for ratings of PCC domains. A multivariate linear regression model was computed to assess associations among predictors and PCC.Participants rated their communication with doctors in the last year with an overall mean of 80 out of 100. Older age, those reporting excellent health, and those with higher confidence in taking care of one's health predicted better PCC. Individuals who reported being non-Hispanic Asian and having lower household income were associated with poorer communication. Participants' lowest rating of PCC concentrated on providers dealing with their emotional needs.Findings suggest that many patients do not feel that their providers adequately manage, communicate, nor respond to their emotional needs. Future efforts should enhance interpersonal exchanges among sub-populations who report poorer communication with providers during clinical visits.

Prospective follow-up of quality of life for participants undergoing risk-reducing salpingo-oophorectomy or ovarian cancer screening in GOG-0199: An NRG Oncology/GOG study.

BACKGROUND: Risk-reducing salpingo-oophorectomy (RRSO) and ovarian cancer screening (OCS) are management options for women at increased risk of ovarian cancer. Long-term effects of these interventions on quality of life (QOL) are not well understood. METHODS: GOG-0199 is a prospective cohort study of women at increased ovarian cancer risk who chose either RRSO or OCS as their risk management intervention. At study entry, 6, 12, 24 and 60 months of follow-up, participants completed the QOL questionnaire, which included the Medical Outcome Study Short Form-36, the Impact of Events Scales, the Center for Epidemiological Studies Depression Scale, the State-Trait Anxiety Inventory, the Functional Assessment of Cancer Therapy - Endocrine Subscale, and the Sexual Activity Questionnaire. QOL measures were compared between the RRSO and OCS cohort at baseline and over time. RESULTS: Five-hundred-sixty-two participants in the RRSO cohort and 1,010 in the OCS completed the baseline and at least one follow-up questionnaire. At baseline, participants selecting RRSO reported lower health-related QOL (HRQOL), greater ovarian cancer-related stress, greater anxiety, and more depressive symptomatology, which improved during follow-up, especially for ovarian cancer-related stress. Screening was not found to adversely impact HRQOL. Hormone-related menopausal symptoms worsened and sexual functioning declined during follow-up in both cohorts, but more so among participants who underwent RRSO. CONCLUSIONS: HRQOL improved after surgery among women who chose RRSO and remained stable among participants undergoing screening. The adverse effects of RRSO and screening on short-term and long-term sexual activity and sexual functioning warrant consideration in the decision-making process for high-risk women.

Patient Reports of Involvement in Health Care Decisions: Falling Short of Healthy People 2020 Objectives.

The Healthy People 2020 (HP 2020) initiative delineates objectives for improving population health in the United States. The National Cancer Institute's Health Information National Trends Survey (HINTS) has served as an important data source for tracking several HP 2020 Health Communication and Health Information Technology objectives, including patient perceptions of involvement in health-care decisions. We analyzed data from six cross-sectional administrations of HINTS (2008 to 2017; N = 25,410) to assess progress toward the HP 2020 objective of increasing the proportion of persons reporting that their health-care providers always involved them in decisions about their health care. In each survey year, just over half the population (range = 51.6 to 54.6) reported that their health-care providers always involved them in health-care decisions; the observed percentages over a 10-year period remained below the HP 2020 goal of 56.8% and did not show significant improvement. Results show a lack of progress toward this HP 2020 goal despite increased attention to patient engagement in health care over the last several decades.

Characterizing the US Population by Patterns of Mobile Health Use for Health and Behavioral Tracking: Analysis of the National Cancer Institute's Health Information National Trends Survey Data.

BACKGROUND: Multiple types of mobile health (mHealth) technologies are available, such as smartphone health apps, fitness trackers, and digital medical devices. However, despite their availability, some individuals do not own, do not realize they own, or own but do not use these technologies. Others may use mHealth devices, but their use varies in tracking health, behaviors, and goals. Examining patterns of mHealth use at the population level can advance our understanding of technology use for health and behavioral tracking. Moreover, investigating sociodemographic and health-related correlates of these patterns can provide direction to researchers about how to target mHealth interventions for diverse audiences. OBJECTIVE: The aim of this study was to identify patterns of mHealth use for health and behavioral tracking in the US adult population and to characterize the population according to those patterns. METHODS: We combined data from the 2017 and 2018 National Cancer Institute Health Information National Trends Survey (N=6789) to characterize respondents according to 5 mutually exclusive reported patterns of mHealth use for health and behavioral tracking: (1) mHealth nonowners and nonusers report not owning or using devices to track health, behaviors, or goals; (2) supertrackers track health or behaviors and goals using a smartphone or tablet plus other devices (eg, Fitbit); (3) app trackers use only a smartphone or tablet; (4) device trackers use only nonsmartphone or nontablet devices and do not track goals; and (5) nontrackers report having smartphone or tablet health apps but do not track health, behaviors, or goals. RESULTS: Being in the mHealth nonowners and nonusers category (vs all mHealth owners and users) is associated with males, older age, lower income, and not being a health information seeker. Among mHealth owners and users, characteristics of device trackers and supertrackers were most distinctive. Compared with supertrackers, device trackers have higher odds of being male (odds ratio [OR] 2.22, 95% CI 1.55-3.19), older age (vs 18-34 years; 50-64 years: OR 2.83, 95% CI 1.52-5.30; 65+ years: OR 6.28, 95% CI 3.35-11.79), have an annual household income of US $20,000 to US $49,999 (vs US $75,000+: OR 2.31, 95% CI 1.36-3.91), and have a chronic condition (OR 1.69, 95% CI 1.14-2.49). Device trackers also have higher odds of not being health information seekers than supertrackers (OR 2.98, 95% CI 1.66-5.33). CONCLUSIONS: Findings revealed distinctive sociodemographic and health-related characteristics of the population by pattern of mHealth use, with notable contrasts between those who do and do not use devices to track goals. Several characteristics of individuals who track health or behaviors but not goals (device trackers) are similar to those of mHealth nonowners and nonusers. Our results suggest patterns of mHealth use may inform how to target mHealth interventions to enhance reach and facilitate healthy behaviors.

Tracking Healthy People 2020 Internet, Broadband, and Mobile Device Access Goals: An Update Using Data From the Health Information National Trends Survey.

BACKGROUND: As the year 2020 approaches, there is a need to evaluate progress toward the United States government's Healthy People 2020 (HP2020) health information technology and communication objectives to establish baselines upon which Healthy People 2030 objectives can be based. OBJECTIVE: The aim of this study was to use the National Cancer Institute's (NCI) Health Information National Trends Survey (HINTS) to benchmark progress toward HP2020 goals related to increasing internet access using broadband, and to assess the state of the digital divide for various sociodemographic groups. METHODS: We merged and analyzed data from 8 administrations of HINTS (2003-2017). Descriptive statistics were generated, and predicted marginals were calculated using interaction terms between survey year and selected sociodemographic variables of interest, including age, sex, race and ethnicity, income, education, and geography (rural versus urban), to test for differential change over time. RESULTS: The number of users having access to the internet increased between 2003 and 2014 (63.15% [3982/6358] to 83.41% [2802/3629]); it remained relatively steady from 2014 to 2017 (81.15% [2533/3283]). Broadband access increased between 2003 and 2011 (from 32.83% [1031/3352] to 77.87% [3375/4405]), but has been declining since (55.93% [1364/2487] in 2017). Access via cellular network increased between 2008 and 2017 (from 6.86% [240/4405] to 65.43% [1436/2489]). Statistically significant disparities in overall internet access were noted in the predicted marginals for age, sex, race and ethnicity, income, and education; for age, sex, income, and geography for broadband access; and for age and sex for cellular network. CONCLUSIONS: The targets set forth in HP2020 were met for overall internet access and for internet access via cellular network; however, the target was not met for internet access via broadband. Furthermore, although the digital divide persisted by sociodemographic characteristics, the magnitude of many disparities in access decreased over time.

Factors associated with deciding between risk-reducing salpingo-oophorectomy and ovarian cancer screening among high-risk women enrolled in GOG-0199: An NRG Oncology/Gynecologic Oncology Group study.

OBJECTIVES: Women at increased genetic risk of ovarian cancer (OC) are recommended to have risk-reducing salpingo-oophorectomy (RRSO) after completion of reproductive planning. Effective screening has not been established, and novel screening modalities are being evaluated. METHODS: Participants chose either RRSO or a novel OC screening regimen (OCS) as their risk management option, and provided demographic and other data on BRCA mutation status, cancer worry, perceived intervention risks/benefits, perceived cancer risk, and quality-of-life at enrollment. We performed univariate and multivariate analyses to evaluate factors influencing decision between RRSO and OCS. RESULTS: Of 2287 participants enrolled, 904 (40%) chose RRSO and 1383 (60%) chose OCS. Compared with participants choosing OCS, participants choosing RRSO were older (p<0.0001), more likely to carry deleterious BRCA1/2 mutations (p<0.0001), perceive RRSO as effective, be more concerned about surgical harms and OCS limitations, and report higher perceived OC risk and OC-related worry. OCS participants were more likely to perceive screening as effective, be more concerned about menopausal symptoms, infertility, and loss of femininity, and report better overall quality-of-life. Twenty-four percent of participants believed they would definitely develop OC, and half estimated their lifetime OC risk as >50%, both higher than objective risk estimates. CONCLUSIONS: Cancer worry, BRCA1/2 mutation status, and perceived intervention-related risks and benefits were associated with choosing between RRSO and OCS. Efforts to promote individualized, evidence-based, shared medical decision-making among high-risk women facing management choices should focus on conveying accurate OC risk estimates, clarifying the current understanding of intervention-related benefits and limitations, and addressing OC worry.

Behavior change interventions: the potential of ontologies for advancing science and practice.

A central goal of behavioral medicine is the creation of evidence-based interventions for promoting behavior change. Scientific knowledge about behavior change could be more effectively accumulated using "ontologies." In information science, an ontology is a systematic method for articulating a "controlled vocabulary" of agreed-upon terms and their inter-relationships. It involves three core elements: (1) a controlled vocabulary specifying and defining existing classes; (2) specification of the inter-relationships between classes; and (3) codification in a computer-readable format to enable knowledge generation, organization, reuse, integration, and analysis. This paper introduces ontologies, provides a review of current efforts to create ontologies related to behavior change interventions and suggests future work. This paper was written by behavioral medicine and information science experts and was developed in partnership between the Society of Behavioral Medicine's Technology Special Interest Group (SIG) and the Theories and Techniques of Behavior Change Interventions SIG. In recent years significant progress has been made in the foundational work needed to develop ontologies of behavior change. Ontologies of behavior change could facilitate a transformation of behavioral science from a field in which data from different experiments are siloed into one in which data across experiments could be compared and/or integrated. This could facilitate new approaches to hypothesis generation and knowledge discovery in behavioral science.

Susceptibility to Food Advertisements and Sugar-Sweetened Beverage Intake in Non-Hispanic Black and Non-Hispanic White Adolescents.

Obesity among adolescents in the United States has risen by 16% in the past 30 years. One important contributing factor may be the increased consumption of sugar sweetened beverages (SSBs), which is encouraged by advertisements for unhealthy foods and drinks that are targeted to adolescents. The purpose of this analysis was to determine the association between susceptibility to food and drink advertisements and sugar-sweetened beverage (SSB) consumption in non-Hispanic black (NHB) and non-Hispanic white (NHW) adolescents and to examine if BMI is associated with SSB consumption. Data were obtained from 765 NHB and NHW of ages 14-17 who were surveyed in the Family Life, Activity, Sun, Health, and Eating study sponsored by the National Cancer Institute. Two weighted adjusted logistic regression models were conducted. The first examined the associations of advertisement susceptibility, race, and BMI with SSB consumption. The second examined the associations of race and BMI with advertisement susceptibility. Adolescents with high advertisement susceptibility were more likely to consume at least one SSB daily (OR 1.73, 95% CI 1.21, 2.47). Additionally, non-Hispanic blacks were more likely to consume at least one SSB daily (OR 1.75, 95% CI 1.08, 2.85) and more likely to be highly susceptible to advertisements (OR 1.72, 95% CI 1.19, 2.48) than non-Hispanic whites. No significant associations were found between BMI and advertising susceptibility or BMI and daily SSB consumption. One approach to addressing the consumption of SSBs may be to reduce advertising that markets unhealthy food and beverages to adolescents and minorities.

A Nonresponse Bias Analysis of the Health Information National Trends Survey (HINTS).

We conducted a nonresponse bias analysis of the Health Information National Trends Survey (HINTS) 4, Cycles 1 and 3, collected in 2011 and 2013, respectively, using three analysis methods: comparison of response rates for subgroups, comparison of estimates with weighting adjustments and external benchmarks, and level-of-effort analysis. Areas with higher concentrations of low socioeconomic status, higher concentrations of young households, and higher concentrations of minority and Hispanic populations had lower response rates. Estimates of health information seeking behavior were higher in HINTS compared to the National Health Interview Survey (NHIS). The HINTS estimate of doctors always explaining things in a way that the patient understands was not significantly different from the same estimate from the Medical Expenditure Panel Survey (MEPS); however, the HINTS estimate of health professionals always spending enough time with the patient was significantly lower than the same estimate from MEPS. A level-of-effort analysis found that those who respond later in the survey field period were less likely to have looked for information about health in the past 12 months, but found only small differences between early and late respondents for the majority of estimates examined. There is some evidence that estimates from HINTS could be biased toward finding higher levels of health information seeking.

Access to Electronic Personal Health Records Among Patients With Multiple Chronic Conditions: A Secondary Data Analysis.

BACKGROUND: In the United States, national incentives for offering access to electronic personal health records (ePHRs) through electronic means are geared toward creating a culture of patient engagement. One group of patients who stand to benefit from online access to ePHRs is the growing population with multiple chronic conditions (MCC). However, little is known about the current availability and use of ePHRs and patient portals among those managing MCC. OBJECTIVE: The aim was to determine the associations between number of chronic conditions and sociodemographic characteristics and usage of ePHRs, and to assess how the public's use of ePHRs varies across subpopulations, including those with MCC. METHODS: This study used data collected from the 2014 Health Information National Trends Survey (HINTS), and assessed differences in use of ePHRs between those with and without MCC (N=3497) using multiple logistic regression techniques. Variables associated with health care systems (insurance status, having a regular provider) and patient-reported self-efficacy were included in the statistical models. RESULTS: Those with MCC (n=1555) had significantly higher odds of accessing their records three or more times in the past year compared to those reporting no chronic conditions (n=1050; OR 2.46, 95% CI 1.37-4.45), but the overall percentage of those with MCC using ePHRs remained low (371 of 1529 item respondents, 25.63% weighted). No difference in odds of accessing their records was found between those reporting one chronic condition (n=892) and those reporting none (n=1050; OR 1.02, 95% CI 0.66-1.58). Significant differences in odds of accessing ePHRs were seen between income and age groups (P<.001 and P=.05, respectively), and by whether respondents had a regular provider (P=.03). CONCLUSIONS: We conclude that ePHRs provide a unique opportunity to enhance MCC patient self-management, but additional effort is needed to ensure that these patients are able to access their ePHRs. An increase in availability of patient access to their ePHRs may provide an opportunity to increase patient engagement and support self-management for all patients and especially those with MCC.

Improving the value of clinical research through the use of Common Data Elements.

The use of Common Data Elements can facilitate cross-study comparisons, data aggregation, and meta-analyses; simplify training and operations; improve overall efficiency; promote interoperability between different systems; and improve the quality of data collection. A Common Data Element is a combination of a precisely defined question (variable) paired with a specified set of responses to the question that is common to multiple datasets or used across different studies. Common Data Elements, especially when they conform to accepted standards, are identified by research communities from variable sets currently in use or are newly developed to address a designated data need. There are no formal international specifications governing the construction or use of Common Data Elements. Consequently, Common Data Elements tend to be made available by research communities on an empiric basis. Some limitations of Common Data Elements are that there may still be differences across studies in the interpretation and implementation of the Common Data Elements, variable validity in different populations, and inhibition by some existing research practices and the use of legacy data systems. Current National Institutes of Health efforts to support Common Data Element use are linked to the strengthening of National Institutes of Health Data Sharing policies and the investments in data repositories. Initiatives include cross-domain and domain-specific resources, construction of a Common Data Element Portal, and establishment of trans-National Institutes of Health working groups to address technical and implementation topics. The National Institutes of Health is seeking to lower the barriers to Common Data Element use through greater awareness and encourage the culture change necessary for their uptake and use. As National Institutes of Health, other agencies, professional societies, patient registries, and advocacy groups continue efforts to develop and promote the responsible use of Common Data Elements, particularly if linked to accepted data standards and terminologies, continued engagement with and feedback from the research community will remain important.

Rationale, Procedures, and Response Rates for the 2015 Administration of NCI's Health Information National Trends Survey: HINTS-FDA 2015.

The National Cancer Institute (NCI) developed the Health Information National Trends Survey (HINTS) to monitor population trends in cancer communication practices, information preferences, health risk behaviors, attitudes, and cancer knowledge. The U.S. Food and Drug Administration (FDA) recognized HINTS as a unique data resource for informing its health communication endeavors and partnered with NCI to field HINTS-FDA 2015. HINTS-FDA 2015 was a self-administered paper instrument sent by mail May 29 to September 8, 2015, using a random probability-based sample of U.S. postal addresses stratified by county-level smoking rates, with an oversampling of high and medium-high smoking strata to increase the yield of current smokers responding to the survey. The response rate for HINTS-FDA 2015 was 33% (N = 3,738). The yield of current smokers (n = 495) was lower than expected, but the sampling strategy achieved the goal of obtaining more former smokers (n = 1,132). Public-use HINTS-FDA 2015 data and supporting documentation have been available for download and secondary data analyses since June 2016 at http://hints.cancer.gov . NCI and FDA encourage the use of HINTS-FDA for health communication research and practice related to tobacco-related communications, public knowledge, and behaviors as well as beliefs and actions related to medical products and dietary supplements.

Muscular Grip Strength Estimates of the U.S. Population from the National Health and Nutrition Examination Survey 2011-2012.

The purposes of this study were to use the National Health and Nutrition Examination Study (2011-12) data to determine nationally representative combined handgrip strength ranges and percentile information by sex and age group, examine trends in strength across age by sex, and to determine the relative proportion of children and adults falling into established health benefit zones (HBZ). Results indicate that mean strength was greater among men than women and increased linearly for children and in a quadratic fashion among adults for both sexes. Grip strength peaked in the 30- to 39-year age group for both men (216.4 lbs) and women (136.5 lbs) with subsequent age groups showing gradual decline, p < 0.0001. Relative and absolute increases in grip strength were greater for men than for women, but relative decrease from peak strength was less among women than men. Although absolute strength was greater among men than women, HBZ data indicated that a higher percentage of men than women overall and at each age group fell into the needs improvement zone, with differences particularly pronounced during adolescence and older adulthood. These data provide the first nationally representative population estimates of combined handgrip strength and percentile information from childhood through senescence and suggest consideration of HBZ information in conjunction with grip strength to improve surveillance data interpretation and intervention planning.

The use of haematopoietic stem cell transplantation in Fanconi anaemia patients: a survey of decision making among families in the US and Canada.

BACKGROUND: Fanconi anaemia (FA) is a rare genetic disorder associated with bone marrow failure (BMF), congenital anomalies and cancer susceptibility. Stem cell transplantation (SCT) offers a potential cure for BMF or leukaemia, but incurs substantial risks. Little is known about factors influencing SCT decision making. OBJECTIVE: The study objective was to explore factors influencing patients' with FA and family members' decision making about SCT. DESIGN: Using a mixed-methods exploratory design, we surveyed US and Canadian patients with FA and family members who were offered SCT. MAIN VARIABLES STUDIED: Closed-ended survey items measured respondents' beliefs about the necessity, risks and concerns regarding SCT; multivariable logistic regression was used to examine the association between these factors and the decision to undergo SCT. Open-ended survey items measured respondents' perceptions of factors important to the SCT decision; qualitative analysis was used to identify emergent themes. RESULTS: The decision to undergo SCT was significantly associated with greater perceived necessity (OR = 2.81, P = 0.004) and lower concern about harms of SCT (OR = 0.31, P = 0.03). Qualitative analysis revealed a perceived lack of choice among respondents regarding the use of SCT, which was related to physician influence and respondent concerns about patients' quality of life. CONCLUSIONS: Overall, study results emphasize the importance of the delicate interplay between provider recommendation of a medical procedure and patient/parental perceptions and decision making. Findings can help providers understand the need to acknowledge family members' perceptions of SCT decision making and offer a comprehensive discussion of the necessity, risks, benefits and potential outcomes.