Variables affecting outcomes after allogeneic hematopoietic stem cell transplant for cerebral adrenoleukodystrophy.

Allogeneic hematopoietic stem cell transplantation (allo-HSCT) in early cerebral adrenoleukodystrophy can stabilize neurologic function and improve survival but has associated risks including transplant-related mortality (TRM), graft failure, and graft-versus-host disease (GVHD). An observational study of 59 patients with median age at allo-HSCT of 8 years addressed impact of donor source, donor match, conditioning regimen, and cerebral disease stage on first allo-HSCT outcomes. Efficacy analyses included 53 patients stratified by disease category: advanced disease (AD; n = 16) with Loes score >9 or neurological function score (NFS) >1 and 2 early disease (ED) cohorts (ED1 [Loes ≤4 and NFS ≤1; n = 24] and ED2 [Loes >4-9 and NFS ≤1; n = 13]). Survival free of major functional disabilities and without second allo-HSCT at 4 years was significantly higher in the ED (66%) vs AD (41%) cohort (P = .015) and comparable between ED1 and ED2 cohorts (P = .991). The stabilization of neurologic function posttransplant was greater in the ED vs AD cohort, with a median change from baseline at 24 months after allo-HSCT in NFS and Loes score, respectively, of 0 and 0.5 in ED1 (n = 13), 0.5 and 0 in ED2 (n = 6), and 2.5 and 3.0 (n = 4) in AD cohort. TRM was lower in the ED (7%) compared with the AD (22%) cohort; however, the difference was not significant (P = .094). Transplant-related safety outcomes were also affected by transplant-related characteristics: graft failure incidence was significantly higher with unrelated umbilical cord grafts vs matched related donors (P = .039), and acute GVHD and graft failure incidences varied by conditioning regimen. This study was registered at www://clinicaltrials.gov as #NCT02204904.

Engaging in secondhand smoke reduction discussions with parents of hospitalized pediatric patients: a national survey of pediatric nurses in the United States.

OBJECTIVE: To identify individual- and system-level predictors and barriers associated with US pediatric nurses' routine counseling about child secondhand smoke exposure for parents of hospitalized children. METHODS: In 2008, members of the Society of Pediatric Nurses completed a questionnaire assessing demographic, hospital systems, and work attitudes related to the following outcomes: asking about child secondhand smoke exposure, informing about sources of secondhand smoke exposure, counseling about the dangers of secondhand smoke exposure, and advising a smoke-free home policy. RESULTS: Of 1475 eligible nurses, 888 completed the survey. We found that 39% asked, 43% informed, 29% counseled, and 25% advised parents. Nurses working in hospitals with mandatory prompts in the medical record to assess child secondhand smoke exposure, the availability of written materials for parent smokers, and regular secondhand smoke counseling training for nurses had increased odds of routinely engaging parents in secondhand smoke reduction best practices. Nurses reported parents' resistance to discussions about smoking, short hospital stays, and non-standardized care as the most common barriers to counseling parents. CONCLUSION: System supports in hospitals significantly increases the odds of nurses engaging in child secondhand smoke reduction practices. Strengthening existing systems and introducing new policies are critical for nurses' engagement of parents in discussions about reducing child secondhand smoke exposure.

After breast cancer: sexual functioning of sexual minority survivors.

Research on sexual difficulties after cancer has neglected sexual minority women (SMW); for example, lesbian and bisexual women. Clinicians treating these women are therefore at a disadvantage as they lack information about sexual problems in this population. This study tested the hypothesis that SMW with breast cancer have poorer sexual function than SMW without breast cancer, distinguishing partnered from unpartnered women. Using convenience sample recruitment, we conducted a case-control study to compare survivors of breast cancers who are SMW, in other words, cases to controls, that is, SMW without cancer. Anonymous survey data were collected from 85 cases after they had completed active cancer treatment and 85 age- and partner-status matched controls with no history of any cancer. Participants' self-reported sexual frequency and sexual function measured by the Female Sexual Function Index were evaluated. Cases and controls did not differ in risk of sexual dysfunction or the level of overall sexual functioning; however, cases had lower sexual frequency and scored lower on desire and ability to reach orgasm, and higher on pain compared to controls. Results inform clinicians about sexual minority survivors' sexual domains affected by cancer. When discussing sexual problems and therapeutic options, sexual orientation should be ascertained.

Applying the Female Sexual Functioning Index to sexual minority women.

BACKGROUND: Available measurements of women's sexual function do not account for different sexual orientations; rather, instruments have been developed using heterosexual samples. The Female Sexual Functioning Index (FSFI) is a widely used instrument, applicable for sexually active or inactive women. We apply the FSFI to a sample of women who have or prefer women as sexual partners, defined as sexual minority women, and who vary with respect to their sexual activity. METHODS: A modified version of the FSFI was used in a sample of sexual minority women. Statistical analyses focused on examining associations between FSFI responses of no sexual activity and women's characteristics. RESULTS: Partner status and sexual frequency was significantly associated with reporting no sexual activity on the FSFI. A revised scoring of the FSFI allows for the use of this instrument among women who vary on sexual frequency and partner status, without biasing their scores towards sexual dysfunction. The desire subscale is independent of sexual frequency, partner status, and sexual orientation. CONCLUSIONS: The modified wording of the FSFI and its revised scoring allow for the use of this instrument among sexual minority women. A separate reporting of the desire subscale will generate reliable and valid assessments of sexual minority women's sexual functioning.

Smoking cessation counseling for parents during child hospitalization: a national survey of pediatric nurses.

OBJECTIVE: Given the central role played by pediatric nurses in intake assessment, discharge planning, and education for families of hospitalized pediatric patients, a child's hospitalization may provide a unique opportunity for counseling parents about smoking. We sought to determine if hospital policies can support nurses in effectively counseling parents about smoking. DESIGN AND SAMPLE: We conducted a national survey of pediatric staff nurses and administrators/educators who were members of the Society of Pediatric Nurses in 2008 (n=888) to explore counseling practices for tobacco control. MEASURES: Questionnaires included data on demographics, personal and work environment characteristics, hospital policy characteristics, work attitudes and barriers and the main outcome--5As for smoking cessation counseling--Ask, Advise, Assess, Assist, and Arrange. RESULTS: Overall, routine screening for household smokers was most common (43%), followed by advice to quit (25%), assessing willingness to quit (19%), assisting with a quit plan (6%), and arranging follow-up contact (3%). Nurses working in hospitals with admission assessments specifically asking about household members who smoke were 7 times more likely than those without such assessments to routinely ask about smoking (OR: 7.2, 95% CI: 4.9-10.5). CONCLUSION: Future research should test the efficacy of developing comprehensive hospital-wide policies to deliver smoking cessation for parents during a child's hospitalization.

Comparing sexual minority cancer survivors recruited through a cancer registry to convenience methods of recruitment.

PURPOSE: Sexual minority women, defined as having a lesbian or bisexual identity or reporting a preference for a female partner, are not considered by cancer surveillance. This study assesses the representativeness of sexual minority breast cancer survivors, defined as having a lesbian or bisexual identity or reporting a preference for a female partner, who were recruited into a convenience sample compared with a population-based registry sample of sexual minority breast cancer survivors. METHODS: Long-term survivors of non-metastatic breast cancer who self-reported as sexual minority were recruited from a cancer registry and subsequently from the community using convenience recruitment methods. Sexual minority breast cancer survivors who screened eligible participated in a telephone survey about their quality of life and factors associated therewith. RESULTS: Participants in the convenience sample were similar to the registry-based sample with respect to adjustment to cancer, physical health, trust in physician, coping, social support, and sexual minority experiences. Compared with the convenience sample, breast cancer survivors in the registry sample were more likely married, more educated, diagnosed more recently, at an earlier stage of cancer, and more likely treated with breast-conserving surgery; they differed on adjuvant therapies. DISCUSSION: Because sexual minority breast cancer survivors who volunteered for the community-based sample shared most characteristics of the sample recruited from the cancer registry, we concluded that the community sample had comparable representational quality. In the absence of cancer surveillance of sexual minorities, thoughtful convenience recruitment methods provide good representational quality convenience samples.

Overweight and obesity in long-term breast cancer survivors: how does sexual orientation impact BMI?

In noncancer populations lesbians have greater odds of obesity compared with heterosexual women, suggesting a similar pattern among cancer survivors. Weight of cancer survivors is an important area of study because obesity is associated with an increased risk of recurrence and shorter survival. Sixty-nine lesbian and bisexual and 257 heterosexual survivors of breast cancer were recruited to participate in a one-time telephone survey. Multinomial logit models do not support disparities in obesity due to sexual orientation. Our findings in breast cancer survivors suggest that lesbians are more likely to improve their weight-related behaviors after cancer than heterosexual women.

Using cancer registry data for recruitment of sexual minority women: successes and limitations.

OBJECTIVE: To identify and recruit an unknown and presumably small subgroup of survivors, that is, lesbian or bisexual women with breast cancer. METHODS: This report describes our multistep approach to recruit a representative sample of heterosexual and sexual minority breast cancer survivors. We used census data to identify geographic areas with a greater prevalence of sexual minority women (SMW), that is, lesbian and bisexual women. We then obtained the breast cancer cases from a cancer registry for these geographic areas. In the absence of sexual orientation data in cancer registries, all potentially eligible women with breast cancer needed to be contacted by telephone to determine their sexual orientation. RESULTS: Among the 1341 women screened who answered the question about sexual orientation, 6.3% were SMW. Overall, we processed 4143 cases to obtain completed data on 69 SMW and 257 heterosexual women with breast cancer. CONCLUSIONS: Our findings suggest that it is resource intensive but feasible to recruit a representative sample of breast cancer survivors of different sexual orientations. Our findings can inform future studies that seek to recruit sexual minority populations from cancer registries about some of the limitations to this approach.

The CHEER study to reduce BMI in Elementary School students: a school-based, parent-directed study in Framingham, Massachusetts.

Childhood obesity may be lessened by parent-focused interventions. A pilot parent-directed trial with 46 parents of overweight and obese elementary school students was conducted at two ethnically diverse public schools in Framingham, Massachusetts. Parents were randomly assigned to either the Materials Group, which received mailed educational materials, or the Materials plus Personal Encounters Group, which received educational materials through interactions with community health workers (CHWs). Parents completed baseline and post-intervention surveys; children's body mass index (BMI) percentiles were measured at baseline and post-intervention. There were no differences in the reduction of children's BMI between groups. However, the mean BMI percentile for all children dropped from 94.1 to 90.6 (p = .005), while there was no change in BMI among a nonrandomized contemporaneous control group. Findings are limited by the lack of a true control group and small sample size. Results from this school nurse and CHW outreach program to parents are encouraging.

Drug company advertising in medical journals about the health-economic advantages of their products for 2000-2006 versus 1990-1999.

BACKGROUND: Section 114 of the 1997 Food and Drug Administration Modernization Act (FDAMA) effective February 19, 1998, permitted some additional flexibility for drug companies to provide "health care economic information" to "a formulary committee or other similar entity" and may have caused a decline in economic messages used in print advertisements in medical journals. We previously investigated the promotional claims made by pharmaceutical companies about the economic advantages of their prescription products in print advertisements in 6 leading medical journals from 1990-1999. OBJECTIVE: To examine the hypotheses that (1) economic promotion in journals declined after the effective date of Section 114 of the FDAMA, and (2) increased calls for U.S. Food and Drug Administration (FDA) scrutiny of health-economic information was associated with an increase in the reporting of supporting information for economic advertisements in 2000- 2006 compared with the 1990s. METHODS: Two researchers independently reviewed all pharmaceutical print advertisements in 3 issues each year of 3 general medical and 3 specialty journals (totaling 18 issues each year) from 2000 through 2006. The type of economic claim (e.g., advertisements using the words "price," "costs less," "value") as well as the presence of supporting information for an advertisement's claims (e.g., published studies) were tabulated using a standardized data collection form. The research method was similar to that used in previous research of economic claims in advertisements in the same 6 medical journals from 1990-1999, and we compared the results from previous research for 1990-1999 with the new findings for 2000-2006. The list of health economic terms was expanded in the 2000-2006 research to include "less hospitalization"/"less treatment," "formulary"/"coverage," "co-pay"/"cost-sharing," and "in community longer." RESULTS: Our results are derived from 2,144 pharmaceutical advertisements from the 10-year period 1990-1999 and 1,372 from the 7-year period 2000-2006. Economic content occurred in 11.1% (237/2,144) of advertisements in the 1990s, and 7.6% (104/1,372) in 2000-2006 (P < 0.001). The frequency of economic advertisements rose in the 1990s to a peak in 1997 at 16.2% (31/191) (test for trend: P < 0.001) and declined thereafter, reaching a low of 3.9% (9/234) in 2002 (test for trend: P < 0.001) before rising again to 13.7% (25/182) in 2006 (test for trend: P=0.030). Economic claims centered mainly on direct costs (i.e., "less expensive") and benefit design (i.e., "one co-pay") and less on cost-effectiveness (i.e., "value"). The percentage of economic advertisements that included any supporting information was similar in the 1990s and 2000s (63.7% [151/237] vs. 61.5% [64/104], P = 0.70). The source of information to support an advertisement's economic claims shifted away from price information (e.g., "average wholesale price" or "Red Book") towards published studies and "data on file." CONCLUSION: Drug companies continue to advertise the economic advantages of their products in medical journals, though the practice declined somewhat after the 1997 FDAMA Section 114 legislation. Use of supporting references in the body of advertisements has not improved over time. The promotion of health economic information warrants more scrutiny by regulators and medical journal editors.

Two means of sampling sexual minority women: how different are the samples of women?

We compared 2 sampling approaches of sexual minority women in 1 limited geographic area to better understand the implications of these 2 sampling approaches. Sexual minority women identified through the Census did not differ on average age or the prevalence of raising children from those sampled using nonrandomized methods. Women in the convenience sample were better educated and lived in smaller households. Modeling the likelihood of disability in this population resulted in contradictory parameter estimates by sampling approach. The degree of variation observed both between sampling approaches and between different parameters suggests that the total population of sexual minority women is still unmeasured. Thoroughly constructed convenience samples will continue to be a useful sampling strategy to further research on this population.