Who counsels parents of newborns who are carriers of sickle cell anemia or cystic fibrosis?

Our objective was to describe: 1) physicians' knowledge of whether genetic counseling is provided to parents of newborns with sickle cell trait (SCT) or who are cystic fibrosis carriers (CFC), and 2) the prevalence of genetic counseling provided by primary care physicians. We conducted a cross-sectional descriptive survey of 600 randomly-sampled Michigan-based pediatricians and family physicians, assessing physician knowledge of where and whether genetic counseling is received by parents whose newborns are carriers. Chi-squared testing determined associations between genetic counseling location and physician demographic characteristics. Our response rate was 62 %: 298 (84 %) provided infant well care (183 pediatricians, 115 family physicians). Most respondents were non-Hispanic White (65 %). Virtually all physicians believed parents whose newborns are carriers of either SCT or CFC should receive some genetic counseling (from the physician and/or another source), yet 20 % reported that parents of newborns with SCT did not receive counseling. Parents of infants with CFC received more counseling overall (92 % vs. 80 %; p < 0.01) and were counseled more frequently by genetic counselors or specialty centers than parents of newborns with SCT (85 % vs. 60 %; p < 0.01). Although physicians agreed that parents whose newborns are carriers should receive genetic counseling, fewer parents of newborns with SCT than with CFC received counseling from any source. This finding strongly suggests the need for further education and investigation of this apparent health disparity.

Steroid inhaler adherence, flu vaccine receipt, and race: associations with the quality of the parent-physician relationship for asthmatic children.

RATIONALE: Steroid inhaler adherence and influenza immunization rates are low for asthmatic minority children. OBJECTIVE: To examine associations between parents' adherence to administering their child's steroid inhaler, influenza vaccine receipt, and parental perceptions of the primary care experience. METHODS: In 2006 we interviewed parents of children aged 2-12 who had an asthma-related physician visit in 2004 and 2005 about steroid inhaler use and influenza vaccine receipt. Parents rated their child's doctor using the Primary Care Assessment Survey (PCAS). MEASUREMENT: Outcome variables were inhaler adherence and influenza vaccine receipt. Independent variables included PCAS scores, child health measures, parental personal and financial stress, and demographic variables. RESULTS: Children of inhaler-adherent parents were more likely to be immunized (OR, 2.94; p = .03). Black parents were less adherent to steroid use (OR, 0.37, p = .01) while nonblack/nonwhite children had lower vaccination rates (OR, 0.29, p = .02). Continuity of care was associated with better inhaler adherence (OR, 1.02, p = .01). Influenza immunization was associated with physician's knowledge of the child's medical history (OR, 1.02, p = .05), interpersonal skills (OR, 1.02, p = .03), and parental trust in the physician (OR, 1.03, p = .02). Minority parents gave lower ratings than white parents to their child's physician and office on characteristics associated with inhaler adherence and immunization. CONCLUSIONS: Minority parents of asthmatic children are less adherent to recommended asthma treatments and rate physicians lower on characteristics associated with adherence. Improving those characteristics may improve asthma outcomes for minority children.

Creating a segregated medical profession: African American physicians and organized medicine, 1846-1910.

An independent panel of experts, convened by the American Medical Association (AMA) Institute for Ethics, analyzed the roots of the racial divide within American medical organizations. In this, the first of a 2-part report, we describe 2 watershed moments that helped institutionalize the racial divide. The first occurred in the 1870s, when 2 medical societies from Washington, DC, sent rival delegations to the AMA's national meetings: an all-white delegation from a medical society that the US courts and Congress had formally censured for discriminating against black physicians; and an integrated delegation from a medical society led by physicians from Howard University. Through parliamentary maneuvers and variable enforcement of credentialing standards, the integrated delegation was twice excluded from the AMA's meetings, while the all-white society's delegations were admitted. AMA leaders then voted to devolve the power to select delegates to state societies, thereby accepting segregation in constituent societies and forcing African American physicians to create their own, separate organizations. A second watershed involved AMA-promoted educational reforms, including the 1910 Flexner report. Straightforwardly applied, the report's population-based criterion for determining the need for phySicians would have recommended increased training of African American physicians to serve the approximately 9 million African Americans in the segregated south. Instead, the report recommended closing all but 2 African American medical schools, helping to cement in place an African American educational system that was separate, unequal, and destined to be insufficient to the needs of African Americans nationwide.

Segregation, civil rights, and health disparities: the legacy of African American physicians and organized medicine, 1910-1968.

Between 1910 and 1968, the National Medical Association (NMA) repeatedly clashed with the American Medical Association (AMA) over the latter organization's racial bars to membership and other health policy issues. The NMA, founded in 1895 as a nonexclusionary medical society to provide a voice for disenfranchised black physicians and patients, struggled in its early years, during which AMA leadership took scant notice of it. But skirmishes ensued over such actions as stigmatizing racial labels in the AMA's American Medical Directory, which, beginning in 1906, listed all U.S. physicians but designated African Americans with the notation col. The NMA also repeatedly asked the AMA to take action against overt racial bars on blacks' membership in its constituent state and county societies. During the civil rights era, African American physicians received no AMA support in seeking legal remedies to hospital segregation. And the NMA and AMA found themselves opposed on other policy issues, including Medicaid and Medicare. These differences eventually catalyzed a series of direct confrontations. The 1965 AMA meeting in New York City, for example, was protested by about 200 NMA-led picketers. The NMA's quest for racial equality in medicine was supported by some other medical organizations, such as the Medical Committee for Human Rights. In 1966, the AMA House voted to amend the AMA Constitution and Bylaws, giving its Judicial Council (now the Council on Ethical and Judicial Affairs) the authority to investigate allegations of discrimination. This paved the way for a subsequent era of increasing cooperation and understanding.

Measuring African-American parents' cultural mistrust while in a healthcare setting: a pilot study.

BACKGROUND: African Americans' mistrust of healthcare is often cited as a cause of racial disparities in health and has been linked to cultural mistrust. African-American parents' level of cultural mistrust while in a general healthcare setting has not been previously measured. OBJECTIVE: To determine the performance, participant acceptance, feasibility of administration and demographic associations of a measure of cultural mistrust, the Cultural Mistrust Inventory (CMI), in African-American parents seeking healthcare. METHODS: A cross-sectional sample of 69 self-identified African-American parents of minor children recruited in a university-affiliated, urban pediatric/family practice outpatient clinic completed an anonymous, self-administered questionnaire containing demographic items and the CMI. RESULTS: The response rate was 91% (n=63), and 49 (78%) -- answered all questions. Measured mistrust did not vary with gender, insurance or education. The CMI's internal consistency was similar to previously published studies of the instrument (alpha=0.92). Parents indicating discomfort with the CMI's questions reported significantly less mistrust than parents who did not indicate discomfort (p=0.01). CONCLUSIONS: The CMI is feasible to administer in a clinic setting and demonstrates good internal consistency. It can be a useful tool to assess the effect of cultural mistrust on the healthcare decisions African-American parents make for their children. However, when measuring cultural mistrust in a healthcare setting, respondents' comfort with the survey questions should be assessed.

Parents' trust in their child's physician: using an adapted Trust in Physician Scale.

OBJECTIVES: To assess the performance of the Pediatric Trust in Physician Scale (Pedi-TiPS) that refers to a child's physician and is a modified version of the Trust in Physician Scale (TiPS), and to explore the association of trust to demographic variables. METHODS: We performed a cross-sectional survey of parents in pediatric specialty and primary care sites. Parents completed an anonymous questionnaire that included the Pedi-TiPS. Our main outcome variable was total Pedi-TiPS score (higher scores = higher trust). Reliability was determined by Cronbach's alpha. Bivariate comparisons and linear regression modeling explored potential associations between demographic variables and total score. RESULTS: Five hundred twenty-six parents completed surveys (73% response rate). The mean total score was 45.4 (SD 6), with good internal consistency (alpha = .84). In bivariate analysis, lower scores were associated with being a father (P = 0.03), older parent age (P = 0.02), private insurance status (P < 0.01), parent education greater than high school (P = 0.04), and not having a child age <3 years (P = 0.03). In a regression model adjusted for other factors, parents who were either African American (P = 0.05), or "other" race (P < 0.01), parents with private insurance (P = 0.02), and parents who had no children <3 years of age (P = 0.04) had lower trust. CONCLUSIONS: The Pedi-TiPS has properties similar to the original instrument. We found associations between trust and demographic factors that should be confirmed with further studies.

After Flexner: the challenge.

In his article, "Abraham Flexner and the Black Medical Schools," Todd Savitt, MD critically describes how the Flexner Report effectively decimated African-American medical education as it existed at the beginning of the 20th century. We are now in the 21st century, and there are still few black physicians and medical students.

Futility in evolution.

Must health care professionals provide treatments or interventions that they consider futile? Although much of the past and current debate about futility has centered on how to best define futility, it is the application of the concept in clinical decision making that is of central concern. Most physicians feel confident that they know futile treatment when they see it, but despite years of debate in scholarly journals, professional meetings, and popular media, consensus on a precise definition eludes us still. This article reviews numerous definitions of futility to illustrate the general lack of consensus over this concept. It also provides a flexible definition of futility that is patient centered and reliant on goals of care as the morally preferable definition. In short, the concept of futility as a means to resolve disputes over treatment decisions may, itself, be futile.

The relationship between motivation to volunteer, gender, cultural mistrust, and willingness to donate organs among Blacks.

The relationship between motivation to volunteer, gender, cultural mistrust, and the willingness of blacks to donate their organs, as well as the organs of relatives, was explored. Participants consisted of 107 black students attending a university located in the southwest. All participants were given the Volunteer Functions Inventory (VFI), Cultural Mistrust Inventory (CMI), Organ Donation Questionnaire (ODQ), and a background information questionnaire. It was found that individuals with low scores on the VFI and high scores on the CMI were less willing to consent to donating their organs. Also, females and individuals with high CMI scores were less willing to permit the recovery of organs from relatives. Some theoretical and applied implications for mental health professionals are suggested.

End-of-life choices for African-American and white infants in a neonatal intensive-care unit: a pilot study.

BACKGROUND: African-American adults are more likely than white adults to desire the continuation of life-sustaining medical treatment (LSMT) at the end of life. No studies have examined racial differences in parental end-of-life decisions for neonates. OBJECTIVE: To collect preliminary data to determine whether differences exist in the choices made by parents of African-American and white infants when a physician has recommended withholding or withdrawing LSMT from their infant to develop hypotheses for future work. DESIGN/METHODS: A retrospective chart review of African-American and white infants who died in an urban neonatal intensive care unit (NICU) over a two-year period. Charts were abstracted for demographics, cause of death, and documentation of meetings where the physician recommended withholding or withdrawing LSMT. RESULTS: Thirty-eight infant charts met study criteria (58% African-American, 42% white). Documentation of physician recommendations to limit LSMT was present in 61% of charts. Approached families of white infants agreed to limit LSMT 80% of the time compared to 62% of the families of African-American infants. CONCLUSIONS: In this pilot study, parents of African-American and white infants appeared to make different end-of-life choices for their children. A larger study is needed to confirm these findings and further explore contributing factors such as mistrust, religiosity, and perceived discrimination.

Which sources of child health advice do parents follow?

BACKGROUND: Parents consult other child health information sources in addition to the pediatrician. There are little data describing which of these sources parents are likely to follow. METHODS: The authors surveyed 543 parents of patients in 6 pediatric practices in southeast Michigan shortly after an office visit to determine the degree to which parents report following advice from 7 common child health sources on a scale from 1 (don't follow at all) to 7 (follow completely). RESULTS: Pediatrician advice was more completely followed than other sources with mothers a distant second. Although 96% of parents used the Internet to find child health information, few followed most of the advice found there. White parents were 3 times more likely than African Americans to follow advice from television and newspapers. CONCLUSION: Parents rely on child health advice from the pediatrician and their mother. Other sources are consulted but not widely followed.

Primary care physicians' attitudes regarding follow-up care for children with positive newborn screening results.

BACKGROUND: Although primary care physicians are responsible for providing follow-up care after a positive newborn screen, little is known about their willingness or ability to do so. METHODS: A national mail survey of a random sample of 350 general pediatricians and 350 family physicians was conducted from April to June 2006. RESULTS: The response rate was 63% among pediatricians and 50% among family physicians. Most pediatricians (89.7%) and nearly one half of family physicians (44.1%) had had a patient with a positive newborn screen within the past 5 years. Most respondents thought that primary care physicians should be responsible for informing families about a positive newborn screen (73.2%), arranging confirmatory testing (66.0%), and coordinating subspecialty referral (85.3%). However, more than one half (56.2%) would prefer newborn screening programs to provide the initial evaluation of positive newborn screening results. Some respondents (but fewer pediatricians than family physicians) reported that they were not competent to discuss conditions included in newborn screening panels (eg, 22.6% of pediatricians and 53.2% of family physicians for phenylketonuria and 8.8% of pediatricians and 40.4% of family physicians for congenital hypothyroidism). More than one half (58.3%) thought that families with a child diagnosed as having congenital hypothyroidism should receive formal genetic counseling. Respondents were less likely to think that families with a child with sickle cell trait, compared with families with a child who is a cystic fibrosis carrier, should receive formal genetic counseling (69.3% vs 84.1%). CONCLUSIONS: Many primary care physicians are not prepared to manage the follow-up care of children with a positive newborn screen, including initial counseling, diagnosis, and subspecialty referral. New strategies are needed to ensure appropriate and equitable health care delivery.