Sonja Ziniel

The DECISIONS Study: A Nationwide Survey of United States Adults Regarding 9 Common Medical Decisions

Background Patient involvement is required before patients’ preferences can be reflected in the medical care they receive. Furthermore, patients are a vital link between physicians’ assessments of patients’ needs and actual implementation of appropriate care. Yet no study has specifically examined how and when a representative sample of patients considered, discussed, and made medical decisions. Objective To identify decision prevalence and decision-making processes regarding 1) initiation of prescription medications for hypertension, hypercholesterolemia, or depression; 2) screening tests for colorectal, breast, or prostate cancer; and 3) surgeries for knee or hip replacement, cataracts, or lower back pain. Design Computer-assisted telephone interview survey. Setting Nationally representative sample of US adults in households with telephones. Participants 3010 English-speaking adults age 40 and older identified using a stratified random sample of telephone numbers. Measurements Estimated prevalence of medical decisions, defined as the patient having initiated medications, been screened, or had surgery within the past 2 years or having discussed these actions with a health care provider during the same interval, as well as decision-specific data regarding patient knowledge, attitudes and patient-provider interactions. Results 82.2% of the target population reported making at least 1 medical decision in the preceding 2 years. The proportion of decisions resulting in patient action varied dramatically both across decision type (medications [61 %] v. screening [83%] v. surgery [44%]; P < 0.001), and within each category (e.g., blood pressure medications [76%] v. cholesterol medications [55%] vs. depression medications [48%]; P < 0.001). Respondents reported making more decisions if they had a primary care provider or poorer health status and fewer decisions if they had lower education, were male, or were under age 50. Limitations Retrospective self-reports may incorporate recall biases. Conclusions Medical decisions with significant life-saving, quality of life, and cost implications are a pervasive part of life for most US adults. The DECISIONS dataset provides a rich research environment for exploring factors influencing when and how patients make common medical decisions.

Deficits and Variations in Patients’ Experience with Making 9 Common Medical Decisions: The DECISIONS Survey

Background Although many researchers have examined patient involvement and patient-provider interactions within specific clinical environments, no nationally representative data exist to characterize patient perceptions of decision making and patient-provider communications across multiple common medical decisions. Objective To identify deficits and variations in the patient experience of making common medical decisions about initiation of prescription medications for hypertension, hypercholesterolemia, or depression; screening tests for colorectal, breast, or prostate cancer; and surgeries for knee or hip replacement, cataracts, or lower back pain, as well as to identify factors associated with patient confidence in the decisions. Setting National sample of US adults identified by random-digit dialing. Design Cross-sectional survey conducted from November 2006 to May 2007. Participants Included 2473 English-speaking adults age 40 and older who reported undertaking 1 or more of the above 9 medical actions or discussing doing so with a health care provider within the past 2 years. Measurements Patients reported who initiated discussions and made the final decisions, how much discussion of pros and cons occurred, whether they were asked about their preferences, and their confidence that the decision “was the right one.” Results The proportion of patient-driven decisions varied significantly across decisions (range: blood pressure: 16% to knee/hip replacement: 48%). Most patients (78%–85%) reported that providers made a recommendation, and such recommendations generally favored taking medical action. Fewer patients reported that providers asked them about their preferences (range: colon cancer screening: 34% to knee/hip replacement: 80%) or discussed reasons not to take action (range: breast cancer screening: 20% to lower back surgery: 80%). Decision confidence was higher among patients who reported primarily making the decision themselves (odds ratio [OR] = 14.6, P < 0.001) or having been asked for their preference (OR = 1.32, P < 0.01) and was lower among patients whose patient provider discussions included cons (OR = 0.74, P = 0.008). Limitations Recall biases may affect patients’ memories of their decision-making processes. Conclusions Decisions participants reported wide variations in the proportion of discussions that included a conversation about reasons not to take action or a conversation about patients’ preferences about what they would like to do. These factors appear directly related to patients’ confidence that the decision was “right.”

The beliefs, motivations, and expectations of parents who have enrolled their children in a genetic biorepository

Purpose:Little is known about parental attitudes toward return of individual research results (IRRs) in pediatric genomic research. The aim of this study was to understand the views of the parents who enrolled their children in a genomic repository in which IRRs will be returned.Methods:We conducted focus groups with parents of children with developmental disorders enrolled in the Gene Partnership (GP), a genomic research repository that offers to return IRRs, to learn about their understanding of the GP, motivations for enrolling their children, and expectations regarding the return of IRRs.Results:Parents hoped to receive IRRs that would help them better understand their children’s condition(s). They understood that this outcome was unlikely, but hoped that their children’s participation in the GP would contribute to scientific knowledge. Most parents wanted to receive all IRRs about their child, even for diseases that were severe and untreatable, citing reasons of personal utility. Parents preferred electronic delivery of the results and wanted to designate their preferences regarding what information they would receive.Conclusion:It is important for researchers to understand participant expectations in enrolling in a research repository that offers to disclose children’s IRRs in order to effectively communicate the implications to parents during the consenting process.Genet Med 2012:14(3):330–337

Parental perspectives on suffering and quality of life at end-of-life in children with advanced heart disease: an exploratory study*.

Objective: To describe parent perspectives regarding the end-of-life experience of children with advanced heart disease. Design: Cross-sectional multicenter survey study of bereaved parents. Setting: Two tertiary care pediatric hospitals. Subjects: Parents of children younger than 21 years with primary cardiac diagnoses who died in the hospital 9 months to 4 years before the survey date. Parents were excluded if they were non-English speakers or had previously denied permission to contact. Intervention: The Survey for Caring for Children with Advanced Heart Disease was developed, piloted, and then sent to parents of all children who died at two sites. Measurements and Main Results: Fifty bereaved parents responded (39% response rate) a mean of 2.7 years after their child’s death. Median age at death was 6 months (3.6 d to 20.4 yr). At end-of-life, 86% of children were intubated and 46% were receiving mechanical circulatory support. Seventy-eight percent died during withdrawal of life-sustaining interventions and 16% during resuscitative efforts. Parents realized that their child had no realistic chance of survival a median of 2 days prior to death (0–30 d). According to parents, 47% of children suffered “a great deal,” “a lot,” or “somewhat” during the end-of-life period. The symptoms parents perceived to be causing the most suffering were breathing and feeding difficulties in children under 2 years and fatigue and sleeping difficulties in older children. Seventy-one percent of parents described the quality of life of their child during the last month of life as “poor” or “fair.” Most parents (84%) described the quality of care delivered as “very good” or “excellent.” Conclusions: According to their parents, many children with advanced heart disease experience suffering in the end-of-life care period. For most, realization that their child has no realistic chance of survival does not occur until late, some not until death is imminent. Once this realization occurs, however, parents perceive peacefulness, a “good death,” and excellent quality of care. Strategies for improved communication around symptom management, quality of life, prognosis, and advance care planning are needed for families of children with advanced heart disease.

Transition and transfer of adolescents and young adults with pediatric onset chronic disease: The patient and parent perspective

PURPOSEnTo determine patients and parents perceptions regarding the delivery of transition education and perceived barriers to transfer to adult oriented care.nnnMETHODSnA self-report survey was administered to a convenience sample of patients (16-25 years old) with various childhood onset chronic diseases. A similar survey was administered to their parents/guardians.nnnRESULTSnA total of 155 patients and 104 parents participated in the study. The mean age of patients was 18.8 ± 2.3 years; 57% were female. Although most patients and parents reported receiving information and training about their medical condition, significant gaps in other aspects of transition education were identified. These included stated deficiencies in education regarding unprotected intercourse, health of future offspring, birth control, pregnancy, illicit drug use, and future career or vocation counseling. Commonly cited barriers to transfer were emotional attachments and lack of adult medicine specialty providers; however, the majority anticipated being ready to transfer to adult oriented care by age 25 years.nnnCONCLUSIONnThere are significant gaps in the delivery of transition education as perceived by patients and their parents. Standardization of transition education may help ensure that patients acquire the knowledge and skills for health care self-management in adulthood and successful transfer to adult oriented care.

Nutrition attitudes and knowledge in medical students after completion of an integrated nutrition curriculum compared to a dedicated nutrition curriculum: a quasi-experimental study.

BACKGROUNDnNutrition education has presented an ongoing challenge to medical educators. In the 2007-2008 academic year, Harvard Medical School replaced its dedicated Preventive Medicine and Nutrition course with an integrated curriculum. The objective of the current study was to assess the effect of the curriculum change on medical student attitudes and knowledge about nutrition.nnnMETHODSnA survey was administered in a quasi-experimental design to students in the last class of the dedicated curriculum (n = 131) and the first class of the integrated curriculum (n = 135) two years after each class completed the required nutrition course. Main measures were attitude scores based on modified Nutrition in Patient care Survey and satisfaction ratings, performance on a nutrition knowledge test, and demographic variables. Two-tailed t-tests were performed.nnnRESULTSnResponse rates were 50.4% and 42.2%. There were no differences between the groups in attitude scores from the Nutrition in Patient care Survey (p = 0.43) or knowledge scores (p = 0.63). Students with the integrated curriculum were less satisfied with both the quantity (p < 0.0001) and quality (p = 0.008) of their nutrition education, and were more likely to have completed optional online nutrition training modules (p = 0.0089).nnnCONCLUSIONSnMedical student attitudes and knowledge about nutrition were not affected by the model of nutrition education they receive, though students in an integrated curriculum may feel their education is inadequate and seek additional training.

Family Participation during Intensive Care Unit Rounds: Attitudes and Experiences of Parents and Healthcare Providers in a Tertiary Pediatric Intensive Care Unit

OBJECTIVEnTo compare the experiences and attitudes of healthcare providers and parents regarding parental participation in morning rounds, in particular to evaluate for differences in perception of parental comprehension of rounds content and parental comfort with attendance, and to identify subgroups of parents who are more likely to report comfort with attending rounds.nnnSTUDY DESIGNnCross-sectional survey of 100 parents and 131 healthcare providers in a tertiary care pediatric medical/surgical intensive care unit. Descriptive statistics were used to analyze survey responses; univariate and multivariate analyses were performed to compare parent and healthcare provider responses.nnnRESULTSnOf parents, 92% reported a desire to attend rounds, and 54% of healthcare providers reported a preference for parental presence. There were significant discrepancies in perception of understanding between the 2 groups, with healthcare providers much less likely to perceive that parents understood both the format (30% vs 73%, P < .001) and content (21% vs 84%, P < .001) of rounds compared with parents. Analysis of parent surveys did not reveal characteristics correlated with increased comfort or desire to attend rounds.nnnCONCLUSIONSnA majority of parents wish to participate in morning rounds, whereas healthcare provider opinions are mixed. Important discrepancies exist between parent and healthcare provider perceptions of parental comfort and comprehension on rounds, which may be important in facilitating parental presence.

Parents' preferences for return of results in pediatric genomic research.

Background: The aim of this study was to ascertain parental preferences for the return of genetic research results on themselves and their children and their choices for genetic research results to receive. Methods: A mail survey was sent to 6,874 families seen at Boston Childrens Hospital. The survey included questions assessing the respondents preferences regarding the types of result they wanted to receive on themselves and their children. Results: Most of the 1,060 respondents ‘probably or ‘definitely wanted to receive genetic research results about themselves (84.6%) and their children (88.0%). Among those who wanted to receive results, 83.4% wanted to receive all research results for themselves and 87.8% for their children. When questions about specific types of research results were combined into a composite measure, fewer respondents chose to receive all results for themselves (53.5%) and for their children (56.9%). Conclusion: Although most parents report a desire to receive all research results on a general question, almost half chose to receive only a subset of research results when presented with specific types of research results. Our findings suggest that participants might not understand the implications of their choice of individual research results to receive unless faced with specific types of results.

Medication knowledge: an initial step in self-management for youth with inflammatory bowel disease.

Objective: Adolescents with chronic illness need to develop skills to independently manage their own health. Knowledge of medication is an early step in this process. We explored which factors affect acquisition of medication knowledge in adolescents with inflammatory bowel disease (IBD). Patients and Methods: Consecutive patients with IBD older than 10 years received a confidential survey at an outpatient visit including questions regarding medication name, dose, and adverse effects. Results were compared with the medical record. Demographic characteristics obtained included age, sex, disease duration, and type of IBD. Results: Completed surveys were returned by 294 patients (65% of those approached). Overall, 95% of patients could name their medication and 54% could identify their correct dose. Of 95 patients receiving biologics, 88% could identify the medicine and 50% could report either dose or timing. Of 139 patients on immunomodulator therapy, 94% could name medicine and 68% reported correct dose. Sex, type, or duration of disease did not affect name or dose knowledge. Generally, older patients did not demonstrate better medication or dosage knowledge than younger patients, although there was a significant trend toward improved knowledge of side effects for older patients. However, <32% of all of the patients could report a single major medication side effect. Conclusion: Medication knowledge is an early stage of self-management, yet many adolescents cannot report the dose of IBD medications, nor know the side effects of immunosuppression. This finding persists into late adolescence, which has ramifications for patients as they separate from parents for college or work.

The Development of a Preference-Setting Model for the Return of Individual Genomic Research Results

Understanding participants’ preferences for the return of individual research results (IRR) in genomic research may allow for the implementation of more beneficial result disclosure methods. We tested four preference-setting models through cognitive interviews of parents to explore how parents conceptualize the process of setting preferences and which disease characteristics they believe to be most important when deciding what results to receive on their child. Severity and preventability of a condition were highly influential in decision making and certain groups of research results were anticipated by participants to have negative psychological effects. These findings informed the development of an educational tool and preference-setting model that can be scaled for use in the return of IRR from large biobank studies.