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Laura A Siminoff

Publications and source records attributed to Laura A Siminoff.

At least 19 recordsLinked to original sources
PubMed2006

Measuring discord in treatment decision-making; progress toward development of a cancer communication and decision-making assessment tool.

Families, as a unit, play an important role in the process of making decisions about care for and with adult cancer patients. Families often step in as the patient's advocate and primary decision-maker as the patient's condition deteriorates. How well caregivers fulfill that role may depend on the level of congruence between the family members and the patient. Disagreements may jeopardize processes of decision-making and treatment choice. To facilitate the clinical assessment process and to provide a tool for research, we are designing an instrument that can validly and reliably assess the level of family discord concerning the treatment of late stage cancer as they consider participation in clinical trials, palliative care and salvage treatment such as chemotherapy designed to decrease tumor burden without hope of cure. Development of the instrument is a four step process to develop and test the instrument: (1) formative interviewing with lung cancer patients and their family caregivers to identify and develop a comprehensive list of domains and items; (2) refinement of the items' wording with a sample of 43 patients and 67 family caregivers; (3) testing the reduced item pool to determine statistical and content validity and reliability with an initial of sample of 42 patients and their primary caregivers; (4) examination of the 30-item scale's properties with 160 lung cancer patients and their primary caregivers.

Attitude to Health↗
PubMed2005

Health insurance and cardiac transplantation: a call for reform.

Cardiac transplantation is an accepted therapy for patients with end-stage heart failure (ESHF). Presently in the U.S., patients with ESHF need to have health insurance or another funding source to be considered eligible for cardiac transplantation. Whether it is appropriate to exclude potential recipients solely due to lack of finances has received considerable interest including being the subject of a recent major motion picture (John Q, New Line Cinema, 2002). However, one important aspect of this debate has been underappreciated and insufficiently addressed. Specifically, organ donation does not require the donor to have health insurance. Thus, individuals donate their hearts although they themselves would not have been eligible to receive a transplant had they needed one. By querying Siminoff's National Study of Family Consent to Organ Donation database, we find that this situation is not uncommon as approximately 23% of organ donors are uninsured. Herein we also discuss how the funding requirement for cardiac transplantation has been addressed by the federal government in the past, its implications on the organ donor consent process, and its potential impact on organ donation rates. We call for a government-sponsored, multidisciplinary task force to address this situation in hopes of remedying the inequities in the present system of organ allocation.

Health Care Reform↗
PubMed2005

A communication model of shared decision making: accounting for cancer treatment decisions.

The authors present a communication model of shared decision making (CMSDM) that explicitly identifies the communication process as the vehicle for decision making in cancer treatment. In this view, decision making is necessarily a sociocommunicative process whereby people enter into a relationship, exchange information, establish preferences, and choose a course of action. The model derives from contemporary notions of behavioral decision making and ethical conceptions of the doctor-patient relationship. This article briefly reviews the theoretical approaches to decision making, notes deficiencies, and embeds a more socially based process into the dynamics of the physician-patient relationship, focusing on cancer treatment decisions. In the CMSDM, decisions depend on (a) antecedent factors that have potential to influence communication, (b) jointly constructed communication climate, and (c) treatment preferences established by the physician and the patient.

Communication↗
PubMed2005

Patient perceptions of access to care and referrals to specialists: a comparison of African-American and white older patients with knee and hip osteoarthritis.

BACKGROUND: There is a marked racial difference in the use of knee and hip replacement for osteoarthritis (OA). The reasons for this disparity remain unclear. We examined how African-American and white patients with symptomatic OA of the knee and/or hip compare with respect to their perceptions of care for knee and hip OA. METHODS: Survey of 596 male patients with OA of the knee and/or hip in primary care clinics at Cleveland VAMC. RESULTS: African-American (44%) and white (56%) study participants were comparable with respect to age and clinical factors. African Americans were more likely to have VA insurance only [OR=1.93 (1.13-3.28)]. African Americans were less likely to report difficulty getting medical care when needed [OR=0.54 (0.34-0.88)]. Differences in the two groups regarding satisfaction with and confidence in the primary physician were not significant. The proportions of participants who received specialty care referrals were similar. CONCLUSION: African-American patients reported having only VA insurance more often than white patients. Other aspects of perceived system and provider-based factors were similar between groups.

Black or African American↗
PubMed2004

Comparison of the informed consent process for randomized clinical trials in pediatric and adult oncology.

PURPOSE: To compare the informed consent processes for phase III pediatric and adult oncology clinical trials in view of the critical importance of human subjects protection in both pediatric and adult cancer care. Findings are discussed in terms of the opportunities for improving pediatric and adult oncology informed consent. PATIENTS AND METHODS: A total of 219 subjects are reported on. Adult oncology patients made up 36.1% (n = 79) of the sample. Pediatric surrogates made up the remaining 63.9% (n = 140). Subjects in both studies were observed and audiotaped in conversation with their oncologists, and interviewed afterwards. Comparisons between the adult and pediatric subjects were done using chi(2) statistics and t tests. RESULTS: Differences between the pediatric and adult informed consent processes were found. Adult oncology decision makers were, on average, more fully informed and more actively engaged by their oncologists. Pediatric decision makers were, however, given more information about survival/cure, randomization, and voluntariness. Comprehension difficulties were more frequent among pediatric decision makers. Suggestions for improvement are made in view of the differences between adult and pediatric oncology research environments. CONCLUSION: Ongoing efforts to improve the ethical framework of clinical cancer research need to take into account the key differences between pediatric and adult oncology informed consent. More research needs to be done to explore the differences between adult and pediatric informed consent processes in oncology.

Adult↗
PubMed2004

Communication of randomization in childhood leukemia trials.

CONTEXT: Most children diagnosed as having leukemia become research subjects in randomized clinical trials (RCTs), but little is known about how randomization is explained to or understood by parents. OBJECTIVE: To investigate physicians' explanation and parental understanding of randomization in childhood leukemia RCTs. DESIGN AND SETTING: A multisite study of the informed consent communication process for RCTs of childhood leukemia. Consecutive cases were recruited from pediatric oncology inpatient wards at 6 US children's hospitals associated with major academic medical centers from July 1, 1999, until December 31, 2001. The informed consent conferences were observed and audiotaped, and the information obtained was coded and analyzed. Parents were interviewed shortly after the conference to ascertain their understanding. PARTICIPANTS: Parents and members of the health care team who participated in 137 informed consent conferences for children with newly diagnosed acute leukemia. MAIN OUTCOME MEASURES: Observed explanations of randomization and parental understanding of randomization after the consent conference. RESULTS: Randomization was explained by physicians in 83% of cases and a consent document was presented during the conference in 95% of cases. Interviews after the conference demonstrated that 68 (50%) of 137 parents did not understand randomization. Parents of racial minority and lower socioeconomic status were less likely to understand randomization (P<.001 for each). Discussion of specific clinical trial details and the presence of a nurse during the conference were associated with understanding. Eighty-four percent of children were enrolled in a leukemia trial. CONCLUSIONS: Despite oral and written explanation, half of the parents in this study did not understand randomization for childhood leukemia trials. To make informed consent more effective, future research must seek to improve communication during this critical interchange.

Adolescent↗
PubMed2004

Death and organ procurement: public beliefs and attitudes.

While brain death and the dead donor rule (patients must not be killed by organ retrieval) have been clinically and legally accepted in the US as a prerequisite to organ removal, there is little data about public attitudes and beliefs concerning these matters. To examine the public attitudes and beliefs about the determination of death and its relationship to organ transplantation, 1351 Ohio residents >or=18 years were randomly selected and surveyed using random digit dialing (RDD) sample frames. The RDD telephone survey was conducted using computer-assisted telephone interviews. The survey instrument was developed from information provided by 12 focus groups and a pilot study of the questionnaire. Three scenarios based on hypothetical patients were presented: brain dead, in a coma, or in a persistent vegetative state (PVS). Respondents' provided personal assessments of whether the patient in each scenario was dead and their willingness to donate that patient's organs in these circumstances. Over 98% of respondents had heard of the term brain death, but only one-third (33.7%) believed that someone who was brain dead was legally dead. The majority of respondents (86.2%) identified the brain dead patient in the first scenario as dead, 57.2% identified the patient in a coma as dead (Scenario 2), and 34.1% identified the patient in a PVS as dead (Scenario 3). Nearly, a third (33.5%) were willing to donate the organs of patients they classified as alive for at least one scenario, in seeming violation of the dead donor rule. Most respondents were not willing to violate the dead donor rule, although a substantial minority was. However, the majority of respondents were unaware, misinformed or held beliefs that were not congruent with current definitions of brain death. This study highlights the need for more public dialogue and education about brain death and organ donation.

Adolescent↗
PubMed2004

Death and organ procurement: public beliefs and attitudes.

Although "brain death" and the dead donor rule--i.e., patients must not be killed by organ retrieval--have been clinically and legally accepted in the U.S. as prerequisites to organ removal, there is little data about public attitudes and beliefs concerning these matters. To examine the public attitudes and beliefs about the determination of death and its relationship to organ transplantation, 1351 Ohio residents >18 years were randomly selected and surveyed using random digit dialing (RDD) sample frames. The RDD telephone survey was conducted using computer-assisted telephone interviews. The survey instrument was developed from information provided by 12 focus groups and a pilot study of the questionnaire. Three scenarios based on hypothetical patients were presented: "brain dead," in a coma, or in a persistent vegetative state (PVS). Respondents provided personal assessments of whether the patient in each scenario was dead and their willingness to donate that patient's organs in these circumstances. More than 98 percent of respondents had heard of the term "brain death," but only one-third (33.7%) believed that someone who was "brain dead" was legally dead. The majority of respondents (86.2%) identified the "brain dead" patient in the first scenario as dead, 57.2 percent identified the patient in a coma as dead (Scenario 2), and 34.1 percent identified the patient in a PVS as dead (Scenario 3). Nearly one-third (33.5%) were willing to donate the organs of patients they classified as alive for at least one scenario, in seeming violation of the dead donor rule. Most respondents were not willing to violate the dead donor rule, although a substantial minority was. However, the majority of respondents were unaware, misinformed, or held beliefs there were not congruent with current definitions of "brain death." This study highlights the need for more public dialogue and education about "brain death" and organ donation.

Brain Damage, Chronic↗
PubMed2004

Introduction.

Explore the source record for details and available documents.

Anencephaly↗
PubMed2003

Groups potentially at risk for making poorly informed decisions about entry into clinical trials for childhood cancer.

PURPOSE: Some patients may be at greater risk than others of enrolling on a randomized clinical trial (RCT) without fully understanding the implications. To investigate this possibility, this study poses the question, Do non-English-speaking Latino parents of children with leukemia show differences in their discussion of and understanding of an RCT when compared with English-speaking minority parents and with English-speaking majority (ie, white) parents? This research hypothesizes that factors such as social and educational status and the role of language interpreters may account for significant differences in the discussion and understanding of an RCT among the three groups. PATIENTS AND METHODS: A total of 108 parents are reported on, all of whom were observed, interviewed, and audiotaped during informed-consent discussions about participation in an RCT with their child's oncologist. Comparisons among the groups were performed using chi2 tests and a one-way analysis of variance. RESULTS: Problems of consent-related communication and understanding were more frequent among parents of low social status who spoke little or no English than they were in the two other groups. Several factors may have contributed to this disparity, including language interpretation, social status, and prevailing cultural norms. CONCLUSION: Some patients may be at greater risk than others of enrolling on an RCT without fully understanding the implications of their decision to do so. Numerous factors may contribute to this disparity, including language interpretation, social status, and prevailing cultural norms. Some specific strategies are suggested to help address this disparity.

Analysis of Variance↗
PubMed2003

Development and validation of school-based asthma and allergy screening instruments for parents and students.

BACKGROUND: The increasing morbidity attributable to asthma among school-aged children suggests the potential utility of school-based asthma screening programs. OBJECTIVE: We report our efforts to develop and validate culturally sensitive and clinically useful screening questionnaires (parent and child versions) for asthma and allergies among urban US school children. METHODS: Instrument development was accomplished through literature review, expert medical and child developmental input, focus group feedback, and a rigorous trial of the instruments in a public school setting. Questionnaires were distributed to 2,800 children and their families in an urban public school system (grades kindergarten through 6). Validity was evaluated by blinded comparison of results against a standardized clinical evaluation in 107 children, with final designations determined by an expert panel. RESULTS: Questionnaires pertaining to 2,083 children were returned (participation rate of 74%). A moderate level of agreement was observed between parent and student questionnaire responses (r values = 0.36 to 0.50; P values < 0.001). The highest frequency of asthma-like symptoms was reported for African-American boys and the lowest for Caucasian girls. The items from the parent questionnaire that best predicted asthma were "breathing problems" (occurring rarely or more; odds ratio 12.8; 95% confidence interval, 4.5 to 36.1) and "problems coughing" (sometimes or more; odds ratio 9.7; 95% confidence interval, 3.6 to 26.5). Considering the presence of cough (sometimes or more) and/or breathing problem (rarely or more) yielded a sensitivity of 80%; a specificity of 75%, a positive predictive value of 50%, and a negative predictive value of 92%. Similar levels of prediction were observed for the items "trouble breathing" and "noisy breathing" as directly reported by the students. Allergic rhinitis was best predicted by report of a runny/stuffy no se (sometimes or more; sensitivity of 83%, specificity of 61%). Allergic conjunctivitis was best predicted by "itchy eyes." CONCLUSIONS: Administration of a school-based questionnaire is feasible, with a high response rate and excellent internal consistency. A high sensitivity and acceptable specificity was achieved by using one to two questions for asthma, allergic rhinitis, and allergic conjunctivitis. Among the children in grades 2 or above, comparable levels of prediction could be achieved with the student or parent version.

Adolescent↗
PubMed2003

Older patients' perceptions of quality of chronic knee or hip pain: differences by ethnicity and relationship to clinical variables.

BACKGROUND: There is marked ethnic or racial disparity in the utilization of joint replacement for osteoarthritis. The reasons are not known. Pain is the reason most patients with osteoarthritis seek care. Cultural and psychosocial factors influence how patients experience and express pain. We examined whether patient descriptions of chronic pain vary by ethnicity and if they correlate with important clinical measures used in arthritis care. METHODS: Sample consisted of 300 male veterans who were > or =50 years of age with moderate to severe symptomatic knee or hip osteoarthritis. Structured surveys were used to assess patient descriptions of pain and to collect important demographic, clinical, and psychosocial variables. Factor analysis was used to assess patterns of pain description in a comparison of African-American and Caucasian patients. Pearson correlations were used to examine relationships between pain descriptions and clinical variables. RESULTS: The two groups were similar with respect to age and other baseline clinical characteristics. A confirmatory factor analysis on quality of pain description showed that a four-factor model converged for Caucasian patients (chi square = 39.6, comparative fit index = 0.95, Tucker Lewis index = 0.93, and root mean square error of approximation = 0.047), but a three-factor model was supported by the data for African-American patients (chi square= 25.4, comparative fit index = 1.00, Tucker Lewis index = 1.05, and root mean square error of approximation < or = 0.001). Chronic pain quality descriptions correlate significantly with Western Ontario and McMaster Universities Arthritis Index scores but not with radiologic stage of disease. CONCLUSIONS: African-American and Caucasian elderly patients with chronic knee or hip symptomatic osteoarthritis describe the quality of their pain differently. Patient descriptions of quality of chronic knee or hip pain do not correlate with radiologic stage of disease.

Black or African American↗
PubMed2003

Comparison of black and white families' experiences and perceptions regarding organ donation requests.

CONTEXT: Black families donate at a lower rate than white families. To help develop effective interventions, we compared black and white families' experiences. OBJECTIVE: To compare the organ donation request experiences of black and white patients' families with the hope of identifying factors to better inform consent-rate interventions among blacks. DESIGN: Chart reviews were conducted on files of all deceased patients. Audiotaped in-person interviews were conducted with family members, and telephone interviews were conducted with involved healthcare providers and organ procurement organization staff. SETTING: Nine trauma hospitals located in southwest Pennsylvania and northeast Ohio. PARTICIPANTS: A sample of 415 families of organ donor-eligible patients (61 black, 354 white). MEASURES: Measures of families' attitudes about and experiences with donation and transplantation. RESULTS: White families were more likely to be correctly perceived as receptive to donation. Black families viewed as receptive were less likely to be engaged in discussing as many donation-related issues as white families (p <.01). They were also less likely to have spoken to an organ procurement organization representative (p =.024) and were given fewer opportunities to consider the decision with healthcare provider or organ procurement organization staff. Black families had less knowledge about their family member's wishes, expressed less-favorable attitudes toward organ donation and the health care system, and, finally, were less likely than white families to donate organs (p =.001). A minority of black families (32.8%) knew about the need for more black donors. CONCLUSIONS: Interventions to increase consent among blacks need to encourage openness about organ donation within the black community and change healthcare provider and organ procurement organization attitudes and practices toward black families as potential donor families.

Adolescent↗