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ABSTRACT: Successful transplant medicine hinges on consent to deceased organ donation. Yet rates of consent remain suboptimal. To increase the availability of transplantable organs, several policy strategies along with a rich body of evidence aimed at identifying best practices for obtaining consent have accumulated. This review describes past and current policies and practices, presents evidence illustrating the impact of these policies and practices on consent, and summarizes future directions and recommendations for the field. Key findings include evidence that although past policies such as required request have been unsuccessful, the recent policy, first-person authorization, shows promise. Additionally, practices such as decoupling and detailed discussions of brain death are unwarranted. On the other hand, the Organ Donation Breakthrough Collaboration was successful. We also underscore the impact of alternative procedures such as donation after cardiac death. Last, effective communication that is delivered by trained, caring requesters at the appropriate time, in a supportive environment, and allows sufficient time for families to make an informed decision, optimizes the request process. Organ procurement organizations' adoption of such request practices, implementation of evidence-based policies regarding donation after cardiac death, and further investigations of the medical basis for dual brain death examinations are recommended.
Progress in transplantation (Aliso Viejo, Calif.) 03/2013; 23(1):99-104. · 1.03 Impact Factor
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ABSTRACT: OBJECTIVE: To examine whether interpersonal behavior and provision of key information by tissue requesters (TRs) during phone requests for tissue donation with initially undecided next-of-kin (NOK) predict consent/refusal to donate. METHODS: The sample consisted of 102 TR-NOK dyads in which NOK reported that they were initially undecided about their intentions to donate their loved ones' tissue. Audiorecordings of requests, gathered from a national sample of tissue banks, were coded to assess for interpersonal behavior of each interactant. The effects of TR and NOK interpersonal behavior as well as information provision by the TR on consent/refusal were examined. RESULTS: Expressions of disapproval by the TR strongly predicted NOK donation decision. Predictors of consent included fewer questions asked and more supportive statements made by the TR, as well as reassurance from the TR that donation would not lead to disfigurement or affect the appearance of the body. CONCLUSION: Aspects of the communication process between TR and NOK during requests for tissue donation significantly predict consent to donate among initially undecided NOK. PRACTICE IMPLICATIONS: TR trainings aimed at improving interpersonal skills and provision of key information could potentially increase tissue donation consent rates.
Patient Education and Counseling 12/2012; · 2.31 Impact Factor
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ABSTRACT: Context-Although recent studies have demonstrated that tissue requesters' behavior during conversations about tissue donation affects consent rates, the link between requesters' behavior and consent rates remains unclear.Objective-To examine whether positive/collaborative requester behaviors elicit complementary behaviors from next of kin who were initially undecided about their willingness to donate their deceased family member's tissues.Design-Audio recordings of requests were coded to assess for interpersonal behavior of each interactant.Setting-Audio recordings were gathered from a national sample of tissue banks.Participants-One hundred and two requester-next-of-kin dyads, consisting of 102 relatives and 53 requesters.Main Outcome Measures-Tissue requester and next-of-kin affiliation and interpersonal control were assessed. Tissue requesters' persuasion, confirmation (eg, approval, empathy, reassurance) and disapproval, as well as next-of-kin approval and disapproval, were examined.Results-Tissue requesters and next of kin tended to match one another on affiliation and complement one another on interpersonal control. "Key topics," which may affect the next of kin's decision, are discussed in only about one-third of requests. Next of kin were less affiliative and more disapproving when requesters were also more disapproving. Interpersonal behavior of the tissue requester, such as affiliation, statements of disapproval, and persuasion, as well as discussion of key topics, was a significant predictor of the interpersonal behavior of the next of kin.Conclusions-Positive requester behaviors elicited a positive response from undecided next of kin. Because many next of kin have limited knowledge about tissue donation before the request, the communication process may affect the next of kin's perceptions of donation and thus affect the likelihood of consent. Findings could potentially inform communication skills training for tissue requesters; future research could examine effects of such training on consent rates.
Progress in transplantation (Aliso Viejo, Calif.) 12/2012; 22(4):427-35. · 1.03 Impact Factor
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ABSTRACT: BACKGROUND: First Person Authorization (i.e., donor designation) legislation makes indicating one's intent to be a posthumous organ donor legally binding, much like a living will or advance directive. Such legislation is the most recent in a long history of organ donation policies in the United States and has received little attention in the literature. METHODS: This retrospective cohort study recruited nine US organ procurement organizations (OPOs) and their staff who make requests for organ donation as well as family decision makers approached by OPO staff about organ donation. Telephone interviews (N = 1,087) with family decision makers assessed the attitudes, perceptions, and behaviors regarding the request for organ donation of families of designated donors as compared with those of patients who did not formally designate themselves as donors. RESULTS: Almost two thirds (65.7%) of the families of registered donors were aware of the decedent's decision to register as a posthumous donor. Family decision makers who authorized donation and those of designated donors exhibited greater knowledge of organ donation and more positive attitudes than decision makers who refused to donate. Families of designated donors had more favorable perceptions of the request for organ donation and were more satisfied with both the time spent discussing donation and the request process; fewer donor designation families were surprised at the request for donation. CONCLUSION: The enactment of First Person Authorization legislation increases the likelihood of familial authorization and satisfaction with the final donation outcome. As compared with other families approached about the option of organ donation, families of designated donors report having a more positive experience with the organ donation request process overall and greater comfort and satisfaction with the donation decision. LEVEL OF EVIDENCE: Retrospective cohort study, level II.
The journal of trauma and acute care surgery. 11/2012;
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ABSTRACT: BACKGROUND: Clinical trials (CTs) are the mechanism by which research is translated into standards of care. Low recruitment among underserved and minority populations may result in inequity in access to the latest technology and treatments, compromise the generalizability, and lead to failure in identification of important positive or negative treatment effects among under-represented populations. METHODS: Data were collected over a 39-month period on patient eligibility for available therapeutic cancer CTs. Reasons for ineligibility and refusal were collected. The data were captured using an automated software tool for tracking eligibility pre-enrollment. We examined characteristics associated with being evaluated for a trial, and reasons for ineligibility and refusal, overall and by patient race. RESULTS: African-Americans (AAs) were more likely than Whites to be ineligible (odds ratio, (OR) = 1.26, 95% confidence interval (CI) = 1.0-1.58) and if eligible, to refuse participation (OR = 1.79, 95% CI = 1.27-2.52), even after adjusting for insurance, age, gender, study phase, and cancer type. White patients were more likely to be ineligible due to study-specific or cancer characteristics. AAs were more likely to be ineligible due to mental status or perceived noncompliance. Whites were more likely to refuse due to extra burden, due to concerns with randomization and toxicity, or because they express a positive treatment preference. AAs were more likely to refuse because they were not interested in CTs, because of family pressures, or they felt overwhelmed (NS)).Discussion This study is the first to directly compare ineligibility and refusal rates and reasons captured prospectively in AA and White cancer patients. The data are consistent with earlier studies that indicated that AA patients more often are deemed ineligible and, when eligible, more often refuse participation. However, differences in reasons for ineligibility and refusal by race have implications for a cancer center to participate in CTs appropriate for the population of patients served. On a broader scale, consideration should be given to modifying eligibility criteria and other design aspects to permit broader participation of minority and other underserved groups. Clinical Trials 2012; 0: 1-10. http://ctj.sagepub.com.
Clinical Trials 10/2012; · 1.92 Impact Factor
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ABSTRACT: To evaluate the patient, physician, and visit-related factors associated with patient ratings of positive physician relational communication.
Pre- and post-visit surveys were conducted with 485 patients attending a routine periodic health exam with one of 64 participating physicians. The audio-recorded visits were coded for elements of patient-physician communication including assertive responses, partnership building, question asking, supportive talk, and expressions of concern.
Patient reports of positive physician relational communication were associated with patient perceptions of how well the physician understood the patient's health care preferences and values, a patient-physician interaction outside of the exam room, and physician-prompted patient expressions of concern.
In addition to a patient's perception of their relationship with their physician going into the visit, relatively simple acts like extending the interaction beyond the exam room and ensuring that patients feel invited to express concerns they may have during the visit may influence patient perceptions of physician relational communication.
This study offers preliminary support for the idea that relational communication and its associated benefits may be fostered through simple physician-driven acts such as interacting with patients outside of the exam room and encouraging patients to express concerns within the visit.
Patient Education and Counseling 05/2012; 89(1):96-101. · 2.31 Impact Factor
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ABSTRACT: Informed consent is the primary moral principle guiding the donation of human tissue for transplant purposes. When patients' donation wishes are not known, family members making the decision about tissue donation should be provided with requisite information needed to make informed donation decisions. Using a unique dataset of 1,016 audiotaped requests for tissue obtained from 15 US tissue banking organizations, we examined whether the information provided to families considering tissue donation met current standards for informed consent. The results indicated that many elements of informed consent were missing from the donation discussions, including the timeframe for procurement, autopsy issues, the involvement of both for-profit and nonprofit organizations, and the processing, storage and distribution of donated tissue. A multiple linear regression analysis also revealed that nonwhites and family members of increased age received less information regarding tissue donation than did younger, white decision makers. Recommendations for improving the practice of obtaining consent to tissue donation are provided.
Cell and Tissue Banking 03/2012; · 0.96 Impact Factor
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ABSTRACT: Disagreements between cancer patients and their caregivers about treatment and care can affect the patient's physical and mental well-being. Therefore it is important to understand if oncologists can accurately identify the presence of patient-caregiver decisional conflict. This study examined assessments made by lung cancer patients, their caregivers, and their oncologists regarding patient-caregiver disagreements concerning treatment and care decisions.
We assessed the extent to which the patient, caregiver, and oncologist reported disagreement between the patient and the family member regarding treatment decisions in 134 patient-caregiver-oncologist triads. Descriptive statistics were used to explore rates of concordance amongst all possible combinations of raters. Loglinear models were tested for 3-way agreement.
Most patient-caregiver pairs, 82.1% (n = 110), reported agreement concerning presence or absence of decisional conflict. Oncologists were more successful in detecting absence of conflict than the presence of conflict. When the caregiver and the oncologist agreed, it was regarding the absence of conflict (64.9%), rather than the presence of conflict. In 10.6% (n = 15) of cases, oncologists reported that conflictual relationships negatively impacted their ability to provide patient care.
Recent models of cancer patient care promote including the caregiver fully in the process while respecting the primacy of the patient's perspective. However, these models assume that the oncologist will recognize when disagreements exist and be able to assist in conflict resolution. The degree to which the oncologist identified that conflict exists and implications for their ability to provide patient care when familial disagreements existed are discussed.
Lung cancer (Amsterdam, Netherlands) 03/2012; 77(1):212-6. · 3.14 Impact Factor
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ABSTRACT: Background. This study explored the characteristics of colorectal cancer (CRC) patients who accessed Internet-based health information as part of their symptom appraisal process prior to consulting a health care provider. Method. Newly diagnosed CRC patients who experienced symptoms prior to diagnosis were interviewed. Brief COPE was used to measure patient coping. Logistic and linear regressions were used to assess Internet use and appraisal delay. Results. Twenty-five percent of the sample (61/242) consulted the Internet prior to visiting a health care provider. Internet use was associated with having private health insurance (odds ratio [OR] = 2.55; 95% confidence interval [CI] = 1.20-5.43) and experiencing elimination symptoms (OR = 1.43; 95% CI = 1.14-1.80) and was marginally associated with age (OR = 0.96; 95% CI = 0.93-0.99). Internet use was not related to delayed medical care seeking. Conclusion. Internet use did not influence decisions to seek medical care. The Internet provided a preliminary information resource for individuals who experienced embarrassing CRC symptoms, had private health insurance, and were younger.
Health Education & Behavior 10/2011; 39(5):583-8. · 1.54 Impact Factor
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ABSTRACT: OBJECTIVE: This study examined differences in attitudes and preferences between African American and White caregivers about cancer treatment and care. METHODS: There were 173 White and 26 African American caregivers of advanced lung cancer patients who were recruited as a convenience sample. A telephone interview was conducted to collect information using a semi-structured questionnaire. Using logistic regression, we examined differences between racial groups concerning therapeutic and caregiving issues controlling for socioeconomic and demographic variables. RESULTS: The regression analyses showed that African American caregivers had higher expectations for treatment outcomes (p ≤ 0.05) but poorer understanding of hospice and a stronger preference for hospice care outside the home (p ≤ 0.05). They were more likely to believe that the patient communicates with the family about cancer treatment to meet the family's expectations rather than seek emotional support (p ≤ 0.01). They were also more reluctant to endorse children's responsibility to make a treatment decision and are less likely to be fully satisfied with the decision-making process (p ≤ 0.05). CONCLUSIONS: The findings suggest some differences in beliefs and cultural values between African American and White caregivers. African American caregivers appear to believe more in the possibility of curative care for advanced lung cancer and eschew hospice care. The findings inform possible challenges regarding communication about end-of-life treatment and care with African American caregivers and a need for the provision of adequate information and education. Copyright © 2011 John Wiley & Sons, Ltd.
Psycho-Oncology 08/2011; · 3.34 Impact Factor
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ABSTRACT: Adjuvant! is a model that provides recurrence and mortality risk predictions for patients with breast cancer considering adjuvant therapies. Although low-risk patients who saw Adjuvant! chose adjuvant therapy less frequently, whether this was because of educational or other aspects of the decision aid is unknown. The authors explored whether Adjuvant! affects choice of therapy through increased patient knowledge. A subset of data were analyzed from a cluster randomized trial in which oncology practices in 2 major United States cities were randomly assigned to use either Adjuvant! or an informational pamphlet to educate patients. Of 405 patients, 48 were low-risk, with 28 assigned to the decision aid and 20 to the pamphlet. Among the low-risk patients, using frequency tables and Fisher exact tests, the authors explored whether Adjuvant! was associated with more accurate patient estimates of survival; whether accuracy was associated with treatment choice; and whether, after controlling for accuracy, any remaining association was seen between Adjuvant! and treatment choice. Adjuvant! was associated with more accurate estimates of baseline prognosis compared with the pamphlet (57% vs. 25%; P = .04). Patients who had more accurate estimates of baseline prognosis were less likely to choose adjuvant therapy (62% vs. 89%; P = .04). After controlling for accuracy, no statistically significant association was found between the use of Adjuvant! and adjuvant therapy (P = .59 and P = .11 for inaccurate and accurate patients, respectively). Adjuvant! seems to influence patient choice through educational rather than other means of persuasion. However, many patients held inaccurate risk perceptions after viewing Adjuvant!.
Journal of the National Comprehensive Cancer Network: JNCCN 07/2011; 9(7):707-12. · 4.41 Impact Factor
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ABSTRACT: To examine the influence of patient and physician communication factors on diagnostic delay (DD).
242 patients diagnosed with colorectal cancer (CRC) in the past 6 months who experienced symptoms prior to diagnosis were administered a 2-h semi-structured qualitative interview to assess communication with health care provider and ease of access to care, among other factors. Patient-provided information was verified via review of medical records.
The factors associated with DD>2 months included lower income (OR=0.56, p=0.03), having regular physician prior to receiving a cancer diagnosis (OR=2.52, p=0.03), having a physician who used temporizing communication strategies during the consultation (OR=2.41, p=0.02), receiving an initial alternate diagnosis (OR=3.36, p=0.02), experiencing referral delay (OR=3.61, p=<0.001), and experiencing follow-up delay of any kind (OR=3.32, p=0.01).
Excellent communication skills that appropriately probe for relevant social and economic patient information, assist patients in distinguishing and elaborating on symptoms, and provide clear rationale and instructions for future steps, will speed along the diagnosis process and could be the difference between early and late stage CRC.
Increased understanding of physician communication and practice styles that contribute to DD could have a positive impact on decreasing the morbidity and mortality from this disease.
Patient Education and Counseling 05/2011; 84(3):352-8. · 2.31 Impact Factor
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ABSTRACT: The availability of genetic tests for cancer susceptibility is increasing. Current tests, however, have limited clinical sensitivity. Even when clinically valid tests are available, the genetic counseling and informed consent process might not be feasible for dying patients with cancer. DNA banking preserves the opportunity for future research or clinical testing and may provide critical opportunities for surviving relatives. This study explored the current practices and potential for DNA banking for cancer susceptibility among oncologists specializing in palliative care.
Palliative care oncologists actively providing clinical care for dying patients with cancer were recruited for an online survey. Descriptive statistics for DNA banking practices, perceived qualification to recommend banking, and potential predictors were assessed.
Data were collected from 49 physicians (37% recruitment rate). Eighty percent reported assessing at least some patients for genetic cancer susceptibility in the past 12 months. No participants reported banking DNA for patients in the past 12 months. Only 5% reported feeling at least somewhat qualified to order DNA banking. A Web-based risk assessment tool and genetic counselor on staff were perceived as the most helpful potential resources.
Despite its potential, DNA banking is not being used by palliative care oncologists.
Journal of Oncology Practice 05/2011; 7(3):183-7.
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ABSTRACT: This study explores the effects of tissue requesters' relational, persuasive, and nonverbal communication on families' final donation decisions. One thousand sixteen (N = 1,016) requests for tissue donation were audiotaped and analyzed using the Siminoff Communication Content and Affect Program, a computer application specifically designed to code and assist with the quantitative analysis of communication data. This study supports the important role of communication strategies in health-related decision making. Families were more likely to consent to tissue donation when confirmational messages (e.g., messages that expressed validation or acceptance) or persuasive tactics such as credibility, altruism, or esteem were used during donation discussions. Consent was also more likely when family members exhibited nonverbal immediacy or disclosed private information about themselves or the patient. The results of a hierarchical log-linear regression revealed that the use of relational communication during requests directly predicted family consent. The results provide information about surrogate decision making in end-of-life situations and may be used to guide future practice in obtaining family consent to tissue donation.
Journal of Health Communication 04/2011; 16(9):955-75. · 1.61 Impact Factor
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ABSTRACT: Many observational coding schemes have been offered to measure communication in health care settings. These schemes fall short of capturing multiple functions of communication among providers, patients, and other participants. After a brief review of observational communication coding, the authors present a comprehensive scheme for coding communication that is (a) grounded in communication theory, (b) accounts for instrumental and relational communication, and (c) captures important contextual features with tailored coding templates: the Siminoff Communication Content & Affect Program (SCCAP). To test SCCAP reliability and validity, the authors coded data from two communication studies. The SCCAP provided reliable measurement of communication variables including tailored content areas and observer ratings of speaker immediacy, affiliation, confirmation, and disconfirmation behaviors.
Journal of Health Communication 02/2011; 16(2):178-97. · 1.61 Impact Factor
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ABSTRACT: This paper provides an overview of the implementation of using unannounced standardized patients (USPs) to conduct health communication research in clinical settings.
Certain types of health communication situations are difficult to capture because of their rarity or unpredictable nature. In primary care the real reasons for a visit are frequently unknown until the consultation is well under way. Therefore, it is logistically difficult for communication studies to capture many real-time communications between patients and their physicians. Although the USP methodology is ideal for capturing these communication behaviors, challenges to using this method include developing collaborative relationships with clinical practices, logistical issues such as safeguarding the identity of the USP, training USPs and creating their identities, maintaining fidelity to the role, and analyzing the resultant data.
This paper discusses the challenges and solutions to USP implementation. We provide an example of how to implement a USP study using an on-going study being conducted in primary care practices.
This paper explores the advantages and challenges as well as strategies to overcome obstacles to implementing a USP study.
Despite the challenges, USP methodology can contribute much to our understanding of health communication and practice.
Patient Education and Counseling 02/2011; 82(3):318-24. · 2.31 Impact Factor
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ABSTRACT: This study investigated depressive symptomatology in lung cancer patients and their identified caregiver.
We conducted semi-structured interviews and administered measures of family environment, depressive symptomatology, and the extent to which the caregiver blamed the cancer on the patient not having taken better care of him/herself to 190 patient-caregiver dyads. Multivariate two-level models were used to estimate the unique effects for each dyad member and cross-partner effects while controlling for interdependencies in the data.
More than half the patients (55%) were male, whereas 74% of caregivers were female. The majority (57.4%) were spouses, followed by offspring, and other family or friends. The baseline model with covariates showed that younger caregivers, spouse caregivers, and caregivers who blamed the patient for the cancer had higher depressive symptom scores. When examining the unique effect for each dyad member, with the exception of patient report of familial conflict, patient and caregiver reports of lower familial cohesion and expressiveness and higher conflict were associated with higher depression scores for patient and caregiver, respectively. When examining cross-partner effects, patient reports of lower cohesion, lower expressiveness, and greater conflict were associated with higher caregiver depression scores. Offspring caregivers reported less depression than non-offspring caregivers.
The family environment and blaming the patient during times of illness can affect both patient and caregiver depression. Findings suggest that quality of the family dynamic is important for patients, but may be particularly influential for caregivers. Future research should aid clinicians' assessment of family environment when making treatment plans.
Psycho-Oncology 12/2010; 19(12):1285-93. · 3.34 Impact Factor
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ABSTRACT: The authors developed a quality-of-life measure specific to long-term breast cancer survivors. Participants were women diagnosed with early-stage disease ≥ 7 years postdiagnosis. The final scale is the result of an iterative interview process with the 28-item scale administered to 285 participants. Factor analysis demonstrated with seven domains: physical, sexual and cognitive function, body image, coping, social support, and anxiety. Cronbach's alpha is .88. Convergent and divergent validity are also reported. The Long Term Quality of Life-Breast Cancer Scale has domains specific to breast cancer and will be useful to psychosocial and clinical researchers.
Journal of Psychosocial Oncology 11/2010; 28(6):589-609. · 0.98 Impact Factor
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ABSTRACT: Family consent to tissue donation currently falls well below that for solid organ donation. Moreover, research suggests that Americans have limited understanding of tissue donation, an activity largely overshadowed by the more publicly visible organ donation. This research sought to identify determinants of families' consent to tissue donation.
Data collection included a brief, self-administered survey completed by tissue bank staff and telephone interviews with family for a sample of tissue donor-eligible deaths reported to a national sample of 16 United States Tissue banks from 2003 to 2006. Family members (N = 1,418) and tissue bank staff (n = 226) involved in the tissue donation decision participated in the research.
The families of 1,015 (71.6%) tissue donor-eligible patients consented to tissue donation; 403 (26.8%) families refused. Results revealed a multitude of associations between study variables and the donation decision. A subsequent multivariable analysis identified determinants of family consent to tissue donation, including the discussion of key donation-related issues during the request (adjusted odds ratio [AOR], 17.22; 95% confidence interval [CI], 11.61-25.54), the quality of communication during the request (AOR, 12.39; CI, 7.76-20.02), families' tissue donation attitudes and knowledge (AOR, 10.01; CI, 6.47-15.50), families' initial reactions to the request (AOR, 7.86; CI, 5.13-12.05), families' advance notice of the request (AOR, 3.95; CI, 2.41-6.46), and patient and family sociodemographic characteristics (AOR, 3.32; CI, 2.01-5.48).
Family consent to tissue donation is affected by many of the same variables influencing consent to solid organ donation. Recommendations for practice are provided.
The Journal of trauma 10/2010; 69(4):956-63. · 2.48 Impact Factor
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ABSTRACT: Hereditary cancer assessment at the end of life is a relatively unexplored area, but it could be critical for surviving family members. This study explored the prevalence of hereditary cancer among dying cancer patients and assessed patients' perceived awareness of DNA testing and/or banking in a public access hospital. Palliative care patients with cancer from a single institution (or their medical-decision-making surrogates for patients unable to answer for themselves) completed structured interviews. Information was collected through medical records review and structured interviews for 43 dying cancer patients. Information for 9 patients was collected from surrogates. Nine patients (21%, 95% CI = 8.8% to 33.1%) had strong genetic risk. Currently available genetic tests could have addressed this risk for several patients. None had previous genetic counseling, testing or DNA banking. Among strong-risk patients, about half of patients/surrogates had heard/read "almost nothing" about genetic testing (44%) and DNA banking (67%). Perceived genetic awareness was not associated with genetic risk, and neither were sociodemographic characteristics. The proportion of hereditary cancer may be at least as high in the palliative care population as in other clinical settings, but awareness and uptake among patients are low. These conditions are not being recognized upstream and families are losing valuable information.
Journal of Genetic Counseling 10/2010; 19(5):497-525. · 1.77 Impact Factor
