A Midwest Stakeholder Evaluation of an Adolescent and Young Adult Cancer Survivor Needs Assessment Survey.

Purpose: Over 87,000 adolescents and young adults (AYAs) are diagnosed with cancer in the United States each year. Improvement in outcomes in the AYA population has lagged that of both younger and older patients. This decrement may be attributable to several factors, including insufficient supportive care services. Our team modified the Needs Assessment & Service Bridge (NA-SB) tool, utilizing an iterative approach with patient and clinician stakeholders to meet the needs of the AYA population at a large Midwestern Cancer Center. Methods: We recruited a 10-member AYA Advisory Board (AB) from our Cancer Center patients, and met five times over 9 months to discuss supportive care and the NA-SB. We recruited a multidisciplinary group of oncology clinicians to assess content validity and conducted interviews with nine clinician stakeholders to discuss implementation. Results: The AB generated a 59-item-modified NA-SB, retaining most of the original NA-SB items and adding several more. Five items with concerns for relevance and/or clarity were revised to create the final 58-item-modified NA-SB. Priorities for implementation were identified by AB and clinician stakeholders. Conclusions: The modified NA-SB thoroughly reflects supportive care needs of our Midwestern AYA cancer survivors. When implemented, the tool may facilitate patient-care team communication and provide data to prioritize development of new supportive care resources. AYA cancer survivors have unique supportive care needs that are insufficiently addressed by current care models; using the modified NA-SB may help address those needs, leading to improved AYA outcomes.

Characteristics of Cancer Symptom Clusters Reported through a Patient-Centered Symptom Cluster Assessment.

In the scope of symptom cluster research, few investigators have obtained patients' perceptions of their symptom clusters, even though this information is central to designing effective interventions. In this cross-sectional study, 38 adults with cancer completed measures of demographics, health outcomes (functional status, well-being, quality of life) and a symptom cluster assessment that captured symptom occurrence, severity, distress, clustering, a priority cluster, causal attributions, duration, directional relationships, and cluster interference with daily life. Participants described 72 distinct symptom clusters. Symptoms were most frequently attributed to the cancer diagnosis. Participants' priority symptom cluster typically included two symptoms of continuous duration and one intermittent symptom. Temporal order and direction of symptom relationships varied, with 75 different relationships described among symptom pairs. Greater symptom cluster burden and interference were related to poorer health outcomes. This patient-centered view of symptom clusters revealed substantial variability in symptom cluster characteristics with important implications for symptom management.

Building capacity through integration of advanced practice nurses in research.

BACKGROUND: Advanced practice nurses (APNs) are well-positioned to function in research settings, however barriers to their engagement persist. Capacity-building through multisite research opportunities is an important strategy to overcome these barriers. PURPOSE: To describe the benefits and challenges of incorporating APNs in research and discuss opportunities for building capacity for nursing research. METHOD: Grounded in the experience of a nurse-led multisite longitudinal observational descriptive symptom study, field notes representing the research continuum were reviewed and categorized into themes reflecting benefits and challenges. FINDINGS: Uniform benefits of acquiring research knowledge and skills, participating in research activities, and engaging in professional development were experienced among APNs. Limited support for regulatory and research activities, inadequate financial infrastructure, and a perceived lack of value for APNs' professional growth were commonly encountered challenges. DISCUSSION: Establishment of an infrastructure that elevates benefits and mitigates challenges is necessary to effectively incorporate APNs in a research environment, build capacity, and advance nursing science.

Comparison of child self-report and parent proxy-report of symptoms: Results from a longitudinal symptom assessment study of children with advanced cancer.

PURPOSE: This report represents a subanalysis of data from a primary study and addresses a gap in understanding the similarities and differences of symptom reporting between children with advanced cancer and their parents. The objectives of this subanalysis were to (1) compare reports of symptom prevalence, symptom burden, and symptom frequency, severity, and distress between groups of children and adolescents and their parents, and (2) describe concordance of symptom reports within individual child-parent dyads. DESIGN AND METHODS: Forty-six children with relapsed, refractory, or progressive cancer and their parents from five pediatric cancer centers prospectively reported symptoms every 2 weeks for up to 61 weeks. The abbreviated Pediatric Quality of Life and Evaluation of Symptoms Technology-Memorial Symptom Assessment Scales were used to measure symptom prevalence, frequency, severity, and distress. RESULTS: Children and parents reported pain, fatigue, nausea, and sleeping difficulties as the most frequently occurring symptoms. With the exception of shortness of breath, parents reported symptom prevalence more often than children. The differences in parent reports were statistically significant for fatigue, nausea, lack of appetite, feeling nervous, and sadness. Parents reported higher symptom burden scores compared to children for all individual symptoms except shortness of breath. Children reported higher scores for 19 of 32 possible symptom frequency, severity, and distress ratings. Children's scores were higher for frequency and severity, while parents' scores were higher for distress. Sleeping difficulties, pain, nausea, and diarrhea demonstrated the highest concordance, while feeling nervous, sadness, irritability, and fatigue yielded the lowest concordance between children's and parents' symptom reports. PRACTICE IMPLICATIONS: Eliciting the symptom experience from the child, when appropriate, rather than a parent proxy is best practice given evidence supporting the overestimation of symptom prevalence by parents and underestimation of symptom frequency and severity for some symptoms. When proxy raters must be used, pediatric nurses should educate proxy raters regarding symptom assessment, and assess and tend to symptoms that may not exhibit visual cues. Pediatric nurses should conduct a comprehensive symptom assessment and evaluate beyond the presence of symptoms and include an assessment of frequency, severity, and distress for physical and psychological symptoms to optimize symptom management strategies.

Promoting ethics across the healthcare sector: what can codes achieve?

Over the course of the twentieth century, numerous national and international ethics 'codes' have been developed. While such codes serve important substantive and symbolic functions, they can also pose challenges. In this article, we discuss these challenges, noting that they fall into four main categories relating to conceptual tensions, power imbalances, organisational barriers, and threats of exploitation. We illustrate these challenges using examples provided from the United Nations Educational Scientific and Cultural Organization (UNESCO) Universal Declaration on Bioethics and Human Rights. We emphasise the importance of accountability in the development and maintenance of national and international codes and argue that, despite all their challenges, codes provide an important common language among otherwise disparate and sometimes adversarial groups, and provide visible and explicit sets of standards that may be invoked by community members to criticise and hold powerful bodies to account. This is particularly important for practitioners and researchers who belong to organisations that are signatories to codes, who can use these codes to both guide and justify ethical behaviour in the face of competing organisational, professional and political imperatives.

Electronic Symptom Assessment in Children and Adolescents With Advanced Cancer Undergoing Hematopoietic Stem Cell Transplantation.

Background/Purpose: Effective symptom assessment and management for children with advanced cancer undergoing hematopoietic stem cell transplantation (HSCT) is critical to minimize suffering. The purpose of this subanalysis was to compare feasibility of electronic data collection data and symptom prevalence, frequency, severity, and distress from children with advanced cancer undergoing HSCT with a non-HSCT cohort. Method: An abbreviated Pediatric Quality of Life and Evaluation of Symptoms Technology Memorial Symptom Assessment Scale was electronically administered every 2 weeks to children with advanced cancer. A subanalysis was conducted for the cohort of children who received autologous or allogeneic HSCT. Results: Forty-six participants completed 563 symptom assessments during the study. However, 11 of these 46 children received HSCT and completed 201 symptom assessments. The median age in the HSCT cohort was 12.7 years, 73% were female, and most children had a hematologic (45%) or solid tumor (45%) malignancy. Pain (35%), nausea (30%), sleeping difficulty (29%), and fatigue (22%) were the most commonly reported symptoms in children receiving HSCT. Children in the HSCT cohort had similar total, subscale, and individual symptom scores compared with children who did not receive HSCT. Certain domains of gastrointestinal symptoms (nausea, lack of appetite, and diarrhea) were higher for children receiving HSCT compared with children with advanced cancer not receiving HSCT (p < .05). Conclusion: Elicitation of patient-reported symptom experiences using electronic methods improves nurses' understanding of the symptom experience for children with advanced cancer undergoing HSCT and may promote timely assessment and treatment of distressing symptoms.

Curbside radiology consults: how does the time allotted for review, level of training, and subspecialization affect interpretation accuracy?

The interpretation accuracy of resident and attending radiologists was assessed based on time allotted for study review, level of training, and subspecialization. Twelve cases were presented in a time-constrained and a time-unconstrained fashion to eight residents and six attendings. Overall, timed and untimed diagnostic accuracy was similar for all groups tested. Attendings sometimes performed worse than residents and in-field attendings when reviewing out-of-field studies. Residents often had greater specialty-specific accuracy than out-of-field attendings. Residents are capable of providing accurate "curbside" consultations to referring clinicians even under time-constrained conditions. Highly subspecialized attending radiologists should be cognizant of their out-of-field limitations.

How pharmaceutical industry employees manage competing commitments in the face of public criticism.

The pharmaceutical industry has been criticised for pervasive misconduct. These concerns have generally resulted in increasing regulation. While such regulation is no doubt necessary, it tends to assume that everyone working for pharmaceutical companies is equally motivated by commerce, without much understanding of the specific views and experiences of those who work in different parts of the industry. In order to gain a more nuanced picture of the work that goes on in the "medical affairs" departments of pharmaceutical companies, we conducted 15 semi-structured interviews with professionals working in medical departments of companies in Sydney, Australia. We show that this group of pharmaceutical professionals are committed to their responsibilities both to patients, research participants, and the public and to their companies. Despite the discrepancies between these commitments, our participants did not express much cognitive dissonance, and this appeared to stem from their use of two dialectically related strategies, one of which embraces commerce and the other of which resists the commercial imperative. We interpret these findings through the lens of institutional theory and consider their implications for pharmaceutical ethics and governance.

Hip and knee implants: current trends and policy considerations.

This paper constitutes an analysis of the issues, relationships, emerging hospital strategies, and policy needs surrounding hip and knee implants. Demand for hip and knee replacements is rising annually, and growth is expected to be substantial. Costs are high, reaching $11 billion for hospitals in 2004 and $5 billion for Medicare in 2006. Relationships among stakeholders add complexity. Case studies reveal emerging strategies by hospitals for management of implants. Policy considerations include development of a national council for data and technology assessment, a national joint registry, price transparency, and incentives.

Hospitals' strategies for orchestrating selection of physician preference items.

This article analyzes hospitals' strategies to shape physicians' behavior and counter suppliers' power in purchasing physician preference items. Two models of standardization are limitations on the range of manufacturers or products (the "formulary" model) and price ceilings for particular item categories (the "payment-cap" model), both requiring processes to define product equivalencies often with inadequate product comparison data. The formulary model is more difficult to implement because of physicians' resistance to top-down dictates. The payment-cap model is more feasible because it preserves physicians' choice while also restraining manufacturers' power. Hospitals may influence physicians' involvement through a process of orchestration that includes committing to improve clinical facilities, scheduling, and training and fostering a culture of mutual trust and respect.

Barriers to reframing surprise as "opportunity" in health care: a commentary on McDaniel, et al.

Reframing surprise as an opportunity rather than as a threat can be facilitated when we recognize that efforts to deny, control, and prevent uncertainty operate as barriers to reframing. Removing the barriers requires trust and risk-taking among key stakeholders, especially among patients, physicians, and health care organizations.

Narrowing the possibilities: using quality improvement tools to decrease competence assessment overload.

In many institutions, competence assessment tools are seen as the way to address all clinical practice issues. In the absence of a systematic approach to development, these tools are produced en masse with little sharing of information among educators, managers, and clinical leaders. In an effort to harness "competence assessment overload," the authors propose a system that will assist staff in prioritizing the use and development of outcome-driven competence assessment tools.

Discourse in different voices: reconciling N = 1 and N = many.

When groups are convened to discuss the making of policy, people are chosen to represent particular interests because they have relevant experience. Different stakeholders, however, may use differing discourses, and particular discourses may be privileged in particular contexts. This means that important contributions to the discussion may not be reflected in final reports. Discursive incommensurability is particularly seen when individual, personal experience is presented in meetings where quantification or "numbers talk" is privileged. While pooled personal experience may carry some weight in such a context, individual anecdote does not. The inclusion of 'consumers' in policy making groups may result in their dysempowerment. Their presence promises that they will have influence, but their voices disappear from the final document. The promise of empowerment is not realised. Dysempowerment may translate into empowerment with time, as it has done with feminism and the HIV/AIDS lobby. In order to speed the process, we suggest some practical means whereby mixed discourses may be generated and monitored. For constructive interchange, each party to the discourse needs to express the interests and arguments relevant to the group he or she represents. Supporting this principle of representation are principles of implicature and radical respect. Implicature is the act of implying what is relevant to others involved in the discourse. Radical respect is a fundamental and foundational respect for others in their roles as representatives of stakeholders with legitimate interests in the topic of the discourse.