Development and piloting of four decision aids for implantable cardioverter-defibrillators in different media formats.

BACKGROUND: Using DAs for preference-sensitive decisions is an evidence-based way to improve patient-centered decisions. Reimbursement mandates have increased the need for DAs in ICD care, although none have been formally evaluated. The objectives were to develop and pilot implantable cardioverter-defibrillator (ICD) decision aids (DAs) for patients considering primary prevention ICDs. METHODS: Development Phase: An expert panel, including patients and physicians, iteratively developed four DAs: a one-page Option GridTM conversation aid, a four-page in-depth paper tool, a 17-minute video, and an interactive website. Trial Phase: At three sites, patients with heart failure who were eligible for primary prevention ICDs were randomly assigned 2:1 to intervention (received DAs) or control (usual care). We conducted a mixed-methods evaluation exploring acceptability and feasibility. RESULTS: Twenty-one eligible patients enrolled (15 intervention). Most intervention participants found the DAs to be unbiased (67%), helpful (89%), and would recommend them to others (100%). The pilot was feasible at all sites; however, using clinic staff to identify eligible patients was more efficient than chart review. Although the main goals were to measure acceptability and feasibility, intervention participants trended towards increased concordance between longevity values and ICD decisions (71% concordant vs. 29%, p = .06). Participants preferred the in-depth paper tool and video DAs. Access to a nurse during the decision-making window encouraged questions and improved participant-perceived confidence. CONCLUSIONS: Participants felt the DAs provided helpful, balanced information that they would recommend to other patients. Further exploration of this larger context of DA use and strategies to promote independent use related to electrophysiology (EP) visits are needed.

Evidence of Cognitive Bias in Decision Making Around Implantable-Cardioverter Defibrillators: A Qualitative Framework Analysis.

BACKGROUND: Studies have demonstrated that patients with primary prevention implantable cardioverter-defibrillators (ICDs) often misunderstand the ICD. Advances in behavioral economics demonstrate that some misunderstandings may be due to cognitive biases. We aimed to explore the influence of cognitive bias on ICD decision making. METHODS AND RESULTS: We used a qualitative framework analysis including 9 cognitive biases: affect heuristic, affective forecasting, anchoring, availability, default effects, halo effects, optimism bias, framing effects, and state dependence. We interviewed 48 patients from 4 settings in Denver. The majority were male (n = 32). Overall median age was 61 years. We found frequent evidence for framing, default, and halo effects; some evidence of optimism bias, affect heuristic, state dependence, anchoring and availability bias; and little or no evidence of affective forecasting. Framing effects were apparent in overestimation of benefits and downplaying or omitting potential harms. CONCLUSIONS: We found evidence of cognitive bias in decision making for ICD implantation. The majority of these biases appeared to encourage ICD treatment.

Exploring cognitive bias in destination therapy left ventricular assist device decision making: A retrospective qualitative framework analysis.

BACKGROUND: Cognitive biases are psychological influences, which cause humans to make decisions, which do not seemingly maximize utility. For people with heart failure, the left ventricular assist device (LVAD) is a surgically implantable device with complex tradeoffs. As such, it represents an excellent model within which to explore cognitive bias in a real-world decision. We conducted a framework analysis to examine for evidence of cognitive bias among people deciding whether or not to get an LVAD. OBJECTIVES: The aim of this study was to explore the influence of cognitive bias on the LVAD decision-making process. METHODS: We analyzed previously conducted interviews of patients who had either accepted or declined an LVAD using a deductive, predetermined framework of cognitive biases. We coded and analyzed the interviews using an inductive-deductive framework approach, which also allowed for other themes to emerge. RESULTS: We interviewed a total of 22 heart failure patients who had gone through destination therapy LVAD decision making (15 who had accepted the LVAD and 7 who had declined). All patients appeared influenced by state dependence, where both groups described high current state of suffering, but the groups differed in whether they believed LVAD would relieve suffering or not. We found evidence of cognitive bias that appeared to influence decision making in both patient groups, but groups differed in terms of which cognitive biases were present. Among accepters, we found evidence of anchoring bias, availability bias, optimism bias, and affective forecasting. Among decliners, we found evidence of errors in affective forecasting. CONCLUSIONS: Medical decision making is often a complicated and multifaceted process that includes cognitive bias as well as other influences. It is important for clinicians to recognize that patients can be affected by cognitive bias, so they can better understand and improve the decision-making process to ensure that patients are fully informed.

Barriers and Facilitators to Scaling Up Outpatient Palliative Care.

BACKGROUND: The Institute of Medicine recommends people with serious advanced illness have access to skilled palliative care. However, the predominant delivery model of nonhospice palliative care is inpatient, consultative care focused on the end of life, with a small specialist palliative care workforce. OBJECTIVE: The study objective was to understand organizational factors that could influence the adoption and scale-up of outpatient palliative care in chronic advanced illness, using the example of heart failure. METHODS: This was a cross-sectional qualitative study. Participants were 17 health care providers and local, regional, and national health system leaders from the Veterans Health Administration (VHA) who were considering whether and how to adopt and sustain outpatient palliative care. Individual interviews using semistructured questions assessed domains of the Consolidated Framework for Implementation Science. RESULTS: Most providers and leaders perceived outpatient palliative care as high priority in the VHA given its patient-centeredness and potential to decrease health care use and costs associated with conditions like heart failure. They also supported a collaborative care team model of outpatient palliative care delivery where a palliative care specialist collaborates with medical nurses and social workers. They reported lack of performance measures/incentives for patient-centered care processes and outcomes as a potential barrier to implementation. Features of outpatient palliative care viewed as important for successful adoption and scale-up included coordination and communication with other providers, ease of integration into existing programs, and evidence of improving quality of care while not substantially increasing overall health care costs. CONCLUSION: Incentives such as performance measures and collaboration with local VHA providers and leaders could improve adoption and scale-up of outpatient palliative care.

Perspectives of Primary Care Providers Toward Palliative Care for Their Patients.

PURPOSE: The need for all providers to deliver basic palliative care has emerged as patients' needs outstrip the capacity of specialty palliative care. Many patients with complex illnesses have unmet needs and are seen in primary care more than other settings. We explore primary care providers' willingness and perceived capacity to provide basic palliative care, and their concerns and perceived barriers. METHODS: We performed semistructured telephone interviews with 20 primary care providers about their perceptions of palliative care, including needs, practices, experiences, access, and what would be helpful for their practices to systematically provide basic palliative care. RESULTS: We identified 3 major themes: (1) Participants recognize palliative needs in patients with complex problems. (2) They reactively respond to those needs using practice and community resources, believing that meeting those needs at a basic level is within the scope of primary care. (3) They can identify opportunities to improve the delivery of a basic palliative approach in primary care through practice change and redesign strategies used in enhanced primary care environments. CONCLUSIONS: Systematic attention along the multidimensional domains of basic palliative care might allow practices to address unmet needs in patients with complex illnesses by using existing practice improvement models, strategies, and prioritization.

The future as a series of transitions: qualitative study of heart failure patients and their informal caregivers.

BACKGROUND: Advance care planning often only focuses on written advance directives rather than on future goals important to patients and families. Heart failure has a particularly uncertain future with variable clinical trajectories. A better understanding of patient and family concerns about and perceptions of the future could improve advance care planning. OBJECTIVE: We aimed to identify how patients with heart failure and their informal (family) caregivers perceive their future. DESIGN: This was a cross-sectional study using qualitative methods. PARTICIPANTS: Thirty-three patients from an academic health care system with New York Heart Association class II-IV heart failure and 20 of their informal caregivers participated in the study. We used a purposive sampling strategy to include patients within a range of ages and health statuses. APPROACH: Participants were asked in individual, semi-structured interviews: "When you think about what lies ahead, what comes to mind?" Qualitative analysis used an inductive approach. Early in the analysis, it became clear that participants' narratives about the future were described in terms of past transitions. This led us to use transition theory to further guide analysis. Transition theory describes how people restructure their reality and resolve uncertainty during change. KEY RESULTS: Patients and their caregivers talked about past and present transitions when asked about the future: "The present gets in the way of talking about the future." We identified four common pivotal transitions, including the shock of first being diagnosed with heart failure; learning to adjust to life with heart failure; reframing and taking back control of one's life; and understanding and accepting that death is inevitable. Concerns about the future were framed based on the most recent transition. CONCLUSIONS: Heart failure is a series of transitions according to patients and caregivers. By recognizing and educating patients about transitions, identifying transition-specific concerns, and supporting patients and caregivers through transitions, the process of planning for the future as part of advance care planning may be improved.

Feasibility and acceptability of a collaborative care intervention to improve symptoms and quality of life in chronic heart failure: mixed methods pilot trial.

BACKGROUND: People with chronic heart failure (HF) suffer from numerous symptoms that worsen quality of life. The CASA (Collaborative Care to Alleviate Symptoms and Adjust to Illness) intervention was designed to improve symptoms and quality of life by integrating palliative and psychosocial care into chronic care. OBJECTIVE: Our aim was to determine the feasibility and acceptability of CASA and identify necessary improvements. METHODS: We conducted a prospective mixed-methods pilot trial. The CASA intervention included (1) nurse phone visits involving structured symptom assessments and guidelines to alleviate breathlessness, fatigue, pain, or depression; (2) structured phone counseling targeting adjustment to illness and depression if present; and (3) weekly team meetings with a palliative care specialist, cardiologist, and primary care physician focused on medical recommendations to primary care providers (PCPs, physician or nurse practioners) to improve symptoms. Study subjects were outpatients with chronic HF from a Veteran's Affairs hospital (n=15) and a university hospital (n=2). Measurements included feasibility (cohort retention rate, medical recommendation implementation rate, missing data, quality of care) and acceptability (an end-of-study semi-structured participant interview). RESULTS: Participants were male with a median age of 63 years. One withdrew early and there were <5% missing data. Overall, 85% of 87 collaborative care team medical recommendations were implemented. All participants who screened positive for depression were either treated for depression or thought to not have a depressive disorder. In the qualitative interviews, patients reported a positive experience and provided several constructive critiques. CONCLUSIONS: The CASA intervention was feasible based on participant enrollment, cohort retention, implementation of medical recommendations, minimal missing data, and acceptability. Several intervention changes were made based on participant feedback.

Feasibility and acceptability of a decision aid designed for people facing advanced or terminal illness: a pilot randomized trial.

BACKGROUND: Patients nearing the end of their lives face an array of difficult decisions. OBJECTIVE: This study was designed to assess the feasibility and acceptability of a decision aid (DA) designed for patients facing advanced or terminal illness. DESIGN: We conducted a pilot randomized clinical trial of Health Dialog's Looking Ahead: choices for medical care when you're seriously ill DA (booklet and DVD) applied to patients on a hospital-based palliative care (PC) service. SETTING: University of Colorado Hospital - December 2009 and May 2010. PARTICIPANTS: All adult, English-speaking patients or their decision makers were potentially eligible. Patients were not approached if they were in isolation, did not speak English or if any provider felt that they were not appropriate because of issues such as family conflict or actively dying. INTERVENTION: All participants received a standard PC consultation. Participants in the intervention arm also received a copy of the DA. Measurements Primary outcomes included decision conflict and knowledge. Participants in the intervention arm also completed an acceptability questionnaire and qualitative exit interviews. RESULTS: Of the 239 patients or decision makers, 51(21%) enrolled in the trial. The DA had no significant effect on decision conflict or knowledge. Exit interviews indicated it was acceptable and empowering, although they wished they had access to the DA earlier. CONCLUSIONS: While the DA was acceptable, feasibility was limited by late-life illness challenges. Future trials of this DA should be performed on patients earlier in their illness trajectory and should include additional outcome measures such as self-efficacy and confidence.

Paediatric spinal fusion surgery and the transition to home-based care: provider expectations and carer experiences.

There are more than 12 million children with special healthcare needs (CSHCNs) in the United States, many of whom require specialised health-care to treat chronic physical and developmental conditions. This study is a qualitative investigation of programme, surgical and at-home recovery experiences among CSHCNs and their family carers who participated in a spine surgical care programme at a paediatric hospital in the Western United States. The programme is designed to manage increased surgical risk and the transition of care from hospital to home for children with severe scoliosis undergoing spinal fusion surgery. We conducted 30 semi-structured in-depth interviews with 14 surgical team members and 16 family carers of children who had programme evaluations and spinal surgeries in 2006. Data were collected in 2008 and 2009 in hospital or at home locations to gather programme participation feedback from families and inform the adequacy of programme support to families during at-home recovery. Data were analysed by reflexive team and content analysis methodologies. Results showed the programme was effective at improving preoperative surgical evaluation and helping families to anticipate some aspects of the surgical experience and hospital discharge. However, the impact of spinal fusion surgery and the subsequent transition to home-based care was profoundly emotional for patients and their carers. Our data indicate that programme providers underestimated the extent of emotional trauma experienced by patients and families, particularly during the at-home recovery process. The data also suggest meaningful differences in providers' and carers' expectations for surgery. Carers' disappointment with their recovery experiences and the perceived lack of post-discharge support impacted their interpretations of and perspectives on their surgical experience. Implications of this research for surgical care programmes include the need for assessment and provision of support for physical, social, and emotional burdens experienced by patients and carers at pre-surgical, surgical and at-home recovery phases.

A qualitative evaluation of a new community living model: medical foster home placement.

BACKGROUND: The Department of Veterans Affairs (VA) Medical Foster Home (MFH) program is an alternative to nursing home (NH) placement for veterans who are NH-eligible but prefer to receive care in private homes. Program expansion is ongoing; however, inefficiencies exist in targeting Veterans for enrollment. METHODS: Semi-structured interviews were conducted with 35 individuals, 9 national MFH coordinators, 14 Primary Care Team Members, 2 veterans living in MFHs, 4 of their family members, 3 caregivers, and 3 family members of veterans who declined to participate in the program. Transcripts were analyzed using a general inductive approach supported by Archive for Technology, Lifeworld and Everyday language, text interpretation (ATLAS ti) V6.2. RESULTS: Three themes were identified as key facilitators of successful MFH placement: 1) The Environment - veterans needed to have appropriate and comfortable physical space that ensured safety and was in a desirable geographic location; 2) The Match - a collaborative relationship between veterans, care providers, and the medical team providing care within the home was essential; and 3) Perceptions and Expectations about the ability for needs to be met in MFHs and challenges related to health concerns, relocation, and costs. These themes, when integrated into the Social Ecological Model, provide a theoretical framework from which to guide future research and understand policy implications. CONCLUSIONS: MFHs represent a novel alternative to NH placement. This evaluation provides an understanding of factors that lead to successful MFH placement and integrates these themes into a theoretical framework designed to assist both VA policymakers interested in expanding the program and those within the civilian community seeking to study alternatives to traditional NH care.

Patient and caregiver congruence: the importance of dyads in heart failure care.

BACKGROUND: Informal (family) caregivers are integrally involved in chronic heart failure (HF) care. Few studies have examined HF patients and their informal caregiver as a unit in a relationship, or a dyad. Dyad congruence, or consistency in perspective, is relevant to numerous aspects of living with HF and HF care. Incongruence or lack of communication could impair disease management and advance care planning. OBJECTIVES: The purpose of this qualitative study was to examine for congruence and incongruence between HF patients and their informal (family) caregivers. Secondary analyses examined the relationship of congruence to emotional distress and whether dyad relationship characteristics (eg, parent-child vs spouse) were associated with congruence. METHODS: Thirty-four interviews consisting of HF patients and their current informal caregiver (N = 17 dyads) were conducted. Each dyad member was asked similar questions about managing HF symptoms, psychosocial care, and planning for the future. Interviews were transcribed and analyzed using the general inductive approach. RESULTS: Congruence, incongruence, and lack of communication between patients and caregivers were identified in areas such as managing illness, perceived care needs, perspectives about the future of HF, and end-of-life issues. Seven dyads were generally congruent, 4 were incongruent, and 6 demonstrated a combination of congruence and incongruence. Much of the tension and distress among dyads related to conflicting views about how emotions should be dealt with or expressed. Dyad relationship (parent-child vs spouse) was not clearly associated with congruence, although the relationship did appear to be related to perceived caregiving roles. CONCLUSIONS: Several areas of HF clinical and research relevance, including self-care, advance care planning, and communication, were affected by congruence. Further research is needed to define how congruence is related to other relationship characteristics, such as relationship quality, how congruence can best be measured quantitatively, and to what degree modifying congruence will lead to improved HF patient and caregiver outcomes.

The experience of fatigue as a distressing symptom of heart failure.

OBJECTIVE: We explored the perceptions, experience, and meaning of fatigue as a distressing symptom of chronic heart failure (HF). BACKGROUND: Fatigue, a common symptom of HF, may indicate worsening condition. Patients interpret their symptoms to determine the need for assistance. The meaning of fatigue in everyday life for HF patients in the United States is not well understood. METHODS: We performed an interpretive study of in-depth interviews with HF patients (n = 26) who reported fatigue as a symptom, using a thematic analysis of transcripts within an iterative group framework. RESULTS: Fatigue is characterized by patient values related to their self-identity, their body, their experience of time, their environment, and their relationships with others, including the healthcare system. CONCLUSIONS: Fatigue influences perceived proximity to death and how patients try to preserve what they can do. A patient's HF management plan should be tailored and responsive to that patient's experience of fatigue as communicated by the patient.

Giving voice to patients' and family caregivers' needs in chronic heart failure: implications for palliative care programs.

BACKGROUND: The American College of Cardiology Foundation/American Heart Association (ACC/AHA) Guidelines for the Management of Heart Failure recommend palliative care in the context of Stage D HF or at the end of life. Previous studies related to heart failure (HF) palliative care provide useful information about patients' experiences, but they do not provide concrete guidance for what palliative care needs are most important and how a palliative care program should be structured. OBJECTIVES: Describe HF patients' and their family caregivers' major concerns and needs. Explore whether, how, and when palliative care would be useful to them. DESIGN AND PARTICIPANTS: Qualitative study using in-depth interviews of 33 adult outpatients with symptomatic HF identified using purposive sampling and 20 of their family caregivers. APPROACH: Interviews were transcribed verbatim and analyzed using the constant comparative method. KEY RESULTS: Overall, patients and caregivers desired early support adjusting to the limitations and future course of illness, relief of a number of diverse symptoms, and the involvement of family caregivers using a team approach. A diverse group of participants desired these elements of palliative care early in illness, concurrent with their disease-specific care, coordinated by a provider who understood their heart condition and knew them well. Some diverging needs and preferences were found based on health status and age. CONCLUSIONS: HF patients and their family caregivers supported early integration of palliative care services, particularly psychosocial support and symptom control, using a collaborative team approach. Future research should test the feasibility and effectiveness of integrating such a program into routine HF care.

Patient and cardiologist perceptions on decision making for implantable cardioverter-defibrillators: a qualitative study.

BACKGROUND: Although implantable cardioverter-defibrillators (ICDs) reduce mortality in selected patients, they are also associated with potential risks. Periprocedural decision making requires understanding both benefits and risks. METHODS: This qualitative study aims to understand cardiologists' and patients' perspectives about decision making surrounding ICD implantation using semi-structured, in-depth interviews. We interviewed 11 cardiologists (including four electrophysiologists) and 20 patients (14 with ICDs; six who declined ICDs). The data were analyzed through the theoretical lens of patient-centered care using the constant comparative method. RESULTS: Cardiologists emphasized the benefits of ICD therapy but varied substantially in the extent to which they emphasized the various risks associated with ICD implantation with patients. Cardiologists indicated that they were influenced by the benefits of therapy as presented in published guidelines. Many patients who chose to receive an ICD indicated that they followed the advice of their physician without questioning the risks and benefits of the device. Some ICD recipients described not learning many of the risks until after device implantation or when they experienced these side effects. Patients who declined ICD implantation were concerned that the ICD was unnecessary or believed that the risks related to sudden death without an ICD did not apply to them. Only one patient considered the trade-off between dying quickly versus living longer with progressive heart failure. CONCLUSIONS: In our sample, cardiologists' desire to adhere to published guidelines appears to inhibit shared decision making. The marked variability in the discussions surrounding ICD decisions highlights a need for an improved process of ICD decision making.

Outpatient palliative care for chronic heart failure: a case series.

BACKGROUND/OBJECTIVES: Although the palliative care needs of outpatients with chronic heart failure (HF) are numerous, there is limited published experience in providing outpatient HF palliative care. This article describes the patients seen and the issues addressed in an outpatient palliative care program for patients with HF. METHODS: Case series involving a retrospective medical record review using descriptive quantitative and qualitative analysis. RESULTS: Over a 3 ½ year time period, 50 patients were seen, resulting in 228 total visits. Fifty percent of patients were seen only once. Fifty-eight percent of patients had New York Heart Association (NYHA) Class III-IV HF. Within a year of the initial palliative care visit, 14% of patients died. Depression, anxiety, pain, fatigue, breathlessness, and sleep disturbance were common symptoms addressed during visits. Advance care planning topics were discussed with 48% of patients; hospice and resuscitation status were each discussed with 16% of patients. Fears or concerns about the future arose in 34% of patients. Care coordination was commonly addressed with patients' other health care providers (58%). The most common referrals were to social work (26%) and rehabilitation/physical therapy (20%). CONCLUSIONS: Several findings reflect how outpatient HF palliative care differs from that of inpatient hospital-based palliative care. Many of the issues addressed, including care coordination, advance care planning, and psychosocial issues, imply that palliative HF care is complementary to standard HF care at all stages of the disease process and that future programs should consider dedicating a nurse and/or social worker. Research is needed to test how such a care model affects patient-centered outcomes, utilization, and cost.

Exploring physician decisions about end-of-life opiate prescribing: a qualitative study.

BACKGROUND: Opiates are commonly used for symptoms at the end of life (EOL). Little is known about the decision-making process physicians go through when deciding to prescribe opiates for their EOL patients. The study's objective was to explore physician factors affecting EOL opiate prescribing. METHODS: Qualitative study of 38 physicians in the Denver area in the specialties of outpatient and inpatient medicine, geriatrics, oncology, and palliative care. Semi-structured qualitative interviews by trained interviewers asked physicians about their knowledge, attitudes, and experiences in prescribing opiates, reasons for prescribing opiates, barriers to prescribing opiates, changes in prescribing habits, and perceived patient factors that influence prescribing. Interviews were analyzed using ATLAS.ti qualitative analysis software and independently coded by two reviewers. RESULTS: We found a spectrum of beliefs ranging from the viewpoint that opiates are underused at EOL to overused. We found five key themes: practices in when and how to use opiates, barriers to prescribing, personal experiences drive prescribing, social meaning of opiates, and differences in the role of physician. Physicians interviewed described experiences, both personal and professional, that influenced their opiate-prescribing habits. All respondents expressed positive experiences with prescribing opiates in being able to ease patients' suffering at EOL and to improve their functionality and quality of life. CONCLUSIONS: Differences in prescribing habits, attitudes, and experiences of physicians influence opiate prescribing, which may lead to over- and underprescribing. Knowledge, barriers, and fears about EOL opiate prescribing need to be addressed to ensure EOL patients are receiving appropriate symptom relief.

Patient perspectives on decision making in heart failure.

BACKGROUND: Patients with heart failure (HF) face an array of challenging decisions involving medications, devices, and transplants. The goal of this qualitative study was to describe patients' perceptions surrounding difficult decisions along with factors that influenced their decisions. METHODS AND RESULTS: We studied 22 patients with symptomatic HF from the University of Colorado Hospital using in-depth, semistructured interviews. We used descriptive theme analysis in an iterative process to analyze responses to the question: "Can you tell me about any important or difficult decisions you have had to make about your heart condition?" Two distinct decision-making styles emerged: active (55%) and passive (45%). Active decision makers identified interventions such as implantable cardioverter-defibrillators, medications, and transplants to be the most difficult decisions and weighed concerns for side effects, family, and quality of life. Passive decision makers generally did not identify a difficult decision and described factors such as trust in God, trust in the physician, and power of the physician as reasons for their passivity. CONCLUSIONS: Patients with HF use active and passive decision styles in their approach to medical decision making. Future work should investigate communication techniques to assure that passive decision makers receive health care that is concordant with their values.

Returning to work after cancer: quantitative studies and prototypical narratives.

OBJECTIVE: A combination of quantitative data and illustrative narratives may allow cancer survivorship researchers to disseminate their research findings more broadly. We identified recent, methodologically rigorous quantitative studies on return to work after cancer, summarized the themes from these studies, and illustrated those themes with narratives of individual cancer survivors. METHODS: We reviewed English-language studies of return to work for adult cancer survivors through June 2008, and identified 13 general themes from papers that met methodological criteria (population-based sampling, prospective and longitudinal assessment, detailed assessment of work, evaluation of economic impact, assessment of moderators of work return, and large sample size). We drew survivorship narratives from a prior qualitative research study to illustrate these themes. RESULTS: Nine quantitative studies met four or more of our six methodological criteria. These studies suggested that most cancer survivors could return to work without residual disabilities. Cancer site, clinical prognosis, treatment modalities, socioeconomic status, and attributes of the job itself influenced the likelihood of work return. Three narratives-a typical survivor who returned to work after treatment, an individual unable to return to work, and an inspiring survivor who returned to work despite substantial barriers-illustrated many of the themes from the quantitative literature while providing additional contextual details. CONCLUSION: Illustrative narratives can complement the findings of cancer survivorship research if researchers are rigorous and transparent in the selection, analysis, and retelling of those stories.

The impact of physical and psychosocial factors on work characteristics after cancer.

Most previously employed cancer survivors continue to work after treatment, but the impact of cancer symptoms or psychosocial concerns on their work has seldom been assessed. We conducted a community-based survey of cancer survivors from the Colorado Central Cancer Registry to assess the changes in their work and the demographic, clinical, and psychosocial characteristics associated with work changes over the 2 years following diagnosis. Of 100 survivors, 92 returned to work, but 57% of those reduced their work by more than 4 h/week, and 56% noted a change in some aspect of their occupational role. Physical symptoms, particularly lack of energy or nausea/vomiting, and psychological symptoms, particularly feeling bored or useless or feeling depressed, were significantly associated with a reduction in work hours or a change in occupational role. Since changes in work are common and are associated with both physical and psychosocial symptoms, strategies are needed to reduce symptom burden and barriers to work and to improve work capacity for working-age cancer survivors.

Relationship of processes and structures of care in general surgery to postoperative outcomes: a qualitative analysis.

BACKGROUND: With increased focus on improving surgical care quality, understanding structures and processes that influence surgical care is timely and important, as is more precise specification of these through improved measurement. STUDY DESIGN: We conducted a qualitative study to help design a quantitative survey of structures and processes of surgical care. We audiotaped 44 face-to-face interviews with surgical care leaders and other diverse members of the surgical care team from 6 hospitals (two Veterans Affairs, four private sector). Qualitative interviews were transcribed and analyzed to identify common structures and processes mentioned by interviewees to include on a quantitative survey and to develop a rich description of salient themes on indicators of effective surgical care services and surgical care teams. RESULTS: Qualitative analyses of transcripts resulted in detailed descriptions of structures and processes of surgical care services that affected surgical care team performance--and how particular structures led to effective and ineffective processes that impacted quality and outcomes of surgical care. Communication and care coordination were most frequently mentioned as essential to effective surgical care services and teams. Informants also described other influences on surgical quality and outcomes, such as staffing, the role of residents, and team composition and continuity. CONCLUSIONS: Surgical care team members reinforced the importance of understanding surgical care processes and structures to improve both quality and outcomes of surgical care. The analysis of interviews helped the study team identify potential measures of structures and processes to include in our quantitative survey.