The James Supportive Care Screening: integrating science and practice to meet the NCCN guidelines for distress management at a Comprehensive Cancer Center.

BACKGROUND: Selecting a measure for oncology distress screening can be challenging. The measure must be brief, but comprehensive, capturing patients' most distressing concerns. The measure must provide meaningful coverage of multiple domains, assess symptom and problem-related distress, and ideally be suited for both clinical and research purposes. METHODS: From March 2006 to August 2012, the James Supportive Care Screening (SCS) was developed and validated in three phases including content validation, factor analysis, and measure validation. Exploratory factor analyses were completed with 596 oncology patients followed by a confirmatory factor analysis with 477 patients. RESULTS: Six factors were identified and confirmed including (i) emotional concerns; (ii) physical symptoms; (iii) social/practical problems; (iv) spiritual problems; (v) cognitive concerns; and (vi) healthcare decision making/communication issues. Subscale evaluation reveals good to excellent internal consistency, test-retest reliability, and convergent, divergent, and predictive validity. Specificity of individual items was 0.90 and 0.87, respectively, for identifying patients with DSM-IV-TR diagnoses of major depression and generalized anxiety disorder. CONCLUSIONS: Results support use of the James SCS to quickly detect the most frequent and distressing symptoms and concerns of cancer patients. The James SCS is an efficient, reliable, and valid clinical and research outcomes measure.

Agreement on diagnosis among patients, companions, and professionals after a dementia evaluation.

A diagnosis of dementia is challenging to deliver and to hear; yet, agreement on diagnosis is essential for effective treatment for dementia. We examined consensus on the results of an evaluation of dementia in 90 patients assessed at an Alzheimer's Disease Research Center. Diagnostic impressions were obtained from 5 sources: (1) the physician's chart; (2) the patient who was evaluated; (3) a companion present at the evaluation; (4) a diagnostic summary written by a nurse present during the evaluation; and (5) raters who watched a video of the diagnostic disclosure conversation. Overall, diagnostic consensus was only moderate. Patients and companions exhibited just fair agreement with one another. Agreement was better between physicians and companions compared with that between physicians and patients, although it was imperfect between physicians and video raters and the written summary. Agreement among sources varied by dementia severity, with the lowest agreement occurring in instances of very mild dementia. This study documents discrepancies that can arise in diagnostic communication, which could influence adjustment to a diagnosis of dementia and decisions regarding future planning and care.

The burden of late-life generalized anxiety disorder: effects on disability, health-related quality of life, and healthcare utilization.

OBJECTIVE: To describe the burden of Generalized Anxiety Disorder (GAD), a common anxiety disorder in older adults. DESIGN: Cross-sectional. SETTING: Late-life depression and anxiety research clinic in Pittsburgh, PA. PARTICIPANTS: One hundred sixty-four older adults with GAD and 42 healthy comparison participants with no lifetime history of psychiatric disorder were recruited from primary care and mental health settings as well as advertisements. MEASUREMENTS: Participants were evaluated with the Late Life Function and Disability Index to assess disability, the MOS 36-Item Short Form Survey Instrument to assess health-related quality of life (HRQOL), and the Cornell Service Index to assess healthcare utilization. RESULTS: Older adults with GAD were more disabled, had worse HRQOL, and had greater healthcare utilization, than nonanxious comparison participants, even in the absence of psychiatric comorbidity. After controlling for medical burden and depressive symptoms, higher severity of anxiety symptoms was associated with greater disability and poorer HRQOL in several domains. The greatest decrements in HRQOL and function were observed in measures assessing role functioning, including social function. CONCLUSION: This study, the largest ever of GAD in older adults, provides evidence of the significant burden of this disorder in late life. Given the high prevalence and chronicity of GAD in the elderly, these data provide a public health imperative for finding and implementing effective management strategies for this typically undiagnosed and untreated disorder.

Knowledge and perceptions in advance care planning.

OBJECTIVE: This study explores detailed knowledge of medical terminology and connotations of equivocal phrases frequently used in advance care planning. METHOD: One hundred seventy community-dwelling older adults answered yes-or-no questions about their knowledge of medical conditions and treatments and completed a written questionnaire about their connotations of ambiguous phrases such as "live like a vegetable." RESULTS: On average, participants answered 78% of all factual questions correctly; however, accuracy ranged from 59% to 94% across individuals. Participants knew the most about basic treatment purposes and procedures and the least about treatment outcomes. Perceptions of equivocal phrases were idiosyncratic, even for conventional terms such as improvement. DISCUSSION: Older adults approach advance care planning with critical misconceptions and individualistic perceptions, about which family and health care professionals may be unaware. Efforts to improve advance care planning should include instruction concerning medical information and encouragement to use explicit language to express treatment preferences.

Breaking bad news: Effects of forecasting diagnosis and framing prognosis.

OBJECTIVE: Research to support guidelines for breaking bad news is lacking. This study used an experimental paradigm to test two communication strategies, forecasting bad news and framing prognosis, in the context of cancer. METHODS: In a 2×2 design, 128 participants received bad news in a hypothetical consultation. A videotaped physician presented diagnostic and prognostic information, varying warning (warning shot vs. no warning), and framing (positive vs. negative). Effects on psychological distress, recall accuracy, and subjective interpretations of the news were assessed. RESULTS: Warning was not associated with lower psychological distress or improved recall. Individuals who heard a positively-framed prognosis had significantly less psychological distress, rated their prognosis better, and were more hopeful than those who heard a negatively-framed prognosis. However, they also showed a trend toward reduced accuracy in recalling prognostic statistics. CONCLUSIONS: Results contribute to a growing body of literature exploring optimal approaches for communicating bad news in health care. PRACTICE IMPLICATIONS: Although research in clinical settings is needed to bolster results, findings suggest that when providers use positive framing to reduce distress about prognosis, they should also consider ways to overcome potential reductions in recall accuracy, such as repeating statistical information or supplementing with written information.

Reaction to a dementia diagnosis in individuals with Alzheimer's disease and mild cognitive impairment.

OBJECTIVES: To examine short-term changes in depression and anxiety after receiving a dementia diagnosis. DESIGN: Pre/post survey design. SETTING: Alzheimer's Disease Research Center. PARTICIPANTS: Ninety individuals and their companions. MEASUREMENTS: Fifteen-item Geriatric Depression Scale and 20-item "state" version of the State-Trait Anxiety Inventory. RESULTS: Sixty-nine percent of the individuals were diagnosed with dementia; two-thirds of those were in the earliest symptomatic stages of dementia that, in other settings, is considered to represent mild cognitive impairment. No significant changes in depression were noted in individuals or their companions, regardless of diagnostic outcome or dementia severity. Anxiety decreased substantially after diagnostic feedback in most groups. CONCLUSION: Disclosure of a dementia diagnosis does not prompt a catastrophic emotional reaction in most people, even those who are only mildly impaired, and may provide some relief once an explanation for symptoms is known and a treatment plan is developed.