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1.  Electronic Self-Report Assessment for Cancer and Self-Care Support: Results of a Multicenter Randomized Trial 
Journal of Clinical Oncology  2013;32(3):199-205.
The purpose of this trial was to evaluate the effect of a Web-based, self-report assessment and educational intervention on symptom distress during cancer therapy.
Patients and Methods
A total of 752 ambulatory adult participants were randomly assigned to symptom/quality-of-life (SxQOL) screening at four time points (control) versus screening, targeted education, communication coaching, and the opportunity to track/graph SxQOL over time (intervention). A summary of the participant-reported data was delivered to clinicians at each time point in both groups. All participants used the assessment before a new therapeutic regimen, at 3 to 6 weeks and 6 to 8 weeks later, completing the final assessment at the end of therapy. Change in Symptom Distress Scale–15 (SDS-15) score from pretreatment to end of study was compared using analysis of covariance and regression analysis adjusting for selected variables.
We detected a significant difference between study groups in mean SDS-15 score change from baseline to end of study: 1.27 (standard deviation [SD], 6.7) in the control group (higher distress) versus −0.04 (SD, 5.8) in the intervention group (lower distress). SDS-15 score was reduced by an estimated 1.21 (95% CI, 0.23 to 2.20; P = .02) in the intervention group. Baseline SDS-15 score (P < .001) and clinical service (P = .01) were predictive. Multivariable analyses suggested an interaction between age and study group (P = .06); in subset analysis, the benefit of intervention was strongest in those age > 50 years (P = .002).
Web-based self-care support and communication coaching added to SxQOL screening reduced symptom distress in a multicenter sample of participants with various diagnoses during and after active cancer treatment. Participants age > 50 years, in particular, may have benefited from the intervention.
PMCID: PMC3887477  PMID: 24344222
2.  The Personal Patient Profile-Prostate, Decision Support for Men With Localized Prostate Cancer: A Multi-center Randomized Trial 
Urologic oncology  2011;31(7):1012-1021.
The purpose of this trial was to compare usual patient education plus the Internet-based, Personal Patient Profile-Prostate, versus usual education alone, on conflict associated with decision making, plus explore time-to-treatment and treatment choice.
A randomized, multi-center clinical trial was conducted with measures at baseline, one and six months. Men with newly diagnosed localized prostate cancer who sought consultation at urology, radiation oncology or multi-disciplinary clinics in four geographically-distinct American cities were recruited. Intervention group participants used the Personal Patient Profile-Prostate, a decision support system comprised of customized text and video coaching regarding potential outcomes, influential factors, and communication with care providers. The primary outcome, patient-reported decisional conflict, was evaluated over time using Generalized Estimating Equations to fit generalized linear models. Additional outcomes, time-to-treatment, treatment choice and program acceptability/usefulness, were explored.
A total of 494 eligible men were randomized (266 intervention; 228 control). The intervention reduced adjusted decisional conflict over time as compared with the control group, for the uncertainty score (estimate −3.61; (confidence interval, −7.01,−0.22) and values clarity (estimate −3.57; confidence interval (−5.85,−1.30) Borderline effect was seen for the total decisional conflict score (estimate −1.75; confidence interval (−3.61,0.11). Time-to-treatment was comparable between groups, while undecided men in the intervention group chose brachytherapy more often than in the control group. Acceptability and usefulness were highly rated.
The Personal Patient Profile-Prostate is the first intervention to significantly reduce decisional conflict in a multi-center trial of American men with newly diagnosed localized prostate cancer. Our findings support efficacy of P3P for addressing decision uncertainty and facilitating patient selection of a prostate cancer treatment that is consistent with the patient values and preferences.
PMCID: PMC3349002  PMID: 22153756
prostate cancer; randomized trial; Internet; decision making; decisional conflict
3.  Decision preparation, satisfaction and regret in a multi-center sample of men with newly diagnosed localized prostate cancer 
Patient education and counseling  2012;88(2):262-267.
To describe relationships between use of the Personal Patient Profile-Prostate (P3P) decision support system and patient characteristics, and perceived preparation for decision making (PrepDM), satisfaction and decisional regret in the context of prostate cancer treatment choice.
494 men with localized prostate cancer (LPC) were randomized to receive the P3P intervention or usual care and completed pre-treatment, 1-month and 6-month outcome measures. Multivariable linear regression models were fit for each outcome.
Physician consult visits prior to enrollment, race/ethnicity, and use of clinic-provided books were significant predictors of perceived PrepDM at 1-month. Prior Internet use and PrepDM significantly predicted 6-month decision satisfaction. Decisional regret was significantly predicted by demographics, anxiety, PrepDM score, and EPIC bowel domain score at 6-months. Use of P3P did not predict any outcome.
Practice Implications
Information received and used between biopsy and the treatment options consult visit is likely to make a difference in decision satisfaction.
While the P3P intervention did not significantly affect the outcomes, pre-enrollment information and preparation were strong predictors of the 1 and 6-months outcomes. Decision regret was significantly influenced by personal characteristics and post-treatment symptoms/side effects.
PMCID: PMC3409298  PMID: 22608696
prostate cancer; randomized trial; Internet; decision making
4.  Patient-reported Symptoms and Quality of Life Integrated into Clinical Cancer Care 
Seminars in oncology nursing  2011;27(3):203-210.
To provide an overview of research and practice related to patient-reported symptom and quality of life assessment integrated into clinical care.
Data sources
Literature retrieved through the PUBMED and CINAHL databases.
Assessing and incorporating patient preferences, engaging the patient in self-report and extending the interaction to the place and time favored by the patient are necessary to bring meaning to the term, patient-centered. There is beginning evidence that these approaches can make a difference, improving care quality.
Implications for nursing practice
Oncology nurses no longer need to be constrained by paper symptom checklists. Patient-reported symptom and quality of life information can be electronically collected and simultaneously made available for home and clinical use through the utilization of Web-based programs.
PMCID: PMC3143403  PMID: 21783011
cancer symptoms; quality of life; patient centered care; clinical informatics; patient reported outcomes
5.  Enhancing Patient-Provider Communication With the Electronic Self-Report Assessment for Cancer: A Randomized Trial 
Journal of Clinical Oncology  2011;29(8):1029-1035.
Although patient-reported cancer symptoms and quality-of-life issues (SQLIs) have been promoted as essential to a comprehensive assessment, efficient and efficacious methods have not been widely tested in clinical settings. The purpose of this trial was to determine the effect of the Electronic Self-Report Assessment–Cancer (ESRA-C) on the likelihood of SQLIs discussed between clinicians and patients with cancer in ambulatory clinic visits. Secondary objectives included comparison of visit duration between groups and usefulness of the ESRA-C as reported by clinicians.
Patients and Methods
This randomized controlled trial was conducted in 660 patients with various cancer diagnoses and stages at two institutions of a comprehensive cancer center. Patient-reported SQLIs were automatically displayed on a graphical summary and provided to the clinical team before an on-treatment visit (n = 327); in the control group, no summary was provided (n = 333). SQLIs were scored for level of severity or distress. One on-treatment clinic visit was audio recorded for each participant and then scored for discussion of each SQLI. We hypothesized that problematic SQLIs would be discussed more often when the intervention was delivered to the clinicians.
The likelihood of SQLIs being discussed differed by randomized group and depended on whether an SQLI was first reported as problematic (P = .032). Clinic visits were similar with regard to duration between groups, and clinicians reported the summary as useful.
The ESRA-C is the first electronic self-report application to increase discussion of SQLIs in a US randomized clinical trial.
PMCID: PMC3068053  PMID: 21282548
6.  Development and Evaluation of the Personal Patient Profile-Prostate (P3P), a Web-Based Decision Support System for Men Newly Diagnosed With Localized Prostate Cancer 
Given that no other disease with the high incidence of localized prostate cancer (LPC) has so many treatments with so few certainties related to outcomes, many men are faced with assuming some responsibility for the treatment decision along with guidance from clinicians. Men strongly consider their own personal characteristics and other personal factors as important and influential to the decision. Clinical researchers have not developed or comprehensively investigated interventions to facilitate the insight and prioritizing of personal factors along with medical factors that are required of a man in preparation for the treatment decision.
The purpose of this pilot study was to develop and evaluate the feasibility and usability of a Web-based decision support technology, the Personal Patient Profile-Prostate (P3P), in men newly diagnosed with LPC.
Use cases were developed followed by infrastructure and content application. The program was provided on a personal desktop computer with a touch screen monitor. Participant responses to the query component of P3P determined the content of the multimedia educational and coaching intervention. The intervention was tailored to race, age, and personal factors reported as influencing the decision. Prepilot usability testing was conducted using a “think aloud” interview to identify navigation and content challenges. These issues were addressed prior to deployment in the clinic. A clinical pilot was conducted in an academic medical center where men sought consultation and treatment for LPC. Completion time, missing data, and acceptability were measured.
Prepilot testing included 4 men with a past diagnosis of LPC who had completed therapy. Technical navigation issues were documented along with confusing content language. A total of 30 additional men with a recent diagnosis of LPC completed the P3P program in clinic prior to consulting with a urologist regarding treatment options. In a mean time of 46 minutes (SD 13 minutes), participants completed the P3P query and intervention components. Of a possible 4560 items for 30 participants, 22 (0.5%) were missing. Acceptability was reported as high overall. The sections of the intervention reported as most useful were the statistics graphs, priority information topics, and annotated external website links.
The P3P intervention is a feasible and usable program to facilitate treatment decision making by men with newly diagnosed LPC. Testing in a multisite randomized trial with a diverse sample is warranted.
PMCID: PMC3056527  PMID: 21169159
Prostate cancer; decision making; computer-assisted; pilot study
7.  Usability evaluation and adaptation of the e-health Personal Patient Profile-Prostate decision aid for Spanish-speaking Latino men 
The Personal Patient Profile-Prostate (P3P), a web-based decision aid, was demonstrated to reduce decisional conflict in English-speaking men with localized prostate cancer early after initial diagnosis. The purpose of this study was to explore and enhance usability and cultural appropriateness of a Spanish P3P by Latino men with a diagnosis of prostate cancer.
P3P was translated to Spanish and back-translated by three native Spanish-speaking translators working independently. Spanish-speaking Latino men with a diagnosis of localized prostate cancer, who had made treatment decisions in the past 24 months, were recruited from two urban clinical care sites. Individual cognitive interviews were conducted by two bilingual research assistants as each participant used the Spanish P3P. Notes of user behavior, feedback, and answers to direct questions about comprehension, usability and perceived usefulness were analyzed and categorized.
Seven participants with a range of education levels identified 25 unique usability issues in navigation, content comprehension and completeness, sociocultural appropriateness, and methodology. Revisions were prioritized to refine the usability and cultural and linguistic appropriateness of the decision aid.
Usability issues were discovered that are potential barriers to effective decision support. Successful use of decision aids requires adaptation and testing beyond translation. Our findings led to revisions further refining the usability and linguistic and cultural appropriateness of Spanish P3P.
PMCID: PMC4513952  PMID: 26204920
Usability; Adaptation; Spanish; Localized prostate cancer; Disparities; Decision aid
8.  Risk Factors for Depression in Patients Undergoing Hematopoietic Cell Transplantation 
Despite the prevalence and known adverse impacts of depression after hematopoietic cell transplantation (HCT), little is known about the trajectory of depression following HCT, or which pre-transplant risk factors might help predict new or worsening depression post-HCT. This secondary analysis was conducted to evaluate the relationships between pre-transplant patient-reported outcomes and demographic characteristics and post-transplant depression. 228 adult HCT patients were evaluated pre-transplant (T1) and 6 to 7 weeks post-transplant (T2), using touch-screen computers in the transplant clinic during participation in a larger trial. Measures included the Symptom Distress Scale, the EORTC QLQ-C30 for quality of life, a single-item Pain Intensity question, and the PHQ-9 for measurement of depression. At T1, rates of depression were quite low with only 6% of participants endorsing moderate or higher depression. At T2, however, 31% had moderate or higher depression. We observed a strong linear relation in PHQ-9 scores between T1 and T2 (p<.0001). T1 depression score was a significant predictor of depression scores at T2 (p=.03), as was poorer emotional function at T1 (p<.01). Results indicate that depression is common post-HCT, even for patients with low depression pre-transplant. Frequent screening for depressive symptoms at critical time points, including 6–7 weeks post-HCT, are needed in this population, followed by referrals to supportive care as appropriate.
PMCID: PMC4057950  PMID: 24650679
9.  Older Adults Newly Diagnosed with Symptomatic Myeloma Want to Participate in Treatment Decision Making 
Oncology nursing forum  2014;41(4):411-419.
The purpose of the study was to describe the preferences for participation in decision making of older patients newly diagnosed with symptomatic myeloma and to explore the association between sociodemographic variables and decisional role preferences.
Descriptive, cross sectional design
Subjects’ homes and two large academic cancer centers.
The convenience sample consisted of 20 older adults (60 years of age and above) with symptomatic myeloma diagnosed within the past 6 months.
The Control Preferences Scale was administered followed by an in-person one-time semi-structured interview.
Main Research Variables
Role preferences for participation in treatment decision-making, age, gender, race, work status, personal relationship status, education, and income.
55% (n=11) of the subjects had preferred a shared role with the physician and 40% (n=8) had preferred to make the decisions after seriously considering the opinion of their physicians. Only one subject preferred to leave the decision to the doctor as long as the doctor considered the patient’s treatment preferences. Sociodemographic characteristics had no impact on preferences for participation in treatment decision-making.
The study findings indicate that older adults newly diagnosed with myeloma wanted to participate during treatment decision-making. Oncology nurses must respect the patient's desired role preference and oncology clinicians must listen to the patient and allow them to be autonomous in making treatment decisions if the patient so desire such control in the decision-making process. A culture of equipoise between the patient and the clinician during TDM must be cultivated in order to achieve the patient's desired level of participation. More studies that focus on supporting and involving patients diagnosed with myeloma in the decision-making process are needed in order to influence clinical practice and policy.
Practice Implications
Nurses and other oncology clinicians can elicit patient’s preferred level of participation in treatment decision-making. Oncology nurses can do the following nursing actions: make sure patients receive disease and treatment-related information; encourage patients to express their decisional role preference to the physician; develop a culture of mutual respect and value the patient's desire for autonomy for treatment decision making; acknowledge that the right to make a treatment choice belongs to the patient; 5) provide psychological support to the patient during treatment decision making throughout the care continuum.
PMCID: PMC4074776  PMID: 24969250
Decision making; decisional role preferences; patient education; multiple myeloma
10.  Patient and Clinician Communication Of Self-Reported Insomnia During Ambulatory Cancer Care Clinic Visits 
Cancer nursing  2014;37(2):E51-E59.
Insomnia, the most commonly reported sleep wake disturbance in people with cancer, has an adverse affect on quality of life including emotional well being, distress associated with other symptoms, daily functioning, relationships and ability to work.
The aim of this study was to describe the content of discussions between clinicians and 120 patients with self-reported insomnia and to examine the associations of socio-demographic, clinical and environmental factors with insomnia.
A secondary analysis was conducted with self reported symptom data, socio- demographic, clinical and environmental factors. Recordings of clinician and patient discussions during clinic visits were examined by conducting a content analysis.
Severe insomnia was more likely to be reported by women, minority and lower income individuals. Seven major topics were identified in the discussions. The clinicians did not always discuss insomnia; discussion rates differed by diagnosis and clinical service.
Reporting of insomnia by the patient and clinician communication about insomnia may have differed by demographic and clinical characteristics. Clinicians attended to insomnia about half the time with management strategies likely to be effective. Explanations may be that insomnia had a low clinician priority for the clinic visit or lack of clear evidence to support insomnia interventions.
Implications for Practice
A better understanding is needed about why insomnia is not addressed even when reported by patients; it is well known that structured assessments and early interventions can improve quality of life. Research is warranted to better understand potential disparities in cancer care.
PMCID: PMC3696527  PMID: 23448958
11.  Information Needs Priorities in Patients Diagnosed With Cancer: A Systematic Review 
Information-sharing is an integral part of cancer care. Several studies have examined the information needs of patients with various types of cancer. However, the priorities of information needs among patients with cancer have not been reported. A systematic review was performed to identify published studies that examined priorities of information needs in patients with cancer. PubMed (1966 to February 2012), PsycINFO (1967 to February 2012), and CINAHL (1982 to February 2012) databases were searched to access relevant medical, psychological, and nursing literature. Thirty studies involving patients with breast, prostate, lung, colorectal, gynecologic, hematologic, and other cancers revealed patients’ information needs priorities. The top three patient information priorities were related to prognosis, diagnosis, and treatment options. The top information priorities reported in this systematic review could serve as a start to elicit patients’ information needs and guide patient education across the cancer care continuum. Being able to prioritize the most-needed information can make patient encounters more meaningful and useful.
PMCID: PMC4042668  PMID: 24910808
12.  Patient, Physician and Contextual Factors Are Influential in the Treatment Decision Making of Older Adults Newly Diagnosed with Symptomatic Myeloma 
Cancer treatment communications  2014;2(2-3):34-47.
To examine patient perspectives on their personal and contextual factors relevant to TDM. The second aim was to describe physician perspectives on the TDM in older adults (≥60 y.o.) diagnosed with symptomatic MM.
Study Design
Descriptive, cross-sectional
A semi-structured interview schedule was administered. Directed content analysis procedures were used to develop major themes from the patient and physician participant interviews.
Themes related to treatment decision making among patient participants include various decisional role preferences; several sources of information related to myeloma; contextual and patient-specific factors influence treatment decisions; negative perceptions related to the treatment decision-making process exist; strong desire to be in remission and to live a longer life; For physician participants, top themes related to decision making were: QOL or survival considerations or simultaneously considerations of treatment effectiveness, QOL and survival; screening patients for eligibility for autologous HSCT; time is a barrier to effective TDM; Various methods were used to assess patient decisional role preferences.
Treatment decision making in older adults newly diagnosed with symptomatic myeloma is influenced by personal, social and contextual factors. Patients must be given the opportunity to choose the best possible treatment within the limits of the patient's personal, social and medical contexts.
PMCID: PMC4278366  PMID: 25553273
Multiple Myeloma; Older adults; Treatment decision making; Decision making factors; Patient education
13.  Creating Computable Algorithms for Symptom Management in an Outpatient Thoracic Oncology Setting 
Journal of pain and symptom management  2013;46(6):911-924.e1.
Adequate symptom management is essential to ensure quality cancer care, but symptom management is not always evidence based. Adapting and automating national guidelines for use at the point of care may enhance use by clinicians.
This article reports on a process of adapting research evidence for use in a clinical decision support system that provided individualized symptom management recommendations to clinicians at the point of care.
Using a modified ADAPTE process, panels of local experts adapted national guidelines and integrated research evidence to create computable algorithms with explicit recommendations for management of the most common symptoms (pain, fatigue, dyspnea, depression, and anxiety) associated with lung cancer.
Small multidisciplinary groups and a consensus panel, using a nominal group technique, modified and subsequently approved computable algorithms for fatigue, dyspnea, moderate pain, severe pain, depression, and anxiety. The approved algorithms represented the consensus of multidisciplinary clinicians on pharmacological and behavioral interventions tailored to the patient’s age, comorbidities, laboratory values, current medications, and patient-reported symptom severity. Algorithms also were reconciled with one another to enable simultaneous management of several symptoms.
A modified ADAPTE process and nominal group technique enabled the development and approval of locally adapted computable algorithms for individualized symptom management in patients with lung cancer. The process was more complex and required more time and resources than initially anticipated, but it resulted in computable algorithms that represented the consensus of many experts.
PMCID: PMC4096777  PMID: 23680580
Lung cancer and symptom management algorithms; decision making; decision support systems; guideline implementation; consensus methods
14.  When study site contributes to outcomes in a multi-center randomized trial: a secondary analysis of decisional conflict in men with localized prostate cancer 
Evaluate baseline factors that may explain the influence of study site on decisional conflict (DC) in men from the Personal Patient Profile: Prostate (P3P) randomized trial.
Materials and methods
476 cases from 5 P3P sites were included. Participants completed baseline demographic assessments, 4 subscales of the DC scale at baseline (uncertainty, informed, values clarity, and support), the Expanded Prostate Cancer Index Composite (short form) and the State-Trait Anxiety Inventory. Site data regarding typical practices were collected. Linear regressions were used to model the relation between baseline DC scores and study site adjusting for the list of variables.
Baseline decisional uncertainly (p = 0.001) and informed (p = 0.03) subscales were significantly different across sites. Participant demographic and baseline measures were significantly different (p < 0.05) between sites except for trait anxiety. We identified participant level factors that explained study site differences at baseline for the decisional uncertainty and values clarity subscales: a preferred treatment choice at study entry, whether the study program was accessed at home vs. in clinic, number of doctors consulted pre-study, working status, state anxiety, information from the media or a health care provider, and perceived knowledge level. State anxiety was associated with higher DC across all subscales.
Individual characteristics of men seeking consultation for LPC were associated with DC at baseline, not the site alone; anxiety contributed to higher conflict. These findings will inform future development and implementation of the P3P and other decision support interventions.
Trial registration
PMCID: PMC4213457  PMID: 25344101
Localized prostate cancer; Decisional conflict; Decision-making
15.  The electronic self report assessment and intervention for cancer: promoting patient verbal reporting of symptom and quality of life issues in a randomized controlled trial 
BMC Cancer  2014;14:513.
The electronic self report assessment - cancer (ESRA-C), has been shown to reduce symptom distress during cancer therapy The purpose of this analysis was to evaluate aspects of how the ESRA-C intervention may have resulted in lower symptom distress (SD).
Patients at two cancer centers were randomized to ESRA-C assessment only (control) or the Web-based ESRA-C intervention delivered to patients’ homes or to a tablet in clinic. The intervention allowed patients to self-monitor symptom and quality of life (SxQOL) between visits, receive self-care education and coaching to report SxQOL to clinicians. Summaries of assessments were delivered to clinicians in both groups. Audio-recordings of clinic visits made 6 weeks after treatment initiation were coded for discussions of 26 SxQOL issues, focusing on patients’/caregivers’ coached verbal reports of SxQOL severity, pattern, alleviating/aggravating factors and requests for help. Among issues identified as problematic, two measures were defined for each patient: the percent SxQOL reported that included a coached statement, and an index of verbalized coached statements per SxQOL. The Wilcoxon rank test was used to compare measures between groups. Clinician responses to problematic SxQOL were compared. A mediation analysis was conducted, exploring the effect of verbal reports on SD outcomes.
517 (256 intervention) clinic visits were audio-recorded. General discussion of problematic SxQOL was similar in both groups. Control group patients reported a median 75% of problematic SxQOL using any specific coached statement compared to a median 85% in the intervention group (p = .0009). The median report index of coached statements was 0.25 for the control group and 0.31 for the intervention group (p = 0.008). Fatigue, pain and physical function issues were reported significantly more often in the intervention group (all p < .05). Clinicians' verbalized responses did not differ between groups. Patients' verbal reports did not mediate final SD outcomes (p = .41).
Adding electronically-delivered, self-care instructions and communication coaching to ESRA-C promoted specific patient descriptions of problematic SxQOL issues compared with ESRA-C assessment alone. However, clinician verbal responses were no different and subsequent symptom distress group differences were not mediated by the patients' reports.
Trial registration
NCT00852852; 26 Feb 2009
PMCID: PMC4226951  PMID: 25014995
Patient-provider communication; Cancer; Symptoms; Coaching; Internet
16.  Evaluating the Linguistic Appropriateness and Cultural Sensitivity of a Self-Report System for Spanish-Speaking Patients with Cancer 
Nursing Research and Practice  2014;2014:702683.
Spanish speakers in the United States encounter numerous communication barriers during cancer treatment. Communication-focused interventions may help Spanish speakers communicate better with healthcare providers and manage symptoms and quality of life issues (SQOL). For this study, we developed a Spanish version of the electronic self-report assessment for cancer (ESRA-C), a web-based program that helps people with cancer report, track, and manage cancer-related SQOL. Four methods were used to evaluate the Spanish version. Focus groups and cognitive interviews were conducted with 51 Spanish-speaking individuals to elicit feedback. Readability was assessed using the Fry readability formula. The cultural sensitivity assessment tool was applied by three bilingual, bicultural reviewers. Revisions were made to personalize the introduction using a patient story and photos and to simplify language. Focus group participants endorsed changes to the program in a second round of focus groups. Cultural sensitivity of the program was scored unacceptable (x¯=3.0) for audiovisual material and acceptable (x¯=3.0) for written material. Fry reading levels ranged from 4th to 10th grade. Findings from this study provide several next steps to refine ESRA-C for Spanish speakers with cancer.
PMCID: PMC4089943  PMID: 25045535
17.  Information Needs Priorities in Patients Diagnosed With Cancer: A Systematic Review 
Information-sharing is an integral part of cancer care. Several studies have examined the information needs of patients with various types of cancer. However, the priorities of information needs among patients with cancer have not been reported. A systematic review was performed to identify published studies that examined priorities of information needs in patients with cancer. PubMed (1966 to February 2012), PsycINFO (1967 to February 2012), and CINAHL (1982 to February 2012) databases were searched to access relevant medical, psychological, and nursing literature. Thirty studies involving patients with breast, prostate, lung, colorectal, gynecologic, hematologic, and other cancers revealed patients’ information needs priorities. The top three patient information priorities were related to prognosis, diagnosis, and treatment options. The top information priorities reported in this systematic review could serve as a start to elicit patients’ information needs and guide patient education across the cancer care continuum. Being able to prioritize the most-needed information can make patient encounters more meaningful and useful.
PMCID: PMC4042668  PMID: 24910808
18.  Intermittent versus Continuous Androgen Deprivation in Prostate Cancer 
The New England journal of medicine  2013;368(14):1314-1325.
Castration resistance occurs in most patients with metastatic hormone-sensitive prostate cancer who are receiving androgen-deprivation therapy. Replacing androgens before progression of the disease is hypothesized to prolong androgen dependence.
Men with newly diagnosed, metastatic, hormone-sensitive prostate cancer, a performance status of 0 to 2, and a prostate-specific antigen (PSA) level of 5 ng per milliliter or higher received a luteinizing hormone–releasing hormone analogue and an antiandrogen agent for 7 months. We then randomly assigned patients in whom the PSA level fell to 4 ng per milliliter or lower to continuous or intermittent androgen deprivation, with patients stratified according to prior or no prior hormonal therapy, performance status, and extent of disease (minimal or extensive). The coprimary objectives were to assess whether intermittent therapy was noninferior to continuous therapy with respect to survival, with a one-sided test with an upper boundary of the hazard ratio of 1.20, and whether quality of life differed between the groups 3 months after randomization.
A total of 3040 patients were enrolled, of whom 1535 were included in the analysis: 765 randomly assigned to continuous androgen deprivation and 770 assigned to intermittent androgen deprivation. The median follow-up period was 9.8 years. Median survival was 5.8 years in the continuous-therapy group and 5.1 years in the intermittent-therapy group (hazard ratio for death with intermittent therapy, 1.10; 90% confidence interval, 0.99 to 1.23). Intermittent therapy was associated with better erectile function and mental health (P<0.001 and P = 0.003, respectively) at month 3 but not thereafter. There were no significant differences between the groups in the number of treatment-related high-grade adverse events.
Our findings were statistically inconclusive. In patients with metastatic hormone-sensitive prostate cancer, the confidence interval for survival exceeded the upper boundary for noninferiority, suggesting that we cannot rule out a 20% greater risk of death with intermittent therapy than with continuous therapy, but too few events occurred to rule out significant inferiority of intermittent therapy. Intermittent therapy resulted in small improvements in quality of life. (Funded by the National Cancer Institute and others; number, NCT00002651.)
PMCID: PMC3682658  PMID: 23550669
19.  Incidence of severe pain in newly diagnosed ambulatory patients with stage IV cancer 
Pain is common among cancer patients.
To characterize the incidence of severe pain among newly diagnosed patients with stage IV cancer in ambulatory care.
A retrospective cohort of 505 ambulatory oncology patients with newly diagnosed stage IV solid tumours at a comprehensive cancer centre (Dana-Farber Cancer Institute, Boston, Massachusetts, USA) was followed from January 1, 2004, to December 31, 2006. Pain intensity scores were extracted from electronic medical records. The incidence of severe pain was calculated using the maximum monthly pain scores reported at outpatient visits.
Of the 505 patients included in the present study, 340 (67.3%) were pain-free at the initial visit, 90 (17.8%) experienced mild pain, 48 (9.5%) experienced moderate pain and 27 (5.4%) experienced severe pain. At least one episode of severe pain within one year of diagnosis was reported by 29.1% of patients. Patients with head and neck, gastrointestinal and thoracic malignancies were more likely to experience severe pain compared with patients with other types of cancer (52.6%, 33.9% and 30.5%, respectively). In the multivariable model, patients whose primary language was not English (OR 2.90 [95% CI 1.08 to 7.80]), patients who reported severe pain at the initial visit (OR 9.30 [95% CI 3.72 to 23.23]) and patients with head and neck (OR 10.17 [95% CI 2.87 to 36.00]) or gastrointestinal (OR 4.05 [95% CI 1.23 to 13.35]) cancers were more likely to report severe pain in the following year.
The incidence of severe pain was high in ambulatory patients with newly diagnosed stage IV cancer.
PMCID: PMC3465096  PMID: 23061086
Cancer; Electronic health record; Epidemiology; Incidence; Pain intensity; Palliative care; Risk factors
21.  Patient self-appraisal of change and minimal clinically important difference on the European organization for the research and treatment of cancer quality of life questionnaire core 30 before and during cancer therapy 
BMC Cancer  2013;13:165.
Clinical interpretation of health related quality of life (HRQOL) scores is challenging. The purpose of this analysis was to interpret score changes and identify minimal clinically important differences (MCID) on the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire-Core 30 (QLQ-C30) before (T1) and during (T2) cancer treatment.
Patients (N = 627) in stem cell transplant (SCT) and medical (MED) or radiation (RAD) oncology at two comprehensive cancer centers, enrolled in the Electronic Self-Report Assessment-Cancer study and completed the QLQ-C30 at T1 and T2. Perceived changes in five QOL domains, physical (PF), emotional (EF), social (SF), cognitive functioning (CF) and global quality of life (QOL), were reported using the Subject Significance Questionnaire (SSQ) at T2. Anchored on SSQ ratings indicating “improvement”, “the same”, or “deterioration”, means and effect sizes were calculated for QLQ-C30 score changes. MCID was calculated as the mean difference in QLQ-C30 score changes reflecting one category change on SSQ rating, using a two-piece linear regression model.
A majority of SCT patients (54%) perceived deteriorating global HRQOL versus improvement (17%), while approximately equal proportions of MED/RAD patients perceived improvement (25%) and deterioration (26%). Global QOL decreased 14.2 (SCT) and 2.0 (MED/RAD) units, respectively, among patients reporting “the same” in the SSQ. The MCID ranged 5.7-11.4 (SCT) and 7.2-11.8 (MED/RAD) units among patients reporting deteriorated HRQOL; ranged 2.7-3.4 units among MED/RAD patients reporting improvement. Excepting for the global QOL (MCID =6.9), no meaningful MCID was identified among SCT patients reporting improvement.
Cancer treatment has greater impact on HRQOL among SCT patients than MED/RAD patients. The MCID for QLQ-C30 score change differed across domains, and differed for perceived improvement and deterioration, suggesting different standards for self-evaluating changes in HRQOL during cancer treatment. Specifically, clinical attention can be focused on patients who report at least a 6 point decrease, and for patients who report at least a 3 point increase on QLQ-C30 domains.
Trial registration
The trial was registered with NCT00852852
PMCID: PMC3637270  PMID: 23537330
Cancer treatment; Health related quality of life; Quality of life questionnaire-core; Subject significance questionnaire; Minimal clinically important differences
22.  Concerns of stem cell transplant patients during routine ambulatory assessment 
Stem cell transplant (SCT) is a treatment choice for many hematological malignancies. There is currently a lack of evidence regarding the self-reported concerns of SCT patients before and after SCT.
Aim and design
This exploratory study performed a secondary analysis of self-reported, written concerns of SCT patients before and after transplant to determine patients’ concerns.
Content analysis of text box entries of SCT patients collected between 2005 and 2007 at the Seattle Cancer Care Alliance. Text box entries were collected as part of symptom assessment using the Electronic Self-Report Assessment – Cancer instrument. The assessment was presented to 137 patients undergoing SCT at two time points: prior to ambulatory visits before any therapy had begun (T1) and at the first visit after hospital discharge following SCT (T2).
Text box entries were made before (n = 52) and after (n = 87) the transplant, resulting in 139 text box entries made by 137 patients representing 133 concerns. Using content analysis, the entries were categorized and ranked according to frequency. After symptom concerns, patients ranked work and financial issues the most frequent concerns prior to SCT. After SCT, symptoms remained the most frequently entered area of concern, followed by survival.
Oncology providers need to assess SCT patients for work and financial concerns before and after transplant. Appropriate and timely referrals may ease the burden of these concerns for patients. Thus, assessment of financial and work concerns by the oncology team should be an integral part of quality health care for patients undergoing SCT.
PMCID: PMC3540958  PMID: 23319854
self-report; electronic self-report assessment - cancer; cancer; patient concerns
23.  “It’s not like I can change my mind later”: Reversibility and decision timing in prostate cancer treatment decision-making 
Patient education and counseling  2009;77(2):302-307.
To explore whether reversibility, decision timing, and uncertainty are relevant to men deciding on treatment for localized prostate cancer (LPC).
Secondary qualitative data analysis of unstructured interviews.
Content analysis of previously collected qualitative data (31 individual interviews, 5 focus groups). We identified the frequency of references to reversibility, decision timing, and uncertainty and related subthemes.
We identified eight themes: reversibility, timing of decision, number of options, “getting it over with,” “the way I make decisions,” uncertainty among experts, desire for certainty, and probability. Fifteen men mentioned reversibility in individual interviews; 13 mentioned the importance of the timing of their decision. Eleven mentioned the importance of the number of options; twelve “the way I make decisions.” Eleven men mentioned the uncertainty of experts, fourteen the desire to “get it over with,” and six a desire for certainty.
This study provides compelling preliminary data suggesting that men consider the reversibility, decision timing, and uncertainty in the prostate cancer treatment decision.
These findings may be helpful in enhancing support for men facing the treatment decision.
PMCID: PMC3509197  PMID: 19386460
prostate cancer; decision-making; reversibility; qualitative research
24.  Phase III Trial of Selenium to Prevent Prostate Cancer in Men with High-Grade Prostatic Intraepithelial Neoplasia: SWOG S9917 
The threat of prostate cancer (PC) and the significant and often negative impact of its treatment underscore the importance of prevention. High-grade prostatic intraepithelial neoplasia (HGPIN) has been identified as a potential premalignant lesion marking an increased risk of PC, and substantial evidence suggests that men with HGPIN are in need of PC prevention. In vitro, in vivo, epidemiologic, and clinical trial evidence that selenium supplementation protects against PC motivated the study we report here: A double-blind, randomized, placebo-controlled trial of selenium 200 (mcg/day) as selenomethionine in men with HGPIN. The primary endpoint was progression of HGPIN to PC over a three-year period. This NCI Intergroup trial was coordinated by the Southwest Oncology Group (SWOG). Of 619 enrolled patients, 423 randomized men with HGPIN (212, selenium; 211, placebo) were eligible (by central pathology review) and included in the primary analysis. Three-year cancer rates were 36.6% (placebo) versus 35.6% (selenium; P = 0.73, adjusted). The majority of patients who developed cancer on trial (70.8%, selenium, and 75.5%, placebo) had a Gleason score of ≤ 6; there were no differences in Gleason scores between the two arms. Subset analyses included the finding of a nonsignificantly reduced PC risk (relative risk = 0.82; 95% confidence interval, 0.40–1.69) in selenium versus placebo patients in the lowest quartile of baseline plasma selenium level (< 106 ng/ml). Overall, and in all other subsets defined by baseline blood selenium levels, selenium supplementation had no effect on PC risk. The 36% PC rate in men with HGPIN indicates the association of this lesion with an elevated PC risk. Future study in this setting should focus on selenium-deficient populations and selenium pharmacogenetics.
PMCID: PMC3208719  PMID: 21896650
Chemoprevention; selenium; prostate cancer; intraepithelial neoplasia; prevention; clinical trials
25.  Measuring decisional control preferences in men newly diagnosed with prostate cancer 
Journal of Psychosocial Oncology  2011;29(6):606-618.
The Control Preferences Scale is widely used in decision research to measure patient preferences for participation in treatment decision making with health care providers. Following anecdotal reports of confusion with the scale we conducted an exploratory interview study to examine perceptions of the meaning and applicability of the Control Preferences Scale for men with localized prostate cancer seeking treatment in a multidisciplinary urology clinic. Our preliminary data suggest potential validity challenges when the CPS is used in a multidisciplinary prostate cancer care setting, including the clinical context of localized prostate cancer and the meaning of shared decision making.
PMCID: PMC3285491  PMID: 22035534
prostate cancer; qualitative; measurement; multidisciplinary care; measurement interview

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