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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.  Exposure to a Patient-Centered, Web-Based Intervention for Managing Cancer Symptom and Quality of Life Issues: Impact on Symptom Distress 
Effective eHealth interventions can benefit a large number of patients with content intended to support self-care and management of both chronic and acute conditions. Even though usage statistics are easily logged in most eHealth interventions, usage or exposure has rarely been reported in trials, let alone studied in relationship to effectiveness.
The intent of the study was to evaluate use of a fully automated, Web-based program, the Electronic Self Report Assessment-Cancer (ESRA-C), and how delivery and total use of the intervention may have affected cancer symptom distress.
Patients at two cancer centers used ESRA-C to self-report symptom and quality of life (SxQOL) issues during therapy. Participants were randomized to ESRA-C assessment only (control) or the ESRA-C intervention delivered via the Internet to patients’ homes or to a tablet at the clinic. The intervention enabled participants to self-monitor SxQOL and receive self-care education and customized coaching on how to report concerns to clinicians. Overall and voluntary intervention use were defined as having ≥2 exposures, and one non-prompted exposure to the intervention, respectively. Factors associated with intervention use were explored with Fisher’s exact test. Propensity score matching was used to select a sample of control participants similar to intervention participants who used the intervention. Analysis of covariance (ANCOVA) was used to compare change in Symptom Distress Scale (SDS-15) scores from pre-treatment to end-of-study by groups in the matched sample.
Radiation oncology participants used the intervention, overall and voluntarily, more than medical oncology and transplant participants. Participants who were working and had more than a high school education voluntarily used the intervention more. The SDS-15 score was reduced by an estimated 1.53 points (P=.01) in the intervention group users compared to the matched control group.
The intended effects of a Web-based, patient-centered intervention on cancer symptom distress were modified by intervention use frequency. Clinical and personal demographics influenced voluntary use.
Trial Registration NCT00852852; (Archived by WebCite at
PMCID: PMC4526904  PMID: 26041682
patient-centered technology; cancer; symptoms; quality of life; eHealth; Internet
3.  Self-reported adherence to oral cancer therapy: relationships with symptom distress, depression, and personal characteristics 
Therapeutic cancer chemotherapy is most successful when complete dosing is achieved. Because many newer therapeutic agents are oral and self-administered by the patient, adherence is a concern. The purpose of our analysis was to explore relationships between adherence, patient characteristics, and barriers to adherence.
This secondary analysis utilized self-reported data from a randomized trial of self-care management conducted at two cancer centers in the US. Symptom distress was measured using the 15-item Symptom Distress Scale (SDS-15) and depression with the Patient Health Questionnaire-9 (PHQ-9). Adherence to oral medication was self-reported using the 8-item Morisky Medication Adherence Scale (MMAS-8). Measures were collected via Web-based, study-specific software ~8 weeks after treatment start date. Odds of low/medium adherence (score <8) were explored using univariate logistic regression. Given the number of factors and possible relationships among factors, a classification tree was built in lieu of a multivariable logistic regression model.
Of the eligible participants enrolled, 77 were on oral therapy and 70 had an MMAS score. Forty-nine (70%) reported a high adherence score (=8). Higher odds of low/medium adherence were associated with greater symptom distress (P=0.09), more depression (P=0.05), chemotherapy vs hormonal oral medication (P=0.03), being female (P=0.02), and being randomized to the control group in the parent trial (P=0.09). Conversely, high adherence was associated with working (P=0.08), being married/partnered (P=0.004), and being older (P=0.02). Factors identified as significantly related to low/medium adherence from the univariate logistic regression analyses were supported by the classification tree results.
Nonadherence to therapeutic oral medications in patients with cancer was associated with being unmarried/unpartnered, symptom distress, younger age, not working, and female sex. These findings may help to identify patients at risk for nonadherence and for whom supportive interventions to enhance adherence may be needed.
PMCID: PMC4639537  PMID: 26604712
patient-centered technology; self-management; logistic regression; recursive partitioning
4.  Symptom-related emergency department visits and hospital admissions during ambulatory cancer treatment 
People with cancer experience symptoms related to the disease and treatments. Symptom distress has a negative impact on quality of life (QoL). Attending to symptoms and side effects of treatment promotes safe and effective delivery of therapies and may prevent or reduce emergency department visits (EDVs) and unplanned hospital admissions (HAs). There is limited evidence examining symptom-related EDVs or HAs (sx-EDV/HAs) and interventions in ambulatory oncology patients.
To examine factors associated with sx-EDV/HAs in ambulatory oncology patients receiving chemotherapy and/or radiation.
This secondary analysis used data from a randomized controlled trial of ambulatory oncology patients (n = 663) who received the web-based Electronic Self-Report Assessment - Cancer intervention (symptom self-monitoring, tailored education, and communication coaching) or usual care with symptom self-monitoring alone. Group differences were described by summary statistics and compared by t test. Factors associated with the odds of at least 1 sx-EDV/HA were modeled using logistic regression.
98 patients had a total of 171 sx-EDV/HAs with no difference between groups. Higher odds of at least 1 sx-EDV/HA were associated with socioeconomic and clinical factors. The multivariable model indicated that work status, education level, treatment modality, and on-treatment Symptom Distress Scale-15 scores were significantly associated with having at least 1 sx-EDV/HA.
This is a secondary analysis not sized to determine cause and effect. The results have limited generalizability.
Most patients did not experience an sx-EDV/HA. Demographic and clinical factors predicted an sx-EDV/HA.
National Institute of Nursing Research, National Institutes of Health, R01 NR008726; 2008–2011
PMCID: PMC4849131  PMID: 27119127
5.  Top Information Need Priorities of Older Adults Newly Diagnosed With Active Myeloma 
Prioritizing patients’ information needs maximizes efficiency. This study examined the information sources and priorities in a sample of older adults newly diagnosed with symptomatic myeloma requiring immediate therapy. An association analysis of whether information needs were influenced by sociodemographic variables such as age, gender, education, marital status, and income was also conducted. The Information Needs Questionnaire (INQ) and an investigator-developed interview schedule were administered to 20 older adults diagnosed with symptomatic myeloma during a 30- to 45-minute semistructured interview. We found that older adults newly diagnosed with symptomatic myeloma have different priorities of information needs when compared with younger patients diagnosed with various types of cancer. The top three priorities related to treatment, prognosis, and self-care. Sociodemographic variables did not influence the priorities of information needs among older adults with symptomatic myeloma. The Internet, physicians, family, and friends were among the top sources of information. Advanced practitioners in oncology should support and identify interventions that can enhance patients’ learning process from these sources. Well poised to assist patients in searching credible and reliable Internet sources, advanced practitioners in oncology can provide patient education about different treatments and the impact of such treatments on prognosis (e.g., overall survival and likelihood of cure).
PMCID: PMC4577030  PMID: 26413371
6.  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
7.  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
8.  Screening for religious/spiritual struggle in blood and marrow transplant patients 
A growing body of research documents the harmful effects of religious/spiritual (R/S) struggle (e.g., feeling abandoned or punished by God) among patients with a wide variety of diagnoses. Documented effects include poorer quality of life, greater emotional distress, poorer recovery, and increased disability. This study reports the use of a screening protocol that identified patients who may have been experiencing R/S struggle. We also examined the prevalence and correlates of possible R/S struggle, its association with quality of life, pain, and depressive symptoms and compared the results from the screening protocol with social workers’ assessments.
One hundred seventy-eight blood and marrow transplant patients completed the Electronic Self-Report Assessment—Cancer (ESRA-C) which included the Rush Religious Struggle Screening Protocol and other measures of quality of life, pain, and depressive symptoms prior to transplant therapy. All participants were assessed by a social worker, 90 % within 2 weeks of the ESRA-C assessment.
Using the Rush Protocol, 18 % of the patients were identified as potentially experiencing R/S struggle. R/S struggle was not reported in any social work assessments. In a multivariable model, potential R/S struggle was more likely in patients who were more recently diagnosed, male, and Asian/Pacific Islanders. There were no significant associations between potential R/S struggle and quality of life, pain, or depressive symptoms.
Early identification of patients with R/S struggle will facilitate their referral for further assessment and appropriate intervention. Further research is needed to identify the best methods of screening patients for R/S struggle.
PMCID: PMC4749017  PMID: 23052922
Cancer; Oncology; Screening; Religious/spiritual struggle; Chaplain
9.  Feasibility of Using Algorithm-Based Clinical Decision Support for Symptom Assessment and Management in Lung Cancer 
Distressing symptoms interfere with quality of life in patients with lung cancer. Algorithm-based clinical decision support (CDS) to improve evidence-based management of isolated symptoms appears promising but no reports yet address multiple symptoms.
This study examined the feasibility of CDS for a Symptom Assessment and Management Intervention targeting common symptoms in patients with lung cancer (SAMI-L) in ambulatory oncology. The study objectives were to evaluate completion and delivery rates of the SAMI-L report and clinician adherence to the algorithm-based recommendations.
Patients completed a Web-based symptom-assessment, and SAMI-L created tailored recommendations for symptom management. Completion of assessments and delivery of reports were recorded. Medical record review assessed clinician adherence to recommendations. Feasibility was defined as ≥ 75% report completion and delivery rates and ≥ 80% clinician adherence to recommendations. Descriptive statistics and generalized estimating equations were used for data analyses.
Symptom assessment completion was 84% (95% CI: 81–87%). Delivery of completed reports was 90% (95% CI: 86–93%). Depression (36%), pain (30%) and fatigue (18%) occurred most frequently, followed by anxiety (11%) and dyspnea (6%). On average, overall recommendation adherence was 57% (95% CI: 52–62%) and was not dependent on the number of recommendations (P = 0.45). Adherence was higher for anxiety (66%; 95% CI: 55–77%), depression (64%; 95% CI: 56–71%), pain (62%; 95% CI: 52–72%), and dyspnea (51%; 95% CI: 38–64%) than for fatigue (38%; 95% CI: 28–47%).
CDS systems, such as SAMI-L, have the potential to fill a gap in promoting evidence-based care.
PMCID: PMC4621015  PMID: 24880002
Palliative care; symptom management; lung cancer; clinical decision support; clinical practice guidelines
10.  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
11.  Communication about symptoms and quality of life issues in patients with cancer: Provider perceptions 
This study used qualitative data collection and analysis methods to describe provider perceptions of addressing patient-initiated communication about common or sensitive symptom and quality of life issues (SQIs) in oncology. Eligible participants were healthcare providers who had participated in a larger trial testing a patient-centered technology to assess cancer SQIs and support self care. Audio-recorded vignettes were simulated based on recorded clinic visits from the larger trial and presented during semi-structured cognitive interviews with each participant. Transcripts of the interviews were content analyzed. Twelve providers participated. Participants’ responses included four themes: the institutional and clinical context, the complexity of addressing SQIs, strategies used to understand SQIs, and creating a plan to address SQIs. Participants felt that approaching SQIs inside and outside of the clinic required ongoing communication within a multidisciplinary team both to gather information and manage the SQI. Forming a relationship with the patient was one strategy to facilitate assessing SQIs. Most participants expressed a need for guidance about effective SQI communication. Providers perceived approaching SQIs as a routine part of interdisciplinary clinical care. The specific symptom and the complexity of its management influenced the process of assessing and managing SQIs. Findings have implications for institutional processes, training, evaluation, and program development.
PMCID: PMC4206668  PMID: 24748096
12.  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
13.  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
14.  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
15.  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
16.  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
17.  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
18.  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
19.  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
20.  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
21.  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
22.  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
23.  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
24.  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
25.  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

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