Facilitators and Barriers to Successful Revaccination after Hematopoietic Stem Cell Transplantation among Adult Survivors: A Scoping Review.

Post-transplantation revaccination uptake of childhood vaccines in adult hematopoietic stem cell transplantation (HSCT) survivors is suboptimal, increasing the risk of infectious morbidity and mortality within this population. We systematically reviewed the literature for factors related to revaccination uptake, as well as the barriers and facilitators that affect successful revaccination. We conducted a scoping review searching PubMed, CINAHL, Embase, and Web of Science in March 2023. Two independent reviewers performed study selection using the complete dual review process. Data were extracted using a standard form. Factors were characterized as demographic, clinical, or social determinants of health that affected revaccination uptake. Barriers and facilitators were categorized using the constructs from the World Health Organization Behavioural and Social Drivers Framework. Our searches yielded 914 sources, from which 15 publications were selected (5 original research and 10 quality improvement initiatives). More than one-half of the reports listed factors associated with poorer uptake, predominately clinical factors, followed by social determinants of health, then demographic factors. Nearly all the reports described barriers to successful revaccination uptake, with most of these falling into the "practical issues" construct. Most of the reports described facilitators, nearly all related to health care system improvements associated with improved revaccination uptake. Although this review provides a good starting point for understanding impediments to successful revaccination after HSCT, this review reveals that we lack sufficient evidence to drive targeted interventions to improve uptake. More research is needed, focusing on survivors' voices to inform our knowledge of barriers and facilitators to complete revaccination after HSCT, exploring behavioral and social drivers within this population, and examining the care delivery models that may complicate vaccine delivery in this population.

Exploring Clinicians' Perspectives of Barriers to Chemotherapy-Induced Peripheral Neuropathy Assessment and Management in Oncology Practice: A Qualitative Analysis of Semi-structured Interviews.

BACKGROUND: Quantitative reports suggest that the assessment and management of chemotherapy-induced peripheral neuropathy (CIPN) in practice is suboptimal. OBJECTIVE: The purpose of this qualitative analysis was to explore clinician-related perspectives of CIPN assessment, management, and the use of a CIPN decision support tool. METHODS: Clinicians from the breast oncology, gastrointestinal oncology, or multiple myeloma disease centers at Dana-Farber Cancer Institute who interacted with a CIPN clinician decision support algorithm were eligible to participate in the semi-structured interviews. The interview guide included questions about CIPN assessment, management, and clinician-decision support tool use. All interviews were audio-recorded, transcribed, and analyzed using inductive content analysis. RESULTS: Of the 39 eligible clinicians, 15 agreed to be interviewed. Interviewed clinicians were mainly physicians (73.3) and White, non-Hispanic (93.3%). Main themes from the interviews included (1) CIPN management practice patterns (eg, endorsement of non-recommended management strategies or lack of standardization for chemotherapy dose reduction) and barriers (eg, insurance prior authorizations required for duloxetine prescription), (2) CIPN assessment practice patterns (eg, use of subjective instead of objective CIPN assessment approaches) and barriers (eg, difficult to interpret patients' CIPN report between visits), and (3) utilization of the clinician decision support tool (eg, all assessment tasks lead to same management options). CONCLUSIONS: There are several barriers to clinicians' use of evidence-based CIPN assessment and management strategies. IMPLICATIONS FOR PRACTICE: Future work should be focused on addressing barriers to duloxetine prescription, developing evidence-based CIPN assessment and management strategies, improving symptom monitoring, and facilitating referrals to existing supportive care services.

Perceived patient-centered communication, quality of life, and symptom burden in individuals with ovarian cancer.

OBJECTIVE: To describe perceptions of patient-centered communication (PCC); assess whether physician specialty, patient characteristics, or health system characteristics are associated with PCC; and identify associations between PCC, health-related quality of life (HRQoL), and symptom burden among individuals with ovarian cancer. METHODS: Cross-sectional, descriptive survey of English-speaking adults with ovarian cancer. PCC, HRQoL, and ovarian cancer symptom burden were assessed with the PCC-Ca-36, the FACT-G, and the FOSI-18, respectively. PCC-Ca-36 scores were summarized using descriptive statistics. Predictors of PCC-Ca-36, FACT-G, and FOSI-18 scores were identified using multiple linear regression. RESULTS: Participants (n = 176) had a mean age of 59.4 years (SD = 12.1). The majority (65.9%) had advanced-stage disease, while 42.0% were receiving treatment. The mean PCC-Ca-36 total score was 4.09 (SD = 0.78) out of a possible 5, indicating participants often perceived that clinicians engaged in PCC. Among the PCC functions, participants reported that clinicians least often enabled patient self-management (M = 3.65, SD = 0.99), responded to emotions (M = 3.84, SD = 1.04), and managed uncertainty (M = 3.91, SD = 0.93). In multivariable analyses, neither physician specialty nor patient and health system characteristics were significantly associated with overall PCC. Greater overall PCC predicted better overall HRQoL; better social/family, emotional, and functional well-being; and lower overall and physical symptom burden (all p ≤ 0.05). CONCLUSION: Greater PCC is significantly associated with better HRQoL and lower symptom burden among individuals with ovarian cancer. PRACTICE IMPLICATIONS: Promotion of PCC is a promising strategy to improve patient-reported outcomes in the ovarian cancer care setting.

Exploring the impact of a decision support algorithm to improve clinicians' chemotherapy-induced peripheral neuropathy assessment and management practices: a two-phase, longitudinal study.

BACKGROUND: Chemotherapy-induced peripheral neuropathy (CIPN) negatively affects physical function and chemotherapy dosing, yet, clinicians infrequently document CIPN assessment and/or adhere to evidence-based CIPN management in practice. The primary aims of this two-phase, pre-posttest study were to explore the impact of a CIPN clinician decision support algorithm on clinicians' frequency of CIPN assessment documentation and adherence to evidence-based management. METHODS: One hundred sixty-two patients receiving neurotoxic chemotherapy (e.g., taxanes, platinums, or bortezomib) answered patient-reported outcome measures on CIPN severity and interference prior to three clinic visits at breast, gastrointestinal, or multiple myeloma outpatient clinics (n = 81 usual care phase [UCP], n = 81 algorithm phase [AP]). During the AP, study staff delivered a copy of the CIPN assessment and management algorithm to clinicians (N = 53) prior to each clinic visit. Changes in clinicians' CIPN assessment documentation (i.e., index of numbness, tingling, and/or CIPN pain documentation) and adherence to evidence-based management at the third clinic visit were compared between the AP and UCP using Pearson's chi-squared test. RESULTS: Clinicians' frequency of adherence to evidence-based CIPN management was higher in the AP (29/52 [56%]) than the UCP (20/46 [43%]), but the change was not statistically significant (p = 0.31). There were no improvements in clinicians' CIPN assessment frequency during the AP (assessment index = 0.5440) in comparison to during the UCP (assessment index = 0.6468). CONCLUSIONS: Implementation of a clinician-decision support algorithm did not significantly improve clinicians' CIPN assessment documentation or adherence to evidence-based management. Further research is needed to develop theory-based implementation interventions to bolster the frequency of CIPN assessment and use of evidence-based management strategies in practice. TRIAL REGISTRATION: ClinicalTrials.Gov, NCT03514680 . Registered 21 April 2018.

Preserving Oneself in the Face of Uncertainty: A Grounded Theory Study of Women With Ovarian Cancer.

PURPOSE: To describe the cancer care process as it is perceived by women with ovarian cancer. PARTICIPANTS & SETTING: 18 English-speaking adult women with ovarian cancer were recruited from an advocacy organization for patients with ovarian cancer and the gynecologic oncology clinic at a community-based teaching hospital in Burlington, Massachusetts. METHODOLOGIC APPROACH: A grounded theory approach was used. Data were collected via individual interviews with participants. FINDINGS: An overarching theme of preserving oneself in the face of uncertainty was described by the participants. Trajectories from prediagnosis to treatment were influenced by the quality of patient-provider communication, support from significant others, and self-concept aspects. IMPLICATIONS FOR NURSING: Comprehensive care that validates patient concerns and supports information exchange is essential. Nurses can promote the physical and psychological well-being of women with ovarian cancer by identifying institutional and community-based resources for support and specialty care.

Characterizing patient-clinician chemotherapy-induced peripheral neuropathy assessment and management communication approaches.

OBJECTIVE: To describe the frequency and characteristics of chemotherapy-induced peripheral neuropathy (CIPN) assessment and management communication approaches between patients receiving neurotoxic chemotherapy and clinicians. METHODS: The data used in this analysis originated from a randomized controlled trial in which adults with cancer self-reported treatment-related symptoms using web-based symptom assessment technology. Three-to-six weeks after study initiation, each participant's outpatient visit was audio-recorded. Audio recordings and associated clinician notes for 159 participants who received platinum and/or taxane-based chemotherapy were coded for the presence of several CIPN assessment and management communication characteristics. RESULTS: Participants received low cumulative neurotoxic chemotherapy doses (75%) at the time of audio recording. CIPN was discussed and documented in 44% and 46% of participant-clinician encounters. In symptomatic participants, clinicians asked an average of 0.7 open-ended questions, appropriately managed 70% of cases, and asked upper and lower extremity CIPN questions in 25% of cases. CONCLUSIONS: Clinicians infrequently discussed and documented CIPN in participants with low CIPN severity, however appropriately managed mild CIPN. Development of interventions to translate existing recommended CIPN communication approaches into practice are required. PRACTICE IMPLICATIONS: Effective participant-clinician communication is required at each clinic visit during chemotherapy treatment to identify initial signs of CIPN and offer appropriate treatment.

Assigning value to preparation for prostate cancer decision making: a willingness to pay analysis.

BACKGROUND: The Personal Patient Profile-Prostate (P3P) is a web-based decision support system for men newly diagnosed with localized prostate cancer that has demonstrated efficacy in reducing decisional conflict. Our objective was to estimate willingness-to-pay (WTP) for men's decisional preparation activities. METHODS: In a multicenter, randomized trial of P3P, usual care group participants received typical preparation for decision making plus referral to publicly-available, educational websites. Intervention group participants received the same, plus online P3P educational media specific to the user's personal preferences and values, and a communication coaching component tailored to race\ethnicity, age and language. WTP data were collected one week after physician consultation. An iterative bidding direct contingent valuation survey format was used, randomly assigning participants to high or low starting values (SV). Tobit models were used to explore associations between SV-adjusted WTP and age, education, marital and work-status, insurance, decision-control preference and decision-making stage. RESULTS: Of 392 participants enrolled, 141 P3P and 107 usual care (UC) provided a WTP value. Men were willing to pay a median $25 (IQR $10-100) for P3P in addition to usual care preparation materials. In the final multivariable tobit regression model, SV, marital status, stage of decision making and income were significantly associated with WTP for P3P. Decision control preference was considered marginally significant (p = 0.11). Men were WTP a median $30 (IQR $10-$200) for usual care material alone. In the final multivariable model, SV, education, and stage of decision making were significantly associated with WTP in usual care. CONCLUSION: WTP was similar for UC and for the addition of P3P to UC decision preparation. The WTP values were associated with demographic and preference variables. Findings can help focus decision support on future patients who would benefit most: those without strong support systems, at earlier stages of decision making, and open to a shared-decision style. TRIAL REGISTRATION: NCT NCT01844999 . Registered May 3, 2013.

Patient-Clinician Communication: American Society of Clinical Oncology Consensus Guideline.

Purpose To provide guidance to oncology clinicians on how to use effective communication to optimize the patient-clinician relationship, patient and clinician well-being, and family well-being. Methods ASCO convened a multidisciplinary panel of medical oncology, psychiatry, nursing, hospice and palliative medicine, communication skills, health disparities, and advocacy experts to produce recommendations. Guideline development involved a systematic review of the literature and a formal consensus process. The systematic review focused on guidelines, systematic reviews and meta-analyses, and randomized controlled trials published from 2006 through October 1, 2016. Results The systematic review included 47 publications. With the exception of clinician training in communication skills, evidence for many of the clinical questions was limited. Draft recommendations underwent two rounds of consensus voting before being finalized. Recommendations In addition to providing guidance regarding core communication skills and tasks that apply across the continuum of cancer care, recommendations address specific topics, such as discussion of goals of care and prognosis, treatment selection, end-of-life care, facilitating family involvement in care, and clinician training in communication skills. Recommendations are accompanied by suggested strategies for implementation. Additional information is available at www.asco.org/supportive-care-guidelines and www.asco.org/guidelineswiki .

Psychosocial outcomes of an electronic self-report assessment and self-care intervention for patients with cancer: a randomized controlled trial.

BACKGROUND: The use of Web-based technology to facilitate self-care and communication with health care providers has the potential to improve psychosocial outcomes for patients undergoing cancer treatment. This study reports an analysis of psychosocial outcomes of the electronic self-report assessment for cancer study. METHODS: Adult patients starting cancer therapy were randomized to receive usual education about symptoms and quality of life topics (control) or usual education plus self-care instruction for symptoms and quality of life issues, communication coaching, and the opportunity to track symptoms and quality of life between clinic visits (intervention). Depression (Patient Health Questionnaire-9) and social, emotional, and role functioning (European Organization for Research and Treatment of Cancer Quality of Life Questionnaire-Core 30 subscales) were measured before treatment (T1), 3 to 6 weeks after starting treatment (T2), 2 weeks later (T3), and 2 to 4 weeks after treatment ended or at the next restaging visit for participants who continued to receive treatment (T4). Clinicians received summaries of participant reports at each time point in both groups. RESULTS: In multivariable analysis, the depression scores were significantly lower (P = .04) and there was a trend to higher social and role functioning (P = .07) in the intervention group compared with the control. Working status was significantly associated with lower depression and better social and role functioning. CONCLUSIONS: A patient-centered, Web-based intervention that facilitates self-care and communication can improve psychosocial outcomes in the cancer setting.

Increasing Complexity in Rule-Based Clinical Decision Support: The Symptom Assessment and Management Intervention.

BACKGROUND: Management of uncontrolled symptoms is an important component of quality cancer care. Clinical guidelines are available for optimal symptom management, but are not often integrated into the front lines of care. The use of clinical decision support (CDS) at the point-of-care is an innovative way to incorporate guideline-based symptom management into routine cancer care. OBJECTIVE: The objective of this study was to develop and evaluate a rule-based CDS system to enable management of multiple symptoms in lung cancer patients at the point-of-care. METHODS: This study was conducted in three phases involving a formative evaluation, a system evaluation, and a contextual evaluation of clinical use. In Phase 1, we conducted iterative usability testing of user interface prototypes with patients and health care providers (HCPs) in two thoracic oncology clinics. In Phase 2, we programmed complex algorithms derived from clinical practice guidelines into a rules engine that used Web services to communicate with the end-user application. Unit testing of algorithms was conducted using a stack-traversal tree-spanning methodology to identify all possible permutations of pathways through each algorithm, to validate accuracy. In Phase 3, we evaluated clinical use of the system among patients and HCPs in the two clinics via observations, structured interviews, and questionnaires. RESULTS: In Phase 1, 13 patients and 5 HCPs engaged in two rounds of formative testing, and suggested improvements leading to revisions until overall usability scores met a priori benchmarks. In Phase 2, symptom management algorithms contained between 29 and 1425 decision nodes, resulting in 19 to 3194 unique pathways per algorithm. Unit testing required 240 person-hours, and integration testing required 40 person-hours. In Phase 3, both patients and HCPs found the system usable and acceptable, and offered suggestions for improvements. CONCLUSIONS: A rule-based CDS system for complex symptom management was systematically developed and tested. The complexity of the algorithms required extensive development and innovative testing. The Web service-based approach allowed remote access to CDS knowledge, and could enable scaling and sharing of this knowledge to accelerate availability, and reduce duplication of effort. Patients and HCPs found the system to be usable and useful.

A new model for postdoctoral training: the Nursing Postdoctoral Program in Cancer and Health Disparities.

The University of Massachusetts Boston and Dana-Farber/Harvard Cancer Center joined forces in 2009 to create a Postdoctoral Nursing Research Fellowship in Cancer and Health Disparities. In combining the resources of a large university and a research-intensive service institution, the postdoctoral program provides a new model for preparing nurse scientists to conduct independent research that advances nursing knowledge and interdisciplinary understanding of complex health issues. The multifaceted program consists of educational programming, research training, and career planning components. Additionally, each fellow is assigned a nurse scientist mentor and interdisciplinary co-mentor. The mentors support the fellows with scholarly activities and research training and help the fellows craft individualized career plans, including proposals for postfellowship career development research. In this article, the postdoctoral program leaders describe the program structure, strategies used to recruit minority and nonminority candidates, and data describing program outcomes and share lessons learned and recommendations for organizations that may be interested in establishing similar postdoctoral fellowships at their institutions.

Patient cues and symptoms of psychosocial distress: what predicts assessment and treatment of distress by oncology clinicians?

OBJECTIVE: Psychosocial concerns arise after a cancer diagnosis and during treatment requiring oncology clinicians to initiate discussions to identify distress. This study examined patient-clinician communication about psychosocial concerns and predictors of assessment and treatment/referral for distress. METHODS: Secondary analysis of existing dataset coded to explore patient-clinician communication during ambulatory visits in two comprehensive cancer centers was carried out. Sample included adult patients with various cancers and stages. Dataset included audio-recordings and symptom/QOL reports 4-6 weeks after starting treatment from all distressed patients (n = 66) in parent study and random sample of nondistressed patients (n = 23). Distressed patients had moderate-to-severe depression (Patient Health Questionnaire-9 scores ≥10) and/or poor emotional functioning (European Organization for Research and Treatment of Cancer Quality of Life Questionnaire emotional function scores <50). Audio-recordings were coded to describe patient-clinician communication about psychosocial concerns using the coding scheme from the parent study plus Medical Interview Aural Rating System. RESULTS: The remaining patients gave 222 cues of psychosocial concerns: 183 from 46 distressed patients and 39 from nine nondistressed patients. Distressed patients were younger, were female, had higher symptom burden, and/or gave more cues. Significantly, more distressed patients had at least one cue/visit. Clinicians initiated 62% of discussions overall with no statistical difference between distressed and nondistressed groups. More explicit cues and more than four cues predicted treatment/referral for distress. CONCLUSIONS: Distressed patients were younger, were female, had higher symptom burden, and/or gave more verbal cues. Clinicians responded to explicit and more frequent cues by providing treatment and/or referrals for distress. Further exploration is needed regarding clinician factors related to assessment of psychosocial concerns.

Feasibility of using algorithm-based clinical decision support for symptom assessment and management in lung cancer.

CONTEXT: Distressing symptoms interfere with the quality of life in patients with lung cancer. Algorithm-based clinical decision support (CDS) to improve evidence-based management of isolated symptoms seems promising, but no reports yet address multiple symptoms. OBJECTIVES: 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. METHODS: 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% or higher report completion and delivery rates and 80% or higher clinician adherence to recommendations. Descriptive statistics and generalized estimating equations were used for data analyses. RESULTS: 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%). CONCLUSION: The CDS systems, such as SAMI-L, have the potential to fill a gap in promoting evidence-based care.

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.

BACKGROUND: 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). METHODS: 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. RESULTS: 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). CONCLUSIONS: 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.

Electronic self-report assessment for cancer and self-care support: results of a multicenter randomized trial.

PURPOSE: 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. RESULTS: 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). CONCLUSION: 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.

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.

BACKGROUND: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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 ClinicalTrials.gov: NCT00852852.

Concerns of stem cell transplant patients during routine ambulatory assessment.

BACKGROUND: 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. METHODS: 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). RESULTS: 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. CONCLUSION: 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.

Factors associated with pain among ambulatory patients with cancer with advanced disease at a comprehensive cancer center.

PURPOSE: The prevalence and severity of pain have not been well described among oncology patients in ambulatory care. To better understand the burden of pain among patients with advanced cancer, we examined the prevalence of pain reported during office and treatment visits. METHODS: A retrospective study of 4,014 patients with advanced disease (stage 4 at diagnosis or metastatic progression) who completed an ambulatory visit between 2004 and 2006 was conducted at a comprehensive cancer center in Boston, Massachusetts. RESULTS: At their first visit during the study period, 74% of patients reported no pain (0 score); 12%, low pain (1 to 3 score); 9%, moderate pain (4 to 6 score); and 5%, severe pain (7 to 10 score). The prevalence of pain was highest among patients who were younger than 60 years of age, were nonwhite, did not speak English as their primary language, or were covered by Medicaid, received free care, or paid their own health care costs. Patients with thoracic, breast, and head and neck cancers had higher pain scores than those with other diseases. Pain was reported more frequently among patients whose diagnosis or metastatic progression occurred less than 3 months before the reported pain score. In multivariable regression analysis, age, race, cancer type, and time since diagnosis/progression were identified as important factors associated with severe pain. CONCLUSION: Younger age, minority race, and recent onset of advanced disease are associated with severe pain among patients with cancer. Recognizing these high-risk groups could inform targeted interventions to address pain care in ambulatory patients with advanced cancer.

Enhancing patient-provider communication with the electronic self-report assessment for cancer: a randomized trial.

PURPOSE: 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. RESULTS: 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. CONCLUSION: The ESRA-C is the first electronic self-report application to increase discussion of SQLIs in a US randomized clinical trial.

Piloting electronic self report symptom assessment - Cancer (ESRA-C) in Hong Kong: a mixed method approach.

PURPOSE: The benefits of utilizing computerized assessment in clinical settings have been reported in studies over the last three decades and more recently in the oncology settings. This study aimed to assess the feasibility and acceptability of using an electronic self report symptom assessment tool among Chinese oncology patients. METHODS AND SAMPLE: The tool, developed by The University of Washington, Distributed Health Assessment and Intervention Research (DHAIR) group was translated into Chinese. The adapted web-based survey platform, the Electronic Self Report Assessment - Cancer (ESRA-C), was tested in a local cancer resource center in Hong Kong. Participants' perceptions of the acceptability and feasibility of the symptom assessment process were assessed using the Acceptability E-scale as well as observation and qualitative interview data. Demographic data were also collected through the touch screen computer system. A convenience sample of 30 (11 male and 19 female) oncology patients was recruited to use the touch-screen computer to assess participants' symptoms using ESRA-C. RESULTS: The acceptability scale indicated moderately high acceptability in each subscale (mean score of 3.32-4.71). On average, participants took 17.5 min (SD: 8.9) to complete the ESRA-C. The qualitative interview data revealed that the majority (25 participants) asserted that the ESRA-C was useful and effective in reporting personal health conditions. CONCLUSIONS: The study suggested that electronic assessment can offer a feasible, attractive, and viable means of implementing regular and comprehensive symptom assessment, which can lead to better symptom management in cancer patients.