Search

Chemotherapy-induced neuropathy is a painful and debilitating adverse effect of certain chemotherapy drugs. There have not been any patient-centered, easily accessible Web-based interventions to assist with self-management of chemotherapy-induced neuropathy. The aims of this study were to evaluate usability and acceptability and to estimate an effect size of a Web-based intervention for assessing and managing chemotherapy-induced neuropathy. Participants (N = 14) were instructed to complete the Creativity, Optimism, Planning, and Expert Information for Chemotherapy-Induced Peripheral Neuropathy program and provide verbal responses to the program. Participants completed the Chemotherapy Induced Peripheral Neuropathy Assessment Tool and Post-Study System Usability Questionnaire. Iterative changes were made to the COPE-CIPN. Participants were asked to provide feedback on the revised COPE-CIPN, repeat the Chemotherapy Induced Peripheral Neuropathy Assessment Tool, and evaluate acceptability using the Acceptability e-Scale. The COPE-CIPN demonstrated high usability (mean, 1.98 [SD, 1.12]) and acceptability (mean, 4.40 [SD, 0.52]). Comments indicated that the interface was easy to use, and the information was helpful. While neuropathy symptoms continued to increase in this group of patients receiving neurotoxic chemotherapy, there was a decrease in mean level of interference with activities from 53.71 to 39.29 over 3 to 4 months, which indicated a moderate effect (d = 0.39) size. The COPE-CIPN may be a useful intervention to support self-management of chemotherapy-induced neuropathy.

Background: Pictographs (or pictograms) have been widely utilized to convey medication related messages and to address nonadherence among patients with low health literacy. Yet, patients do not always interpret the intended messages on commonly used pictographs correctly and there are questions how they may be delivered on mobile devices., Objective: Our objectives are to refine a set of pictographs to use as medication reminders and to establish preliminary steps for delivery via smart phones., Methods: Card sorting was used to identify existing pictographs that focus group members found "not easy" to understand. Participants then explored improvements to these pictographs while iterations were sketched in real-time by a graphic artist. Feedback was also solicited on how selected pictographs might be delivered via smart phones in a sequential reminder message. The study was conducted at a community learning center that provides literacy services to underserved populations in Seattle, WA. Participants aged 18 years and older who met the criteria for low health literacy using S-TOFHLA were recruited., Results: Among the 45 participants screened for health literacy, 29 were eligible and consented to participate. Across four focus group sessions, participants examined 91 commonly used pictographs, 20 of these were ultimately refined to improve comprehensibility using participatory design approaches. All participants in the fifth focus group owned and used cell phones and provided feedback on preferred sequencing of pictographs to represent medication messages., Conclusion: Low literacy adults found a substantial number of common medication label pictographs difficult to understand. Participative design processes helped generate new pictographs, as well as feedback on the sequencing of messages on cell phones, that may be evaluated in future research.

The purpose of this study was to describe how patient information needs change over the course of receiving radiation therapy for prostate cancer. Convenience sampling was utilized to recruit men with stage I-III prostate cancer. A longitudinal repeated measures design was implemented for this pilot study. Patients were presented with 36 paired comparisons, each asking the participant to choose the most important information topic(s) for today. Following completion of the survey instruments, the clinic nurse delivered the four top-ranked information topic handouts to each patient with brief instruction on how to use the handouts. Over the course of 6 months, we were able to recruit 35 men. The four highest priority topics across all four sessions were prognosis, stage of disease, treatment options, and side effects. Our results suggest trends in the information priorities that men hold over the course of radiation treatment. The information priorities do appear to shift over time, notably prognosis concerns and risk for family members continued to rise over time, while side effect information declined. These findings will extend an already strong foundation of evidence for preparatory information in radiation therapy. Furthermore, these findings will strengthen current evidence that computerized assessment of patient self-report information is feasible and an important adjunct to clinical practice.

Understanding how cancer symptom distress and resilience contribute to quality of life (QoL) in adolescent cancer and may potentially help these patients achieve better health-related outcomes. The objective of this study was to describe cancer symptom distress, QoL, and resilience in adolescents with cancer and to determine whether resilience is a mediating variable. Forty adolescent cancer patients were recruited, and data were collected via a demographic questionnaire, the Cancer Symptom Distress Scale, the Resilience Scale, and the Minneapolis-Manchester Quality of Life Scale. Pearson's correlation, multiple regressions, and the Sobel test were conducted. Both resilience and cancer symptom distress were regressed against QoL, accounting for 62.1% of observed variation in QoL scores. The bootstrap result estimated the true indirect effect between -.0189 and -.0024, with a 95% confidence interval. Resilience mediates the relationship between cancer symptom distress and QoL. Clinical use of a resilience measure, for example to use in developing and evaluating interventions focused on enhancing resilience, may be practical for nurses., (© 2015 by Association of Pediatric Hematology/Oncology Nurses.)

Background: 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., Objective: To examine factors associated with sx-EDV/HAs in ambulatory oncology patients receiving chemotherapy and/or radiation., Methods: 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., Results: 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 signifcantly associated with having at least 1 sx-EDV/HA., Limitations: This is a secondary analysis not sized to determine cause and effect. The results have limited generalizability., Conclusion: Most patients did not experience a sx-EDV/HA. Demographic and clinical factors predicted a sx-EDV/HA.

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).

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 health care 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.

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.

Purpose: 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., Methods: 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., Results: 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., Conclusions: 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.

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.

Purpose/objectives: To explore healthcare provider cue-responding behaviors to patient cues of distress and socioemotional concerns during ambulatory, on-treatment oncology visits., Design: Descriptive secondary analysis of a data set of audio recordings of oncology visits and reports of symptoms and quality of life recorded with an electronic self-report assessment-cancer (ESRA-C) tool., Setting: Comprehensive cancer center, ambulatory care., Sample: 31 randomly selected cases from an existing data set (with one used as a training tool) of 590 audio recordings of patient-provider communication., Methods: Patients were placed in Group 1 (n = 20) and Group 2 (n = 10) to explore differences in patient-provider communication and decrease coder bias. Both groups completed the ESRA-C questionnaire prior to the visit. Providers in Group 2 received a printed ESRA-C summary report for use during the visit. Audio files of the visit were coded using the Medical Interview Aural Rating System (MIARS)., Main Research Variables: Patient cues of distress and provider cue-responding behaviors., Findings: Patient cues of distress and socioemotional concerns ranged from 0-13 cues per visit, with a mean of 4.6 cues per visit. Providers acknowledged 57% of patient cues, but only acknowledged and explored 22% of all patient cues. Providers in Group 2 acknowledged patient concerns more often but explored the concerns less frequently. The number of patient cues distanced from by providers was lower in Group 2 and the overall provider score for responsiveness to patient cues of distress was higher, indicating more responsiveness than from Group 1., Conclusions: The use of a summary report of patient concerns may have enhanced provider responsiveness, in general. Distancing behaviors by providers in response to patient verbal cues may indicate a lack of knowledge, time limitations, or a lack of confidence., Implications for Nursing: To effectively support patients with cancer through active therapy, a greater level of acknowledgment, exploration, and responsive action by providers is indicated. These findings have implications for provider education, with regard to appropriate responses, and for researchers to test methods that best prompt and support effective provider behaviors, ultimately improving patient outcomes.

The Internet is increasingly used as a medium for gathering and exchanging health information exchange. Healthcare professionals and organizations need to consider barriers that may exist within their patient-oriented Web applications. One approach to making the Web more accessible for those with lower health literacy may be to supplement textual content with audio annotation using text-to-speech engines, allowing for the creation of a virtual surrogate reader. One challenge is that with numerous text-to-speech engines on the market, objective measures of quality are difficult to obtain. To facilitate comparisons of text-to-speech engines, we developed an open-source Web application that measures user reaction times, subjective quality ratings, and accuracy in completing tasks across different audio files created by text-to-speech engines. Our research endeavor was successful in building and piloting this Web application; significant differences were found for subjective ratings of quality across three text-to-speech engines priced at different levels. However, no significant differences were found with reaction times or accuracy between these text-to-speech engines. Future avenues of research include exploring more complex tasks, usability issues related to implementing text-to-speech features, and applied health promotion and education opportunities among vulnerable populations.

Colecta-PALM is a Web-based application delivered on PDAs that provides behavioral messaging based on risk assessment responses for HIV patients. Usability testing was undertaken with 15 people living with HIV.AIDS (PWLHA) in two clinics in Lima. Sixty percent (9/15) were somewhat/very satisfied with Colecta-PALM, with usefulness rated 3.7/5. Users found the tool innovative, interesting, easy to use, educational, trustworthy, private, and non-judgmental. Colecta-PALM was well-received and easily usable by most.

We developed a Web-based application delivered on PDAs (Colecta-PALM in Peru, Pambazuko-PALM in Kenya), to collect data from HIV patients and to facilitate HIV provider training. Colecta-PALM provides tailored feedback (behavioral messaging) based on risk assessment responses for HIV patients. Pambazuko-PALM collects patient risk assessment data, and delivers counseling protocol training and evaluation to nurses involved in HIV care.

The purpose of this pilot study was to develop and test the Personal Patient Profile-Prostate (P4), a customized, Internet-based decision support system for men with localized prostate cancer. In a sample of 30 men, the P4 program was successfully implemented in a clinical setting. Men reported the program useful and web-logs documented a high use rate of menu-driven components of the intervention.

The Clinical Informatics Research Group and Biobehavioral Nursing and Health Systems at the University of Washington are working with interdisciplinary teams to improve patient care and tracking of patient-reported symptoms and outcomes by creating an extensible web-based survey and intervention platform. The findings and cumulative experience from these processes have led to incremental improvements and variations in each new implementation of the platform. This paper presents progress in the first year of a three-year NIH study entitled Electronic Self Report Assessment--Cancer (ESRA-C). The project's goals are to enhance and evaluate the web-based computerized patient self-reporting and assessment system at the Seattle Cancer Care Alliance. Preliminary work and lessons learned in the modification of the platform and enhancements to the system will be described.