Cornelia M. Ruland

Developing a quality criteria framework for patient decision aids: online international Delphi consensus process

Abstract Objective To develop a set of quality criteria for patient decision support technologies (decision aids). Design and setting Two stage web based Delphi process using online rating process to enable international collaboration. Participants Individuals from four stakeholder groups (researchers, practitioners, patients, policy makers) representing 14 countries reviewed evidence summaries and rated the importance of 80 criteria in 12 quality domains ona1to9 scale. Second round participants received feedback from the first round and repeated their assessment of the 80 criteria plus three new ones. Main outcome measure Aggregate ratings for each criterion calculated using medians weighted to compensate for different numbers in stakeholder groups; criteria rated between 7 and 9 were retained. Results 212 nominated people were invited to participate. Of those invited, 122 participated in the first round (77 researchers, 21 patients, 10 practitioners, 14 policy makers); 104/122 (85%) participated in the second round. 74 of 83 criteria were retained in the following domains: systematic development process (9/9 criteria); providing information about options (13/13); presenting probabilities (11/13); clarifying and expressing values (3/3); using patient stories (2/5); guiding/coaching (3/5); disclosing conflicts of interest (5/5); providing internet access (6/6); balanced presentation of options (3/3); using plain language (4/6); basing information on up to date evidence (7/7); and establishing effectiveness (8/8). Conclusions Criteria were given the highest ratings where evidence existed, and these were retained. Gaps in research were highlighted. Developers, users, and purchasers of patient decision aids now have a checklist for appraising quality. An instrument for measuring quality of decision aids is being developed.

Review of the literature on the effects of caring for a patient with cancer

Objective: To adequately help family caregivers (FCs) of cancer patients, clinicians need to understand the complexity of the problems and responsibilities associated with cancer patients illness that FCs experience.

Multiple predictors of health-related quality of life in early stage breast cancer. Data from a year follow-up study compared with the general population.

Prospective longitudinal health-related quality of life (QOL) data from 161 women newly diagnosed with breast cancer were compared to age-adjusted mean QOL scores from a general female population (n=949). In addition, multiple factors (demographic, personality trait, participation in treatment decision-making, information satisfaction, and medical data), which previous research has indicated affect the QOL of breast cancer patients, were simultaneously investigated in a multivariate model, in order to determine which of these variables have the strongest influence on QOL one year after surgery. QOL was evaluated with the EORTC QLQ-C30 at time of diagnosis, three- and 12-months postoperatively. Women with breast cancer scored significantly lower on emotional, cognitive, and social functioning (p < 0.01) at time of diagnosis compared to the general female population, and continued to score lower on cognitive (p=0.008) and social (p=0.009) functioning one-year after surgery. In addition to the initial QOL, breast conservation surgery was predictive of better physical functioning (p=0.01) and body image (p < 0.0001), while chemotherapy was predictive for poorer role functioning (p=0.01) one year after surgery. Dispositional optimism was predictive for better emotional (p=0.003) and social functioning (p=0.01) one year after surgery. At time of diagnosis and throughout the post-diagnosis period, dispositional optimism was associated with better QOL and fewer symptoms.

Effects of an internet support system to assist cancer patients in reducing symptom distress: a randomized controlled trial.

Background: Cancer patients experience many physical and psychosocial problems for which they need support. WebChoice is an Internet-based, interactive health communication application that allows cancer patients to monitor their symptoms and problems, provides individually tailored information and self-management support, e-communication with expert cancer nurses, and an e-forum for group discussion with other patients. Objective: The objective of this study was to examine the effects of WebChoice on symptom distress (primary outcome), depression, self-efficacy, health-related quality of life, and social support (secondary outcomes). Methods: In this 1-year repeated-measures randomized controlled trial, 325 breast and prostate cancer patients were randomized into 1 experimental group with access to WebChoice and 1 control group who received URLs of publicly available cancer Web sites. Results: Group differences on symptom distress were significant only for the global symptom distress index on the Memorial Symptom Assessment Scale (slope estimate, −0.052 [95% confidence interval, −0.101 to −0.004]; t = 4.42; P = .037). There were no significant group differences on secondary outcomes. Additional analyses showed significant within-group improvements in depression in the experimental group only. In the control group, self-efficacy and health-related quality of life deteriorated significantly over time. Conclusion: This randomized controlled trial is one of the first to evaluate effects of an interactive health communication application to support cancer patients in illness management on symptoms. Although only 1 hypothesis was partially supported, the combined results show a clear trend toward better scores in the intervention group on most outcome measures. Implications for Practice: If findings can be supported with additional research, WebChoice may become an important tool to support nursing care that can equip cancer patients to better manage their illness.

Women's patterns of exercise following cardiac rehabilitation.

BACKGROUND Studies of long-term exercise maintenance after an acute cardiac event have been conducted almost exclusively with men, and the findings cannot be generalized to women. OBJECTIVES The aim of this study was to identify womens exercise patterns and adherence to recommended exercise maintenance after a cardiac rehabilitation (CR) program. METHOD Forty women who had a myocardial infarction or had undergone coronary artery bypass graft (CABG) surgery were recruited through convenience sampling immediately after completion of a phase II CR program. Exercise frequency, duration, and intensity were measured using wristwatch heart rate (HR) monitors during exercise for 3 months. RESULTS Results indicated that 12 of 40 (30%) women exercised five times or fewer during the 3-month study period. Only 11 women (27.5%) exercised three or more times per week. Women exercised an average of 5.2 sessions within their target HR during the entire study period. Maintenance of exercise dropped consistently during the course of the study. Although 83% of the participating women started exercising during the first month, after 1 month one third of the participants had stopped exercising. During the last week of the study, only 50% of the women were still exercising. CONCLUSIONS These findings indicate the women are exercising well below the recommended guidelines for exercise after acute cardiac events.

Recent advances in shared decision making for mental health

Purpose of review Shared decision making (SDM) in nonmental health populations has documented positive services and health benefits. To advance integration of SDM into mental healthcare, researchers have outlined several priorities for future research. These include (1) clarifying the role of SDM in mental healthcare; (2) understanding patient and provider perspectives on SDM; (3) assessment of SDM practice in mental health settings; and (4) outcomes of SDM in mental health populations. This article will review recent advances in these areas. Recent findings The current literature shows that SDM can play a role in the mental health treatment process from entry into care to recovery. Patients and providers find SDM acceptable and express a willingness to engage in SDM for reasons that are multifactorial. Barriers to SDM exist in mental health decision making including patient preferences and provider-level biases. Lastly, outcome research provides encouraging preliminary evidence for feasibility and effectiveness of SDM during the mental health encounter. Summary Although there have not been a great number of SDM studies in mental health to date, the positive effects of SDM are comparable to those documented in general nonmental health patient groups, suggesting that future research has the potential to result in findings that are likely to be helpful for patients with psychiatric disorders.

The Complexity of Symptoms and Problems Experienced in Children with Cancer: A Review of the Literature

To adequately help children with cancer, care providers need to understand the complexity of symptoms and problems associated with the illness that children are experiencing, which can enable them to better tailor patient care individually to each child. In this integrative literature review, we identified the types of symptoms and problems that children with cancer can experience during treatment and rehabilitation; the terms/expressions they use to describe their symptoms and problems; how childrens symptoms and problems vary during the course of their illness; and how they vary and co-vary with age, gender or race. Of the 1175 titles identified, 110 articles met the inclusion criteria and were included in the review. Seventy-eight were research-based. A total of 219 distinct symptoms or problems were identified in the literature either as the main problem or a symptom of the main problem. There is significant evidence that children and adolescents experience numerous and complex symptoms, and problems during and after treatment for cancer. Children use many different expressions to talk about their symptom experiences. However, few articles looked at how childrens symptoms and problems varied during the course of their illness or the variations in symptom severity and degree of bother, or examined the relationship between childrens symptom experience and age, gender, or race. Most instruments that were used to measure symptoms were interviewer-administered questionnaires, often adaptations from adult versions, and in younger children, symptoms were often obtained from adult informants. The insights gained from this review can be helpful to researchers and clinicians who wish to better understand how symptoms and problems are experienced from the childrens own perspective. However, more research is needed: to better understand differences in symptom experiences among different age groups; to identify differences among children from distinct cultural, ethnic, or socio-economic backgrounds; to clarify how symptoms and problems interfere with daily life; and to refine assessment methods that allow even younger children to communicate their symptom experiences in an age-adjusted manner.

Stability in Optimism-Pessimism in Relation to Bad News: A Study of Women With Breast Cancer

In this study, we investigated the stability of optimism-pessimism in relation to receiving bad news (i.e., positive lymph nodes, more advanced cancer stage) after breast cancer surgery and in comparison to the stability of anxiety and depression level. The women (n = 165) completed the Life Orientation Test-Revised (Scheier, Carver, & Bridges, 1994) and the Hospital Anxiety and Depression Scale (Zigmond & Snaith, 1983) at time of diagnosis, 3 months, and 12 months after surgery. Overall, womens optimism-pessimism levels remained stable over the follow-up period whether they received bad news or not. In contrast, womens anxiety and depression level decreased significantly over the same time period with 1 exception. Womens level of depression remained fairly stable among those who received bad news. Optimism-pessimism appears to remain stable over situations as well as time and regardless of negative affects.

Developing a module for nursing documentation integrated in the electronic patient record

Norways regional teaching hospitals are working together on a project to develop an interdisciplinary electronic patient record (EPR). This paper presents the results of a project to develop nursing documentation as part of an integrated EPR to improve the quality and continuity of patient care. The project used a consensus process as a working norm. The most important result is that the five hospitals have agreed on a framework for nursing documentation, and on the main components that need to be implemented in the electronic patient record.

How User Characteristics Affect Use Patterns in Web-Based Illness Management Support for Patients with Breast and Prostate Cancer

Background Frequently eHealth applications are not used as intended and they have high attrition rates; therefore, a better understanding of patients’ need for support is warranted. Specifically, more research is needed to identify which system components target different patient groups and under what conditions. Objective To explore user characteristics associated with the use of different system components of a Web-based illness management support system for cancer patients (WebChoice). Methods For this secondary post hoc analysis of a large randomized controlled trial (RCT), in which WebChoice was tested among 325 breast cancer and prostate cancer patients who were followed with repeated measures for 1 year, usage patterns of 162 cancer patients in the intervention arm with access to WebChoice were extracted from the user log. Logistic regression was performed to identify patterns of associations between system use and patient characteristics. Latent class analyses (LCA) were performed to identify associations among the use of different system components and levels of social support, symptom distress, depression, self-efficacy, and health-related quality of life. Results Approximately two-thirds (103/162, 63.6%) of the patients logged on to WebChoice more than once, and were defined as users. A high level of computer experience (odds ratio [OR] 3.77, 95% CI 1.20-11.91) and not having other illnesses in addition to cancer (OR 2.10, 95% CI 1.02-4.34) increased the overall probability of using WebChoice. LCA showed that both men with prostate cancer and women with breast cancer who had low scores on social support accompanied with high levels of symptom distress and high levels of depression were more likely to use the e-message component. For men with prostate cancer, these variables were also associated with high use of the self-management advice component. We found important differences between men with prostate cancer and women with breast cancer when associations between WebChoice use and each user characteristic were analyzed separately. High use of all components was associated with low levels of social support among women with breast cancer, but not among men with prostate cancer. High use of e-messages, advice, and the discussion forum were associated with high levels of depression among women with breast cancer, but not among men with prostate cancer. For men with prostate cancer (but not women with breast cancer), high use of symptom assessments, advice, and the discussion forum were associated with high levels of symptom distress. However, it is unclear whether these findings can be attributed to differences related to diagnosis, gender, or both. Conclusions This study provides evidence that different user characteristics are associated with different use patterns. Such information is crucial to target Web-based support systems to different patient groups. LCA is a useful technique to identify subgroups of users. In our study, e-messages and self-management advice were highly used components for patients who had low levels of social support and high illness burden, suggesting that patients with these characteristics may find such tools particularly useful. Trial Registration ClinicalTrials.gov NCT00710658; http://clinicaltrials.gov/ct2/show/NCT00710658 (Archived by WebCite at http://www.webcitation.org/6EmEWZiwz)