Thresholds for clinical importance for four key domains of the EORTC QLQ-C30: physical functioning, emotional functioning, fatigue and pain.

BACKGROUND: The EORTC QLQ-C30 is one of the most widely used quality of life questionnaires in cancer research. Availability of thresholds for clinical importance for the individual questionnaire domains could help to increase its interpretability. The aim of our study was to identify thresholds for clinical importance for four EORTC QLQ-C30 scales: Physical Functioning (PF), Emotional Functioning (EF), Pain (PA) and Fatigue (FA). METHODS: We recruited adult cancer patients from Austria, the Netherlands, Poland and the UK. No restrictions were placed on diagnosis or type or stage of treatment. Patients completed the QLQ-C30 and three anchor items reflecting potential attributes of clinically important levels of PF, EF, PA and FA. We merged the anchor items assessing perceived burden, limitations in daily activities and need for help into a dichotomous external criterion to estimate thresholds for clinical importance using Receiver Operator Characteristic (ROC) analysis. RESULTS: In our sample of 548 cancer patients (mean age 60.6 years; 54 % female), the QLQ-C30 scales showed high diagnostic accuracy in identifying patients reporting burden, limitations and/or need for help related to PF, EF, PA and FA. All areas under the curve were above 0.86. CONCLUSIONS: We were able to estimate thresholds for clinical importance for four QLQ-C30 scales. When used in daily clinical practice, these thresholds can help to identify patients with clinically important problems requiring further exploration and possibly intervention by health care professionals.

An interactive portal to empower cancer survivors: a qualitative study on user expectations.

PURPOSE: Portals are increasingly used to improve patient empowerment, but are still uncommon in oncology. In this study, we explored cancer survivors' and health professionals' expectations of possible features of an interactive portal. METHODS: We conducted three focus groups with breast cancer survivors (n = 21), two with lung cancer survivors (n = 14), and four with health professionals (n = 31). Drafts of possible features of an interactive portal were presented as static screenshots: survivorship care plan (SCP), access to electronic medical record (EMR), appointments, e-consultation, online patient community, patient reported outcomes (PROs) plus feedback, telemonitoring service, online rehabilitation program, and online psychosocial self-management program. This presentation was followed by an open discussion. Focus groups were audiotaped, transcribed verbatim, and data were analyzed using content analysis. RESULTS: Important themes included fulfillment of information needs, communication, motivation, quality of feedback, and supervision. Cancer survivors were primarily interested in features that could fulfill their information needs: SCP, access to their EMR, and an overview of appointments. Health professionals considered PROs and telemonitoring as most useful features, as these provide relevant information about survivors' health status. We recommend to minimally include these features in an interactive portal for cancer survivors. CONCLUSIONS: This is the first study that evaluated the expectations of cancer survivors and health professionals concerning an interactive portal. Both groups were positive about the introduction of such a portal, although their preferences for the various features differed. These findings reflect their unique perspective and emphasize the importance of involving multiple stakeholders in the actual design process.

Empowerment of Cancer Survivors Through Information Technology: An Integrative Review.

BACKGROUND: Patient empowerment may be an effective approach to strengthen the role of cancer survivors and to reduce the burden on health care. However, it is not well conceptualized, notably in oncology. Furthermore, it is unclear to what extent information technology (IT) services can contribute to empowerment of cancer survivors. OBJECTIVE: We aim to define the conceptual components of patient empowerment of chronic disease patients, especially cancer survivors, and to explore the contribution of existing and new IT services to promote empowerment. METHODS: Electronic databases were searched to identify theoretical and empirical articles regarding empowerment. We extracted and synthesized conceptual components of patient empowerment (ie, attributes, antecedents, and consequences) according to the integrated review methodology. We identified recent IT services for cancer survivors by examining systematic reviews and a proposed inventory of new services, and we related their features and effects to the identified components of empowerment. RESULTS: Based on 26 articles, we identified five main attributes of patient empowerment: (1) being autonomous and respected, (2) having knowledge, (3) having psychosocial and behavioral skills, (4) perceiving support from community, family, and friends, and (5) perceiving oneself to be useful. The latter two were specific for the cancer setting. Systematic reviews of IT services and our additional inventory helped us identify five main categories: (1) educational services, including electronic survivorship care plan services, (2) patient-to-patient services, (3) electronic patient-reported outcome (ePRO) services, (4) multicomponent services, and (5) portal services. Potential impact on empowerment included knowledge enhancement and, to a lesser extent, enhancing autonomy and skills. Newly developed services offer promising and exciting opportunities to empower cancer survivors, for instance, by providing tailored advice for supportive or follow-up care based on patients' input. CONCLUSIONS: We identified five main components of empowerment and showed that IT services may especially contribute to empowerment by providing knowledge. The components of empowerment could be used to develop IT services for cancer survivors. It is important to take into account patients' needs, follow up on these needs, and create a service that is attractive and easy to use.

A systematic review of web-based interventions for patient empowerment and physical activity in chronic diseases: relevance for cancer survivors.

BACKGROUND: Patient empowerment reflects the ability of patients to positively influence their health and health behavior such as physical activity. While interactive Web-based interventions are increasingly used in various chronic disease settings to enhance empowerment and physical activity, such interventions are still uncommon for cancer survivors. OBJECTIVE: The objective of this study was to systematically review the literature regarding interactive Web-based interventions. We focused on interventions aimed at increasing patient empowerment and physical activity for various chronic conditions, and explored their possible relevance for cancer survivors. METHODS: Searches were performed in PubMed, Embase, and Scopus to identify peer-reviewed papers reporting on randomized controlled trials that studied the effects of Web-based interventions. These interventions were developed for adults with diabetes, cardiovascular disease, chronic obstructive pulmonary disease, heart failure, or cancer. Intervention characteristics, effects on patient empowerment and physical activity, information on barriers to and facilitators of intervention use, users' experiences, and methodological quality were assessed. Results were summarized in a qualitative way. We used the recommendations of the Institute of Medicine (IOM) regarding cancer survivorship care to explore the relevance of the interventions for cancer survivors. RESULTS: We included 19 papers reporting on trials with 18 unique studies. Significant, positive effects on patient empowerment were reported by 4 studies and 2 studies reported positive effects on physical activity. The remaining studies yielded mixed results or no significant group differences in these outcomes (ie, no change or improvement for all groups). Although the content, duration, and frequency of interventions varied considerably across studies, commonly used elements included education, self-monitoring, feedback/tailored information, self-management training, personal exercise program, and communication (eg, chat, email) with either health care providers or patients. Limited information was found on barriers, facilitators, and users' experiences. Methodological quality varied, with 13 studies being of moderate quality. The reported Web-based intervention elements appeared to be highly relevant to address the specific needs of cancer survivors as indicated by the IOM. CONCLUSIONS: We identified 7 common elements of interactive, Web-based interventions in chronic disease settings that could possibly be translated into eHealth recommendations for cancer survivors. While further work is needed to determine optimal intervention characteristics, the work performed in other chronic disease settings provides a basis for the design of an interactive eHealth approach to improve patient empowerment and physical activity in cancer survivors. This may subsequently improve their health status and quality of life and reduce their need for supportive care.

Supporting Lung Cancer Patients With an Interactive Patient Portal: Feasibility Study.

BACKGROUND: MyAVL is an interactive portal for cancer patients that aims to support lung cancer patients. OBJECTIVE: We aimed to evaluate the feasibility and usability of the patient portal and generate preliminary evidence on its impact. METHODS: Lung cancer patients currently or recently treated with curative intent could use MyAVL noncommittally for 4 months. Feasibility, usability, and preliminary impact (ie, patient activation, quality of life, and physical activity) were studied by means of questionnaires, a focus group, and analysis of user log data. RESULTS: We included 37 of 123 eligible patients (mean age 59.6 years). The majority of responses (82%) were positive about using MyAVL, 69% saw it as a valuable addition to care, and 56% perceived increased control over their health. No positive effects could be substantiated on the impact measures. CONCLUSIONS: MyAVL appears to be a feasible and user-friendly, multifunctional eHealth program for a selected group of lung cancer patients. However, it needs further improvements to positively impact patient outcomes.

eHealth for Breast Cancer Survivors: Use, Feasibility and Impact of an Interactive Portal.

BACKGROUND: MijnAVL is an interactive portal including patient education, overview of appointments, access to the electronic medical records (EMR), patient-reported outcomes, plus feedback and physical activity support. OBJECTIVE: With this study we aimed to evaluate the use, feasibility, and impact of MijnAVL among breast cancer survivors. METHODS: We included survivors currently or recently treated with curative intent, who completed questions on sociodemographics, patient activation (PAM), quality of life (SF-36), and physical activity (IPAQ). MijnAVL could be used noncommittally for four months. Log data were collected retrospectively and participants completed questions on acceptability, satisfaction, and the PAM, SF-36 and IPAQ. RESULTS: Ninety-two women (mean age 49.5 years, 59% on-treatment) participated, with a mean number of logins of 8.7. Overview of appointments (80% of participants) and access to the EMR (90%) were most frequently used and most highly valued. Average website user satisfaction was 3.8 on a 5-point scale. Although participants reported having more knowledge and experiencing more control of their situation after using MijnAVL, PAM scores did not change significantly. Three domains of the SF-36 (role functioning - emotional, mental health, and social functioning) and median vigorous physical activity improved significantly over time. The burden of MijnAVL for professionals was limited. CONCLUSIONS: User experiences were positive and exposure to MijnAVL was accompanied by improvements in three quality of life domains and vigorous physical activity. Tailored features may be needed to enhance the usefulness and efficacy of MijnAVL. Research with a controlled design is needed to confirm our findings.

Development of MijnAVL, an Interactive Portal to Empower Breast and Lung Cancer Survivors: An Iterative, Multi-Stakeholder Approach.

BACKGROUND: MijnAVL (MyAVL) is an interactive portal being developed to empower cancer survivors. Literature review and focus groups yielded the selection of features such as access to the electronic medical record (EMR), patient reported outcomes (PROs) and related feedback, and a physical activity support program. OBJECTIVE: Our aim was to present a final design of MijnAVL based on (1) health professionals' evaluation of proposed features, (2) cancer survivors' evaluation of a first draft, and (3) cancer survivors' evaluation of a functional online prototype. METHODS: Professionals from various disciplines gave input to the content of and procedures related to MijnAVL. Subsequently, 16 cancer survivors participated in an interview to evaluate content and graphic design of a first draft (shown with screenshots). Finally, 7 survivors participated in a usability test with a fully functional prototype. They performed predefined tasks (eg, logging in, finding a test result, completing a questionnaire) while thinking aloud. Descriptive statistics and simple content analysis were used to analyze the data of both the interviews and the usability tests. RESULTS: Professionals supported access to the EMR (eg, histology reports, lab results, and their letters to general practitioners). They also informed the development of PROs and the physical activity support program. Based on the first draft, survivors selected the preferred graphic design, approved the features and provided suggestions for the content (eg, explanation of medical jargon, more concise texts, notification by emails). Usability tests revealed that it was relatively easy to navigate the website and use the different features. Recommendations included, among others, a frequently asked questions section and the use of hyperlinks between different parts of the website. CONCLUSIONS: The development of MijnAVL, an interactive portal to empower breast and lung cancer survivors, was performed iteratively and involved multiple groups of end-users. This approach resulted in a usable and understandable final version. Its effectiveness should be determined in further research.

Thoughts and attention of athletes under pressure: skill-focus or performance worries?

Choking under pressure in sport has been explained by either explicit attention to skill execution (self-focus theories), or attention to performance worries (distraction theories). The aim of the present study was to find out which focus of attention occurs most often when expert athletes perform under pressure. Two retrospective methods were employed, namely, verbal reports and concept mapping. In the verbal reports, 70 expert athletes indicated their main focus of attention when performing under high pressure in competition. For concept mapping seven expert athletes generated statements about their focus of attention in such high-pressure situations. These statements were clustered and rated on how often they occurred and how important they were for choking. Both methods revealed that under pressure attention of expert athletes was often focused on worries and hardly ever on movement execution. Furthermore, the athletes reported that they focused attention on external factors and that they reverted to positive monitoring in an attempt to maintain performance. These results are more in line with distraction theories than self-focus theories, suggesting that attention to performance worries rather than to skill execution generally explains choking.