Creating Gameful Design in mHealth: A Participatory Co-Design Approach.

BACKGROUND: Gameful designs (gamification), using design pieces and concepts typically found in the world of games, is a promising approach to increase users' engagement with, and adherence to, electronic health and mobile health (mHealth) tools. Even though both identifying and addressing users' requirements and needs are important steps of designing information technology tools, little is known about the users' requirements and preferences for gameful designs in the context of self-management of chronic conditions. OBJECTIVE: This study aimed to present findings as well as the applied methods and design activities from a series of participatory design workshops with patients with chronic conditions, organized to generate and explore user needs, preferences, and ideas to the implementation of gameful designs in an mHealth self-management app. METHODS: We conducted three sets of two consecutive co-design workshops with a total of 22 participants with chronic conditions. In the workshops, we applied participatory design methods to engage users in different activities such as design games, scenario making, prototyping, and sticky notes exercises. The workshops were filmed, and the participants' interactions, written products, ideas, and suggestions were analyzed thematically. RESULTS: During the workshops, the participants identified a wide range of requirements, concerns, and ideas for using the gameful elements in the design of an mHealth self-management app. Overall inputs on the design of the app concerned aspects such as providing a positive user experience by promoting collaboration and not visibly losing to someone or by designing all feedback in the app to be uplifting and positive. The participants provided both general inputs (regarding the degree of competitiveness, use of rewards, or possibilities for customization) and specific inputs (such as being able to customize the look of their avatars or by having rewards that can be exchanged for real-world goods in a gift shop). However, inputs also highlighted the importance of making tools that provide features that are meaningful and motivating on their own and do not only have to rely on gameful design features to make people use them. CONCLUSIONS: The main contribution in this study was users' contextualized and richly described needs and requirements for gamefully designed mHealth tools for supporting chronic patients in self-management as well as the methods and techniques used to facilitate and support both the participant's creativity and communication of ideas and inputs. The range, variety, and depth of the inputs from our participants also showed the appropriateness of our design approach and activities. These findings may be combined with literature and relevant theories to further inform in the selection and application of gameful designs in mHealth apps, or they can be used as a starting point for conducting more participatory workshops focused on co-designing gameful health apps.

Personal strengths reported by people with chronic illness: A qualitative study.

BACKGROUND: Self-management of chronic illness can be highly demanding and people need to mobilize their personal strengths to live well with their condition. More knowledge is needed about how people with chronic illness perceive and use their personal strengths as a basis for better integrating empowering person-centred approaches into health care. OBJECTIVE: To explore what people with chronic illness describe as their strengths relevant to their health and well-being. SETTING AND PARTICIPANTS: Thirty-nine participants (11 men) from 4 outpatient self-management programmes were recruited to individual or group interviews. Participants included patients with chronic respiratory disease (n = 7), chronic pain (n = 18) and morbid obesity (n = 14). Interviews were analysed using content analysis. RESULTS: A number of personal strengths were reported and categorized into 3 domains: (i) Internal strengths, (ii) External strengths and (iii) Self-management strategies. Internal strengths included being persistent, having a positive outlook, being kind and caring, experiencing positive emotions, being kind towards oneself, reconciling oneself with the situation, having courage and having knowledge and insight. External strengths included support from family, friends, peers and health-care providers. Self-management strategies included being active, planning and prioritizing, reducing stress, goal setting and seeking knowledge and help. DISCUSSION AND CONCLUSION: The study provides insights into personal strengths as reported by people with chronic illness. The results complement prior findings on strengths in people with health challenges and can aid in incorporating person-centred approaches into health care.

Developing Technology to Mobilize Personal Strengths in People with Chronic Illness: Positive Codesign Approach.

BACKGROUND: Emerging research from psychology and the bio-behavioral sciences recognizes the importance of supporting patients to mobilize their personal strengths to live well with chronic illness. Positive technology and positive computing could be used as underlying design approaches to guide design and development of new technology-based interventions for this user group that support mobilizing their personal strengths. OBJECTIVE: A codesigning workshop was organized with the aim to explore user requirements and ideas for how technology can be used to help people with chronic illness activate their personal strengths in managing their everyday challenges. METHODS: Thirty-five participants from diverse backgrounds (patients, health care providers, designers, software developers, and researchers) participated. The workshop combined principles of (1) participatory and service design to enable meaningful participation and collaboration of different stakeholders and (2) an appreciative inquiry methodology to shift participants' attention to positive traits, values, and aspects that are meaningful and life-giving and stimulate participants' creativity, engagement, and collaboration. Utilizing these principles, participants were engaged in group activities to develop ideas for strengths-supportive tools. Each group consisted of 3-8 participants with different backgrounds. All group work was analysed using thematic analyses. RESULTS: Participants were highly engaged in all activities and reported a wide variety of requirements and ideas, including more than 150 personal strength examples, more than 100 everyday challenges that could be addressed by using personal strengths, and a wide range of functionality requirements (eg, social support, strength awareness and reflection, and coping strategies). 6 concepts for strength-supportive tools were created. These included the following: a mobile app to support a person to store, reflect on, and mobilize one's strengths (Strengths treasure chest app); "empathy glasses" enabling a person to see a situation from another person's perspective (Empathy Simulator); and a mobile app allowing a person to receive supportive messages from close people in a safe user-controlled environment (Cheering squad app). Suggested design elements for making the tools engaging included: metaphors (eg, trees, treasure island), visualization techniques (eg, dashboards, color coding), and multimedia (eg, graphics). Maintaining a positive focus throughout the tool was an important requirement, especially for feedback and framing of content. CONCLUSIONS: Combining participatory, service design, and appreciative inquiry methods were highly useful to engage participants in creating innovative ideas. Building on peoples' core values and positive experiences empowered the participants to expand their horizons from addressing problems and symptoms, which is a very common approach in health care today, to focusing on their capacities and that which is possible, despite their chronic illness. The ideas and user requirements, combined with insights from relevant theories (eg, positive technology, self-management) and evidence from the related literature, are critical to guide the development of future more personalized and strengths-focused self-management tools.

Transitions from biomedical to recovery-oriented practices in mental health: a scoping review to explore the role of Internet-based interventions.

BACKGROUND: The Internet is transforming mental health care services by increasing access to, and potentially improving the quality of, care. Internet-based interventions in mental health can potentially play a role in transitions from biomedical to recovery-oriented research and practices, but an overview of what this may entail, current work, and issues that need addressing, is lacking. The objective of this study is to describe Internet-based recovery-oriented interventions (referred to as e-recovery) and current research, and to identify gaps and issues relevant to advancing recovery research and practices through opportunities provided by the Internet. METHODS: Five iterative stages of a scoping review framework were followed in searching and analyzing the literature. A recovery framework with four domains and 16 themes was used to deductively code intervention characteristics according to their support for recovery-oriented practices. Only Internet-based interventions used in conjunction with ongoing care were included. RESULTS: Twenty studies describing six e-recovery interventions were identified and originated in Australia, Finland, the Netherlands, Norway and USA. The domain supporting personal recovery was most clearly reflected in interventions, whereas the last three domains, i.e., promoting citizenship, organizational commitment and working relationship were less evident. Support for the formulation and follow-up of personal goals and preferences, and in accessing peer-support, were the characteristics shared by most interventions. Three of the six studies that employed a comparison group used randomization, and none presented definitive findings. None used recovery-oriented frameworks or specific recovery outcome measures. Four of the interventions were specific to a diagnosis. CONCLUSION: Research about how technologies might aid in illuminating and shaping recovery processes is in its formative stages. We recommend that future e-recovery research and innovation attend to four dimensions: evidence-supported interventions, new knowledge about personal recovery, values-based approaches and Internet as a facilitator for organizational transformation. The incremental changes facilitated by e-recovery may help propel a shift in mental health care toward recovery-oriented practices.

Patient Insights Into the Design of Technology to Support a Strengths-Based Approach to Health Care.

BACKGROUND: An increasing number of research studies in the psychological and biobehavioral sciences support incorporating patients' personal strengths into illness management as a way to empower and activate the patients, thus improving their health and well-being. However, lack of attention to patients' personal strengths is still reported in patient-provider communication. Information technology (IT) has great potential to support strengths-based patient-provider communication and collaboration, but knowledge about the users' requirements and preferences is inadequate. OBJECTIVE: This study explored the aspirations and requirements of patients with chronic conditions concerning IT tools that could help increase their awareness of their own personal strengths and resources, and support discussion of these assets in consultations with health care providers. METHODS: We included patients with different chronic conditions (chronic pain, morbid obesity, and chronic obstructive pulmonary disease) and used various participatory research methods to gain insight into the participants' needs, values, and opinions, and the contexts in which they felt strengths-based IT tools could be used. RESULTS: Participants were positive toward using technology to support them in identifying and discussing their personal strengths in clinical consultation, but also underlined the importance of fitting it to their specific requirements and the right contexts of use. Participants recommended that technology be designed for use in preconsultation settings (eg, at home) and felt that it should support them in both identifying strengths and in finding out new ways how strengths can be used to attain personal health-related goals. Participants advocated use of technology to support advance preparation for consultations and empower them to take a more active role. IT tools were suggested to be potentially useful in specific contexts, including individual or group consultations with health care providers (physician, nurse, specialist, care team) in clinical consultations but also outside health care settings (eg, as a part of a self-management program). Participants' requirements for functionality and design include, among others: providing examples of strengths reported by other patients with chronic conditions, along with an option to extend the list with personal examples; giving an option to briefly summarize health-related history; using intuitive, easy-to-use but also engaging user interface design. Additionally, the findings are exemplified with a description of a low-fidelity paper prototype of a strengths-based tool, developed with participants in this study. CONCLUSIONS: Users requirements for IT support of a strengths-based approach to health care appear feasible. The presented findings reflect patients' values and lists potential contexts where they feel that technology could facilitate meaningful patient-provider communication that focuses not just on symptoms and problems, but also takes into account patients' strengths and resources. The findings can be used to inform further development of IT tools for use in clinical consultations.

Using the Consolidated Framework for Implementation Research to Identify Barriers and Facilitators for the Implementation of an Internet-Based Patient-Provider Communication Service in Five Settings: A Qualitative Study.

BACKGROUND: Although there is growing evidence of the positive effects of Internet-based patient-provider communication (IPPC) services for both patients and health care providers, their implementation into clinical practice continues to be a challenge. OBJECTIVE: The 3 aims of this study were to (1) identify and compare barriers and facilitators influencing the implementation of an IPPC service in 5 hospital units using the Consolidated Framework for Implementation Research (CFIR), (2) assess the ability of the different constructs of CFIR to distinguish between high and low implementation success, and (3) compare our findings with those from other studies that used the CFIR to discriminate between high and low implementation success. METHODS: This study was based on individual interviews with 10 nurses, 6 physicians, and 1 nutritionist who had used the IPPC to answer messages from patients. RESULTS: Of the 36 CFIR constructs, 28 were addressed in the interviews, of which 12 distinguished between high and low implementation units. Most of the distinguishing constructs were related to the inner setting domain of CFIR, indicating that institutional factors were particularly important for successful implementation. Health care providers' beliefs in the intervention as useful for themselves and their patients as well as the implementation process itself were also important. A comparison of constructs across ours and 2 other studies that also used the CFIR to discriminate between high and low implementation success showed that 24 CFIR constructs distinguished between high and low implementation units in at least 1 study; 11 constructs distinguished in 2 studies. However, only 2 constructs (patient need and resources and available resources) distinguished consistently between high and low implementation units in all 3 studies. CONCLUSIONS: The CFIR is a helpful framework for illuminating barriers and facilitators influencing IPPC implementation. However, CFIR's strength of being broad and comprehensive also limits its usefulness as an implementation framework because it does not discriminate between the relative importance of its many constructs for implementation success. This is the first study to identify which CFIR constructs are the most promising to distinguish between high and low implementation success across settings and interventions. Findings from this study can contribute to the refinement of CFIR toward a more succinct and parsimonious framework for planning and evaluation of the implementation of clinical interventions. CLINICALTRIAL: Clinicaltrials.gov NCT00971139; http://clinicaltrial.gov/ct2/show/NCT00971139 (Archived by WebCite at http://www.webcitation.org/6cWeqN1uY).

Recruitment challenges in clinical research including cancer patients and their caregivers. A randomized controlled trial study and lessons learned.

BACKGROUND: To test seven different strategies for recruitment in a randomized controlled trial, to report documented response data from each strategy, and to discuss recruitment challenges. METHODS: We used 5 opt-in (potential participants have to do something active to contact or be contacted by the researcher) and 2 opt-out (potential participants have the option to decline being contacted about a study) recruitment strategies from February 2013 until July 2014 to contact 1562 cancer patient candidates for participation in a randomized controlled trial. For each of these cancer patients a caregiver was also invited to take part in the study. RESULTS: Of the 1562 candidates, 22.6 % were ineligible on initial contact, 56.7 % declined to participate on initial contact, and 8.9 % agreed orally to participate but did not complete the enrollment. The 2 opt-out strategies, on-site recruitment and routine care letters recruitment, yielded the highest number of recruited participants with 79 dyads and 58 dyads respectively, constituting 42.7 % and 31.4 % of the total number of enrolled candidates. The 5 opt-in recruitment approaches yielded 49 dyads for the study. Almost half of these dyads were recruited using the approach termed "relying on providers at the hospital." CONCLUSIONS: In this study, opt-out recruitment strategies appeared to be the most effective. TRIAL REGISTRATION: Registration number NCT01867723 , registered February 2012.

Middle Managers' Experiences and Role in Implementing an Interactive Tailored Patient Assessment eHealth Intervention in Clinical Practice.

The role of nurse and physician managers is considered crucial for implementing eHealth interventions in clinical practice, but few studies have explored this. The aim of the current study was to examine the perceptions of nurse and physician managers regarding facilitators, barriers, management role, responsibility, and action taken in the implementation of an eHealth intervention called Choice into clinical practice. Individual qualitative interviews were conducted with six nurses and three physicians in management positions at five hospital units. The findings revealed that nurse managers reported conscientiously supporting the implementation, but workloads prevented them from participating in the process as closely as they wanted. Physician managers reported less contribution. The implementation process was influenced by facilitating factors such as perceptions of benefits from Choice and use of implementation strategies, along with barriers such as physician resistance, contextual factors and difficulties for front-line providers in learning a new way of communicating with the patients. The findings suggest that role descriptions for both nurse and physician managers should include implementation knowledge and implementation skills. Managers could benefit from an implementation toolkit. Implementation management should be included in management education for healthcare managers to prepare them for the constant need for implementation and improvement in clinical practice.

Evaluation of Sisom: A computer-based animated tool to elicit symptoms and psychosocial concerns from children with cancer.

PURPOSE: In pediatric oncology, clear communication regarding symptom occurrence between clinicians and children is essential in order to provide safe and effective care. Mobile technology provides a means to enhance the standard clinician-patient interview, particularly among children, who are well versed in the use of technology. To help children identify and voice their concerns in the health care setting, researchers created Sisom, an animated computer tool for children and young people with serious and chronic illnesses. The purposes of this study of 100 dyads of patients 7-12 years of age and their parents were to: compare participants' reports of symptom occurrence using Sisom to a standard symptom checklist and determine the time requirements, ease of use, and perceived usefulness of the Sisom tool by children with cancer and their parents. METHODS: Child and parent participants completed both Sisom and the Memorial Symptom Assessment Scale. Symptoms on the two tools were compared and 20 items were similar to allow for comparisons. RESULTS: Children reported a significantly higher number of these 20 symptoms using Sisom as compared to the MSAS (i.e., 6.8 versus 4.9 symptoms, p < 0.001). A similar pattern was noted for parental proxy reports (i.e., 8.7 versus 5.7 symptoms, p < 0.001). Sisom was completed in less than 30 min, with high ratings of ease of use and perceived usefulness from parent participants. CONCLUSIONS: Sisom provides a systematic and engaging method to elicit symptom reports from children for use in clinical care and research.

Comparing effects in regular practice of e-communication and Web-based self-management support among breast cancer patients: preliminary results from a randomized controlled trial.

BACKGROUND: While Web-based interventions have been shown to assist a wide range of patients successfully in managing their illness, few studies have examined the relative contribution of different Web-based components to improve outcomes. Further efficacy trials are needed to test the effects of Web support when offered as a part of routine care. OBJECTIVE: Our aim was to compare in regular care the effects of (1) an Internet-based patient provider communication service (IPPC), (2) WebChoice, a Web-based illness management system for breast cancer patients (IPPC included), and (3) usual care on symptom distress, anxiety, depression, (primary outcomes), and self-efficacy (secondary outcome). This study reports preliminary findings from 6 months' follow-up data in a 12-month trial. METHODS: We recruited 167 patients recently diagnosed with breast cancer and undergoing treatment from three Norwegian hospitals. The nurse-administered IPPC allowed patients to send secure e-messages to and receive e-messages from health care personnel at the hospital where they were treated. In addition to the IPPC, WebChoice contains components for symptom monitoring, tailored information and self-management support, a diary, and communication with other patients. A total of 20 care providers (11 nurses, 6 physicians, and 3 social workers) were trained to answer questions from patients. Outcomes were measured with questionnaires at study entry and at study months 2, 4, and 6. Linear mixed models for repeated measures were fitted to compare effects on outcomes over time. RESULTS: Patients were randomly assigned to the WebChoice group (n=64), the IPPC group (n=45), or the usual care group (n=58). Response rates to questionnaires were 73.7% (123/167) at 2 months, 65.9 (110/167) at 4 months, and 62.3% (104/167) at 6 months. Attrition was similar in all study groups. Among those with access to WebChoice, 64% (41/64) logged on more than once and 39% (25/64) sent e-messages to care providers. In the IPPC group, 40% (18/45) sent e-messages. Linear mixed models analyses revealed that the WebChoice group reported significantly lower symptom distress (mean difference 0.16, 95% CI 0.06-0.25, P=.001), anxiety (mean difference 0.79, 95% CI 0.09-1.49, P=.03), and depression (mean difference 0.79, 95% CI 0.09-1.49, P=.03) compared with the usual care group. The IPPC group reported significant lower depression scores compared with the usual care group (mean difference 0.69, 95% CI 0.05-1.32, P=.03), but no differences were observed for symptom distress or anxiety. No significant differences in self-efficacy were found among the study groups. CONCLUSIONS: In spite of practice variations and moderate use of the interventions, our results suggest that offering Web support as part of regular care can be a powerful tool to help patients manage their illness. Our finding that a nurse-administered IPPC alone can significantly reduce depression is particularly promising. However, the multicomponent intervention WebChoice had additional positive effects. TRIAL REGISTRATION: Clinicaltrials.gov:NCT00971009; http://clinicaltrials.gov/show/NCT00971009 (Archived by WebCite at http://www.webcitation.org/6USKezP0Y).

Health care professionals' perspectives of the experiences of family caregivers during in-patient cancer care.

Being a family member of a patient who is being treated in an acute care setting for cancer often involves a number of challenges. Our study describes Norwegian cancer care health professionals' perceptions of family members who served as family caregivers (FCs) and their need for support during the in-hospital cancer treatment of their ill family member. Focus group discussions were conducted with a multidisciplinary team of 24 experienced social workers, physicians, and nurses who were closely involved in the patients' in-hospital cancer treatment and care. Drawing on qualitative hermeneutic analysis, four main themes describe health professionals' perceptions of FCs during the patient's in-hospital cancer care: an asset and additional burden, infinitely strong and struggling with helplessness, being an outsider in the center of care, and being in different temporalities. We conclude that it is a challenge for health care professionals to support the family and create room for FC's needs in acute cancer care. System changes are needed in health care, so that the patient/FC dyad is viewed as a unit of care in a dual process of caregiving, which would enable FCs to be given space and inclusion in care, with their own needs simultaneously considered alongside those of the patient.

Supporting cancer patients in illness management: usability evaluation of a mobile app.

BACKGROUND: Mobile phones and tablets currently represent a significant presence in people's everyday lives. They enable access to different information and services independent of current place and time. Such widespread connectivity offers significant potential in different app areas including health care. OBJECTIVE: Our goal was to evaluate the usability of the Connect Mobile app. The mobile app enables mobile access to the Connect system, an online system that supports cancer patients in managing health-related issues. Along with symptom management, the system promotes better patient-provider communication, collaboration, and shared decision making. The Connect Mobile app enables access to the Connect system over both mobile phones and tablets. METHODS: The study consisted of usability tests of a high fidelity prototype with 7 cancer patients where the objectives were to identify existing design and functionality issues and to provide patients with a real look-and-feel of the mobile system. In addition, we conducted semistructured interviews to obtain participants' feedback about app usefulness, identify the need for new system features and design requirements, and measure the acceptance of the mobile app and its features within everyday health management. RESULTS: The study revealed a total of 27 design issues (13 for mobile apps and 14 for tablet apps), which were mapped to source events (ie, errors, requests for help, participants' concurrent feedback, and moderator observation). We also applied usability heuristics to identify violations of usability principles. The majority of violations were related to enabling ease of input, screen readability, and glanceability (15 issues), as well as supporting an appropriate match between systems and the real world (7 issues) and consistent mapping of system functions and interactions (4 issues). Feedback from participants also showed the cancer patients' requirements for support systems and how these needs are influenced by different context-related factors, such as type of access terminal (eg, desktop computer, tablet, mobile phone) and phases of illness. Based on the observed results, we proposed design and functionality recommendations that can be used for the development of mobile apps for cancer patients to support their health management process. CONCLUSIONS: Understanding and addressing users' requirements is one of the main prerequisites for developing useful and effective technology-based health interventions. The results of this study outline different user requirements related to the design of the mobile patient support app for cancer patients. The results will be used in the iterative development of the Connect Mobile app and can also inform other developers and researchers in development, integration, and evaluation of mobile health apps and services that support cancer patients in managing their health-related issues.

Reducing errors through a web-based self-management support system.

Web-based self-management support systems SMSS, can successfully assist a wide range of patients with information and self-management support. O or as a stand-alone service, are e-messages. This study describes how one component of a multi component SMSS, an e-message service, in which patients with breast cancer could direct questions to nurses, physicians or social workers at the hospital where they were being treated, had an influence on safety and continuity of care. Ninety-one dialogues consisting of 284 messages were analysed. The communications between patients and the healthcare team revealed that the e-messages service served as a means for quality assurance of information, for double-checking and for coordination of care. We give examples of how an e-mail service may improve patients' knowledge in a process of taking control over their own care - increasingly important in a time of growing complexity and specialization in healthcare. It remains to be tested whether an e-message service can improve continuity of care and prevent or mitigate medical mishaps.

Living close to a person with cancer: a review of the international literature and implications for social work practice.

To help family caregivers (FCs), social workers need to understand the complexity of FC's experiences and challenges. For this systematic review, several relevant, multidisciplinary electronic databases were searched. Of 1,643 titles identified, 108 articles met the inclusion criteria and are included in this review. Various experiences, symptoms, and burden related to caregiving responsibilities are described and discussed. The understanding evolving from this study about the FC's own health risk, caregiver burden, and experiences over time can enhance a social worker's awareness of an FC's challenging situation and the potential impact this has on the FC's ability to provide care to the patient.

Nurses' experiences of using an interactive tailored patient assessment tool one year past implementation.

BACKGROUND: Despite evidence of benefits, integration of patient-centered communication in clinical practice is challenging. Interactive tailored patient assessment (ITPA) tools can contribute to a more patient-centered care approach. However, little research has examined the impact of such tools on nursing care once they have been implemented. OBJECTIVE: To explore nurses' experiences of the benefits of and barriers to using an ITPA called Choice, in cancer care one year after its implementation. METHODS: This investigation is a part of a larger study examining the use of Choice in cancer care. Four focus group interviews were conducted with 20 nurses experienced in using the Choice application. The data were analyzed using qualitative content analysis. RESULTS: Three themes and nine sub-themes emerged: (1) "Choice as facilitator for shared understanding and engagement in patients' own care," with three sub-themes: preparing both patient and nurse for communication, shared engagement in care planning, and giving the patients a voice; (2) "enhancing the patients' strengths," with two sub-themes: releasing patient's internal strengths and confirming "normalcy" for the patient; and (3) "new challenges for the nurse," with four sub-themes: organizational challenges, interactions with technology, a need for training in communication skills, and new ethical challenges. CONCLUSIONS: Findings suggest that, from nurses' perspectives, integration of ITPAs such as Choice in clinical practice offers many benefits that can contribute to patient-centered care. However, to reap these benefits, use of such tools must receive equal priority as other routines, and require sufficient time, space and competence. Choice also challenged nurses' professional roles and created dilemmas such as nurses' ambivalence regarding patients' levels of disclosure of sensitive issues and the nurses' ability to respond to them. Although patient-centered care is advocated as model for good clinical practice, this is not always internalized. Tools such as Choice may help to make such a shift happen.

Patients' reported reasons for non-use of an internet-based patient-provider communication service: qualitative interview study.

BACKGROUND: The adoption of Internet-based patient-provider communication services (IPPC) in health care has been slow. Patients want electronic communication, and the quality of health care can be improved by offering such IPPCs. However, the rate of enrollment in such services remains low, and the reasons for this are unclear. Knowledge about the barriers to use is valuable during implementation of IPPCs in the health care services, and it can help timing, targeting, and tailoring IPPCs to different groups of patients. OBJECTIVE: The goal of our study was to investigate patients' views of an IPPC that they could use from home to pose questions to nurses and physicians at their treatment facility, and their reported reasons for non-use of the service. METHODS: This qualitative study was based on individual interviews with 22 patients who signed up for, but did not use, the IPPC. RESULTS: Patients appreciated the availability and the possibility of using the IPPC as needed, even if they did not use it. Their reported reasons for not using the IPPC fell into three main categories: (1) they felt that they did not need the IPPC and had sufficient access to information elsewhere, (2) they preferred other types of communication such as telephone or face-to-face contact, or (3) they were hindered by IPPC attributes such as login problems. CONCLUSIONS: Patients were satisfied with having the opportunity to send messages to health care providers through an IPPC, even if they did not use the service. IPPCs should be offered to the patients at an appropriate time in the illness trajectory, both when they need the service and when they are receptive to information about the service. A live demonstration of the IPPC at the point of enrollment might have increased its use. TRIAL REGISTRATION: ClinicalTrials.gov NCT00971139; http://clinicaltrial.gov/ct2/show/NCT00971139 (Archived by WebCite at http://www.webcitation.org/6KlOiYJrW).

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).

Evaluation of different features of an eHealth application for personalized illness management support: cancer patients' use and appraisal of usefulness.

OBJECTIVE: The purpose of this paper was to describe patients' use of a multi-component eHealth application, WebChoice, designed to support cancer patients in illness management. With WebChoice patients can monitor their symptoms, obtain individually tailored, evidence-based self-management support, ask questions to a clinical nurse specialist, communicate with other patients in a Forum, and use a diary. METHODS: To better understand what components were most helpful, we analyzed user logs of breast and prostate cancer patients who participated in the experimental arm of an RCT to test effects of WebChoice on clinical outcomes. Patients could freely use the system for one year. After 6 months into the study, participants received questionnaires asking about reasons for using the different WebChoice components and their usefulness. RESULTS: 103 (64%) patients actively used WebChoice, on average 60 times. The Forum and asking questions to the nurse were used the most, yet there were large individual variations in use patterns. Also, patients used different WebChoice components for different reasons. The e-mail communication with nurses was valued highest. DISCUSSION: Differences were found between breast and prostate cancer patients and between patients with a first time diagnosis and metastases or recurrences. The large variations among patients in their use of WebChoice components demonstrate that patients' needs for support vary. CONCLUSION: The use patterns and patients' appraisals of usefulness in this study provide important insights into cancer patients' information and communication behavior that are important for further improvements and the design of eHealth applications for illness management support.