Effect of a Website That Presents Patients’ Experiences on Self-Efficacy and Patient Competence of Colorectal Cancer Patients: Web-Based Randomized Controlled Trial

Abstract

BackgroundPatients often seek other patients’ experiences with the disease. The Internet provides a wide range of opportunities to share and learn about other people’s health and illness experiences via blogs or patient-initiated online discussion groups. There also exists a range of medical information devices that include experiential patient information. However, there are serious concerns about the use of such experiential information because narratives of others may be powerful and pervasive tools that may hinder informed decision making. The international research network DIPEx (Database of Individual Patients’ Experiences) aims to provide scientifically based online information on people’s experiences with health and illness to fulfill patients’ needs for experiential information, while ensuring that the presented information includes a wide variety of possible experiences.ObjectiveThe aim is to evaluate the colorectal cancer module of the German DIPEx website krankheitserfahrungen.de with regard to self-efficacy for coping with cancer and patient competence.MethodsIn 2015, a Web-based randomized controlled trial was conducted using a two-group between-subjects design and repeated measures. The study sample consisted of individuals who had been diagnosed with colorectal cancer within the past 3 years or who had metastasis or recurrent disease. Outcome measures included self-efficacy for coping with cancer and patient competence. Participants were randomly assigned to either an intervention group that had immediate access to the colorectal cancer module for 2 weeks or to a waiting list control group. Outcome criteria were measured at baseline before randomization and at 2 weeks and 6 weeksResultsThe study randomized 212 persons. On average, participants were 54 (SD 11.1) years old, 58.8% (124/211) were female, and 73.6% (156/212) had read or heard stories of other patients online before entering the study, thus excluding any influence of the colorectal cancer module on krankheitserfahrungen.de. No intervention effects were found at 2 and 6 weeks after baseline.ConclusionsThe results of this study do not support the hypothesis that the website studied may increase self-efficacy for coping with cancer or patient competencies such as self-regulation or managing emotional distress. Possible explanations may involve characteristics of the website itself, its use by participants, or methodological reasons. Future studies aimed at evaluating potential effects of websites providing patient experiences on the basis of methodological principles such as those of DIPEx might profit from extending the range of outcome measures, from including additional measures of website usage behavior and users’ motivation, and from expanding concepts, such as patient competency to include items that more directly reflect patients’ perceived effects of using such a website.Trial RegistrationClinicaltrials.gov NCT02157454; https://clinicaltrials.gov/ct2/show/NCT02157454 (Archived by WebCite at http://www.webcitation.org/6syrvwXxi)

Patient empowerment for cancer patients through a novel ICT infrastructure

“…In fact, in several cases, e.g. [17], evidences do not support the hypothesis that ICT tools used can indeed increase self-efficacy for comping with cancer mainly because of methodological reasons. Those surveys highlight the need for an integrated platform, developed based on a sound methodology, supporting the integration between the patients and health providers, focusing on patient empowerment, offering clinically validated information and support, and highlight the need for evaluation of the developed technologies.…”

Patient competence in the context of cancer: its dimensions and their relationships with coping, coping self-efficacy, fear of progression, and depression

“…Although the PCQ-57 has been used as an outcome in several intervention studies [ 31 – 33 ], albeit showing no effect, however, information on its construct validity and reliability has never again been provided since the initial study that had reported acceptable to good internal consistencies for its scales and small to medium correlations with global health status as an indicator of quality of life [ 23 ]. In addition, the relationship of PC with conceptually related constructs and potential psychosocial cancer outcomes has not been examined thus far.…”

Patientennarrative als Instrument zur Vorbereitung auf eine medizinische Rehabilitation: Der Erfahrungsbereich „Medizinische Reha“ auf der Website www.krankheitserfahrungen.de

“…krankheitserfahrungen.de). Die Evaluation bisheriger Themenbereiche der Web site www.krankheitserfahrungen.de zeigt, dass die präsentierte Information als Zugewinn zu bestehenden Informationsangeboten empfunden wird [13][14][15].…”