An Integrated Process and Outcome Evaluation of a Web-Based Communication Tool for Patients With Malignant Lymphoma: Randomized Controlled Trial.

BACKGROUND: The complex nature of the medical dialogue and the often emotional context in cancer care present challenges to health care professionals (HCPs) and patients. Patients are increasingly expected to be informed participants and to be able to make conscious decisions, which they often find very difficult. In an attempt to support patients with malignant lymphoma in clinical communication, we developed a stand-alone, Web-based intervention called "PatientTIME." The development of PatientTIME was based on a participatory intervention mapping framework. Its primary aim is to boost patients' self-efficacy in patient-professional communication (ie, their confidence when interacting with their HCP). Patients can use this intervention before their hospital visit to prepare for their clinical consultation. PatientTIME is fully automated and use is patient-initiated. OBJECTIVE: The aim of this study was to evaluate if and in what way patients benefit from PatientTIME and if it enhances their confidence in clinical communication. METHODS: The intervention was evaluated in a closed randomized controlled trial with continuous recruitment (using online and offline methods to reach potential participants) and data collection. In accordance with the Medical Research Council guidance, we started with a process evaluation. Subsequently, an outcome evaluation was performed focusing on the patients' perceived confidence in communication with their HCP, measured with the validated PEPPI questionnaire at baseline and at 3 months after participation. Process and outcome data were obtained through Web-based questionnaires, log files (automatically generated files mapping the interactions between program and users), and a logbook (comprising a record of actions and interactions kept by the researchers). Participants were not blinded. A total of 146 patients registered online, of whom 97 gave their informed consent and were assigned at random to the control group (N=34) or 1 of the 2 intervention groups (N=63). Ultimately 87/97 (90%) of these patients actually participated in the study, producing 87 datasets for analysis. RESULTS: More than half of the intervention group patients reported that the intervention helped them prepare for a clinical consultation; it created awareness about the importance of communication and reinforced their existing communication skills. In the postvisit test, the control group showed a small, nonsignificant improvement in perceived communication efficacy. The intervention group showed a significant improvement in perceived efficacy. However, the interaction effect was not significant, indicating that the improvement solely as a result of the intervention may not be significant. CONCLUSIONS: A considerable number of patients reported that PatientTIME did provide support. We found a trend indicating that in the long run, patients with access to PatientTIME scored better on the perceived efficacy scale than patients without access. However, at this stage we cannot conclude that PatientTIME improves patients' confidence when interacting with HCPs. CLINICALTRIAL: Netherlands National Trial Register (NTR): 3779; http://www.trialregister.nl/trialreg/admin/rctview.asp?TC=3779 (archived by WebCite at http://www.webcitation.org/6iztxJ5Nt).

Communication during haematological consultations; patients' preferences and professionals' performances.

Many patients with haematological malignancies experience barriers in clinical communication. Reaching effective communication is of great importance as it has been linked to a range of improved patient outcomes such as satisfaction, compliance to treatment, perceived quality of life and physical and mental health. To get a better understanding how communication in haematological consultations can be improved, the current study focussed on patients' preferences and perceived performances regarding the communicative behaviour of their health care professional. Secondly, the mediation of an online communication tool for patients was analysed. Within a controlled pre- post-test design, 78 datasets of clinical consultations could be analysed. Patients considered both affective and instrumental communication aspects important. The affective communication behaviour of the health care professional met the patients' pre-visit preferences well. In the information exchange, more variability and discrepancies were found. Overall, the online intervention did not seem to influence the patients' perceived communication performance of their health care professional much. To further improve the communication during clinical consultations, health care professionals should inquire about patients' expectations, especially during the exchange of information and advices. At the same time, patients should be supported to express their preferences at the start of the consultation. The study was registered in the Netherlands Trial Register, number 3779.

Active patient participation in the development of an online intervention.

BACKGROUND: An important and challenging part of living with cancer relates to the repeated visits to the hospital. Since how patients cope between these post-diagnostic visits depends partly on the information and support received from their physician during the visits, it is important to make the most of them. Recent findings reinforce the importance of training not only the health care professionals in communication skills, but providing patients with support in communication as well. Delivering such supportive interventions online can have potential benefits in terms of accessibility, cost-effectiveness, and ability to tailor information to personal needs. However, problems with attrition (dropout, non-usage) during the test phase and poor uptake after implementation are frequently reported. The marginal level of engagement of the patient as end user seems to play a role in this. Therefore, recent research suggests integrating theory-based development methods with methods that promote involvement of the patient at an early stage. This paper describes a participatory protocol, used to let patients guide a theory-informed development process. OBJECTIVE: The objective of this project was to apply a bottom-up inspired procedure to develop a patient-centered intervention with corresponding evaluation and implementation plan. METHODS: The applied development protocol was based on the intervention mapping framework, combined with patient participatory methods that were inspired by the participation ladder and user-centred design methods. RESULTS: The applied protocol led to a self-directed online communication intervention aimed at helping patients gain control during their communications with health care professionals. It also led to an evaluation plan and an implementation plan. The protocol enabled the continuous involvement of patient research partners and the partial involvement of patient service users, which led to valuable insights and improvements. CONCLUSIONS: The applied protocol realized patient participation on different levels throughout the entire project. Early involvement, involvement on different levels, and flexibility in terms of planning and setup seem to be preconditions to creating a bottom-up inspired development procedure with (seriously ill) patients. Further research is necessary to find out if a more patient-centered approach improves the implementation and uptake of eHealth interventions. TRIAL REGISTRATION: Netherlands National Trial Register ID number: NTR3779; http://www.trialregister.nl/trialreg/admin/rctview.asp?TC=3779 (Archived by WebCite at http://www.webcitation.org/6TdfALKxV).

Barriers and facilitators to effective communication experienced by patients with malignant lymphoma at all stages after diagnosis.

OBJECTIVE: This study aims to gain insight into patient-perceived communication barriers and facilitators at different stages after the diagnosis of malignant lymphoma. We have detected patterns to explain when these factors influence communication predominantly. METHOD: A qualitative approach was applied, derived from the context mapping framework. A total of 28 patients completed a set of assignments about their experiences with provider-patient communication during medical consultations. Subsequently, these patients and nine companions shared their experiences during a semistructured (group) interview, which was recorded on audiotape. The audiotapes and assignments were analysed with MAXQDA software. RESULTS: From the patients' viewpoint, communicating effectively appears to depend on their own attributes (e.g. emotions), the health care professionals' attributes (e.g. attitude) and external factors (e.g. time pressure). Three patient communication states were identified: (i) overwhelmed, passive; (ii) pro-active, self-motivated; and (iii) proficient, empowered. Patients seem to behave differently in the three communication states. CONCLUSIONS: This study lists patient-perceived communication barriers and facilitators and identifies three different communication states, which indicate when certain barriers and facilitators are encountered. PRACTICAL IMPLICATIONS: These findings may support health care professionals to tailor the provision of support and information and remove communication barriers accordingly. Additionally, they provide input for interventions to support patients in effective communication.