Patients with cancer often experience multiple symptoms, problems and concerns during their treatment and rehabilitation [1], [2]. To effectively help patients manage their illness, clinicians need to understand how patients experience their disease and symptoms, as well as any problems, concerns, and care preferences they may have. The Quality Chasm report from the Institute of Medicine defined patient-centered care as care that is “respectful of and responsive to individual patients’ preferences, needs and values, and ensuring that patient values guide all clinical decisions” [3] (p6). Patient-centered care improves disease outcomes and quality of life [4]. Patient-centered communication is a critical element of patient-centered care [4], [5], [6], and essential for knowing the person behind the patient, in order to reach a shared understanding of the patients’ problems, preferences and needs [6], [7]. Through patient-centered communication the patient is activated and the foundation is laid for a partnership that includes sharing of information, shared deliberation, and shared decision making [6].
Despite evidence of the benefits of patient-centered care and communication [4], [8], [9], there are significant challenges to integrating patient-centered communication in clinical practice [5], [6]. Although care providers may endorse the notion of patient-centered care as a way to engage the patient as an active partner in his/her care and treatment, care is still often based on routines and offers few opportunities to establish meaningful patient–provider relationships [5], [6]. Frequently, clinicians also have incomplete understandings of patients’ needs, and thus are unable to provide the information and care that patients find useful [5]. Patients, on the other hand, may have poor knowledge about their disease and its symptoms, or be unable to articulate their beliefs, values, information needs and preferences. Investments in infrastructure and information technology are described as important to foster an environment that enables patient-centered care [4].
Choice is an interactive tailored patient assessment and communication (ITPA) tool for cancer patients designed to overcome these pitfalls. Its purpose is twofold: (a) to help patients report their experienced symptoms, problems, and priorities for care and (b) to support clinicians in providing individually tailored symptom management support [10]. The content of the Choice intervention is based on a thorough review of the literature on symptoms, problems and symptom management in patients with cancer, on oncology expert focus groups and on interviews with patients [10].
Using Choice, patients report their symptoms and health problems along physical, functional, and psychosocial dimensions, note down their degree of distress or affliction, and prioritize their need for care for their symptoms. The assessment is individually tailored to each patient based on his/her initial response. It allows patients to branch into those aspects that are personally relevant while skipping those that are not. For example, patients first select from problem categories those that apply to them, and this opens up a subset of more specific symptom descriptions in lay terms from which patients again select those that apply. They then rate degree of distress of their selected symptoms on a scale of 0–4 (not troublesome to extremely troublesome) and prioritize needs for support to manage their symptoms on a scale of 0–10 (receiving support not important to extremely important). When the patient has finished, the system immediately creates an assessment summary that displays patients’ selected symptoms and distress, in rank-order of prioritized need for care (Fig. 1, summary), thereby directing the clinician's attention to the problems that matter most to each patient. The summary is transferred to the hospital's electronic system, from which it can be accessed. The patient receives a copy. Because patients can complete the assessment on their own at their own pace prior to being seen by a clinician, the assessment itself does not take up clinician time. Results can be used to assist care providers to better tailor symptom management and care individually to each patient and to support person-centered communication. Development of the Choice application for cancer patients [11], [12], and a demonstration of its validity and reliability are presented in detail elsewhere [13].
The Choice ITPA has been shown in clinical trials to significantly decrease cancer patients’ symptom distress over the course of their illness, reduce patients’ needs for care, increase disclosure of patients’ cues and concerns in communication with clinicians, and increase the number of symptoms and quality of life issues addressed in patient consultations [10], [14], [15], [16]. The system received high ratings on usefulness by patients, nurses and physicians in a survey after the trial period [17]. Patients who had used Choice reported increased self-awareness and knowledge about the illness, improved communication and information sharing with health care providers and increased sense of coherence and control [18].
The clinicians at the hospital units who participated in the randomized controlled trial that demonstrated positive effects of Choice in terms of reduced symptom distress and need for care [10] decided to use the application as part of routine practice. However, to be successful, interventions found to be effective in clinical trials must also be possible to implement and maintain in routine care. Putting new computerized tools to use in clinical practice is described as challenging [19], [20], [21], [22]. For example, a study done at a palliative unit where an electronic assessment tool was being implemented reported perceived difficulties related to establishing new routines, increased workload, technology issues, increased burden for patients, and ethical issues due to concerns about whether or not the system would actually benefit the patients [21]. Functional and technological issues, the users’ desire for more in-depth information, user privacy concerns, and limited patient use are other challenges noted when implementing new systems in clinical practice [23]. However, while a number of studies have addressed aspects of system implementation, less research has examined the challenges that may emerge over time or the impact of new interventions after they have been implemented [24].
After the Choice ITPA was implemented into regular practice, the main clinical users were nurses. Therefore, the current study explores nurses’ experiences of benefits of and barriers to maintaining use of Choice in cancer care one year after its implementation.
The introduction of a system such as Choice in cancer care can be viewed as implementing a new innovation into existing routines. According to Roger's theory of diffusion of innovations [25], users’ willingness to implement an innovation depend on five attributes of the innovation: (1) relative advantage, the degree to which the innovation is perceived as being better than what it supersedes, (2) compatibility with existing values, experiences and needs, (3) complexity, (4) ability to be tested, and (5) visibility of results. The findings in this study will be discussed in light of these attributes.