Older cancer patients’ information and communication needs: What they want is what they get?

Abstract

Objective

To evaluate what information and communication aspects older cancer patients (≥65) consider important in preparing for chemotherapy treatment (CT), the extent to which this corresponds with what oncology nurses consider important, and the extent to which nurses attend to these aspects during real-life educational visits in oncology.

Methods

The QUOTE^chemo was used to have patients (n = 116) and nurses (n = 123) rate the importance of 66 aspects of patient education. Subsequently, the implementation of these 66 aspects during videotaped nursing visits (n = 155) with older cancer patients receiving CT for the first time was examined.

Results

Older cancer patients attached most importance to ‘treatment-related information’, ‘rehabilitation information’, ‘affective communication’ and discussing ‘realistic expectations’. Nurses placed great importance to almost all aspects except to discussing ‘realistic expectations’. Discrepancies were found between expressed importance and the actual performance during the videotaped consultations, particularly in discussing realistic expectations, coping information, interpersonal communication, and tailored communication.

Conclusion

Results pointed to aspects that need improvement to ensure high quality patient education tailored to the patients’ needs.

Practice implications

To make sure older cancer patients’ needs are met, more attention should be paid to the development of interventions supporting both needs assessment and fulfillment.

Introduction

Effective communication surrounding treatment is considered to be the key to good cancer care. However, health care professionals frequently lack the communication skills needed to identify patients’ individual concerns and problems [1]. As a consequence, the information provided is often insufficiently tailored to the patients’ information and communication needs, resulting in unmet needs (see Hack et al. [2], for a review).

Cancer is frequently a disease of older adults and, due to population growth and aging, the number of new cancer patients is expected to double by the year 2050 [3], [4]. Older cancer patients are physiologically, psychologically, socially, economically and culturally heterogeneous, which pose challenges to the care, including patient education, for this growing segment of the population [5]. Communication with older cancer patients can be complicated by various age-related barriers [6], such as cognitive decline [7], sensory impairments [8] and patients’ beliefs, perceptions and knowledge about cancer [9]. Understanding older cancer patients’ information and communication needs and the extent to which these needs are fulfilled is essential, because not being well informed may affect patient outcomes negatively. According to the Elaboration-Likelihood Model, personal relevant information, i.e. information that is tailored to the patients’ needs, is processed more deeply and is therefore likely to improve knowledge and recall of information, i.e. remembering and reproduction [10], [11], [12]. This might, ultimately, contribute positively to patient satisfaction [13], treatment adherence [6], [13], [14], [15], disease management, anxiety [16], [17] and quality of life [18]. Although oncology patients in general continuously seem to have unmet needs [2] and unfulfilled information and communication needs influences quality of life more negatively in older compared to younger patients [18], little is known about the (unmet) information and communication needs of older cancer patients (≥65 years). In a recent systematic review of unmet support needs, including information and communication needs, it was found that the level of unmet needs in newly diagnosed older cancer patients undergoing active treatment was high, and the most common unmet needs were information and psychological needs. However, in only three out of 30 studies included in this review, the mean age was in the 70s, and only one study focused on older adults exclusively [19]. In an earlier literature review, no study could be identified that specifically addressed older cancer patients’ information and communication needs either [20]. Puts and colleagues [19] concluded that more research is needed that focuses on the needs of older adults specifically, as this is an understudied area.

Since the level of unmet needs is highest after diagnosis and start of treatment [19], [21], the current study focuses on needs fulfillment of older cancer patients in this particular stage of their disease. We choose to study chemotherapy treatment (CT), because CT is in the top-three of most used treatments for cancer [22]. Oncology nurses play an important role in patient education about CT by providing information about the treatment and (handling) potential side effects, especially at the beginning of CT. One of their tasks is to provide individualized instruction to patients newly diagnosed with cancer after a careful assessment of the patients’ needs [23], [24]. It can be assumed that the nurses’ opinion on which aspects are, in general, important to discuss during educational sessions preceding CT will influence the content of the consultation. It is therefore striking that, as far as we are aware, no previous studies compared the patients’ perspective with the nurses’ perspective and with actual patient education during consultations. To take all these perspectives into account, we built on an approach called QUOTE (QUality Of care Through the patients’ Eyes) [25], [26], [27], [28], [29]. According to this approach, quality of care is a multidimensional concept, based on a relationship between needs (or ‘expectations’) and performance (or ‘experiences’), in the current study being defined as the degree to which the providers’ information and communication performance meets the patients’ needs. To gain insight in unmet needs two indicators are used: ‘importance’, i.e. how significant a specific health care aspect is to patients, and ‘performance’, i.e. the actual experience of patients with that aspect. QUOTE questionnaires are standardized and validated surveys in which patients’ experiences with quality of care are conceptualized according to these importance and performance dimensions. When combined, these dimensions reflect what people see as desired qualities in health care [28], [29]. Generally, both dimensions are assessed by self-reported patient questionnaires. However, previous research indicates that the relationship between perceived information provision and actual information provision is weak [30]. As we were interested in what had actually been discussed during the consultation, we decided to make use of video observations to examine the performance dimension.

To summarize, this research aims to understand the information and communication needs of older cancer patients at the start of CT, the needs as perceived by their nurses, and the extent to which these needs are actually met during educational nursing visits in oncology. The study was conducted among cancer patients aged 65 years or older, because this cut-off point is frequently used to define older age [31], [32].