Older cancer patients’ information and communication needs: What they want is what they get?
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].
Section snippets
Design
The current study is part of a larger study in which the specific information and communication needs that have to be addressed in health education preceding CT in older cancer patients were examined, in order to develop and evaluate an intervention to improve the communication with older patients. The study was performed in twelve wards of ten Dutch hospitals. The main study used a randomized pre- and post-test design with measurements (i.e., video observations and questionnaires) at baseline
Response
In total, 361 patients were informed about the study and asked to give written consent. Eighteen patients did not meet the inclusion criteria and had to be excluded afterwards, leaving 343 eligible patients. Of these, 115 patients (33.5%) refused to participate. They felt it was too much (n = 69), were too tired or too ill (n = 10), did not want to be videotaped (n = 16) or had other reasons (n = 20). Eighteen patients (5.2%) could not be included due to logistical reasons (e.g. the ward forgot to
Discussion
Older cancer patients attached the most importance to ‘treatment-related information’, ‘rehabilitation information’ (i.e., the impact of treatment on daily life and how to deal with side effects at home), ‘affective communication’ and discussing ‘realistic expectations’. Nurses highly valued almost all aspects except discussing ‘realistic expectations’. Although both patients and nurses placed great importance to certain aspects, results pointed to impressive discrepancies between perceived
Funding
This study was funded by the Dutch Cancer Society (grant numbers NIVEL 2003-2973 and UVA 2010-4740). The Dutch Cancer Society approved the study design, but had no role in the collection, analysis and interpretation of data; in the writing of the report; and in the decision to submit the paper for publication.
Conflict of interest statement
None declared.
Acknowledgements
We thank all the patients and nurses who were willing to participate in this study. We very much appreciate the support of the coordinators of the wards for their overall efforts in approaching eligible patients. Furthermore, we thank Mirjam van Dijk, Judith de Groot, Nienke van der Meulen, Janneke Noordman, Jessika Ouwerkerk, Elise Posma and Frank Tol for their help in data gathering and coding of the videotaped consultations.
References (57)
- et al.
The influence of older patient–physician communication on health and health-related outcomes
Clin Geriatr Med
(2000) - et al.
The elaboration likelihood model of persuasion
- et al.
Cancer information: a cost-effective intervention
Eur J Cancer
(1999) Improving communication with cancer patients
Eur J Cancer
(1999)- et al.
Doctor–patient communication in different European health care systems: relevance and performance from the patients’ perspective
Patient Educ Couns
(2000) - et al.
Are GP patients’ need being met? Unfulfilled information needs among Dutch and ethnic minority patients
Patient Educ Couns
(2013) - et al.
A patient-centered instrument to measure quality of care through the patient's eyes preceding chemotherapy treatment
Eur J Cancer
(2009) - et al.
Information needs and sources of information among cancer patients: a systematic review of research (1980–2003)
Patient Educ Couns
(2005) - et al.
Exploring the influence of multiple variables on the relationship of age to quality of life in women with breast cancer
J Clin Epidemiol
(1992) - et al.
Communication cancer diagnosis and prognosis: when the target is the elderly patient – a GIOGer study
Eur J Cancer
(2009)
Information priorities of Italian early-stage prostate cancer patients and of their health-care professionals
Patient Educ Counsel
What prostate cancer patients should know: variation in professionals’ opinions
Radiother Oncol
Current concepts of communication skills training in oncology
Recent Results Cancer Res
The communication goals and needs of cancer patients: a review
Psychooncology
Annual report to the nation on the status of cancer, 1973–1999, featuring implications of age and aging on U.S. cancer burden
Cancer
Older adults and cancer treatment
Cancer
Theoretical models of cognitive aging and implications for translational research in medicine
Gerontologist
Change in sensory functioning predicts change in cognitive functioning: results from a 6-year follow-up in the Maastricht aging study
J Am Geriatr Soc
Physician-older patient communication about cancer
Patient Educ Couns
Information processing and feedback: effects of mood and information favourability on the cognitive processing of personally relevant information
Cognit Ther Res
Advancing tailored health communication: a persuasion and message effects perspective
J Commun
Patients’ memory for medical information
J R Soc Med
Patient compliance: recognition of factors involved and suggestions for promoting compliance with therapeutic regimens
J Adv Nurs
Communicating with patients: improving communication, satisfaction and compliance
Informational needs of women with a recent diagnosis of breast cancer: development and initial testing of a tool
J Adv Nurs
A systematic review of unmet needs of newly diagnosed older cancer patients undergoing active cancer treatment
Support Care Cancer
Patient education about treatment in cancer care: an overview of the literature on older patients’ needs
Cancer Nurs
Cited by (49)
Knowledge, beliefs, and misconceptions about palliative care among older adults with cancer
2023, Journal of Geriatric OncologyCitation Excerpt :In addition, they suffer from a high number of chronic conditions with an average of five chronic conditions [6,7]. Finally, they have high unmet needs including physical, psychological, social, spiritual, informational, and communication needs [8–10]. The high symptom burden, presence of chronic conditions, and unmet needs increase the complexity of care in older adults with cancer.
Information needs of older patients newly diagnosed with cancer
2022, Journal of Geriatric OncologyExperiences of older patients with cancer from the radiotherapy pathway – A qualitative study
2021, European Journal of Oncology NursingExpectations of patients with colorectal cancer towards nursing care– a thematic analysis
2020, European Journal of Oncology NursingCitation Excerpt :Thematic analysis revealed multifaceted, yet practicable expectations categorized into three main categories. The first category, patients' expectation of being empowered with knowledge confirmed earlier research results (Goossens et al., 2014; Kotronoulas et al., 2017; Simacek et al., 2007; Tombal et al., 2013; Vaartio-Rajalin et al., 2014, 2015; van Weert et al., 2013). However, related to knowledge of their treatment and care, Finnish patients with CRC expected to be strictly aware of what is happening in their care and justifications for decisions made whereas majority of Greek patients with breast cancer have preferred to have passive role in decision-making (Almyroudi et al., 2011).
Barriers to palliative and hospice care utilization in older adults with cancer: A systematic review
2020, Journal of Geriatric OncologyCitation Excerpt :Older adults with cancer also have unique health needs not just associated with the disease itself but also due to bio-psycho-social changes caused due to the aging process as well [5]. Older adults with cancer have high levels of unmet needs including psychological needs, informational needs, and communication needs [6,7]. Older adults with cancer can benefit from early enrollment in palliative care services.