Older cancer patients' information and support needs surrounding treatment: An evaluation through the eyes of patients, relatives and professionals

The present study employed a qualitative design using five focus group interviews and five face to face interviews. A semi-structured interview, which consisted of open-ended questions, was used to explore the opinions of cancer patients and professionals concerning the specific needs of cancer patients surrounding chemotherapy treatment. The overarching prospective study, including the present study, was approved by The Medical Ethical Committee of the University Medical Centre Utrecht (VOICE 04/184), supplemented by local feasibility statements from the participating hospitals. Eligible patients were sent or given a letter by the hospital nurse, explaining the study aims and demands as well as explaining that anonymity was guaranteed and refusing to participate would not influence their treatment. After a few days, patients were phoned by one of the researchers to answer their existing questions about the study. Patients who agreed to be interviewed were visited at home, except for one patient who preferred to be interviewed at the hospital. They signed written informed consent prior to the interview. Focus group patients came to the research institute, which is located in the centre of the Netherlands. Personal information (e.g. name and address) was securely stored separately from the data collected in the interviews to make sure that the participants were not identifiable.

In general, patient education about chemotherapy treatment in Dutch hospitals is provided by (specialized) oncology nurses. During a consultation which lasts approximately one hour, information is provided about the treatment, side effects and how to deal with side effects. To explain issues concerning chemotherapy treatment, a booklet 'Treatment Guide Chemotherapy' [22] is often used in the Netherlands during these consultations. This booklet contains an overview of the most important treatment issues and is given to patients after (or sometimes before) the consultation. The consultation usually takes place two weeks to one day before the first chemotherapy treatment starts. No clear difference exists between patient education for younger and older patients.

Five focus group interviews and five one-on-one interviews were conducted with a total number of 38 subjects. Two focus groups consisted of older cancer patients and their partners who had received a treatment like chemotherapy in the past; three focus groups consisted of professionals with a background in oncology, gerontology, nursing care and/or patient-provider communication. For the interviews, older cancer patients (≥ 65 years) were included who had just finished their second chemotherapy treatment to obtain retrospective information about their needs surrounding treatment as well as their experiences regarding the fulfilment of these needs. The focus group patients and their relatives were selected by an advertisement in a magazine (called "Plus Magazine") for older individuals (first patient focus group) and by approaching seven patient associations (second patient focus group). Twelve people (seven patients and five partners) responded to the advertisement. Seven of them (four patients and three partners) attended the meeting. The other five were unable to come due to holidays (n = 2), hospital appointments (n = 2) and illness (n = 1). In addition, there were nine enlistments (eight patients and one partner) of four patient associations: breast cancer foundation (n = 3), prostate cancer foundation (n = 2), lung cancer foundation (n = 2) and multiple myeloma foundation (n = 2). Six of them (five patients and one partner) attended the meeting. Three cancelled due to other engagements (n = 2) and illness (n = 1). Figure 2 provides an overview of the selection of subjects and the drop-out. The abbreviations of the participants groups mentioned in the flow chart correspond with the abbreviations in de result section (see also 'Data analysis').

Interviewees were recruited in four Dutch Hospitals. To be eligible for the interview, patients had to meet the following inclusion criteria: 1) aged 65 years or older, 2) receiving chemotherapy for the first time or for the first time in 5 years, 3) sufficient command of the Dutch language and 4) no history of cognitive deficiencies according to the medical file. A sample of 13 consecutive participants was selected at the time of their second chemotherapy treatment. Of these, five subjects participated in the study.

Figure 2 gives an overview of the drop-outs. Six refused to participate because two felt too sick, one deceased, one felt it was too much, one felt participation was unnecessary and one refused without giving a reason. Of the seven patients who gave informed consent, two could not be included in the study: one was too sick and the other patients' chemotherapy treatment was cancelled, leaving five patients. Socio-demographic data, disease characteristics and treatment characteristics were also collected. Table 1 provides an overview of the patients' characteristics.

The professionals were selected based on recommendations of stakeholders in these areas. A total number of 20 participants were divided into three professional focus groups, to cover opinions of professionals in different fields of expertise: one group of oncology nurses (n = 6), one group of policymakers and communication trainers (n = 8), and one group of researchers (n = 6). Table 2 provides an overview of the professionals' characteristics.

An interview schedule was designed to address the study aims. The interview schedule comprised three main sections: 1) differences between older and younger patients; 2) information and support needs and 3) recall of information. Table 3 provides an overview of the questions. The focus groups were led by experienced moderators. In semi-structured format, the participants were encouraged to express their perspectives, beliefs and experiences about the issues put forward in the questions. The sessions lasted approximately 45 minutes in the patient groups and one hour and 15 minutes in the professional groups. For the interviews, a comparable interview protocol was used. The interviews lasted approximately one hour.

The focus groups and interviews were audio-recorded for subsequent transcription and analysis. Although qualitative research is very useful in the exploration and description of phenomena, researchers using a qualitative design are more challenged to guarantee validity of the study. To obtain valid results and to overcome the limited perspective of an observer [23], the transcripts of the interviews were analysed independently by two observers (ERP and JCMW) and emergent themes were identified structurally. Themes are formed by unifying statements of participants about the various subjects in the interviews [24, 25]. In our study, data were initially categorized according to responses to questions of the interview protocol (see Table 3). Data from each question were then examined systematically to identify particular categories of meanings following the qualitative content analysis [24]. First, meaningful units were identified (e.g. a 75 years old person does not know how many years he or she has left). Then, condensed meaning units were described, by identifying the underlying meaning of the units (e.g. older persons view their future differently from younger persons). The next phase was identifying the subtheme (e.g. older persons may have different life expectations than younger patients). Finally, a collection of different subthemes was identified as a theme (e.g. differences between older and younger patients) [24].

In the result section, quotes are illustrative and reflect the responses given by the participants. Quotes were selected on basis of the criteria that a quote should illustrate the category of meaning sufficiently, that it adds a new perspective and that the quotes represent the opinions of different participants. The participants are not personally identifiable. Numbers and letters are used to represent: patient in focus group (Pat.foc), patient in the one-on-one interview (Pat.int), relative in focus group (Rel.foc), researcher (Res), expert of patient-provider communication/policy maker (Expert) and (oncology) nurse (Nurse). There were no contradictions within the patient groups and within the professional groups, unless mentioned in the result section.

"Apart from age influences, there is just a lot of variance [between patients ERP]." (Nurse3)

"65 or 85 years old: the actual age doesn't matter." (Res4)

These individual differences were also found in the face to face interviews, as some patients prefer very detailed information, while others prefer little information.

"I want to know everything." (Pat.int3)

"All the information and explanations don't cure. At least, that's my opinion, but every human being is different. I personally don't need it." (Pat.int1)

"I actually don't want to know what the future will bring." (Pat.int5)

"I think the most important goal is to provide information about expected side effects of the treatment." (Expert8)

"The nurse should explain something about possible infections you can get after the chemotherapy treatment." (Pat.foc9)

"The medical [explanation ERP] was most important, off course." (Pat.int1)

All participants mentioned a lack of providing older cancer patients with personally relevant information at the moment they consider appropriate. According to the members of the focus groups, the best way to tailor information to older patients needs is asking patients to articulate these needs. These findings are in line with earlier results [26, 27], suggesting that effective communication is enhanced when both parties (e.g. nurse and patient) express their needs. Literature indicates that, compared to younger patients, older patients seem to report less often that they need information about the treatment, how the treatment works and what it accomplishes, what all the possible treatments are, what all the possible side effect are and things you can do to help yourself get well [21]. Furthermore, older patients demonstrate greater reliance on information provided by the physician than younger patients [5]. The results of the present study show that the individual needs of older cancer patients regarding the amount and content of information they require may be insufficiently explored in current practice. Previous studies on patients of all ages also showed that health care professionals seem to have difficulties understanding agendas and needs of their patients [28] and do not appear to explore these needs extensively [29]. The study results suggest that nurses should offer (medical) information the patient himself or herself needs to know in stead of offering information they consider relevant for this patient. One of the problems that have to be solved to be able to provide older cancer patients with tailored medical content information is the lack of evidence regarding costs and benefits of chemotherapy for the older cancer patients. Older people (> 70 years) were largely excluded from early trials on which many of the treatment guidelines are based and when they were included they represented a minority of healthy older people [30‐32]. This means that there is still a deficit in knowledge regarding how chemotherapy impacts on older patients in terms of benefits in survival and recurrence offset by costs in terms of side effects and effects on functional status and quality of life. The lack of reliable information that is specific to this age group complicates patient education. Although there are new initiatives to address this gap, additional research is still needed.

The results also show that information needs of older cancer patients as compared to younger patients do not so much differ in the required content of the information, but rather in the way information is given. According to the patient groups, showing empathy and support is an important aspect of patient education. It makes the patient (and relative) feel understood and creates a trustful environment, both during and after the consultation, which is a prerequisite for reflection on the information provided and the decision to undergo treatment. Although showing empathy and support is important in consultations with younger patients too, it could be especially important for older patients and their relatives as the results show that older patients have different life expectations. As a consequence, they might have a different view on the added value of undergoing treatment and perhaps a greater need to deliberate over the decision to undergo the treatment. This finding is in line with earlier research, showing that older cancer patients may be less willing than younger patients to trade increased survival for their quality of live when considering chemotherapy [33]. Therefore, the professional focus groups stated that exploring personal treatment goals can be helpful to explore the patients' wishes surrounding treatment. Salmon and colleagues [34] explained age differences in life expectations by suggesting that older patients may experience fewer cancer-related losses than younger patients due to the age-associated reduction in the time left to live. For example, older patients may feel less disturbed in their future plans than younger patients do. Furthermore, for older patients, their illness may have less impact on their appreciation of life then for younger patients [34]. Research also shows that older adults may have higher levels of psychological resources, such as the ability to adjust their goals to unchangeable circumstances [35]. Besides, older patients seem to need less support in coping with the disease and treatment than younger patients do [21]. Therefore, younger people may need more information from the health care professional in order to cope with their disease and treatment; in contrast, older patients may be overwhelmed by the information [36]. Our results suggest that nurses try to adapt to patients' emotional needs by providing information instead of showing empathy and emotional support, while these latter skills were considered particularly important by the participants in this study.

Our findings indicate that especially the way in which information is provided to older cancer patients could be improved. All focus groups stated that to enhance memory in older patients, information should be offered in a structured manner in which the most important, personally relevant information should be summarized and repeated. Furthermore, information should be offered step-by-step, to enable patients to let the information sink in, to consider the personal relevance and make him- or herself familiar with it. This is especially important for older patients, as they often are less educated than younger patient and cognitive functions decrease with age [11, 12]. Another key factor that affects comprehension of the information is the language level used to convey the message. Nurses should avoid using jargon that is common to them, but not to older patients. The only way to know if a message is understood and can be recalled is for the nurse to ask patients to repeat the message. Last, combining different methods of offering information (e.g. providing patients with additional written information) might improve the patient's ability to understand and recall the message.

The current study shows that stimulating the patient to bring a (younger) person to the consultation is considered an effective way to express their needs, address specific subjects to discuss and improve remembering. Literature suggests that a supportive accompanying individual may enhance communication when a complicated treatment regimen is being described, if the accompanying individual is present at the patient's request and provides positive support to the patient and accurate information to the health care provider [14, 37]. Having the opportunities to receive information and discuss concerns might also be useful for caring relatives to enable them to be more effective in their caring role [38].

To engage patients in patient education and gain insight in their specific information needs, patient and professional focus groups recommended encouraging patient question asking behaviour in cancer consultations. More specifically, a list with questions about different aspects of the treatment can be given to cancer patients before their initial consultation. Such a list is known in cancer literature as a question prompt sheet (QPS) or question prompt list. Patients can mark the questions on the QPS that they want to discuss during consultations [39‐41]. Patients who actively participate in consultations by asking questions, are able to change the focus of the consultation, control the duration and the amount of information provided [42] and receive higher levels of information recall [40].

According to both patients and professionals, communication training for nurses could be useful, especially when addressing specific competencies to provide older patients with tailored patient education. The training should contain knowledge about the information processing and memory in older people, but also teach the essential skills of good communication with older cancer patients, such as exploring the patients' information needs and expectations, responding to cues and concerns, showing empathy and emotional support, paying attention to the patients' relatives and guiding the patient in accepting help from others. Research results show mixed results of the effectiveness of communication training for (oncology) nurses. Some researchers found significant improvement of nurses' skills [42, 43], others found limited results [44, 45]. However, it has been suggested that consolidation follow-up sessions are required to facilitate maintenance of newly acquired skills and their transfer into the clinical practice [46, 47].

The results of this study should be interpreted with care, since only a total number of 38 participants were obtained. In qualitative research, data collection should continue until saturation is achieved, or no new information is uncovered. Usually, three to five group meetings are supposed to be needed to reach this goal [48]. In our study, we organized five meetings and no new items emerged in the last interviews and group discussions, indicating that saturation was achieved. One patient focus group included in this study existed of members of patient associations, probably consisting of active patients, which might have influenced their perspectives about what kind and how much information is relevant to an older patient. To handle this possible bias and include a wider variety of patients, the second group of patients was selected by an advertisement in a common magazine for older people. Moreover, the interviewees were randomly included, based on the date of their second chemotherapy treatment. Although there was an equal number of patients with low education as with high education (see Table 1), some participating patients might still have been verbally more expressive than the average older cancer patient. Besides this, the patient participants were all older cancer patients. Although these patients subjectively compared their current needs and cognitive capabilities to recall information with their own perceived needs at a younger age, we did not ask younger patients about their communication needs preceding treatment. Therefore, we cannot compare the findings of older cancer patients' needs objectively with findings of younger patient's needs. Moreover, the old-old patients were not reached in this study. It is recommended to cover these limitations in future studies. Last, this study only included patients following treatment. Therefore, the reliance is on post treatment recall of patients' pre treatment needs. It can be questioned to what degree patients have explicit (information) needs before treatment, as they are not yet familiar with the medical procedures and the patient education about their treatment. To validate the findings of this research and address possible differences in patients' needs pre and post treatment, it is recommendable to include both patients' pre treatment and post treatment information needs in future studies.