© 2004 European Society for Medical Oncology
Perceptions of older people with cancer of information, decision making and treatment: a systematic review of selected literature
1 Cancer Care Research Centre, Department of Nursing and Midwifery, University of Stirling, Stirling; 2 Department of Geriatric Medicine, University of Glasgow, Glasgow; 3 School of Nursing, University of Manchester, Manchester, UK
* Correspondence to: Dr Z. Chouliara, Cancer Care Research Centre, Department of Nursing and Midwifery, University of Stirling, Stirling FK9 4LA, UK. Tel: +44-1786-479562; Fax: +44-1786-466333; Email: zoe.chouliara{at}stir.ac.uk
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Abstract |
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Background: Several studies have identified inadequacies in the care and treatment received by older patients with cancer, as opposed to their younger counterparts. These include over or under diagnosis, ineffective symptom management and lower survival rates in older people with cancer. Despite these inadequacies, there is a lack of evidence of older peoples' perspectives regarding their cancer diagnosis and treatment.
Materials and methods: Studies for review were identified from systematic searches of literature published between January 1990 and November 2003, using PubMed, CINAHL and PsycINFO. Studies were selected for inclusion by using a number of criteria (i.e. date and language of publication, age of participants and thematic area). The aims of the review were to summarize and evaluate previous evidence on the views of older patients with cancer, regarding information, decision making and treatment.
Results: Eighteen studies of various methodologies met the criteria of the present review. In summary, older people with cancer are generally content with the information they receive, but not entirely satisfied with the quantity and quality of care and contact. They present with various needs, which are not always well met. Finally, they wish to be kept informed of their cancer diagnosis and treatment progress, but often do not wish to be told about progression of their illness and length of survival.
Conclusions: Previous research has suffered a number of limitations regarding sampling procedures and methods of data collection. Other limitations included lack of consideration of the heterogeneity of older people with cancer and lack of a well-defined theoretical framework to guide design and data analysis. These may compromise not only rigour and the ability to generalize findings, but also the provision of patient-focused care. The difficulties of doing research in this area are also discussed and suggestions for future research are made.
Key words: decision making, information, older people, review, treatment
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Introduction |
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Within the European Community (EC) approximately one million cases of cancer are diagnosed per year. At present, more than 55% of cancers occur in people aged over 65 years [1
]. By the year 2020, 60% of all malignancies will affect this age group, if the current demographic trends continue [2]. Given the rapid rise in the number and proportion of older persons in our society, the management of cancer in older adults is an increasingly common aspect of oncology practice [3]. Previous studies have identified a number of inadequacies in the treatment and care of older people with cancer, as opposed to their younger counterparts. More specifically, older people are diagnosed later in the disease process, receive less rigorous staging of their disease, undergo less aggressive treatment and experience lower survival rates [4, 5]. Older patients are also more likely to receive inadequate treatment for pain and other symptoms of the disease [6]. A number of factors might contribute to the above inequalities. Concerns have been raised about the quality of treatment and care for these patients, because of a lack of adequate geriatric expertise and care in oncology [7–10]. In fact, cognitive, physical and psychological limitations of older people with cancer have often been neglected both in routine care and in relevant research. Concerns have also been raised because of a general negative bias towards elderly people by oncology health professionals [11, 12]. Finally, older people have frequently been treated as a single homogeneous group both in research and clinical practice, although the reality is that they include widely divergent individuals, with different views about cancer and its treatment. Considering the above findings, we should note the importance of research on the views of older people with cancer, in order to increase our understanding of the needs and perspectives of such patients. Given the scarcity of data in this area, such an understanding is vital for the provision of patient-focused, evidence-based treatment and care for the elderly through all the phases of their cancer experience.
The aims of the present review are:
- To summarize and evaluate previous evidence on views of older people with cancer, regarding three large thematic areas, i.e. information, decision making and treatment.
- To make suggestions for future research.
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Materials and methods |
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The method followed the guidelines for systematic reviews by Droogan and Cullum [13
], adjusted to the purpose of the present review paper. Studies of quantitative, qualitative and combined designs were included if they fulfilled the following criteria:- They were published in peer-reviewed journals after 1990.
- They were published in English.
- Participants were
65 years, or of mean age 65 years, or the words ‘elderly’/‘older’ were used by authors in the description of the sample and/or the title of the paper.
- They were relevant to one or more of the following thematic areas: information, decision making or treatment.
It was the original intention of the authors to include both primary research studies and relevant reviews of the literature. However, no relevant reviews or overviews were identified. Only peer-reviewed journals were considered and no attempt was made to identify unpublished studies.
The studies were identified using a systematic search of electronic databases, including PubMed, CINAHL and PsycINFO (from 1966 to 2003). The last update search was in November 2003. Keywords were first entered individually and then were combined. Secondly, each additional search term was entered to each combination.
Keywords included: older, elderly, aged and cancer. Additional searching terms were: information, decision making, treatment, information & decision making & treatment.
The studies included were categorized by methodology and design. Methodological evaluation was based on previously established criteria for evaluating quantitative [14] and qualitative studies [15, 16], respectively. Findings were synthesized using narrative summary.
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Results |
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A total of 469 articles were retrieved. From these, 51 were initially selected, because they were relevant to at least one of the three thematic areas, i.e. information, decision making and treatment. Finally, 18 out of 51 were reviewed (Table 1 provides data on numbers of papers retrieved and/or reviewed per thematic area and database). Thirty-three were rejected for the following reasons: they did not focus on cancer, or did not fulfil the age and/or the date of publication criteria.
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All the papers included in the present review were primary research papers. Their methodology and design varied. Basic characteristics of the studies included are presented in Table 2.
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In terms of methodology, of the 18 reviewed studies, eight were interview-based [17
–24], one used focus groups [25], one used record search [26] and eight were of mixed methodology (combined questionnaires and interviews, combined interviews and search of files, or all the above) [27–34]. No exclusively questionnaire-based studies were identified.
Of those studies where interview was the only method of assessment, three used semi-structured [19, 23, 24], four used structured [17, 18, 32, 33] and one used unstructured interview schedules [21].
Of the interview-based studies including those that used interviews as part of their combined methodology, six used telephone interviews [20, 23, 27, 29, 30], three used home interviews [17, 21, 32] and seven used any other face-to-face interview method (e.g. hospital interview) [18, 19, 22, 24, 28, 33]. From the questionnaire-based studies, or those that included questionnaire survey in their methods, two utilized postal questionnaires [27, 32] and four used paper-and-pencil ones [28, 31, 33, 34]. We also identified four studies that used search of records, either as an exclusive data collection method or as part of their methodology [26, 29–31].
In terms of design, 10 of the 18 studies included in this review were qualitative or mainly qualitative [18–22, 24–26, 32, 34], five were quantitative [17, 27, 29, 30, 33], whereas three were of combined qualitative–quantitative design [23, 28, 31]. It is worth noting that the majority of the studies (10 out of 18) were published in the USA, two in Canada, one in Sweden, one in Japan and one in the UK (Table 2).
A summary of the findings is presented below for each of the thematic areas of interest.
Views about information
According to Hughes et al. [26], older patients with cancer present with extensive information and support needs. These include: information about the expected outcome of illness, availability of community resources, identification of cases that require doctor's notification and pain management. Previous studies, both qualitative and quantitative, have also indicated that patients rely heavily on cancer specialists for information about their cancer and that they find the information provided by them as helpful [20, 29]. However, participants in the above studies were newly diagnosed or at early stages post-diagnosis. Their needs and preference for information might, therefore, have been different from patients at more advanced stages of their cancer experience.
According to Hughes et al. [26], information provided by nurses covered the following areas: post-operative care, symptom management, clarifying the illness experience, psychological responses to the illness and its treatment, and preparation of patients and their families to co-ordinate follow-up care. Nevertheless, the main source of support for older people with cancer was their family and the family physician [20]. Specifically, older people with cancer and their caregivers received significantly more emotional and self-esteem support from their family than from any other source, e.g. health professionals [34]. The ability to generalize the above findings is questionable, due to a number of methodological weaknesses, including selection bias, non-representative homogenous samples, use of structured questions, lack of direct measurement of patient views and rigid narrow-focused rather than patient-focused analysis.
Older patients present overall content with the quality and timeliness of the information provided to them [20, 22, 23]. Satisfaction with technical and interpersonal communication with physicians was positively associated with emotional outcomes, both general and cancer-specific [29]. A large proportion of older patients with cancer were not told their diagnosis or not given precise information about their illness [31]. Reasons for non-disclosure, as stated by doctors, included lack of patient's ability to understand the information, family's wishes and fear of discouraging the patient. Dementia, poor physical status and terminal malignancy were associated with non-disclosure of the diagnosis in these patients [31]. Nevertheless, the exact proportion of older patients with cancer who wish to know their diagnosis is not conclusive, because the decision is usually made by the family and medical staff [31]. In addition, despite the relatively large samples used in such studies, only one considered the cognitive status of participants [31].
Moreover, relevant studies have identified a discrepancy between clinician and patient claims regarding disclosure of information. Despite clinician's claims that they discussed the diagnosis, patients and carers frequently did not corroborate such findings [32]. On the other hand, Fried et al. [32] suggest that although many older patients (43.5%) want to know their diagnosis, they do not wish to receive any prognostic information. Desire for prognostic information was associated with patient beliefs about prognosis but not with their socio-demographic background. In addition, Ptacek and Ptacek [23] claimed that older patients' satisfaction with bad news transactions was predicted from the context of the interaction, what physicians said and how they said it. Nevertheless, in this study definitions of satisfaction were informed by health professional guidelines for good practice rather than by patients' subjective experience.
Views about decision making
Previous research identified a number of topics regarding decision making in general, which seem to be important for older people with cancer and their relatives. These included symptom management, use of chemotherapy, choices for selection of a medical provider, complementary treatments and family involvement in the elder's care [19]. Specifically, the needs of patients and carers for information regarding decision making were information clarification, reassurance about their decisions, change of treatment regime and help with communication among health professionals, the elderly patient and the family [19]. Nevertheless, the study by Lewis et al. [19] was health professional-led, since patients' views were not obtained directly. More importantly, information on patient and carer needs and preferences were obtained through content analysis of reports of 41 telephone consultations of a small number of cancer care nurse co-ordinators (n=5), patients and/or care givers.
Mazur and Merz [18] reported that older people showed preferences for a variety of treatment options for cancer. Such preferences were associated with patients' previous health-related experiences and physical status. Older people's views about the end of life and the terminal stages of their illness experience were also heterogeneous [24]. Also, according to Vig et al. [24], the majority of patients identified the importance of their family in their care. However, they expressed certain preferences about their family's involvement and contribution in the decision making, which often did not entail handing total control of the decisions to the family. Although the decision to enter hospice care did not seem to be age-dependent, cancer patients receiving hospice care were older and less educated, with less social support, higher comorbidity and greater frailty [33]. Such studies were largely descriptive and did not provide any in-depth analysis of older patients' views. In addition, findings might have been compromised by the homogeneity of samples, selection bias, large age range of participants, use of structured questions and statistical rather than patient-focused exploration.
Views about treatment
Previous studies have identified certain components of care that are important for older people with cancer, including speed of referral to specialists for treatment and communication issues, such as disclosure of tests results and delivery of bad news [25]. Other issues identified as important included social relationships and family, end-of-life care and preferences and maintaining meaningful physical activity [21]. Nevertheless, such studies suffered a number of methodological limitations, including small sample sizes and homogenous samples (e.g. single type of cancer or single gender samples).
A large proportion of older people with cancer are reported as willing to talk about their cancer [22]. Nevertheless, older patients felt that they did not receive adequate assistance to cope with treatment-related difficulties, such as side-effects, fear of recurrence, bowel difficulties and sleeping problems [20, 22]. However, in the study by Sahay et al. [20], the sample consisted only of patients with colorectal cancer from a single clinic, and their views were obtained via telephone interviews, based on structured questionnaires. Such methodological choices are likely to have limited responses. In addition, there was not a clear theoretical framework guiding the data collection and analysis.
Tishelman [28] also claimed that, although there were no significant age-related differences in symptom distress, cancer patients' perceptions of care differed according to age. Specifically, older patients reported less contact and also less engagement and concern from staff. However, participants in this study were not comprised exclusively of cancer patients, whereas the older cancer patients included were obtained from a general and not a geriatric clinical site. Such sampling, combined with the lack of consideration for cognitive and physical frailty, might have resulted in selection of healthier and cognitively lucid older patients.
In addition, older patients from rural and remote areas appear to have lower expectations of care and face more difficulties in accessing specialist care, in terms of transportation and speed of referral [25]. A number of studies have focused on the impact of limited support on older patients' well-being. According to Fitch et al. [22], such lack of support may result in a significant decline of patients' quality of life during their cancer treatment. Moreover, levels of clinical depression are elevated in older people receiving treatment for cancer. According to such findings, psychopathology is associated with feelings of isolation and lack of support rather than medical variables [30]. Such research has taken into account patient views and psychological status, but is characterized by a number of methodological weaknesses, including cross-sectional designs, selection bias and sample homogeneity.
Nevertheless, other evidence has focused more on age-related assumptions by health professionals. More specifically, according to Khan et al. [27], physicians often fail to recognize age as a factor having a direct impact on quality of life of patients with cancer. They also tend to make wrong assumptions about problems (i.e. physical, social, emotional and financial) experienced by older patients as opposed to their younger counterparts. Although this study obtained the views of both patients and health professionals and comprised a large sample of patients (n=200), it was limited in a number of ways. Specifically, both patients' and physicians' responses might have been limited by the use of structured questions. In addition, patients' responses were obtained through telephone interviews and not face-to-face contact. Patient data were analyzed on the basis of statistical significance rather than deep patient-focused understanding. Finally, in this specific study, physicians responded to hypothetical and not real-life patient scenarios. As a result, patient and physician views were not matched for each true case.
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Discussion |
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The findings of the studies reviewed can be summarized in the following points.
- Older people with cancer are generally content with the information they receive regarding their illness, but not entirely satisfied with the quantity and quality of care and contact.
- Older people with cancer present with a number of needs regarding decision making, treatment and coping with their illness in general. Such needs are not always well met.
- Older people wish to know their cancer diagnosis and to be kept informed about their treatment progress, but often do not wish to be told about progression of their illness and their length of survival.
Nevertheless, many issues remain unanswered by the studies reviewed here, including the following:
- Self-reported positive and negative aspects of treatment and care.
- Views about the degree and types of desired involvement in treatment decision making.
- Views about family involvement in treatment decision making and care.
- Patient definitions of quality of life and views about the dilemma of ‘quality of life versus side-effects’.
- The variability of views about information, decision making and treatment, according to levels of frailty, comorbidity and socio-demographic background.
The quality of the information provided by the studies reviewed here is limited, first by certain difficulties regarding previous evidence in the area of older people with cancer, secondly by the limitations of the present review itself and finally by the methodological weaknesses of the studies reviewed.
Previous relevant research is characterized by the following difficulties:
- There is a lack of systematic and/or rigorous reviews of the literature on older people with cancer and their accounts of their cancer experience.
- There is a distinctive lack of UK-based research on older people with cancer. The vast majority of the studies reviewed were conducted in the USA, Australia or Europe.
Recent research on the perspectives of older people with cancer is limited, and the evidence provided is fragmented and sporadic. This is partly due to the lack of a systematic framework to guide both research and clinical practice regarding older people with cancer. As a result, recent relevant research is characterized by a lack of consistency and wide variability in methodology and main outcomes examined, which make findings hardly comparable and weakens any review process.
Such difficulties might be partly explained by the adversities of conducting research with such a vulnerable group of patients as older people with cancer. These include increased physical and cognitive frailty and high comorbidity, which may result in problematic recruitment due to consent issues and high rates of sudden death [35]. Such difficulties might be further exacerbated by negative attitudes towards older people and ageing in health care [7, 12], and also by lack of adequate geriatric care in oncology settings [10].
To account for the above difficulties, in the present review we took the following measures. First, on the basis of strict inclusion criteria, we reviewed a small, carefully selected, number of studies. Although the small number of studies included might have limited the results of the present review, the methodology was chosen in order to keep the review brief, rigorous and up-to-date. The age criterion was also important, since previous research comprised a large age range of participants and very rarely focused on exclusively older groups (over 65 years of age). Secondly, we organized the studies and their findings around three basic thematic areas (information, decision making and treatment) to allow for a more comprehensible synthesis of the findings and account for the lack of cohesion in relevant research.
A number of methodological limitations have also compromised the quality of information provided by studies on older people. These include the following:
- Use of structured interview schedules [18, 32] or structured standardized questionnaires [17] or both [28, 33] might have limited older people's responses.
- Use of telephone interviews [20, 23, 27, 29, 30] might also have limited the responses of older people, due to lack of face-to-face contact and limited response time, which might be important for this patient group, especially if physical and mental frailty are present. Patient responses have also been limited, due to use of internet-based questionnaire batteries, which require both specialized skills and access [34].
- Small sample sizes in qualitative studies, especially those with case study methodologies [19, 21, 24].
- Selection bias [22, 24, 34], social desirability effects, especially where health professionals' responses were obtained [27, 32], skewed and homogeneous patient samples [17, 21, 24, 30] or single-cancer type samples [20, 22, 25, 29], especially in qualitative studies. In addition to the above, some studies were not exclusive to older people (over 65 years of age), but comprised participants of a wide age range [18, 27, 33], whereas other studies did not exclusively focus on patients with cancer, but included patients with other chronic diseases as well [18, 28, 32].
- Even in studies focusing on older people's perceptions, the views of older people are rarely obtained directly. Most often the views of older patients are obtained through accounts/reports by health professionals (e.g. [26] and [19]: via nurses), whereas a number of studies are health professional-led [22, 26].
- Physical and cognitive frailty, as well as psychopathology levels, have rarely been considered, with a few exceptions [30, 31], despite their implications for informed consent, possible associations with older people's views and their importance for evaluation of findings. In addition, previous research has emphasized that effective treatment decisions should be based on a multi-dimensional assessment of the older patient with cancer for an evaluation of the risks and benefits [10].
- Lack of a clear framework for the analysis of data. The data analysis plan and framework of the qualitative studies reviewed have been either absent or ill-described (e.g. [20] and [25]). Also, none of the qualitative studies reported to have used a qualitative computer package for data analysis, although this may be partly due to the small number of participants in most such studies.
- Lack of a theoretical framework in most of the studies reviewed. This is particularly true for the qualitative studies, where choice of research questions and methodology did not seem to be rooted in previous relevant literature or based on a clear theoretical perspective [20, 25].
- Limited in-depth exploration and analysis of patients' views. In most of the studies included in the present review analysis of older people's views was either based on statistical exploration and medical standards, as in the case of quantitative research [23, 27, 29, 33], or simply on description and rigid inferences, as in the case of qualitative studies [18, 34].
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Conclusions |
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Considering the findings of the present review, future research should consider the following: (i) obtaining views of older people directly, using flexible and open-ended interview schedules; (ii) reporting cognitive, physical and psychological frailty levels of participants, as measured by standardized tools; (iii) considering the heterogeneity of older people with cancer in sampling procedures; (iv) using a clear and well-described theoretical framework to guide all methodological choices and data analysis; and finally (v) providing a well-described method of data analysis, preferably by using appropriate computer software, especially for qualitative studies.
The above considerations would increase rigour and ability to generalize in research on older people with cancer, resulting in a better understanding of their needs and preferences regarding information, decision making and treatment. Such an understanding could have direct implications for the provision of evidence-based patient-focused care, more effective use of resources and reduction in distress for patients and their care givers, as well as health professionals.
Received for publication May 21, 2004. Accepted for publication May 27, 2004.
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