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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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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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:
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Materials and methods |
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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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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 [1822
, 24
26
, 32
, 34
], five were quantitative [17
, 27
, 29
, 30
, 33
], whereas three were of combined qualitativequantitative 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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Nevertheless, many issues remain unanswered by the studies reviewed here, including the following:
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:
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:
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Conclusions |
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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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