- Email: [email protected]
Older people with cancer: perceptions and feelings about information, decision-making and treatment—a pilot study
ARTICLE IN PRESS European Oncology Nursing Society (2004) 8, 257–261
www.elsevier.com/locate/ejon
RESEARCH IN BRIEF
Older people with cancer: perceptions and feelings about information, decision-making and treatmentFa pilot study Zoe Chouliaraa,*, Morven Millera, David Stottb, Alexander Molassiotisc, Chris Twelvesd,e, Nora Kearneya a
Department of Nursing and Midwifery, Cancer Care Research Centre, University of Stirling, Stirling FK9 4LA,UK b Department of Geriatric Medicine, University of Glasgow, UK c School of Nursing, University of Manchester, UK d Clinical Cancer Pharmacology and Oncology, University of Leeds, UK e Tom Connors Cancer Research Unit, University of Bradford, UK
KEYWORDS Older people; Cancer; Patient-centred; Information; Treatment; Decision-making
Summary 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 lack of evidence of older peoples’ perspectives regarding their cancer diagnosis and treatment. This on going 2-site hospital based study focuses on older people’s perceptions of information and decision-making in relation to treatment for cancer by using a semi-structured interview schedule. Results of the pilot study with 6 patients are presented and discussed in the light of research and clinical implications. & 2004 Elsevier Ltd. All rights reserved. Zusammenfassung Etliche Untersuchungen haben bereits das Ungleichgewicht in . Versorgung und Behandlung a. lterer Krebspatienten im Vergleich zu ihren jungeren Schickasalsgenossen aufgedeckt. Dies betrifft sowohl mehrfache als auch mangelhafte . Diagnose, ineffektiven Umgang mit Symptomen und eine geringere Uberlebensrate bei a. lteren Krebspatienten. Trotz dieses Ungleichgewichts fehlt es bisher an Belegen . daruber, wie a. ltere Menschen ihre Krebsdiagnose und ihre Behandlung sehen. Diese dauerhaft angelegte Studie fut auf den Daten aus zwei Krankenha. usern. Sie . befasst sich mit den Wahrnehmungen a. lterer Patienten uber den Informationsfluss und die Entscheidungsprozesse in Bezug auf die Behandlung ihrer Krebserkrankung. Dabei kommen halbstrukturierte Interviews zur Anwendung. Die Ergebnisse der Untersuchung werden hier vorgelegt und hinsichtlich Forschungsvorgehen und klinischen Schlussfolgerungen diskutiert. & 2004 Elsevier Ltd. All rights reserved.
*Corresponding author. Tel.: þ 1786-466105; fax: þ 1786-466333. E-mail address: [email protected] (Z. Chouliara). 1462-3889/$ - see front matter & 2004 Elsevier Ltd. All rights reserved. doi:10.1016/j.ejon.2003.12.010
ARTICLE IN PRESS 258
Z. Chouliara et al.
Backround Recent studies have documented that older people with cancer are often diagnosed later in the disease process than their younger counterparts and receive less rigorous staging of their disease (Balducci and Lyman, 1997). They also tend to undergo less aggressive treatment and experience a lower rate of survival (Goodwin et al., 1996; Balducci and Lyman, 1997; McCaffrey, 1997). Considering the above, concerns about the possibility of inadequate treatment and care have been raised (Walker et al., 1998; Ferrell, 1999; Kearney et al., 2000). Recognition of the needs of older people with cancer is required through all the phases of the cancer experience. Older people frequently present with both cognitive and physical comorbid conditions and with certain functional limitations (Repetto et al., 1997). It is not known to what extent these contribute to their perceptions about cancer and its treatment. Scarcity of evidence on the perspectives of older people means that health professionals may make paternalistic assumptions about what patients wish. Hence, this on-going study aims to enhance understanding of the patients’ perspective and views, in order to facilitate patient-focused, evidence-based treatment and care. This paper presents results from a pilot study to explore the views of older people with cancer, regarding information provided to them, decision-making and treatment.
Aims of the pilot study This study aims 1. To explore older people’s perceptions and feelings about the information they received regarding their cancer diagnosis.
Table 1
2. To explore older people’s perceptions and feelings about their treatment for cancer and the decision-making process. The purpose of the study is to obtain a validated, clinically useful working framework of: *
*
Older people’s views and preferences regarding the above areas of their cancer experience. Older people’s perceptions of positive and negative aspects of their cancer care.
Methods Sample This pilot is part of an on-going qualitative, hospital based study. Patients were recruited from inpatient areas of 2 clinical sites, a Cancer Centre and Care of the Elderly wards to ensure a representative patient population. For the main study, a purposive sample of 80 patients in total (40 from each hospital site), stratified on age group and gender, will be included. Type of cancer and time elapsed since diagnosis will be taken into consideration, in order to achieve an even representation. The inclusion criteria are: * *
*
Aged 65 years or older. Having been diagnosed with cancer and being aware of their diagnosis. Having, had or about to have curative or palliative treatment or supportive care.
The sections covered by the interview schedule are illustrated in Table 1. For the purpose of the pilot study reported here, a total of six patients (3 from each hospital site), 2
Interview schedule.
Section 1: Information about Cancer Quantity (e.g. Do you feel you received enough information about your diagnosis?) Quality (e.g. What aspects of your illness have you been given information about?) Sources (e.g. Who gave you information about your illness?) Section 2: Decision-making Patient involvement (e.g. How much do you feel you were involved in making decisions about your treatment?) Family involvement (e.g. How much do you feel the wishes of your family affected your treatment?) Factors affecting treatment decision-making (e.g. What do you think are important aspects to consider when making decisions about your treatmentFside effects, your age?) Section 3: Treatment Information needs regarding treatment (e.g. Is there anything about your treatment that you would like more information about?) Feelings (e.g. What effect did the treatment have on your life, positive and/or negative)?
ARTICLE IN PRESS Older people with cancer
male and 4 female, were interviewed in hospital. The age of participants ranged from 65 to 96 years. Duration of interviews ranged from 30 to 50 min.
Design and procedure Semi-structured, qualitative interviews were conducted with older people with cancer. Each patient participated in one interview. All interviews took place in the hospital by the same researcher to ensure continuity of approach. Prospective participants were initially approached by medical or nursing staff responsible for their care and verbal consent was obtained at this stage. Willing participants were then approached by the researcher, where both verbal and written consent was obtained. Prior to interview, patients’ cognitive and physical status were assessed by using standardised clinical measures, the Mini-Mental State Exam (Folstein et al., 1975) and the Barthel Activities of Daily Living (ADL) Index (Mahoney and Barthel, 1965), respectively. Following the interview, socio-demographic (e.g. living conditions, home support) and medical information (e.g. type and location of cancer, comorbid conditions) were noted from case notes.
Theoretical framework and data analysis Information generated from the semi-structured pilot interviews was subject to framework analysis (Bryman and Burgess, 1994). This method is facilitated through the introduction of specific issues and themes to the interview schedule, which were subsequently
259
sought out and identified in the analysis. There are certain reasons for choosing framework analysis. Firstly, this technique allows the researcher to be guided in the analysis by a list of core general issues, important for the scope of the study, without being either too rigid or too immersed in unstructured data. Secondly, it allows for new relevant issues to be generated from the data. Thirdly, it makes analysis of large amount of data more manageable. An established computer programme (i.e. Atlas-Ti) designed for storage and analysis of qualitative data was used to facilitate analysis. Ethical approval was granted by the Local Board Ethics Committee.
Results Cognitive alertness scores ranged from 24 to 29 in the Cancer Centre (optimum range 0–30, with 0 score meaning the patient did not answer any items and 30 that all items were answered successfully), whereas in the Care of the Elderly wards scores ranged from 7 to 26. All patients in the Cancer Centre scored the highest (20) in physical status, whereas scores in the Care of the Elderly wards ranged from 9 to 19 (optimum range 0–20, with 0 score meaning the patient did not answer any items and 20 that all items were answered successfully). Participants of the pilot appeared generally content with information provided to them and their treatment. However, pilot interviews yielded two main areas regarding the views of older people with cancer, firstly about treatment and quality of life (see Fig. 1) and, secondly about the ‘‘side
Figure 1 Older people’s views on treatment and quality of life.
ARTICLE IN PRESS 260
Z. Chouliara et al.
Figure 2 The side effects vs. cure.
effects versus cure dilemma’’ (Fig. 2). The views of the participants regarding each of the above areas will be briefly presented below.
Views about treatment and quality of life
Older people claimed that side effects would not discourage them from opting for treatment. They provided a number of reasons why they were prepared to tolerate side effects, which are summarised as follows: *
Older people with cancer wanted as much treatment as they could receive, because they wished to prolong their life as much as possible. However, their wish to prolong life was accompanied by their wish to have an at least ‘‘average quality of life’’. Their definition of ‘‘average quality of life’’ consisted of the following: * * *
*
Enjoying life. Not suffering severe pain. Not viewing cancer as a big problem and a radical disruption in normal everyday life. Being able to put cancer-related worries aside occasionally.
*
*
*
*
*
*
Views on the ‘‘side effects versus cure dilemma’’ Although older people appear keen on receiving treatment, they recognised certain limits/conditions on their wish, which are summarised below: *
*
* *
If treatment side effects are not debilitating to the extent that they would become a burden to loved ones. If treatment is effective for their type of disease and their physical status. If the treatment is offered to them. If they feel they are still cognitively and physically able to tolerate it.
*
*
Wishing to improve their health (‘‘get better’’). Seeing side effects as an unavoidable and necessary part of treatment (‘‘you need to take the good with the bad’’). Believing in the effectiveness of the specific treatment. The specific treatment being the only suitable for their particular type and location of the disease. Not wanting to become a burden, by leaving their illness untreated and consequently deteriorating. Following doctor’s advice that a specific treatment is the best for their case. Using acceptance as a general stance and coping strategy regarding their illness. Having been provided with information regarding possible side effects, knew what to expect and were prepared to cope with them. Adopting an optimistic stance towards treatment (e.g. ‘‘even if it is difficult in the beginning, ‘‘things will pick up later’’).
Contribution to research and care The results of the pilot study provided evidence that the on going study will contribute to clinical practice by providing health professionals with a framework for assessing and addressing the needs
ARTICLE IN PRESS Older people with cancer
and wishes of older people with cancer. The pilot study identified a number of issues, which seem to be important for older people with cancer. These included availability and accessibility of information sources, alternative information sources, quality of life in relation to treatment and side effects as a factor in treatment decision-making. It has also provided a preliminary description of older people’s views regarding their illness and its treatment and of their decision-making process. These issues will be explored in more depth in the main study. As a result of the pilot, minor changes have been made in the language and format of the interview schedule to assist in a more efficient exploration of the above issues in the main study. In view of the pilot results, the on going study has the potential to make a contribution to research on older people with cancer in a number of ways. First, a patient-centred approach should be adopted, with older people’s views and perspectives being directly assessed. Second, cognitive and mental frailty should be routinely assessed and their association with views and attitudes examined. Third, heterogeneity of older people should be considered both in terms of research but more importantly in routine clinical care.
Conclusion This study begins to suggest a shift in perspective in both research and clinical practice in care of older people with cancer is required. Instead of providing older people with the treatment and care felt to be appropriate by the professionals, it should be possible to identify the views of patients’ themselves and consequently implement them. This should enable a systematic framework of evaluation and an appropriate use of time, resources and skills in cancer care. Another value of the research is, that contrary to previous evidence (Yancik and Ries, 1991), older people seem to have organised and clear views and preferences regarding treatment (e.g. how much treatment) and quality of life. From the pilot study, it became clear that older people do want treatment, but they are equally concerned about their quality of life. Unlike previous findings (Marshall, 1981), in the present pilot treatment and quality of life were not contradictory but complementary terms. In addition, older people, although often concerned about
261
side effects, still wanted as much treatment as possible. They were prepared to consider side effects on certain conditions, in order to improve their chances of survival and maintain functioning. Older people with cancer were also capable of describing an organised decision-making process they use to evaluate different factors (e.g. side effects) and arrive at decisions. This contradicts previous findings, which portrayed older people’s decision-making as more simplistic or rigid, simply opting for less aggressive treatment (Samet et al., 1986). In the main study we hope to explore these issues further and identify other issues that are important for older people with cancer and the clinicians responsible for their care.
References Balducci, L., Lyman, G.H., 1997. Cancer in the elderly: epidemiologic and clinical implications. Clinics in Geriatric Medicine 13 (1), 1–14. Bryman, A., Burgess, R.G., 1994. Analysing qualitative data. Routledge, London, New York. Ferrell, B.R., 1999. The marriage: geriatrics and oncology. Geriatric Nursing 20 (5), 238–240. Folstein, M.F., Folstein, S.E., McHugh, .P.R., 1975. Mini mental state: a practical method for grading the cognitive state of patients for the clinician. Journal of Psychiatric Research 12, 189–198. Goodwin, J.S., Samet, J.M., Hunt, W.C., 1996. Determinants of survival in older cancer patients. Journal of the National Cancer Institute 88, 1031–1038. Kearney, N., Miller, M., Paul, J., Smith, K., 2000. Cancer and the elderly: attitudes of healthcare professionals. Annals of Oncology 11, 599–601. Mahoney, F.I., Barthel, D.W., 1965. Functional evaluation: the Barthel index. Maryland State Medical Journal 14, 61–65. Marshall, V., 1981. Physician characteristics and relations with older patients. In: Haug, M. (Ed.), Elderly Patients and Their Doctors. Springer Publishing Company, New York. McCaffrey Boyle, D., 1997. Cancer in the elderly: the forgotten minority. In: Hogan, C.M., Wickham, R. (Eds.), Issues in Managing the Oncology Patient. A Current Reference and Bibliography. Philips Healthcare Communications Inc, New York. Repetto, L., Granetto, C., Venturino, A., 1997. Comorbidity and cancer in the aged: the oncologists’ point of view. Rays 22 (1 Suppl), 17–19. Samet, J., Hunt, W.C., Kay, C., Humbel, C.G., Goodwin, J.S., 1986. Choice of cancer therapy varies with age of patient. Journal of the American Medical Association 255, 3385–3390. Walker, L.G., Kohler, C.R., Heys, S.D., Eremin, O., 1998. Psychosocial aspects of cancer in the elderly. European Journal of Surgical Oncology 24 (5), 375–378. Yancik, R., Ries, L.G., 1991. Cancer in the aged. Cancer 68 (Suppl. 1), 2502–2510.
www.elsevier.com/locate/ejon
RESEARCH IN BRIEF
Older people with cancer: perceptions and feelings about information, decision-making and treatmentFa pilot study Zoe Chouliaraa,*, Morven Millera, David Stottb, Alexander Molassiotisc, Chris Twelvesd,e, Nora Kearneya a
Department of Nursing and Midwifery, Cancer Care Research Centre, University of Stirling, Stirling FK9 4LA,UK b Department of Geriatric Medicine, University of Glasgow, UK c School of Nursing, University of Manchester, UK d Clinical Cancer Pharmacology and Oncology, University of Leeds, UK e Tom Connors Cancer Research Unit, University of Bradford, UK
KEYWORDS Older people; Cancer; Patient-centred; Information; Treatment; Decision-making
Summary 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 lack of evidence of older peoples’ perspectives regarding their cancer diagnosis and treatment. This on going 2-site hospital based study focuses on older people’s perceptions of information and decision-making in relation to treatment for cancer by using a semi-structured interview schedule. Results of the pilot study with 6 patients are presented and discussed in the light of research and clinical implications. & 2004 Elsevier Ltd. All rights reserved. Zusammenfassung Etliche Untersuchungen haben bereits das Ungleichgewicht in . Versorgung und Behandlung a. lterer Krebspatienten im Vergleich zu ihren jungeren Schickasalsgenossen aufgedeckt. Dies betrifft sowohl mehrfache als auch mangelhafte . Diagnose, ineffektiven Umgang mit Symptomen und eine geringere Uberlebensrate bei a. lteren Krebspatienten. Trotz dieses Ungleichgewichts fehlt es bisher an Belegen . daruber, wie a. ltere Menschen ihre Krebsdiagnose und ihre Behandlung sehen. Diese dauerhaft angelegte Studie fut auf den Daten aus zwei Krankenha. usern. Sie . befasst sich mit den Wahrnehmungen a. lterer Patienten uber den Informationsfluss und die Entscheidungsprozesse in Bezug auf die Behandlung ihrer Krebserkrankung. Dabei kommen halbstrukturierte Interviews zur Anwendung. Die Ergebnisse der Untersuchung werden hier vorgelegt und hinsichtlich Forschungsvorgehen und klinischen Schlussfolgerungen diskutiert. & 2004 Elsevier Ltd. All rights reserved.
*Corresponding author. Tel.: þ 1786-466105; fax: þ 1786-466333. E-mail address: [email protected] (Z. Chouliara). 1462-3889/$ - see front matter & 2004 Elsevier Ltd. All rights reserved. doi:10.1016/j.ejon.2003.12.010
ARTICLE IN PRESS 258
Z. Chouliara et al.
Backround Recent studies have documented that older people with cancer are often diagnosed later in the disease process than their younger counterparts and receive less rigorous staging of their disease (Balducci and Lyman, 1997). They also tend to undergo less aggressive treatment and experience a lower rate of survival (Goodwin et al., 1996; Balducci and Lyman, 1997; McCaffrey, 1997). Considering the above, concerns about the possibility of inadequate treatment and care have been raised (Walker et al., 1998; Ferrell, 1999; Kearney et al., 2000). Recognition of the needs of older people with cancer is required through all the phases of the cancer experience. Older people frequently present with both cognitive and physical comorbid conditions and with certain functional limitations (Repetto et al., 1997). It is not known to what extent these contribute to their perceptions about cancer and its treatment. Scarcity of evidence on the perspectives of older people means that health professionals may make paternalistic assumptions about what patients wish. Hence, this on-going study aims to enhance understanding of the patients’ perspective and views, in order to facilitate patient-focused, evidence-based treatment and care. This paper presents results from a pilot study to explore the views of older people with cancer, regarding information provided to them, decision-making and treatment.
Aims of the pilot study This study aims 1. To explore older people’s perceptions and feelings about the information they received regarding their cancer diagnosis.
Table 1
2. To explore older people’s perceptions and feelings about their treatment for cancer and the decision-making process. The purpose of the study is to obtain a validated, clinically useful working framework of: *
*
Older people’s views and preferences regarding the above areas of their cancer experience. Older people’s perceptions of positive and negative aspects of their cancer care.
Methods Sample This pilot is part of an on-going qualitative, hospital based study. Patients were recruited from inpatient areas of 2 clinical sites, a Cancer Centre and Care of the Elderly wards to ensure a representative patient population. For the main study, a purposive sample of 80 patients in total (40 from each hospital site), stratified on age group and gender, will be included. Type of cancer and time elapsed since diagnosis will be taken into consideration, in order to achieve an even representation. The inclusion criteria are: * *
*
Aged 65 years or older. Having been diagnosed with cancer and being aware of their diagnosis. Having, had or about to have curative or palliative treatment or supportive care.
The sections covered by the interview schedule are illustrated in Table 1. For the purpose of the pilot study reported here, a total of six patients (3 from each hospital site), 2
Interview schedule.
Section 1: Information about Cancer Quantity (e.g. Do you feel you received enough information about your diagnosis?) Quality (e.g. What aspects of your illness have you been given information about?) Sources (e.g. Who gave you information about your illness?) Section 2: Decision-making Patient involvement (e.g. How much do you feel you were involved in making decisions about your treatment?) Family involvement (e.g. How much do you feel the wishes of your family affected your treatment?) Factors affecting treatment decision-making (e.g. What do you think are important aspects to consider when making decisions about your treatmentFside effects, your age?) Section 3: Treatment Information needs regarding treatment (e.g. Is there anything about your treatment that you would like more information about?) Feelings (e.g. What effect did the treatment have on your life, positive and/or negative)?
ARTICLE IN PRESS Older people with cancer
male and 4 female, were interviewed in hospital. The age of participants ranged from 65 to 96 years. Duration of interviews ranged from 30 to 50 min.
Design and procedure Semi-structured, qualitative interviews were conducted with older people with cancer. Each patient participated in one interview. All interviews took place in the hospital by the same researcher to ensure continuity of approach. Prospective participants were initially approached by medical or nursing staff responsible for their care and verbal consent was obtained at this stage. Willing participants were then approached by the researcher, where both verbal and written consent was obtained. Prior to interview, patients’ cognitive and physical status were assessed by using standardised clinical measures, the Mini-Mental State Exam (Folstein et al., 1975) and the Barthel Activities of Daily Living (ADL) Index (Mahoney and Barthel, 1965), respectively. Following the interview, socio-demographic (e.g. living conditions, home support) and medical information (e.g. type and location of cancer, comorbid conditions) were noted from case notes.
Theoretical framework and data analysis Information generated from the semi-structured pilot interviews was subject to framework analysis (Bryman and Burgess, 1994). This method is facilitated through the introduction of specific issues and themes to the interview schedule, which were subsequently
259
sought out and identified in the analysis. There are certain reasons for choosing framework analysis. Firstly, this technique allows the researcher to be guided in the analysis by a list of core general issues, important for the scope of the study, without being either too rigid or too immersed in unstructured data. Secondly, it allows for new relevant issues to be generated from the data. Thirdly, it makes analysis of large amount of data more manageable. An established computer programme (i.e. Atlas-Ti) designed for storage and analysis of qualitative data was used to facilitate analysis. Ethical approval was granted by the Local Board Ethics Committee.
Results Cognitive alertness scores ranged from 24 to 29 in the Cancer Centre (optimum range 0–30, with 0 score meaning the patient did not answer any items and 30 that all items were answered successfully), whereas in the Care of the Elderly wards scores ranged from 7 to 26. All patients in the Cancer Centre scored the highest (20) in physical status, whereas scores in the Care of the Elderly wards ranged from 9 to 19 (optimum range 0–20, with 0 score meaning the patient did not answer any items and 20 that all items were answered successfully). Participants of the pilot appeared generally content with information provided to them and their treatment. However, pilot interviews yielded two main areas regarding the views of older people with cancer, firstly about treatment and quality of life (see Fig. 1) and, secondly about the ‘‘side
Figure 1 Older people’s views on treatment and quality of life.
ARTICLE IN PRESS 260
Z. Chouliara et al.
Figure 2 The side effects vs. cure.
effects versus cure dilemma’’ (Fig. 2). The views of the participants regarding each of the above areas will be briefly presented below.
Views about treatment and quality of life
Older people claimed that side effects would not discourage them from opting for treatment. They provided a number of reasons why they were prepared to tolerate side effects, which are summarised as follows: *
Older people with cancer wanted as much treatment as they could receive, because they wished to prolong their life as much as possible. However, their wish to prolong life was accompanied by their wish to have an at least ‘‘average quality of life’’. Their definition of ‘‘average quality of life’’ consisted of the following: * * *
*
Enjoying life. Not suffering severe pain. Not viewing cancer as a big problem and a radical disruption in normal everyday life. Being able to put cancer-related worries aside occasionally.
*
*
*
*
*
*
Views on the ‘‘side effects versus cure dilemma’’ Although older people appear keen on receiving treatment, they recognised certain limits/conditions on their wish, which are summarised below: *
*
* *
If treatment side effects are not debilitating to the extent that they would become a burden to loved ones. If treatment is effective for their type of disease and their physical status. If the treatment is offered to them. If they feel they are still cognitively and physically able to tolerate it.
*
*
Wishing to improve their health (‘‘get better’’). Seeing side effects as an unavoidable and necessary part of treatment (‘‘you need to take the good with the bad’’). Believing in the effectiveness of the specific treatment. The specific treatment being the only suitable for their particular type and location of the disease. Not wanting to become a burden, by leaving their illness untreated and consequently deteriorating. Following doctor’s advice that a specific treatment is the best for their case. Using acceptance as a general stance and coping strategy regarding their illness. Having been provided with information regarding possible side effects, knew what to expect and were prepared to cope with them. Adopting an optimistic stance towards treatment (e.g. ‘‘even if it is difficult in the beginning, ‘‘things will pick up later’’).
Contribution to research and care The results of the pilot study provided evidence that the on going study will contribute to clinical practice by providing health professionals with a framework for assessing and addressing the needs
ARTICLE IN PRESS Older people with cancer
and wishes of older people with cancer. The pilot study identified a number of issues, which seem to be important for older people with cancer. These included availability and accessibility of information sources, alternative information sources, quality of life in relation to treatment and side effects as a factor in treatment decision-making. It has also provided a preliminary description of older people’s views regarding their illness and its treatment and of their decision-making process. These issues will be explored in more depth in the main study. As a result of the pilot, minor changes have been made in the language and format of the interview schedule to assist in a more efficient exploration of the above issues in the main study. In view of the pilot results, the on going study has the potential to make a contribution to research on older people with cancer in a number of ways. First, a patient-centred approach should be adopted, with older people’s views and perspectives being directly assessed. Second, cognitive and mental frailty should be routinely assessed and their association with views and attitudes examined. Third, heterogeneity of older people should be considered both in terms of research but more importantly in routine clinical care.
Conclusion This study begins to suggest a shift in perspective in both research and clinical practice in care of older people with cancer is required. Instead of providing older people with the treatment and care felt to be appropriate by the professionals, it should be possible to identify the views of patients’ themselves and consequently implement them. This should enable a systematic framework of evaluation and an appropriate use of time, resources and skills in cancer care. Another value of the research is, that contrary to previous evidence (Yancik and Ries, 1991), older people seem to have organised and clear views and preferences regarding treatment (e.g. how much treatment) and quality of life. From the pilot study, it became clear that older people do want treatment, but they are equally concerned about their quality of life. Unlike previous findings (Marshall, 1981), in the present pilot treatment and quality of life were not contradictory but complementary terms. In addition, older people, although often concerned about
261
side effects, still wanted as much treatment as possible. They were prepared to consider side effects on certain conditions, in order to improve their chances of survival and maintain functioning. Older people with cancer were also capable of describing an organised decision-making process they use to evaluate different factors (e.g. side effects) and arrive at decisions. This contradicts previous findings, which portrayed older people’s decision-making as more simplistic or rigid, simply opting for less aggressive treatment (Samet et al., 1986). In the main study we hope to explore these issues further and identify other issues that are important for older people with cancer and the clinicians responsible for their care.
References Balducci, L., Lyman, G.H., 1997. Cancer in the elderly: epidemiologic and clinical implications. Clinics in Geriatric Medicine 13 (1), 1–14. Bryman, A., Burgess, R.G., 1994. Analysing qualitative data. Routledge, London, New York. Ferrell, B.R., 1999. The marriage: geriatrics and oncology. Geriatric Nursing 20 (5), 238–240. Folstein, M.F., Folstein, S.E., McHugh, .P.R., 1975. Mini mental state: a practical method for grading the cognitive state of patients for the clinician. Journal of Psychiatric Research 12, 189–198. Goodwin, J.S., Samet, J.M., Hunt, W.C., 1996. Determinants of survival in older cancer patients. Journal of the National Cancer Institute 88, 1031–1038. Kearney, N., Miller, M., Paul, J., Smith, K., 2000. Cancer and the elderly: attitudes of healthcare professionals. Annals of Oncology 11, 599–601. Mahoney, F.I., Barthel, D.W., 1965. Functional evaluation: the Barthel index. Maryland State Medical Journal 14, 61–65. Marshall, V., 1981. Physician characteristics and relations with older patients. In: Haug, M. (Ed.), Elderly Patients and Their Doctors. Springer Publishing Company, New York. McCaffrey Boyle, D., 1997. Cancer in the elderly: the forgotten minority. In: Hogan, C.M., Wickham, R. (Eds.), Issues in Managing the Oncology Patient. A Current Reference and Bibliography. Philips Healthcare Communications Inc, New York. Repetto, L., Granetto, C., Venturino, A., 1997. Comorbidity and cancer in the aged: the oncologists’ point of view. Rays 22 (1 Suppl), 17–19. Samet, J., Hunt, W.C., Kay, C., Humbel, C.G., Goodwin, J.S., 1986. Choice of cancer therapy varies with age of patient. Journal of the American Medical Association 255, 3385–3390. Walker, L.G., Kohler, C.R., Heys, S.D., Eremin, O., 1998. Psychosocial aspects of cancer in the elderly. European Journal of Surgical Oncology 24 (5), 375–378. Yancik, R., Ries, L.G., 1991. Cancer in the aged. Cancer 68 (Suppl. 1), 2502–2510.