1 Institut Sainte-Catherine, Avignon; 2 Institut Bergonié, Bordeaux; 3 Centre Hospitalier Lyon-Sud, Service Radiothérapie, Pierre-Bénite; 4 Centre Hospitalier Princesse Grâce, Service de Radiothérapie, Monaco; 5 Institut Gustave-Roussy, Direction Soins Infirmiers, Villejuif; 6 Bristol-Myers Squibb, Division Oncologie, Rueil-Malmaison; 7 Harris Medical International, Paris, France
*Correspondence to: Dr D. Serin, Institut Sainte-Catherine, Chemin du Lavarin, BP 846, 84086 Avignon cedex 2, France. Tel: +33-4-90-27-62-63; Fax: +33-4-90-89-62-74; Email: danielserin{at}club-internet.fr
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Abstract |
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Methods: Women with breast or gynecological cancer who had either received at least 3 months of treatment or had completed treatment <1 year before the study were enrolled in this cross-sectional, observational study.
Results: From February to November 2001, 2839 questionnaires were distributed; 1870 were returned (66% response rate), mainly by breast cancer patients (87%). While 92% of women reported having received information at diagnosis, 34% of relapsed patients complained of lack of information concerning their disease and treatment. Only 18% of patients were included in the treatment decision process and 66% of women obtained complementary information from the media, patients and care professionals. Fatigue was the most severe problem quoted (78% of cases) and was poorly managed by caregivers due to diagnostic and treatment difficulties. Problems relating to family and to affective and socio-professional life were poorly identified and remained largely unmanaged.
Conclusions: Information given to female cancer patients must be improved in relapsed patients, particularly regarding the adverse effects of treatment. Psychosocial management requires a more holistic approach through new channels, together with the coordination of existing structures.
Key words: breast cancer, delivery of patient care, gynecological cancer, patient information, supportive care
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Introduction |
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In 2001, we conducted this cross-sectional, observational study, the objective of which was to define the management of patients treated for female cancer at various stages of care. Four data categories were identified: information relating to diagnosis, disease and treatments; physical, psychological, material, familial and professional problems encountered, and the assistance and support given; relations with medical personnel and other caregivers; and organization of the medical, paramedical and social procedures involved.
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Patients and methods |
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A steering committee (comprising four clinicians and a nurse: J.M.D., J.G., N.G., P.R. and D.S.) was formed to develop the methodology. Interviews with physicians, caregivers and patients provided source material for the questionnaires. A scientific committee (independent experts) was set up to validate the scientific quality of the project, the objectives and the methodology. The patient questionnaire was constructed specifically for the survey using data generated by interviews with 30 patients. Physician and caregiver questionnaires were tested in 15 centers. A need to compile two types of patient questionnaires was identified: one for group A, in which the disease was at an initial stage, and one for group B, in which the patients had recurrent disease. The contents of the questionnaires are summarized in Table 1.
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Given the response rate (RR) observed in the previous survey (28%) [1], the number of patient questionnaires to be distributed was estimated to be 3000 in order to obtain 1000 completed contributor responses. The number of centers was set at 100, based on a mean recruitment figure of 30 patients per center. The COSI software package, version 3.5 (STATIRO®, Montrouge, France), was used for statistical analysis. The
2-test was used to compare qualitative data (populations, percentages) and Student's t-test was used for quantitative data (mean, standard deviation). An analysis comparing the matched questionnaires (patientphysician, patientcaregiver, physiciancaregiverpatient) was performed to demonstrate concordance/discordance between the groups.
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Results |
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Complementary information
The need for complementary information on the disease or treatments or a second opinion appeared to depend on initial diagnosis, patient age and inadequacy of information at the time of management initiation. Sixty per cent of the women (mainly young and newly diagnosed) sought complementary information on their disease or treatment. Women experiencing recurrence were more passive in this context, independent of their age. Figure 5 details the sources of information. Thirty-three per cent of patients sought a second opinion, of whom 42% had the impression that they were not given all the necessary information at the start of disease management. The 624 patients who consulted another physician most frequently did so upon their own initiative (73%). The main objectives were to obtain further information on the disease (53% of patients who consulted another physician) and to investigate treatment alternatives (50% of patients experiencing recurrence). Group A patients turned more frequently to a general practitioner (GP) (62%), while those in group B consulted another oncologist (61%).
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Difficulties encountered during treatment (Table 3) and disease management (Table 4
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Pain. Pain was frequent from the time of disease onset (45% of patients) and was independent of disease stage or tumor site. For 70% of group A patients, pain was experienced at the time of surgery, while 65% of group B patients experienced pain at the time of relapse, before treatment initiation. Pain was experienced during the treatment period (chemotherapy and radiotherapy) in 70% of patients, irrespective of disease stage. Irrespective of the time of pain onset, 25% of patients regretted the absence of pain management. Where pain was managed, treatment efficacy was rated as positive in over two-thirds of patients, particularly with regard to pain experienced in the perioperative period (88% positive). One-third of the 840 patients reporting pain were receiving analgesic treatment (24% group A, 56% group B). In the majority of cases, the oncologist initiated treatment (55%) and the attending physician renewed the prescription (53%).
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Psychological problems
The most frequent psychological problems were anxiety (66%), sleep disorders (48%) and depression (37%). Anxiety was almost always detected by physicians and caregivers (2% and 7% of don't know responses, respectively). However, support was only offered in 44% of cases. Sleep disorders were managed in 40% of patients, but the problem was poorly recognized by physicians and caregivers (12% and 33% of don't know responses, respectively).
Problems in daily and social life
Almost half of women reported difficulty in doing housework (48%), but in 40% of cases no assistance was proposed. Similarly, almost one woman in two complained of the non-management of problems concerning affective and sexual relations with their partner (50%), child care (49%), relations with health insurance organizations (50%), financial difficulties (45%), professional life (42%) and relations with family and friends (41%). These problems were difficult to manage in that they were mostly unidentified by caregivers (don't know responses: 10 to 39% for physicians and 36 to 62% for caregivers, depending on the problem encountered). For instance, housework problems were poorly recognized by caregivers, while physicians perceived them more clearly (patient concordance rate: 30% for caregivers and 44% for physicians). The differences in concordance between nurses and radiotherapists, on the one hand, and physicians, on the other, were particularly marked with respect to administrative, material and affective problems. Even when problems were noted, little support was offered.
Problems with care organization
Care and administrative formalities inherent to cancer were more effectively managed by caregivers. Group B patients responded that three areas required improvement: waiting before chemotherapy sessions (35% in group B versus 25% in group A), difficulty getting in touch with the physician quickly (15% versus 11%) and difficulties in confidential access to the physician (13% versus 9%).
Home management
In 80% of patients, home follow-up was conducted by a GP. The GP was in close contact with the refering caregiver (88% of cases) and was closely involved in disease management (85%), particularly with regard to the organization of patient follow-up. In the follow-up of relapsed patients, the GP was most closely involved in the treatment of symptoms such as fatigue, gastrointestinal disorders and pain. The GP also played an important supportive role for 84% of patients with relapsed disease.
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Discussion |
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Patients appeared to be better informed in 2001 than in 1993. While almost all patients reported that they were informed about their disease at the time of initial diagnosis, information was inadequate in the event of recurrent disease, in particular with respect to the foreseeable course of the disease, prognosis and the probability of recovery. The desire for more exhaustive information was reported in other studies, irrespective of disease stage [4, 8
]. During initial treatment, Lobb's study showed that 91% of patients wished to be informed about their prognosis and 63% felt that their oncologist should specifically ask them whether they wished to be informed about their prognosis [9
]. Women also felt that the clinician should check they had correctly understood the information given, give them the opportunity to ask questions (99%) and explain fully the medical terms used (98%). Providing the patient with information on their disease is essential since it has been shown to reduce anxiety and depression [10
]. The converse is also true [11
]. Alliot stressed the inadequacy of information on drug names [12
]. All types of diseases confounded, only 45% of French patients are correctly aware of their treatment, while 20% are totally ignorant about it; 51% of the patients in Tamburini's study [13
] and 82% in Stiggelbout's study [14
] felt the need to be better informed. The provision of written information does not necessarily ensure greater comprehension; patients prefer to obtain information directly from medical personnel [15
, 16
].
The present survey also demonstrated the authoritarian manner of medical decision making: only 18% of patients were proposed alternative treatments by their physician. Bruera et al. showed that 89% of breast cancer patients preferred to play an active role in treatment decision making [17]. The patient's point of view was only taken into account by 42% of attending physicians. A recent study showed that in patients with incurable cancers, decision-making regarding palliative treatment was anxiogenic [18
]. Anxiety was not related to information delivery, but rather to the degree of active participation demanded by the physician. Patients in a precarious general condition and elderly patients preferred treatment decisions to be made by the physician.
In this study, 60% of patients sought complementary information. Patients and former patients are an important information source (64%): contact with a woman who has successfully coped with disease may be very helpful to newly diagnosed patients. People working in a medical environment constitute a source of information in 55% of cases. The main sources of information were the media (for 65% of patients), i.e. the lay press, television, newspapers, magazines. The Internet was used by 13% of patients in their search for additional information on their disease and treatments.
Pain at the time of diagnostic procedures was inadequately managed. Only the perioperative period was managed correctly: analgesic treatment was considered fully effective by 32% of patients and moderately effective by 55% at the time of surgery. The French perception of analgesic treatment was investigated by Larue in 1990 and 1996 [19]. Oncological pain was better understood in 1996: 65% of respondents considered that while pain was rare in the early stages of disease (compared with 49% in 1990), it was frequent in the more advanced stages (84% in 1996 compared with 72% in 1990). More than half of the subjects reported that their information on pain treatment was derived from television (59%), the press (47%) and caregivers (45%). Given that the overall population is increasingly well informed about pain and its treatment, we must now determine why pain remains such a problem at certain stages of the disease.
Fatigue was the physical problem most frequently reported by patients in the present study (78%). Fatigue may be secondary to physical factors such as anemia, pain, inactivity, inadequate diet, vomiting, infection or fever, but may also be related to psychological causes such as anxiety, depression, insomnia and anticipatory nausea [20, 21
]. A study of 544 patients treated with chemotherapy or radiotherapy reported regular fatigue in 78% of cases, and daily or almost daily fatigue in 53% of cases. The family considered that the patient was tired in 86% of cases and physicians reported it in 75% of cases. Fatigue has a marked impact on the patient's everyday quality of life, notably work (61%), physical well-being (60%) and psychological well-being (51%). However, fatigue is rarely spontaneously reported to the physician during consultation (two-thirds of patients). It is important to encourage patients to express all components of their fatigue. Parcours de Femmes 2001 points to the difficulties of evaluating fatigue and managing fatigue, since there is no effective treatment for it, except symptomatic treatments intended to correct the underlying conditions. This survey also showed sleep disorders to be poorly identified by caregivers, probably due to lack of oriented questions. The relationship between fatigue and sleep disorders has been well documented, as have difficulties in measuring and treating fatigue. Fatigue is probably a key issue in the management of cancer care, but one which the professionals are ill equipped to deal with.
It has to be noted that the high percentages of patients suffering from fatigue or psychological problems such as anxiety, sleep disorders and depression can be related to the tumors concerned. Engel et al. showed that breast cancer patients, despite better prognoses, appear to suffer more psychological problems than rectal cancer patients [22]. In particular, they suffered significantly worse emotional functioning, fatigue, pain and sleeplessness. Female rectal cancer patients did not suffer the same problems [22
].
This study was also designed to identify problems in daily and social life; 48% of patients suffered from problems in these domains and it is clear that caregivers and physicians tend to underestimate their importance (no support given in 40% of cases). In France, the social difficulties experienced by cancer patients are real and remain poorly managed. Dilhuydy et al. conducted a study in 200 patients, of whom 65% were referred to a social worker and 35% consulted one spontaneously [23]. The need for medical, social or associational follow-up was evidenced in 70% of cases. Administrative and psychosocial problems were the most frequent and were considered more important by the social worker than the patient. The problem is greater in patients with metastatic disease. The authors concluded that social worker consultation should be systematic and conducted early in the disease trajectory in order to implement preventive actions and appropriate follow up.
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Perspectives |
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Better understanding by physicians and other caregivers of patient's physical and psychological disorders has resulted in improved care in this area. Recent French government incentives have considerably raised awareness of pain and its treatment. Similarly, cancer patients are now being provided with more psychological support. French oncologists are being trained in psycho-oncology and are gaining an understanding of the patient experience. This in turn improves patientphysician interaction. Fatigue remains a key problem. The following measures should be considered.
Health-care teams' ignorance of the material and social problems of female cancer patients was highlighted in this survey. Who should take care of the domestic, financial, emotional and sexual problems that arise in a family struck by cancer when the woman's salary is needed to pay back debts? These issues are not traditionally managed by physicians. Does comprehensive care mean that this should no longer be the case? Admittedly, oncologists cannot become social workers or psychologists, but they must be able to identify psychosocial risk factors during consultation. They should have a proactive attitude in this area and do the following.
In conclusion, Parcours de Femmes 2001 draws attention to the close relationship between the systemic nature of purely medical issues and the social, material and psychological problems of cancer patients. We, practitioners who treat these pathologies must work to help resolve them. We have outlined above a few relevant courses of action. Beyond this, only truly comprehensive patient management can be effective. At present, the different types of support available are scattered around various departments, and patients and physicians are either unaware of their existence or have difficulties accessing them. The same holds for patients' rights and their right to claim public assistance. Coordination of support within easy-to-identify organizations in each cancer center would appear to be paramount [24].
In France, the priorities included in the Plan Cancer announced by the President of Republic on 24 March 2003 are the provision of psycho-oncological support to patients, the coordination of support services, and the need to use tact when making announcements to patients. Specifically, the cancer policy commission (Commission d'Orientation sur le Cancer) in France proposes that Functional Cancer Support Units [USO (Unités Fonctionnelles de Soins de Support en Oncologie)] that provide specific cancer-related care and bring together all those involved (i.e. psycho-oncologists, social workers, estheticians, etc.) be created [25]. The commission also calls for the standardization of consultations in which a cancer diagnosis is announced.
The Parcours de Femmes 2001 survey has drawn attention to both the progress made in terms of information provided to cancer patients in France and shortcomings regarding support services. New efforts made by health care teams and the new governmental measures currently under consideration, if they actually yield results, should result in progress in comprehensive patient management.
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Acknowledgements |
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Received for publication December 1, 2003. Revision received February 25, 2004. Accepted for publication February 25, 2004.
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References |
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