- Email: [email protected]
The patient's point of view
Annals of Oncology 6 (Suppl. 2): S65-S68, 1995. O 1995 Kluwer Academic Publishers. Primed in the Netherlands.
Symposium article The patient's point of view Results of the Working Group on Socio-Psychological Implications of Follow-up *For list of authors and affiliations see page 68
Summary
Conclusions: The final document presented to the Jury of the Conference focused on five aspects particularly relevant to the patients: 1. the need of a regular clinical examination as a key point of follow-up; 2. the importance of being assured of continuity of care delivered by a multidisciplinary team; 3. the importance of full information sharing between patient and physician on diagnosis and follow-up; 4. the need for explicit guidelines to assure that patients receive good quality care and to minimize unjustified variations; 5. the importance of breast cancer patients' associations was confirmed by all participants.
Introduction
regarding the natural history of the illness and different phases of follow-up [2]. Moreover, few data are available concerning the psycho-social impact and patient preference on follow-up. Recently, results of a survey performed within the framework of the clinical trial carried out the GFVIO group (assessment of the effectiveness of two different follow-up strategies) with over 1,000 breast cancer patients have been published [3]. The survey highlighted the following points: a) two different follow-up protocols - an 'intensive' one including clinical examinations and radiologic testing (mammography, chest X-ray, bone scan, liver echography) to be performed at preset intervals and another, 'less intensive' protocol, involving only clinical examinations and a mammography during the same time scale as the previous protocol - proved to have the same impact on the quality of life of the patients. The data collected through the questionnaires showed, in fact, that frequent check-ups did not seem to affect important aspects of patients' lives, such as emotional stress, satisfactory relations with physicians and health-care workers, body image and presence of symptoms; b) most, patients, when asked about the frequency and intensity of clinical examinations and radiologic tests, stated they would rather undergo regular follow-ups and controls, despite the absence of symptoms, thus expressing their trust in the advice and therapies prescribed by the physician.
The general rationale of involving patients' representatives in the development of practice guidelines has been outlined elsewhere see 'A shared effort toward better quality care' by R. Grilli [1]. With reference to the issues concerning breast cancer follow-up, we felt it was important to consider the 'non-clinical' aspects of the care and procedures at stake. In light of all the scientific controversies on the effectiveness of different follow-up schemes, we believe that the clinical examination and the other instrumental and laboratory tests currently employed in monitoring patients should be regarded not only for their potential clinical usefulness in patient management, but also as opportunities for generating information. While undergoing periodic clinical and/or radiologic examinations, patients may obtain information on their current health status that could have either a positive or negative effect which is relatively independent of the clinical value of follow-up. In Italy, the relationship between the breast cancer patient and her physician is partly limited by the lack of open communication regarding diagnosis. As pointed out by a study with a large patient population, currently, a large proportion of patients are not told when they have cancer. Non-disclosure is, in particular, related to information about diagnosis. This complex type of patient-doctor communication influences the patient's satisfaction and, in general, all subsequent information
Key words: breast cancer follow-up, psycho-social impact
Downloaded from http://annonc.oxfordjournals.org/ at Georgetown University on August 28, 2015
Aim of the Study Group for Psycho-Social Implications of Follow-up: For the first time in Italy, patients and members of breast-cancer patients' associations have been offered the opportunity to participate in the production of recommendations for the framework of a national Consensus Conference on the follow-up of breast cancer. Organization and methods of the working groups: Three different working groups were assembled. The first performed an 'epidemiological analysis', starting with available data from surveys carried out in Italy. The second performed a qualitative assessment of personal response to the follow-up experience. Finally, the third group organized a focus group of patients treated in the Apulia region, coordinated by a surgeon, a radiotherapist and a psychologist.
66 Table 1. First experience. Methods: epidemiologic approach Number of breast cancer patients: 85 Geographical/cultural setting: Northern Italy (Milan-Florence area)
Table 2. Second experience. Methods: Content Analysis Number of breast cancer patients: 57 Geographical/cultural setting: Northern Italy (Milan-Florence area) The objective of this group was to undertake a qualitative assessment, by means of Content Analysis techniques, of personal response during the follow-up period in order to improve both the methodology and therapeutic relations. A number of patients were asked to write an essay on the following topic: Experiencing disease, treatment and recovery is a very personal matter. It is important to pass on to others the knowledge and understanding of what may be of help in planning good-quality treatment and good patient-physician relations. For these reasons, we are asking you to describe some of your experiences (episodes, situations, relations) with reference to the period subsequent to discharge from hospital (check-up or follow-up monitoring stages). We would like to be able to use your words to report the worst and best experiences regarding patient-physician relations, facilities, equipment, radiologic examinations A total of 57 essays were collected and processed to produce a qualitative grading of the patients' experiences. Ultimately, the aim was to capture the meaning of that portion of the patients' lives called the 'control' phase, or, to put it more simply, the time in which they undergo examinations and must relate to the medical staff. This is a time which may pave the way to recovery, or otherwise, lead to other therapy and further anguish.
Organization of the working group
In accordance with the authors' intentions, it should be borne in mind that the term 'psycho-social' was adopted herein to indicate a rather broad series of issues ranging from personal response to the disease (psychological) to the entire range of experiences related to the encounters with the hospital and health-care professionals. This study has primarily focused on these latter issues, the aim being to assess and, possibly, to forward a number of suggestions and proposals for future actions. This paper is the result of the work and cooperation with patient groups who have reconsidered their personal experiences from a different angle. While patient-involvement was a clearly-stated policy for the Consensus Conference from the outset, deciding on how this was to be carried out in practice proved to be a more difficult task. We did suffer from the fact that this was indeed our first experience with direct patient-involvement in a Consensus Conference, in Italy. According to the general scheme of the Conference, three working groups were formed to work on specific facets of the problem and compare results at the end of the assignment. The groups differed from each other as to the methodology applied and the cultural-geographic setting of the patients. The first group, coordinated by the Mario Negri Institute of Milan, undertook an 'epidemiologicaT analysis, starting from data available from surveys of patient groups in Italy (see Table 1). The second group, coordinated by two psychologists from the Cancer Institute of Genoa, made a qualitative assessment of personal response to the follow-up experience (see Table 2). Finally, a surgeon, a radiotherapist and a psychologist from the Polyclinic and Oncology Institute of Bari, coordinated the work of a focus group of patients who had received treatment at the two hospitals in the Apulia region (see Table 3). Recommendations and suggestions for action
The full text of the document produced by the three working groups (available on request in Italian only) reports all the opinions as expressed by the patients. Here the discussion will be restricted to the key issues as they were presented at the Consensus Conference. When examining them in detail, the following points should be kept in mind: • the common sense used to identify some aspects seen as indicators of good follow-up, dem-
Downloaded from http://annonc.oxfordjournals.org/ at Georgetown University on August 28, 2015
The objective was to process the accounts of experiences collected by associations of breast cancer patients or from individual patients in a list of the most meaningful follow-up features with the aim of identifying those which apply to all patients and therefore, would be applicable to all treatment institutions, both specialized and general. The GIVIO data, which were partly confirmed by a smaller survey carried out in the Florence area, triggered a lively discussion within the working group. The following issues were pointed out a) the willingness to participate in a joint project and to share experiences in order to improve follow-up work; b) the importance (due to the high incidence of the disease) and need (due to the broad range of recorded behaviours and experiences) of providing physicians and administrators with indications on follow-up policies, based on preferences stated by the patients; c) the follow-up issue should be considered one stage of the illness, and it should, therefore, take into account the other components of the illness (hospitalization, first admittance and surgical treatment). Once the four follow-up key aspects were identified - time scale and procedures, the role of the physician, trust, information-related expections and satisfaction - the group decided to invite the patients to answer a questionnaire aimed at identifying which aspects/conditions were to be considered as: • essential: that is, basic, sufficient aspects/conditions for all breast cancer patients; • desirable: that is, aspects/conditions which, if provided, would encourage more follow-up compliance and make it easier to solve the patients' clinical, psychological and practical problems; • unacceptable: that is, aspects/conditions or behaviours which should never occur during follow-up because of the heavy psychological burden and practical impact.
The goal of this activity preparatory to the Consensus Conference was to assess the patients' perception of the care they received after their primary treatment for breast cancer and how much they value the role of the tests and the clinical examinations through which their health status is periodically monitored.
67 Table 3. Third experience. Methods: Focus group Number of breast cancer patients: 15 Geographic/cultural setting: Southern Italy (Ban area)
onstrates how little awareness exists among patients as to their right to the most basic forms of 'good health care'; • the homogeneity of the conclusions of the three experiences described in this paper despite the different methodologies, the diverse patient characteristics, and geographical setting is a good omen for the generalization and implementation of our conclusions. A regular clinical examination is the most highly valued component of routine follow-up. Women expect that physicians go beyond his/her professional competence, which the patients take for granted. They would like to have him/her sharing the entire experience as their 'traveling companion', from the time of diagnosis up to the follow-up stage. This, of course, implies that it is highly desirable that each patient be assisted by the same physician, and that the latter be able to dedicate more time than usual to each individual patient. This is certainly inconceivable when centers are overloaded with large numbers of patients and a high turnover of medical staff. This problem automatically leads to the necessity to create a team of experts who would be present through
Acknowledgements
The authors wish to thank Ms. Cinzia Cipollina and Ms. Resy Ruggiata for the editorial assistance. This work was partially supported by the CNR (National Research Council, Rome) ACRO Grant No. 94.01322.PF39.
Downloaded from http://annonc.oxfordjournals.org/ at Georgetown University on August 28, 2015
The objective of this working group organized with the patients of the Oncology Institute of Bari was to shed light on the psycho-social features of follow-up. This was achieved through an extremely flexible organization and grounded on the most-deeply felt topics and needs of the patients. The group coordinators listed the problems, planned and organized themes and data, collected contributions and suggestions, designed the session work. They held six fortnightly meetings with the patients and seven other meetings amongst themselves. The main achievement was that of succeeding in encouraging the patients to speak about their experiences in the most natural and spontaneous manner possible; all previously prepared experiences were carefully eliminated, as also those which had been previously dealt with by patients' associations. The latter were invited to monthly meetings with the coordinators, during which they contributed to the assessment and discussion of cases and integrated the work and activity of the group. They took part only in the general, final meeting with the patients. The reasons underlying this type of direct, non-mediated, non-filtered approach are to be found in the belief that the cultural background and schematic mentalities hinder genuine understanding of the patients' innermost feelings. A continuous effort was made to remove all forms of bias and hence create the optimal conditions for listening, analyzing, understanding, provoking, and allowing often extremely confused and indistinct feelings to surface. There was full awareness among the coordinators that attempting to generalize such intimate, indistinct and often faded problems, memories often blurred, impalpable, frequently rejected or not accepted by the patients themselves, was next to impossible. Each patient, as every human being - an affirmation of which we are fully convinced - is a world apart: a microcosm of feelings, experiences, social and family environments, sensibilities, and personal talents. Hence, the determination to establish rules to be applied to all situations is a severe error as well as a form of presumption.
out the course of the illness and follow-up. Patients often feel left to themselves, or rather, 'handed over' from one specialist to another (e.g., when they begin radiotherapy) and they state the need for an extensive and fruitful cooperation among the specialities involved. This approach would make access to the different services easier, while at the same time developing a greater consistency among physicians regarding provision of care and information. A closely related issue is that of information: patients want to be thoroughly informed. Desire to receive complete, non-reticent information touches on a problem that goes well beyond the specific issue of follow-up, but rather involves the entire process of being ill. As for follow-up, patients demand to be informed as comprehensively as possible, right from the beginning of their disease. Such information should include the forms, regularity and length of clinical and/or radiologic examinations. One point which was often stressed is the feeling of anxiety and insecurity arising from unclear, incomplete information. This is the reason why patients demand more respect as subjects - not objects - of the illness. On these grounds, patients call for the definition of guidelines common to all follow-up protocols. One particularly disconcerting fact is that patients with similar disease have to undergo different protocols, both in terms of methodology and scheduling of tests. Two indications therefore have been clearly stated: one advocates procedure homogeneity, whenever possible; the other points to the necessity to consider the experimentation of new diagnostic tests only within the framework of properly designed clinical trials projects and not be performed haphazardly and irrationally in routine clinical practice. Finally, a last suggestion focuses on the role of the Breast Cancer Patients' Associations. They provide a good opportunity to discover and adapt oneself to the change produced by the illness. They are also an excellent source of information on personal situations and rights. These associations actually offer an important aid to patients for many social and psychological problems deriving from breast cancer. The representatives of the association, however, point out that membership in an association should not be seen as a form of progressive margination of both the disease and the patient and, primarily for this latter, they stress the paramount inportance of on-going cooperation between the associations, the health-care system and research institutions.
68 * Appendix
Polenghi, Paderno Dugnano (MI); Maria Trisciuoglio, Foggia; Mariangela Villa, Besana Brianza (MI).
List of authors and affiliations Coordinators Paola Mosconi - Epidemiologia Clinica, Instituto Mario Negri, Milano Ferrudo Aloe - Terapia del Dolore, Istituto Oncologico, Ban Giovanna Bruno - Lega Italiana per la Lotta Contro i Tumori, Ban Paolo Nitti - Divisione di Chimrgia Generale Rodolfo Redi, Policlinico, Bari Nadia Crotti and Cristiana Rossi - Servizio Psicologia, Istituto Nazionale per la Ricerca sul Cancro, Genova
Breast cancer patients Lidia Brambilla - Bari; Mariella Cagnetta, Bari; Irvana D'Errico, Bari; Maria De Bellis, Triggiano (BA); Adriana Carneglia, Bari; Vienna Falcone, Bari; Maria Cristina Fossati, Lissone (MI); Anna Mancuso Galli, Bovisio Masciago (MI); Ornella Lepore, Triggiano (BA), Antonia Magarelli, Bari; Lina Mandelli, Usmate (MI); Luciana Marini, (MI); Teresa Milella, Bari; Vincenza Mori, Bari; Adriana Peschiulli, Bari; Maria Pia
Clinicians Salvo Catania - Centra di Senologia, San Donato Milanese (MI) Maria Antonietta Nosenzo - Istituto Scienze Biomediche, Cattedra di Chirurgia Generale, Ospedale Sacco, Milano References 1. Grilli R on behalf of the Consensus Conference Organizing Committee. A shared effort toward better quality of care. The Consensus Conference on Breast Cancer Follow-up. Ann Oncol 1995; 6 (Suppl 2}. S5-S9 (this issue). 2. Mosconi P, Meyerowitz BE, Liberati MC, Liberati A on behalf of GIVIO (Interdisciplinary Group for Cancer Care Evaluation, Italy). Disclosure of breast cancer diagnosis: Patients and physician report. Ann Oncol 1991; 2: 273-80. 3. The GIVIO investigators. The impact of follow-up diagnostic testing on survival and health-related quality of life in patients with breast cancer Results from a multicentre randomized trial. JAMA 1994; 271(20): 1587-92. Correspondence to: Paola Mosconi, Biol. Sci. D Unita di Epidemiologia dellAssistenza Sanitaria Laboratorio di Epidemiologia Clinica Istituto Mario Negri Via Eritrea 62 20157 Milano, Italy
Downloaded from http://annonc.oxfordjournals.org/ at Georgetown University on August 28, 2015
Representatives of breast cancer patients associations Ada Burrone - Associazione Attive Come Prima, Milano Giovanna Fromento - Associazione Nazionale Donne Operate al Seno, Milano Maria Elisabetta Gangale - Associazione Italiana Educazione Demografica, Bari Roberta Ciurekgian Scandurra - Associazione Donna Come Prima, Firenze Margherita Serrano - Donne Operate al Seno/Donna Piu di Prima, Bari Rosanna Sorrentino - Associazione Donna e Salute, Bari
Psychologists Luisella Ferrari - Associazione Nazionale Donne Operate el Seno, Milano Giovanna Nencini - Associazione Donna Come Prima, Firenze Stefano Gastaldi - Associazione Attive Come Prima, Milano Luigi Valera - Association VIDAS, Milano
Symposium article The patient's point of view Results of the Working Group on Socio-Psychological Implications of Follow-up *For list of authors and affiliations see page 68
Summary
Conclusions: The final document presented to the Jury of the Conference focused on five aspects particularly relevant to the patients: 1. the need of a regular clinical examination as a key point of follow-up; 2. the importance of being assured of continuity of care delivered by a multidisciplinary team; 3. the importance of full information sharing between patient and physician on diagnosis and follow-up; 4. the need for explicit guidelines to assure that patients receive good quality care and to minimize unjustified variations; 5. the importance of breast cancer patients' associations was confirmed by all participants.
Introduction
regarding the natural history of the illness and different phases of follow-up [2]. Moreover, few data are available concerning the psycho-social impact and patient preference on follow-up. Recently, results of a survey performed within the framework of the clinical trial carried out the GFVIO group (assessment of the effectiveness of two different follow-up strategies) with over 1,000 breast cancer patients have been published [3]. The survey highlighted the following points: a) two different follow-up protocols - an 'intensive' one including clinical examinations and radiologic testing (mammography, chest X-ray, bone scan, liver echography) to be performed at preset intervals and another, 'less intensive' protocol, involving only clinical examinations and a mammography during the same time scale as the previous protocol - proved to have the same impact on the quality of life of the patients. The data collected through the questionnaires showed, in fact, that frequent check-ups did not seem to affect important aspects of patients' lives, such as emotional stress, satisfactory relations with physicians and health-care workers, body image and presence of symptoms; b) most, patients, when asked about the frequency and intensity of clinical examinations and radiologic tests, stated they would rather undergo regular follow-ups and controls, despite the absence of symptoms, thus expressing their trust in the advice and therapies prescribed by the physician.
The general rationale of involving patients' representatives in the development of practice guidelines has been outlined elsewhere see 'A shared effort toward better quality care' by R. Grilli [1]. With reference to the issues concerning breast cancer follow-up, we felt it was important to consider the 'non-clinical' aspects of the care and procedures at stake. In light of all the scientific controversies on the effectiveness of different follow-up schemes, we believe that the clinical examination and the other instrumental and laboratory tests currently employed in monitoring patients should be regarded not only for their potential clinical usefulness in patient management, but also as opportunities for generating information. While undergoing periodic clinical and/or radiologic examinations, patients may obtain information on their current health status that could have either a positive or negative effect which is relatively independent of the clinical value of follow-up. In Italy, the relationship between the breast cancer patient and her physician is partly limited by the lack of open communication regarding diagnosis. As pointed out by a study with a large patient population, currently, a large proportion of patients are not told when they have cancer. Non-disclosure is, in particular, related to information about diagnosis. This complex type of patient-doctor communication influences the patient's satisfaction and, in general, all subsequent information
Key words: breast cancer follow-up, psycho-social impact
Downloaded from http://annonc.oxfordjournals.org/ at Georgetown University on August 28, 2015
Aim of the Study Group for Psycho-Social Implications of Follow-up: For the first time in Italy, patients and members of breast-cancer patients' associations have been offered the opportunity to participate in the production of recommendations for the framework of a national Consensus Conference on the follow-up of breast cancer. Organization and methods of the working groups: Three different working groups were assembled. The first performed an 'epidemiological analysis', starting with available data from surveys carried out in Italy. The second performed a qualitative assessment of personal response to the follow-up experience. Finally, the third group organized a focus group of patients treated in the Apulia region, coordinated by a surgeon, a radiotherapist and a psychologist.
66 Table 1. First experience. Methods: epidemiologic approach Number of breast cancer patients: 85 Geographical/cultural setting: Northern Italy (Milan-Florence area)
Table 2. Second experience. Methods: Content Analysis Number of breast cancer patients: 57 Geographical/cultural setting: Northern Italy (Milan-Florence area) The objective of this group was to undertake a qualitative assessment, by means of Content Analysis techniques, of personal response during the follow-up period in order to improve both the methodology and therapeutic relations. A number of patients were asked to write an essay on the following topic: Experiencing disease, treatment and recovery is a very personal matter. It is important to pass on to others the knowledge and understanding of what may be of help in planning good-quality treatment and good patient-physician relations. For these reasons, we are asking you to describe some of your experiences (episodes, situations, relations) with reference to the period subsequent to discharge from hospital (check-up or follow-up monitoring stages). We would like to be able to use your words to report the worst and best experiences regarding patient-physician relations, facilities, equipment, radiologic examinations A total of 57 essays were collected and processed to produce a qualitative grading of the patients' experiences. Ultimately, the aim was to capture the meaning of that portion of the patients' lives called the 'control' phase, or, to put it more simply, the time in which they undergo examinations and must relate to the medical staff. This is a time which may pave the way to recovery, or otherwise, lead to other therapy and further anguish.
Organization of the working group
In accordance with the authors' intentions, it should be borne in mind that the term 'psycho-social' was adopted herein to indicate a rather broad series of issues ranging from personal response to the disease (psychological) to the entire range of experiences related to the encounters with the hospital and health-care professionals. This study has primarily focused on these latter issues, the aim being to assess and, possibly, to forward a number of suggestions and proposals for future actions. This paper is the result of the work and cooperation with patient groups who have reconsidered their personal experiences from a different angle. While patient-involvement was a clearly-stated policy for the Consensus Conference from the outset, deciding on how this was to be carried out in practice proved to be a more difficult task. We did suffer from the fact that this was indeed our first experience with direct patient-involvement in a Consensus Conference, in Italy. According to the general scheme of the Conference, three working groups were formed to work on specific facets of the problem and compare results at the end of the assignment. The groups differed from each other as to the methodology applied and the cultural-geographic setting of the patients. The first group, coordinated by the Mario Negri Institute of Milan, undertook an 'epidemiologicaT analysis, starting from data available from surveys of patient groups in Italy (see Table 1). The second group, coordinated by two psychologists from the Cancer Institute of Genoa, made a qualitative assessment of personal response to the follow-up experience (see Table 2). Finally, a surgeon, a radiotherapist and a psychologist from the Polyclinic and Oncology Institute of Bari, coordinated the work of a focus group of patients who had received treatment at the two hospitals in the Apulia region (see Table 3). Recommendations and suggestions for action
The full text of the document produced by the three working groups (available on request in Italian only) reports all the opinions as expressed by the patients. Here the discussion will be restricted to the key issues as they were presented at the Consensus Conference. When examining them in detail, the following points should be kept in mind: • the common sense used to identify some aspects seen as indicators of good follow-up, dem-
Downloaded from http://annonc.oxfordjournals.org/ at Georgetown University on August 28, 2015
The objective was to process the accounts of experiences collected by associations of breast cancer patients or from individual patients in a list of the most meaningful follow-up features with the aim of identifying those which apply to all patients and therefore, would be applicable to all treatment institutions, both specialized and general. The GIVIO data, which were partly confirmed by a smaller survey carried out in the Florence area, triggered a lively discussion within the working group. The following issues were pointed out a) the willingness to participate in a joint project and to share experiences in order to improve follow-up work; b) the importance (due to the high incidence of the disease) and need (due to the broad range of recorded behaviours and experiences) of providing physicians and administrators with indications on follow-up policies, based on preferences stated by the patients; c) the follow-up issue should be considered one stage of the illness, and it should, therefore, take into account the other components of the illness (hospitalization, first admittance and surgical treatment). Once the four follow-up key aspects were identified - time scale and procedures, the role of the physician, trust, information-related expections and satisfaction - the group decided to invite the patients to answer a questionnaire aimed at identifying which aspects/conditions were to be considered as: • essential: that is, basic, sufficient aspects/conditions for all breast cancer patients; • desirable: that is, aspects/conditions which, if provided, would encourage more follow-up compliance and make it easier to solve the patients' clinical, psychological and practical problems; • unacceptable: that is, aspects/conditions or behaviours which should never occur during follow-up because of the heavy psychological burden and practical impact.
The goal of this activity preparatory to the Consensus Conference was to assess the patients' perception of the care they received after their primary treatment for breast cancer and how much they value the role of the tests and the clinical examinations through which their health status is periodically monitored.
67 Table 3. Third experience. Methods: Focus group Number of breast cancer patients: 15 Geographic/cultural setting: Southern Italy (Ban area)
onstrates how little awareness exists among patients as to their right to the most basic forms of 'good health care'; • the homogeneity of the conclusions of the three experiences described in this paper despite the different methodologies, the diverse patient characteristics, and geographical setting is a good omen for the generalization and implementation of our conclusions. A regular clinical examination is the most highly valued component of routine follow-up. Women expect that physicians go beyond his/her professional competence, which the patients take for granted. They would like to have him/her sharing the entire experience as their 'traveling companion', from the time of diagnosis up to the follow-up stage. This, of course, implies that it is highly desirable that each patient be assisted by the same physician, and that the latter be able to dedicate more time than usual to each individual patient. This is certainly inconceivable when centers are overloaded with large numbers of patients and a high turnover of medical staff. This problem automatically leads to the necessity to create a team of experts who would be present through
Acknowledgements
The authors wish to thank Ms. Cinzia Cipollina and Ms. Resy Ruggiata for the editorial assistance. This work was partially supported by the CNR (National Research Council, Rome) ACRO Grant No. 94.01322.PF39.
Downloaded from http://annonc.oxfordjournals.org/ at Georgetown University on August 28, 2015
The objective of this working group organized with the patients of the Oncology Institute of Bari was to shed light on the psycho-social features of follow-up. This was achieved through an extremely flexible organization and grounded on the most-deeply felt topics and needs of the patients. The group coordinators listed the problems, planned and organized themes and data, collected contributions and suggestions, designed the session work. They held six fortnightly meetings with the patients and seven other meetings amongst themselves. The main achievement was that of succeeding in encouraging the patients to speak about their experiences in the most natural and spontaneous manner possible; all previously prepared experiences were carefully eliminated, as also those which had been previously dealt with by patients' associations. The latter were invited to monthly meetings with the coordinators, during which they contributed to the assessment and discussion of cases and integrated the work and activity of the group. They took part only in the general, final meeting with the patients. The reasons underlying this type of direct, non-mediated, non-filtered approach are to be found in the belief that the cultural background and schematic mentalities hinder genuine understanding of the patients' innermost feelings. A continuous effort was made to remove all forms of bias and hence create the optimal conditions for listening, analyzing, understanding, provoking, and allowing often extremely confused and indistinct feelings to surface. There was full awareness among the coordinators that attempting to generalize such intimate, indistinct and often faded problems, memories often blurred, impalpable, frequently rejected or not accepted by the patients themselves, was next to impossible. Each patient, as every human being - an affirmation of which we are fully convinced - is a world apart: a microcosm of feelings, experiences, social and family environments, sensibilities, and personal talents. Hence, the determination to establish rules to be applied to all situations is a severe error as well as a form of presumption.
out the course of the illness and follow-up. Patients often feel left to themselves, or rather, 'handed over' from one specialist to another (e.g., when they begin radiotherapy) and they state the need for an extensive and fruitful cooperation among the specialities involved. This approach would make access to the different services easier, while at the same time developing a greater consistency among physicians regarding provision of care and information. A closely related issue is that of information: patients want to be thoroughly informed. Desire to receive complete, non-reticent information touches on a problem that goes well beyond the specific issue of follow-up, but rather involves the entire process of being ill. As for follow-up, patients demand to be informed as comprehensively as possible, right from the beginning of their disease. Such information should include the forms, regularity and length of clinical and/or radiologic examinations. One point which was often stressed is the feeling of anxiety and insecurity arising from unclear, incomplete information. This is the reason why patients demand more respect as subjects - not objects - of the illness. On these grounds, patients call for the definition of guidelines common to all follow-up protocols. One particularly disconcerting fact is that patients with similar disease have to undergo different protocols, both in terms of methodology and scheduling of tests. Two indications therefore have been clearly stated: one advocates procedure homogeneity, whenever possible; the other points to the necessity to consider the experimentation of new diagnostic tests only within the framework of properly designed clinical trials projects and not be performed haphazardly and irrationally in routine clinical practice. Finally, a last suggestion focuses on the role of the Breast Cancer Patients' Associations. They provide a good opportunity to discover and adapt oneself to the change produced by the illness. They are also an excellent source of information on personal situations and rights. These associations actually offer an important aid to patients for many social and psychological problems deriving from breast cancer. The representatives of the association, however, point out that membership in an association should not be seen as a form of progressive margination of both the disease and the patient and, primarily for this latter, they stress the paramount inportance of on-going cooperation between the associations, the health-care system and research institutions.
68 * Appendix
Polenghi, Paderno Dugnano (MI); Maria Trisciuoglio, Foggia; Mariangela Villa, Besana Brianza (MI).
List of authors and affiliations Coordinators Paola Mosconi - Epidemiologia Clinica, Instituto Mario Negri, Milano Ferrudo Aloe - Terapia del Dolore, Istituto Oncologico, Ban Giovanna Bruno - Lega Italiana per la Lotta Contro i Tumori, Ban Paolo Nitti - Divisione di Chimrgia Generale Rodolfo Redi, Policlinico, Bari Nadia Crotti and Cristiana Rossi - Servizio Psicologia, Istituto Nazionale per la Ricerca sul Cancro, Genova
Breast cancer patients Lidia Brambilla - Bari; Mariella Cagnetta, Bari; Irvana D'Errico, Bari; Maria De Bellis, Triggiano (BA); Adriana Carneglia, Bari; Vienna Falcone, Bari; Maria Cristina Fossati, Lissone (MI); Anna Mancuso Galli, Bovisio Masciago (MI); Ornella Lepore, Triggiano (BA), Antonia Magarelli, Bari; Lina Mandelli, Usmate (MI); Luciana Marini, (MI); Teresa Milella, Bari; Vincenza Mori, Bari; Adriana Peschiulli, Bari; Maria Pia
Clinicians Salvo Catania - Centra di Senologia, San Donato Milanese (MI) Maria Antonietta Nosenzo - Istituto Scienze Biomediche, Cattedra di Chirurgia Generale, Ospedale Sacco, Milano References 1. Grilli R on behalf of the Consensus Conference Organizing Committee. A shared effort toward better quality of care. The Consensus Conference on Breast Cancer Follow-up. Ann Oncol 1995; 6 (Suppl 2}. S5-S9 (this issue). 2. Mosconi P, Meyerowitz BE, Liberati MC, Liberati A on behalf of GIVIO (Interdisciplinary Group for Cancer Care Evaluation, Italy). Disclosure of breast cancer diagnosis: Patients and physician report. Ann Oncol 1991; 2: 273-80. 3. The GIVIO investigators. The impact of follow-up diagnostic testing on survival and health-related quality of life in patients with breast cancer Results from a multicentre randomized trial. JAMA 1994; 271(20): 1587-92. Correspondence to: Paola Mosconi, Biol. Sci. D Unita di Epidemiologia dellAssistenza Sanitaria Laboratorio di Epidemiologia Clinica Istituto Mario Negri Via Eritrea 62 20157 Milano, Italy
Downloaded from http://annonc.oxfordjournals.org/ at Georgetown University on August 28, 2015
Representatives of breast cancer patients associations Ada Burrone - Associazione Attive Come Prima, Milano Giovanna Fromento - Associazione Nazionale Donne Operate al Seno, Milano Maria Elisabetta Gangale - Associazione Italiana Educazione Demografica, Bari Roberta Ciurekgian Scandurra - Associazione Donna Come Prima, Firenze Margherita Serrano - Donne Operate al Seno/Donna Piu di Prima, Bari Rosanna Sorrentino - Associazione Donna e Salute, Bari
Psychologists Luisella Ferrari - Associazione Nazionale Donne Operate el Seno, Milano Giovanna Nencini - Associazione Donna Come Prima, Firenze Stefano Gastaldi - Associazione Attive Come Prima, Milano Luigi Valera - Association VIDAS, Milano