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1.
Int J Gynecol Cancer ; 25(9): 1717-23, 2015 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-26501437

RESUMO

OBJECTIVES: The treatment decision-making (TDM) process in the medical encounter in ovarian cancer (OC) is directed by oncologists. There is little information on oncologists' perceptions of this process. Our objectives were to explore oncologists' perceptions concerning (1) patients' preference for involvement in TDM, (2) factors that affect when to introduce this discussion, and (3) strategies used for engaging women in TDM. METHODS: We adopted a qualitative descriptive approach. Individual in-person interviews were used to collect data; themes were identified. RESULTS: Fifteen gynecologic and 5 medical oncologists from Ontario, Canada, participated. We found that oncologists made the assumption that women with recurrent OC were interested in being involved in TDM but rarely reported attempting to validate this assumption. The oncologists timed the initiation of the TDM discussion based on their degree of certainty of recurrent OC and their perception of the patient's readiness to be involved in TDM. Oncologists reported using strategies to engage women such as getting the women to take ownership of the decision, verbalize their priorities, lead the discussions, and giving the opportunity to gather information. CONCLUSIONS: Oncologists need to listen to each patient rather than make assumptions about the person based on her disease.


Assuntos
Ginecologia , Oncologia , Recidiva Local de Neoplasia/terapia , Neoplasias Ovarianas/terapia , Participação do Paciente/métodos , Comunicação , Feminino , Humanos , Masculino , Preferência do Paciente , Percepção , Relações Médico-Paciente , Pesquisa Qualitativa
2.
Health Expect ; 18(5): 1066-80, 2015 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-23663240

RESUMO

BACKGROUND: Women with recurrent ovarian cancer depend on their physicians to provide them with information about their diagnosis and available treatment options if they wish to participate in the process of choosing the treatment. There is no information on how oncologists give information to women during the physician-patient encounter at the time the disease recurs. OBJECTIVES: To explore from the oncologists' perspective (i) the extent to which oncologists provide their own patients who are experiencing their first recurrence of ovarian cancer with the same information about management options, and (ii) any explicit or implicit criteria they use to decide whether and how to tailor the information to individual patients. METHODS: We adopted a qualitative, exploratory descriptive approach to begin to understand oncologists' perspectives on how they gave information to patients within the context of their clinical practice. Individual interviews were used to identify themes related to the study objectives. RESULTS: Fifteen gynaecologic and five medical oncologists participated. Theme 1 describes the extent to which oncologists give information to their patients in the same way or in different ways. This section describes how the same oncologist may modify the depth of information transfer based on several factors. Theme 2 focuses on the factors that influence what information is given. For example, the amount and type of information given is based on the oncologist's on-going assessment of how the patient is assimilating the information shared during the medical encounter, the oncologists' perception of their relationship with the patient and the oncologist's assessment of what role they should take in decision making. Theme 3 involves the factors that influenced how information is given. For example, the information shared may vary based on the oncologist's perception of the patient's vitality, the patient's comprehension of the information, the patient's emotional well-being. In addition, the oncologist may make the information relevant for the patient by using analogies. Different types of information may be shared based on the oncologist's perception of patient- or family-initiated question. The information relay may be curtailed based on competing demands for the oncologist. DISCUSSION AND CONCLUSIONS: Oncologists provide women with information on their disease status, their treatment options and the side effects of treatment. The oncologists use perceptions to determine what information and how to provide information. The question this paper raises is whether the oncologist's perceptions reflect the individual patient's information and decision-making needs.


Assuntos
Comunicação , Oncologia , Recidiva Local de Neoplasia/terapia , Neoplasias Ovarianas/terapia , Equipe de Assistência ao Paciente , Relações Médico-Paciente , Tomada de Decisões , Feminino , Ginecologia , Humanos , Entrevistas como Assunto , Masculino , Recidiva Local de Neoplasia/psicologia , Neoplasias Ovarianas/psicologia , Pesquisa Qualitativa
3.
Health Expect ; 17(2): 232-43, 2014 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-22050440

RESUMO

CONTEXT: Promoting patient participation in treatment decision making is of increasing interest to researchers, clinicians and policy makers. Decision aids (DAs) are advocated as one way to help achieve this goal. Despite their proliferation, there has been little agreement on criteria or standards for evaluating these tools. To fill this gap, an international collaboration of researchers and others interested in the development, content and quality of DAs have worked over the past several years to develop a checklist and, based on this checklist, an instrument for determining whether any given DA meets a defined set of quality criteria. OBJECTIVE/METHODS: In this paper, we offer a framework for assessing the conceptual clarity and evidence base used to support the development of quality criteria/standards for evaluating DAs. We then apply this framework to assess the conceptual clarity and evidence base underlying the International Patient Decision Aids Standards (IPDAS) checklist criteria for one of the checklist domains: how best to present in DAs probability information to patients on treatment benefits and risks. CONCLUSION: We found that some of the central concepts underlying the presenting probabilities domain were not defined. We also found gaps in the empirical evidence and theoretical support for this domain and criteria within this domain. Finally, we offer suggestions for steps that should be undertaken for further development and refinement of quality standards for DAs in the future.


Assuntos
Técnicas de Apoio para a Decisão , Participação do Paciente/métodos , Guias de Prática Clínica como Assunto , Medicina Baseada em Evidências , Objetivos , Humanos , Incerteza
4.
Health Expect ; 17(6): 809-17, 2014 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-22882226

RESUMO

BACKGROUND: Splenectomy is an effective treatment for chronic immune thrombocytopenia (ITP); however, patients' willingness to accept splenectomy is variable. OBJECTIVE: To explore why some ITP patients accepted splenectomy when recommended by their physician while others refused. DESIGN: Qualitative descriptive study using one-to-one, in-depth patient interviews and a team-based approach to thematic analysis. RESULTS: Of 25 patients interviewed, 15 refused splenectomy and 10 accepted and were awaiting surgery. Themes about the influences on splenectomy decision making that emerged from patient interviews were (i) the perceived impact of ITP on quality of life, (ii) patients' view of splenectomy as a last resort treatment, (iii) patients' interpretations of the rates of treatment success and failure and (iv) a perceived lack of familiarity about ITP. Patients who accepted splenectomy perceived their disease as having a negative impact on their quality of life, whereas patients who refused felt their situation was not severe enough to warrant surgery. Patients developed their own experiential interpretations of the success rates of splenectomy quoted to them. A general lack of awareness of the clinical impact of ITP and its cause was identified by patients as barriers to choosing splenectomy. CONCLUSIONS: Patients' disease experience, perceptions of the lack of treatment alternatives, interpretations of treatment success and failure rates and a general lack of awareness about ITP influenced treatment choice. This study represents a first step towards contextualizing treatment decision making in ITP, focusing on patient preferences and values.


Assuntos
Aceitação pelo Paciente de Cuidados de Saúde , Preferência do Paciente , Púrpura Trombocitopênica Idiopática/cirurgia , Esplenectomia , Adulto , Canadá , Feminino , Humanos , Entrevistas como Assunto , Pessoa de Meia-Idade , Aceitação pelo Paciente de Cuidados de Saúde/estatística & dados numéricos , Pesquisa Qualitativa
5.
Support Care Cancer ; 21(6): 1717-23, 2013 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-23344655

RESUMO

PURPOSE: This study aimed to describe the perceptions of women with early stage breast cancer regarding their involvement in treatment decision making (TDM). METHODS: Eligible women with early stage breast cancer were recruited immediately after their first consultation with a specialist. Semistructured personal interviews were held prior to treatment. Interviews were audiotaped, transcribed, and analyzed. RESULTS: Nineteen women with early stage breast cancer considering surgery (n = 6) or adjuvant therapy (n = 13) participated. Women described being involved in various stages of TDM and interacting with informal networks and specialists. Women's descriptions suggest that (1) the concept of involvement in TDM may have a broader meaning for patients than strictly their decisional role and (2) inclusion of significant others in TDM contributes to the patient's sense of involvement. CONCLUSIONS: Conceptualization and measurement of patient involvement in TDM have often been framed within the context of the medical encounter and the patient's perceived or actual role in this process. Our findings raise questions about what involvement means to patients with early stage breast cancer and suggest that the focus on patient involvement in TDM within the medical encounter may be too narrow to capture the meaning of involvement from the patient's perspective.


Assuntos
Neoplasias da Mama/psicologia , Neoplasias da Mama/cirurgia , Participação do Paciente/psicologia , Adulto , Idoso , Atitude Frente a Saúde , Neoplasias da Mama/radioterapia , Tomada de Decisões , Feminino , Humanos , Mastectomia/psicologia , Mastectomia Segmentar/psicologia , Pessoa de Meia-Idade , Radioterapia Adjuvante/psicologia
6.
Health Expect ; 16(4): 373-84, 2013 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-21923813

RESUMO

OBJECTIVE: To identify patients' and physicians' perceptions of physician-related verbal and nonverbal facilitators and barriers to patient involvement in treatment decision making (TDM) occurring during clinical encounters for women with early stage breast cancer (ESBC). METHODS: Eligible women were offered treatment options including surgery and adjuvant therapy. Eligible physicians provided care for women with ESBC in either a teaching hospital or an academic cancer centre. In Phase 1, women were interviewed 1-2 weeks after their initial consultation. In Phase 2, women and their physicians were interviewed separately while watching their own consultation on a digital video disk. All interviews were audiotaped, transcribed and analysed. RESULTS: Forty women with ESBC and six physicians participated. Patients and physicians identified thirteen categories of physician facilitators of women's involvement. Of these, seven categories were frequently identified by women: conveyed a rationale for patient involvement in TDM; explained the risk of cancer recurrence; explained treatment options; enhanced patient understanding of information; gave time for TDM; offered a treatment recommendation; and made women feel comfortable. Physicians described similar information-giving facilitators but less often mentioned other facilitators. Few physician barriers to women's involvement in TDM were identified. CONCLUSIONS: Women with ESBC and cancer physicians shared some views of how physicians involve patients in TDM, although there were important differences. Physicians may underestimate the importance that women's place on understanding the rationale for their involvement in TDM and on feeling comfortable during the consultation.


Assuntos
Neoplasias da Mama/psicologia , Participação do Paciente/psicologia , Relações Médico-Paciente , Adulto , Idoso , Atitude do Pessoal de Saúde , Atitude Frente a Saúde , Neoplasias da Mama/terapia , Comunicação , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Médicos/psicologia
7.
Support Care Cancer ; 20(10): 2327-33, 2012 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-22167296

RESUMO

PURPOSE: Women with ovarian cancer (OC) must make treatment decisions. The first step in this process involves information giving about potential management choices. In this study, our objectives were to (1) describe the key issues that are reviewed by the oncologist when a woman presents with recurrent OC and (2) understand the extent to which physicians have different methods of giving information to patients. METHODS: A descriptive qualitative study of 19 gynecologic and medical oncologists in Ontario, Canada was undertaken using a semi-structured interview guide. RESULTS: Oncologists felt that the process of information giving was an important part of the medical encounter. The main themes that emerged from our data were (1) Oncologists varied in their approach to giving information about the disease and management; (2) oncologists felt that giving management choices to the patients helped engage patients in dealing with their disease and moving forward; (3) oncologists felt it was important to foster patient's hope; and (4) oncologists struggled with how much clinical outcome information to give to patients. CONCLUSIONS: Oncologists tried to achieve a difficult balance between providing patients with several management choices in order to help them keep hope alive and providing them with realistic clinical information suggesting poor patient outcomes. Areas for future research include exploring (1) how physicians can best walk this tightrope of information giving, (2) how to assess physician "success" in doing so, and (3) the meaning of fostering hope to patients and physicians in the context of treatment decision making.


Assuntos
Oncologia , Recidiva Local de Neoplasia/psicologia , Neoplasias Ovarianas/psicologia , Educação de Pacientes como Assunto , Relações Médico-Paciente , Adulto , Idoso , Canadá , Feminino , Humanos , Pessoa de Meia-Idade , Recidiva Local de Neoplasia/terapia , Neoplasias Ovarianas/terapia , Prognóstico , Pesquisa Qualitativa
8.
Can J Anaesth ; 57(5): 468-78, 2010 May.
Artigo em Inglês | MEDLINE | ID: mdl-20229219

RESUMO

PURPOSE: Modern neuraxial labour analgesia reflects a shift in obstetrical anesthesia thinking - away from a simple focus on pain relief towards a focus on the overall quality of analgesia. However, advances in the methods used to measure outcomes have not kept pace with clinical progress, and these approaches must evolve to facilitate meaningful assessment of the advances provided towards the quality of analgesia. Developing a tool to measure the quality of neuraxial labour analgesia that research has achieved is best guided by women's perspectives. As the initial step in developing an instrument to quantitatively measure quality neuraxial labour analgesia, this qualitative descriptive study explored childbearing women's experiences and perspectives regarding this subject. METHODS: Twenty-eight postpartum women, all delivering with neuraxial labour analgesia, were recruited from three hospitals in the greater Toronto area. Twenty-five women described a priori plans to use neuraxial labour analgesia, or they described themselves as having been open to the idea. Women's experiences and perspectives of neuraxial labour analgesia were explored in focus groups and in-depth interviews < or =72 hr following childbirth. RESULTS: Four major themes emerged: 1)The Enormity of Labour Pain; 2) Fear and Anxiety Related to Epidural Pain Relief; 3) What Women Value about Epidural Pain Relief; and 4) The Relative Value of Achieving Epidural Pain Relief vs Avoidance of Epidural Drug Side Effects. Participants broadly described quality neuraxial labour analgesia as pain relief without side effects. Responses affirmed the importance of traditionally measured outcomes as attributes of quality neuraxial labour analgesia, e.g., pain relief and side effects, as well as the overall importance of pain control during labour and delivery. For research to capture the experience of quality neuraxial labour analgesia, findings suggest that this outcome involves physical, cognitive, and emotional dimensions that must be measured. The findings further suggest an important relationship between each of these dimensions and perceptions of control. CONCLUSIONS: Women's perspectives must be incorporated into the assessment of quality neuraxial labour analgesia in order for research to measure this outcome in a meaningful manner. Study findings have important implications for scale development, interpretation of existing research, and antenatal education.


Assuntos
Analgesia Epidural/métodos , Analgesia Obstétrica/métodos , Dor do Parto/tratamento farmacológico , Medição da Dor/métodos , Adulto , Analgesia Epidural/efeitos adversos , Analgesia Obstétrica/efeitos adversos , Coleta de Dados , Feminino , Grupos Focais , Humanos , Trabalho de Parto , Satisfação do Paciente , Gravidez , Pesquisa Qualitativa , Resultado do Tratamento
9.
Health Expect ; 12(1): 38-44, 2009 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-19250151

RESUMO

AIMS: Decision aids in practice may affect patient trust in the clinician, a requirement for optimal diabetes care. We sought to determine the impact of a decision aid to help patients with diabetes decide about statins (Statin Choice) on patients' trust in the clinician. METHODS: We randomized 16 diabetologists and 98 patients with type 2 diabetes referred to a subspecialty diabetes clinic to use the Statin Choice decision aid or a patient pamphlet about dyslipidaemia, and then to receive these materials from either the clinician during the visit or a researcher prior to the visit. Providers and patients were blinded to the study hypothesis. Immediately after the clinical encounter, patients completed a survey including questions on trust (range 0 to total trust = 100), knowledge, and decisional conflict. Researchers reviewed videotaped encounters and assessed patient participation (using the OPTION scale) and visit length. RESULTS: Overall mean trust score was 91 (median 97.2, IQR 86, 100). After adjustment for patient characteristics, results suggested greater total trust (trust = 100) with the decision aid [odds ratio (OR) 1.77, 95% CI 0.94, 3.35]. Total trust was associated with knowledge (for each additional knowledge point, OR 1.3, 95% CI 1.1, 1.6), patient participation (for each additional point in the OPTION scale, OR 1.1, 95% CI 1.1, 1.2), and decisional conflict (for every 5-point decrease in conflict, OR 1.5, 95% CI 1.2, 1.9). Total trust was not associated with visit length, which the decision aid did not significantly affect. There was no significant effect interaction across the trial factors. CONCLUSIONS: Preliminary evidence suggests that decision aids do not have a large negative impact on trust in the physician and may increase trust through improvements in the decision-making process.


Assuntos
Comportamento de Escolha , Sistemas de Apoio a Decisões Clínicas , Diabetes Mellitus Tipo 2/tratamento farmacológico , Inibidores de Hidroximetilglutaril-CoA Redutases/uso terapêutico , Relações Profissional-Paciente , Confiança , Idoso , Feminino , Pesquisas sobre Atenção à Saúde , Humanos , Masculino , Pessoa de Meia-Idade , Minnesota , Gravação de Videoteipe
10.
Health Policy ; 91(2): 162-73, 2009 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-19150577

RESUMO

OBJECTIVES: (1) To explore empirically the extent to which early stage breast cancer patients in France, wish to be informed about their disease and treatments and (2) in view of the statutory duty of physicians to inform patients, to explore, from the patients' point of view, the type of information given by physicians and whether it meets their information needs. METHODS: A retrospective, cross-sectional survey questionnaire using standardized questions was administered by mail to newly diagnosed breast cancer patients and evaluated their relationships with the different physicians involved in their treatment at different points in time. Focus was placed on the relationship between surgeons and patients. RESULTS: Two hundred and thirty-eight patients completed the questionnaire on their relationship with their surgeon. Patients' reported information needs are considerable, though significantly different depending on the item. Patients report that surgeons do not fully respond to their needs. Even though physicians are legally required to provide information to their patients, in routine practice they seem to favour providing information about disease and treatment side effects over treatment consequences, even though patients express a need for information on these latter items. CONCLUSION: More research is needed on the development, use and outcomes of the various strategies and interventions designed to facilitate and improve information transfer in the physician-patient encounter in France.


Assuntos
Neoplasias da Mama , Médicos/legislação & jurisprudência , Revelação da Verdade , Adulto , Idoso , Idoso de 80 Anos ou mais , Estudos Transversais , Feminino , França , Humanos , Pessoa de Meia-Idade , Relações Médico-Paciente , Estudos Retrospectivos
11.
BMC Med Ethics ; 10: 10, 2009 Jul 24.
Artigo em Inglês | MEDLINE | ID: mdl-19630941

RESUMO

BACKGROUND: Stigma refers to a distinguishing personal trait that is perceived as or actually is physically, socially, or psychologically disadvantageous. Little is known about the opinion of those who have more or less stigmatizing health conditions regarding the need for consent for use of their personal information for health research. METHODS: We surveyed the opinions of people 18 years and older with seven health conditions. Participants were drawn from: physicians' offices and clinics in southern Ontario; and from a cross-Canada marketing panel of individuals with the target health conditions. For each of five research scenarios presented, respondents chose one of five consent choices: (1) no need for me to know; (2) notice with opt-out; (3) broad opt-in; (4) project-specific permission; and (5) this information should not be used. Consent choices were regressed onto: demographics; health condition; and attitude measures of privacy, disclosure concern, and the benefits of health research. We conducted focus groups to discuss possible reasons for observed consent choices. RESULTS: We observed substantial variation in the control that people wish to have over use of their personal information for research. However, consent choice profiles were similar across health conditions, possibly due to sampling bias. Research involving profit or requiring linkage of health information with income, education, or occupation were associated with more restrictive consent choices. People were more willing to link their health information with biological samples than with information about their income, occupation, or education. CONCLUSIONS: The heterogeneity in consent choices suggests individuals should be offered some choice in use of their information for different types of health research, even if limited to selectively opting-out. Some of the implementation challenges could be designed into the interoperable electronic health record. However, many questions remain, including how best to capture the opinions of those who are more privacy sensitive.


Assuntos
Confidencialidade , Renda , Consentimento Livre e Esclarecido , Opinião Pública , Estereotipagem , Adulto , Canadá , Comportamento de Escolha , Escolaridade , Feminino , Grupos Focais , Humanos , Masculino , Sistemas Computadorizados de Registros Médicos , Pessoa de Meia-Idade , Análise Multivariada , Narração , Ocupações , Política Pública , Análise de Regressão , Projetos de Pesquisa , Sujeitos da Pesquisa , Viés de Seleção , Inquéritos e Questionários , Adulto Jovem
12.
Patient Educ Couns ; 73(3): 431-6, 2008 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-18755565

RESUMO

OBJECTIVE: There is limited understanding about what treatment decision making (TDM) means to patients. The study objective was to identify any processes or stages of TDM as perceived by women with early stage breast cancer (ESBC). METHODS: Initial consultations with a surgeon or medical oncologist were videotaped. Subsequently, women viewed their consultation using a qualitative approach with video-stimulated recall (VSR) interviews. Interviews were taped, transcribed, and analyzed. RESULTS: There were 6 surgical and 15 medical oncology (MO) consultations. Most women described TDM as beginning soon after diagnosis and involving several processes including gathering information from informal and formal networks and identifying preferred treatment options before the specialist consultation. Many women wanted more information from their surgeon so they could engage in subsequent TDM with their medical oncologist. CONCLUSION: In this study, women with ESBC began TDM soon after diagnosis and used several iterative processes to arrive at a decision about their cancer treatment. VSR interviews can be useful to investigate TDM occurring during the consultation. PRACTICE IMPLICATIONS: Women with ESBC rely on information provided by their surgeons and family physicians to make treatment decisions about surgery and also to prepare them for subsequent discussions with medical oncologists about chemotherapy.


Assuntos
Neoplasias da Mama/psicologia , Tomada de Decisões , Participação do Paciente/psicologia , Mulheres/psicologia , Idoso , Neoplasias da Mama/terapia , Comportamento Cooperativo , Feminino , Necessidades e Demandas de Serviços de Saúde , Humanos , Mastectomia , Oncologia , Pessoa de Meia-Idade , Ontário , Educação de Pacientes como Assunto , Participação do Paciente/métodos , Seleção de Pacientes , Papel do Médico/psicologia , Relações Médico-Paciente , Pesquisa Qualitativa , Medição de Risco , Inquéritos e Questionários , Gravação de Videoteipe , Mulheres/educação
13.
BMC Health Serv Res ; 8: 221, 2008 Oct 27.
Artigo em Inglês | MEDLINE | ID: mdl-18954427

RESUMO

BACKGROUND: Oral anticoagulation prevents strokes in patients with atrial fibrillation but, for reasons that remain unclear, less than 40% of all patients with atrial fibrillation receive warfarin. The literature postulates that patient and clinician preferences may explain this low utilization. DESIGN: The proposed research seeks to answer the following questions: i) When assessed systematically, do patients' and clinicians' preferences explain the utilization of warfarin to prevent strokes associated with atrial fibrillation? ii) To what extent do patients' and clinicians' treatment preferences differ? iii) What factors explain any differences that exist in treatment preferences between patients and clinicians? To answer these questions we will conduct a two-phase study of patient and clinician preferences for health states and treatments. In the first phase of this study we will conduct structured interviews to determine their treatment preferences for warfarin vs. aspirin to prevent strokes associated with atrial fibrillation using the probability trade-off technique. In the same interview, we will conduct preference-elicitation exercises using the feeling thermometer to identify the utilities that patients place on taking medication (warfarin and aspirin), and on having a mild stroke, a severe stroke, and a major bleed. In the second phase of the study we will convene focus groups of clinicians and patients to explore their answers to the exercises in the first phase. DISCUSSION: This is a study of patient and clinician preferences for health states and treatments. Because of its clinical importance and our previous work in this area, we will conduct our study in the clinical context of the decision to use antithrombotic agents to reduce the risk of stroke in patients with non-valvular chronic atrial fibrillation.


Assuntos
Anticoagulantes/uso terapêutico , Fibrilação Atrial/complicações , Satisfação do Paciente , Padrões de Prática Médica , Acidente Vascular Cerebral/prevenção & controle , Idoso , Aspirina/uso terapêutico , Feminino , Grupos Focais , Humanos , Masculino , Pessoa de Meia-Idade , Participação do Paciente , Espanha , Acidente Vascular Cerebral/etiologia , Varfarina/uso terapêutico
14.
BMC Med Ethics ; 9: 18, 2008 Nov 19.
Artigo em Inglês | MEDLINE | ID: mdl-19019239

RESUMO

BACKGROUND: The role of consent for research use of health information is contentious. Most discussion has focused on when project-specific consent may be waived but, recently, a broader range of consent options has been entertained, including broad opt-in for multiple studies with restrictions and notification with opt-out. We sought to elicit public values in this matter and to work toward an agreement about a common approach to consent for use of personal information for health research through deliberative public dialogues. METHODS: We conducted seven day-long public dialogues, involving 98 participants across Canada. Immediately before and after each dialogue, participants completed a fixed-response questionnaire rating individuals' support for 3 approaches to consent in the abstract and their consent choices for 5 health research scenarios using personal information. They also rated how confident different safeguards made them feel that their information was being used responsibly. RESULTS: Broad opt-in consent for use of personal information garnered the greatest support in the abstract. When presented with specific research scenarios, no one approach to consent predominated. When profit was introduced into the scenarios, consent choices shifted toward greater control over use. Despite lively and constructive dialogues, and considerable shifting in opinion at the individual level, at the end of the day, there was no substantive aggregate movement in opinion. Personal controls were among the most commonly cited approaches to improving people's confidence in the responsible use of their information for research. CONCLUSION: Because no one approach to consent satisfied even a simple majority of dialogue participants and the importance placed on personal controls, a mechanism should be developed for documenting consent choice for different types of research, including ways for individuals to check who has accessed their medical record for purposes other than clinical care. This could be done, for example, through a web-based patient portal to their electronic health record. Researchers and policy makers should continue to engage the public to promote greater public understanding of the research process and to look for feasible alternatives to existing approaches to project-specific consent for observational research.


Assuntos
Confidencialidade , Consentimento Livre e Esclarecido , Opinião Pública , Adulto , Canadá , Comportamento de Escolha , Confidencialidade/normas , Consenso , Feminino , Humanos , Consentimento Livre e Esclarecido/ética , Masculino , Pessoa de Meia-Idade , Projetos de Pesquisa , Inquéritos e Questionários
15.
J Am Med Inform Assoc ; 14(6): 706-12, 2007.
Artigo em Inglês | MEDLINE | ID: mdl-17712084

RESUMO

OBJECTIVES: This study sought to determine public opinion on alternatives to project-specific consent for use of their personal information for health research. DESIGN: The authors conducted a fixed-response random-digit dialed telephone survey of 1,230 adults across Canada. MEASUREMENTS: We measured attitudes toward privacy and health research; trust in different institutions to keep information confidential; and consent choice for research use of one's own health information involving medical record review, automated abstraction of information from the electronic medical record, and linking education or income with health data. RESULTS: Support was strong for both health research and privacy protection. Studying communicable diseases and quality of health care had greatest support (85% to 89%). Trust was highest for data institutes, university researchers, hospitals, and disease foundations (78% to 80%). Four percent of respondents thought information from their paper medical record should not be used at all for research, 32% thought permission should be obtained for each use, 29% supported broad consent, 24% supported notification and opt out, and 11% felt no need for notification or consent. Opinions were more polarized for automated abstraction of data from the electronic medical record. Respondents were more willing to link education with health data than income. CONCLUSIONS: Most of the public supported alternatives to study-specific consent, but few supported use without any notification or consent. Consent choices for research use of one's health information should be documented in the medical record. The challenge remains how best to elicit those choices and ensure that they are up-to-date.


Assuntos
Acesso à Informação , Pesquisa Biomédica , Confidencialidade , Prontuários Médicos , Opinião Pública , Atitude Frente a Saúde , Canadá , Estudos Transversais , Pesquisas sobre Atenção à Saúde , Humanos , Sistemas Computadorizados de Registros Médicos , Confiança
16.
Qual Health Res ; 17(2): 201-12, 2007 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-17220391

RESUMO

The authors used a transcendental phenomenological approach to describe adolescent mothers' satisfactory and unsatisfactory inpatient postpartum nursing care experiences. They analyzed data from 14 in-depth interviews and found that adolescent mothers' satisfaction is dependent on their perceptions of the nurse's ability to place them "at ease." Nursing care qualities that contributed to satisfactory experiences included nurses' sharing information about themselves, being calm, demonstrating confidence in mothers, speaking to adolescent and adult mothers in the same way, and anticipating unstated needs. Nursing care was perceived to be unsatisfactory when it was too serious, limited to the job required, or different from care to adult mothers, or when nurses failed to recognize individual needs. In extreme cases, unsatisfactory experiences hindered development of an effective nurse-client relationship. These findings illustrate the value of qualitative inquiry for understanding patients' satisfaction with care, can be used for self-reflection, and have implications for nursing education programs.


Assuntos
Enfermagem Materno-Infantil/normas , Relações Enfermeiro-Paciente , Satisfação do Paciente , Cuidado Pós-Natal/normas , Gravidez na Adolescência/psicologia , Adolescente , Adulto , Aleitamento Materno/psicologia , Feminino , Humanos , Cuidado do Lactente , Recém-Nascido , Entrevistas como Assunto , Mães/educação , Mães/psicologia , Narração , Ontário , Cuidado Pós-Natal/psicologia , Gravidez , Resultado da Gravidez/psicologia
17.
Patient Educ Couns ; 100(11): 2035-2046, 2017 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-28552193

RESUMO

OBJECTIVE: Family caregivers are regularly involved in cancer consultations and treatment decision-making (DM). Yet there is limited conceptual description of caregiver influence/involvement in DM. To address this, an empirically-grounded conceptual framework of triadic DM (TRIO Framework) and corresponding graphical aid (TRIO Triangle) were developed. METHODS: Jabareen's model for conceptual framework development informed multiple phases of development/validation, incorporation of empirical research and theory, and iterative revisions by an expert advisory group. RESULTS: Findings coalesced into six empirically-grounded conceptual insights: i) Caregiver influence over a decision is variable amongst different groups; ii) Caregiver influence is variable within the one triad over time; iii) Caregivers are involved in various ways in the wider DM process; iv) DM is not only amongst three, but can occur among wider social networks; v) Many factors may affect the form and extent of caregiver involvement in DM; vi) Caregiver influence over, and involvement in, DM is linked to their everyday involvement in illness care/management. CONCLUSION: The TRIO Framework/Triangle may serve as a useful guide for future empirical, ethical and/or theoretical work. PRACTICE IMPLICATIONS: This Framework can deepen clinicians's and researcher's understanding of the diverse and varying scope of caregiver involvement and influence in DM.


Assuntos
Cuidadores/psicologia , Tomada de Decisões , Família/psicologia , Neoplasias/terapia , Feminino , Humanos , Masculino , Relações Médico-Paciente , Relações Profissional-Família , Encaminhamento e Consulta
18.
Patient Educ Couns ; 62(2): 205-11, 2006 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-16139467

RESUMO

OBJECTIVE: To explore the application of the original Charles et al. model of shared treatment decision-making [Charles C, Gafni A, Whelan T. Shared decision-making in the medical encounter: what does it mean? (or it takes at least two to tango). Soc Sci Med 1997;44:681-92; Charles C, Gafni A, Whelan T. Decision-making in the physician-patient encounter: revisiting the shared treatment decision-making model. Soc Sci Med 1999;49:651-61] in the context of general practice, and to determine whether the model needs tailoring for use in this clinical context. METHODS: Conceptual paper, presenting the defining characteristics of general practice compared to the original clinical context for which the model was developed (i.e. life threatening disease with different treatment options), and exploring how the model can be tailored for use in the context of general practice. RESULTS: We identify two areas where the original model requires tailoring: sharing the decision-making around agreeing on an agenda for each consultation; and adapting the information transfer component of the model to acknowledge that doctors may not be the only, or even the main, source of technical information for patients. Finally, we explore the importance of shared decision-making in the context of chronic disease. CONCLUSION: The Charles et al. model can be tailored for use in general practice. PRACTICE IMPLICATIONS: Tailoring the model for use in general practice has implications for research, in terms of identifying the additional physician competencies needed for implementation. Policy makers who wish to promote shared decision-making need to ensure that incentives which prioritize access and health outcomes do not militate against shared decision-making in general practice.


Assuntos
Comportamento Cooperativo , Tomada de Decisões , Medicina de Família e Comunidade/organização & administração , Modelos Psicológicos , Participação do Paciente/psicologia , Atenção Primária à Saúde/organização & administração , Doença Aguda/psicologia , Doença Crônica/psicologia , Competência Clínica , Acessibilidade aos Serviços de Saúde/organização & administração , Humanos , Consentimento Livre e Esclarecido , Motivação , Avaliação das Necessidades/organização & administração , Paternalismo , Planejamento de Assistência ao Paciente/organização & administração , Educação de Pacientes como Assunto/organização & administração , Participação do Paciente/métodos , Papel do Médico/psicologia , Relações Médico-Paciente , Formulação de Políticas , Reino Unido
19.
Patient Educ Couns ; 63(3): 262-7, 2006 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-17000073

RESUMO

OBJECTIVE: In this paper we discuss the influence of culture on the process of treatment decision-making, and in particular, shared treatment decision-making in the physician-patient encounter. We explore two key issues: (1) the meaning of culture and the ways that it can affect treatment decision-making; (2) cultural issues and assumptions underlying the development and use of treatment decision aids. METHODS: This is a conceptual paper. Based on our knowledge and reading of the key literature in the treatment decision-making field, we looked for written examples where cultural influences were taken into account when discussing the physician-patient encounter and when designing instruments (decision aids) to help patients participate in making decisions. RESULTS: Our assessment of the situation is that to date, and with some recent exceptions, research in the above areas has not been culturally sensitive. CONCLUSION: We suggest that more research attention should be focused on exploring potential cultural variations in the meaning of and preferences for shared decision-making as well as on the applicability across cultural groups of decision aids developed to facilitate patient participation in treatment decision-making with physicians. PRACTICE IMPLICATIONS: Both patients and physicians need to be aware of the cultural assumptions underlying the development and use of decision aids and assess their cultural sensitivity to the needs and preferences of patients in diverse cultural groups.


Assuntos
Cultura , Tomada de Decisões , Participação do Paciente , Relações Médico-Paciente , Humanos
20.
Artigo em Inglês | MEDLINE | ID: mdl-27489586

RESUMO

The pan-Canadian Oncology Drug Review (pCODR) makes recommendations to Canada's provinces and territories (except Quebec) to guide their cancer drug funding decisions. The objective of this paper is to explore, using an economic perspective and the pCODR as an example, the challenges associated with striving to simultaneously achieve the goals of maximizing health benefits with available resources and improving access to a more consistent standard of care across Canada. The first challenge concerns how to interpret the goals in order to determine how resources should be allocated to achieve each goal. The second challenge relates to whether, if pursued simultaneously, both goals can be achieved to the same extent that each goal could have been achieved alone with the same available resources. Regarding the first challenge, we illustrate that, due to a lack of definitional clarity, it is difficult to determine exactly how resources should be allocated in order to achieve the goal of improving access to a more consistent standard of care across Canada. Regarding the second challenge, we illustrate that choosing to strive for both of the pCODR goals simultaneously will likely be associated with tradeoffs in the extent to which one or both goals can be achieved (relative to what could have been achieved for each goal alone with the same available resources). We suggest that, if the pCODR and the provincial drug plan decision-makers it supports want to strive for both goals simultaneously, they must prioritize the goals and explicitly identify the tradeoffs associated with the prioritization. This will ensure that the consequences of striving to simultaneously achieve both goals are explicit, transparent, and predictable for provincial drug plan decision-makers, physicians, patients, caregivers, and society as a whole.

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