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1.
Eur J Cancer Care (Engl) ; 28(2): e12993, 2019 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-30656777

RESUMO

OBJECTIVE: The experience of a cancer diagnosis and receiving treatment can have profound impacts on health and subsequently patients may require significant support. Often, these needs are not identified or addressed. Given that less is known about the follow-up requirements for head and neck cancer patients, this study aimed to describe their follow-up needs and preferences. METHODS: In Ontario, Canada from 2012-2014, 175 patients completed a questionnaire at an appointment one year after treatment. To identify associations between characteristics and follow-up needs, bivariate analyses and ordinal logistic regression models were employed. RESULTS: A diversity of follow-up requirements was found. The most commonly reported follow-up needs were having imaging tests performed (66%), receiving information on treatment side effects (84%) and prognosis details (95%). Many patients experienced an improvement in their health (79%) but notably, not all. Characteristics such as psychosocial and well-being measures (functional status, anxiety, fear of recurrence, quality of life), attitudes towards follow-up (reassurance, communication), demographics (age, sex, marital status), and stage of disease predicted needs and preferences for follow-up care (p < 0.05). CONCLUSION: While awaiting top-level evidence, this work demonstrates the variation in needs and supports the identification of patients with higher follow-up requirements by screening for well-being and enquiring about expectations in follow-up care.


Assuntos
Assistência ao Convalescente/métodos , Neoplasias de Cabeça e Pescoço/terapia , Preferência do Paciente , Adulto , Assistência ao Convalescente/psicologia , Idoso , Idoso de 80 Anos ou mais , Atenção à Saúde , Feminino , Neoplasias de Cabeça e Pescoço/psicologia , Nível de Saúde , Humanos , Masculino , Saúde Mental , Pessoa de Meia-Idade , Motivação , Avaliação das Necessidades , Educação de Pacientes como Assunto , Relações Médico-Paciente , Estudos Prospectivos , Qualidade de Vida , Fatores Socioeconômicos
2.
J Med Internet Res ; 21(11): e14241, 2019 11 19.
Artigo em Inglês | MEDLINE | ID: mdl-31742561

RESUMO

BACKGROUND: After a prostate cancer diagnosis, men want information about their disease and treatment options. The internet offers a convenient means to deliver health information to patients with prostate cancer. However, there are concerns about the use of the internet among this largely senior population. OBJECTIVE: This study aimed to determine the patterns and factors associated with the use of the internet as a source of health information among Canadian men with prostate cancer and the features and information required in a website. METHODS: Population surveys were conducted in four Canadian provinces (British Columbia, Alberta, Saskatchewan, and Ontario) in 2014-2015. Data analyses included descriptive, bivariable, and multivariable analyses. The Pearson Chi-square and univariable regression were used to examine associations between independent variables and health-related internet use. Correlates of health-related internet use were analyzed using multivariable logistic regression. RESULTS: A total of 1362 patients responded across the four provinces. The mean age of respondents was 69 years (SD 8.2). In addition, 82% (n=1071) were internet users and 71% (n=910) used the internet daily. Further, 65% (n=784) used the internet as a source of prostate cancer information, and 40% (n=521) were confident about using information obtained from the internet to make health decisions. Men who used the internet to obtain prostate cancer information were more likely to be active information seekers (odds ratio [OR]: 4.5, 95% CI 2.6-7.8), be confident using information from the internet to make health decisions (OR: 3.6, 95% CI 2.3-5.7), have broadband internet access (OR: 1.8, 95% CI 1.2-2.7), and have more unmet supportive care needs (OR: 1.05, 95% CI 1.0-1.1). Top features wanted in a website, reported by more than 50% of respondents, were a library of resources (n=893, 65.6%), tools to support treatment decision making (n=815, 59.8%), and tools to help navigate the prostate cancer journey (n=698, 51.2%). Top three topics of information wanted in such a website were treatment options (n=916, 67.3%), disease progression (n=904, 66.4%), and management of side effects (n=858, 63%). CONCLUSIONS: Over two-thirds of Canadian patients with prostate cancer surveyed use the internet as a source of health information about prostate cancer, but over half did not feel confident using information from the internet to make health decisions. Being an active information seeker, having confidence in using information from the internet to make health decisions, having broadband internet, and having more unmet supportive care needs were significantly associated with health-related internet use. Future work should examine electronic health literacy interventions as a means to boost men's confidence in using information from the internet and design websites that include information and features that help men navigate the prostate cancer journey and support treatment decision making and management of side effects.


Assuntos
Neoplasias da Próstata/terapia , Idoso , Canadá , Letramento em Saúde/estatística & dados numéricos , Humanos , Internet , Masculino , Sistema de Registros , Inquéritos e Questionários
3.
J Cancer Educ ; 33(1): 37-43, 2018 02.
Artigo em Inglês | MEDLINE | ID: mdl-26976434

RESUMO

This study was conducted to elucidate patients with early breast cancer preference for standard whole breast irradiation (WBI) or partial breast irradiation (PBI) following lumpectomy, as well as identify important factors for patients when making their treatment decisions. Based on relevant literature and ASTRO consensus statement guidelines, an educational tool and questionnaire were developed. Consenting, eligible women reviewed the educational tool and completed the trade-off questionnaire. Descriptive statistics were calculated, as well as chi-squares and a logistic regression model. Of the 90 patients who completed the study, 62 % preferred WBI, 30 % preferred PBI, 4 % required more information, and 3 % had no preferences. Of the patients who chose WBI, 58 % preferred hypofractionated RT, whereas 25 % preferred the conventional RT regimen. The majority of patients rated recurrence rate [WBI = 55/55 (100 %), PBI = 26/26 (100 %)] and survival [WBI = 54/55 (98 %), PBI = 26/26 (100 %)] as important factors contributing to their choice of treatment preference. Financial factors [WBI = 21/55 (38 %), PBI = 14/26 (53 %)] and convenience [WBI = 36/54 (67 %), PBI = 18/26 (69 %)] were rated as important less frequently. Significantly, more patients who preferred WBI also rated standard method of treatment as important when compared to patients who preferred PBI [WBI = 52/54 (96 %), PBI = 16/26 (61 %), χ 2 = 16.63, p = 0.001]. The majority of patients with early breast cancer who were surveyed for this study preferred WBI as an adjuvant treatment post lumpectomy, yet there was a sizeable minority who preferred PBI. This was associated with the importance patients place on standard treatment. These results will help medical professionals treat patients according to patient values.


Assuntos
Neoplasias da Mama/radioterapia , Mastectomia Segmentar , Preferência do Paciente , Adulto , Idoso , Neoplasias da Mama/cirurgia , Feminino , Humanos , Pessoa de Meia-Idade , Recidiva Local de Neoplasia/prevenção & controle , Radioterapia Adjuvante/métodos
4.
Support Care Cancer ; 22(4): 999-1007, 2014 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-24287503

RESUMO

PURPOSE: The aims of this study were to analyze agreement on information needs within a group of early-state prostate cancer patients and to compare information preferences of patients with the view of health-care professionals about patients' needs. METHODS: Sample consists of patients (n = 128) and six subgroups of health-care professionals (urologists, n = 32; nurses, n = 95; radiotherapy technologists (RTTs), n = 36; medical oncologists, n = 19; radiation oncologists, n = 12; general practitioners (GPs), n = 10). Information needs have been assessed with 92 questions concerning prostate cancer and its treatment. Respondents judged the importance of addressing each question. Within- and between-group agreements of patients and health-care professional groups were estimated with raw agreement indices as well as chance-corrected Kappa and Gwet's AC1 measures. Finally, group-specific core items rated with high importance as well as high agreement were defined. RESULTS: Patients rated on average (median) half, i.e., 51 out 92 items as essential (interquartile range (IQR) = 36-66), 26 items as desired (IQR = 14-38), and 10 items as avoidable (IQR = 2-22). Within-group agreement on the presented information topics is modest for any participating group (AC1(patients)= 0.319; AC1(professionals) = 0.295-0.398). Agreement between patients and professionals is low too (AC1 = 0.282-0.329). Defining group-specific core sets of information topics results in 51 items being part of at least one core set. Concordance of the item core sets of patients and professionals is moderate with κ = 0.38-0.66, sensitivity of professionals' core sets for patients' preferences varies between 56 and 74%. CONCLUSIONS: Results emphasize the need for dialogue between doctor/professional and patient in identifying the information needed by individual patients and support the importance of shared decision making.


Assuntos
Tomada de Decisões , Relações Profissional-Paciente , Neoplasias da Próstata , Idoso , Humanos , Masculino , Estadiamento de Neoplasias , Preferência do Paciente , Neoplasias da Próstata/patologia , Neoplasias da Próstata/terapia , Inquéritos e Questionários
5.
J Cancer Educ ; 29(1): 129-35, 2014 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-24092532

RESUMO

To determine if older women with early stage breast cancer have sufficient decisional support during their breast cancer journey, a questionnaire-based study was conducted at the Sunnybrook Odette Cancer Centre, in Toronto, Ontario, Canada. Women with stages I and II breast cancer, ≥60 years, were contacted upon completion of their adjuvant treatment. A questionnaire was developed based on focus groups, the literature, and consultation with patients and a multidisciplinary team of experts. The questionnaire was divided into six domains as follows: (1) information support surrounding diagnosis, (2) impact of cancer diagnosis on the patient, (3) quality of interaction with healthcare team, (4) decisional support from the healthcare team, (5) additional information needs surrounding treatment decision, and (6) information support during radiation treatment. Ninety-two of 137 patients approached were included in the analysis. Ninety percent were > 60 years at the time of diagnosis and 65% had stage I invasive breast cancer. The majority of women received adequate decisional support during their cancer journey. Approximately 90% of women indicated that they received a high level of support during their cancer diagnosis. We found no significant differences in overall decisional support based on age at diagnosis, education level, ethnicity, or the presence of co-morbidities. However, participants desired additional educational resources such as a worksheet, consultation summary, or workbook to assist in making a treatment decision. The majority of participants felt that they had sufficient support while making a treatment decision for breast cancer.


Assuntos
Neoplasias da Mama/psicologia , Tomada de Decisões , Técnicas de Apoio para a Decisão , Planejamento de Assistência ao Paciente , Estresse Psicológico , Idoso , Idoso de 80 Anos ou mais , Neoplasias da Mama/diagnóstico , Feminino , Seguimentos , Humanos , Pessoa de Meia-Idade , Educação de Pacientes como Assunto , Relações Médico-Paciente , Inquéritos e Questionários
6.
BMC Med Inform Decis Mak ; 13 Suppl 2: S4, 2013.
Artigo em Inglês | MEDLINE | ID: mdl-24625127

RESUMO

BACKGROUND: Legal, ethical, and psychological arguments indicate that patients need to receive information about their health situations before their care decisions are made. Patient decision aids (PtDAs) are designed to help patients make decisions; therefore, they should provide information that results in patients understanding their health situation. We reviewed studies that assessed the impact of PtDAs on patient knowledge and on their feeling of being uninformed. METHODS: Our data sources were a published Cochrane Collaboration review that included randomized controlled trials (RCTs) published before 2010 and a systematic review we conducted of RCTs published in 2010. We included trials that compared 1) PtDAs to usual care, and 2) PtDAs with simple information to PtDAs with more detailed information. Outcomes included patients' knowledge and their feeling of being uninformed. Data were analyzed quantitatively and qualitatively. Meta-analyses of similar studies estimated the size of differences. RESULTS: Thirty-nine RCTs compared a PtDA to usual care and all showed higher knowledge scores for patients in the PtDA groups; a meta-analysis estimated the advantage at 14 (of 100) points. Sixteen (of 39) studies used the Feeling Uninformed subscale; a meta-analysis estimated a reduction of 7 (of 100) points in the PtDA group over usual care. Twenty-one studies compared simple- to more-detailed information in PtDAs. There was a small overall advantage for more detailed information on knowledge scores; a meta-analysis estimated the advantage at 5 (of 100) points. Only one study found higher mean knowledge scores for simpler information. Nine (of 21) studies reported using the Feeling Uninformed subscale and a meta-analysis suggested a reduction of 3 (of 100) points for the more-detailed PtDAs over those with simpler information. Only one study found that simpler information resulted in patients feeling more informed. CONCLUSIONS: It appears that PtDAs result in patients having higher knowledge scores and in reduced feelings of being uninformed over patients who receive usual care. It also appears that PtDAs with more detailed information generally result in slightly higher knowledge and lower "Feeling Uninformed" scores than those with simpler information, but the differences are small and can be reversed under some circumstances.


Assuntos
Informação de Saúde ao Consumidor , Técnicas de Apoio para a Decisão , Participação do Paciente , Humanos
7.
BMC Med Inform Decis Mak ; 13 Suppl 2: S8, 2013.
Artigo em Inglês | MEDLINE | ID: mdl-24625261

RESUMO

BACKGROUND: Consensus guidelines have recommended that decision aids include a process for helping patients clarify their values. We sought to examine the theoretical and empirical evidence related to the use of values clarification methods in patient decision aids. METHODS: Building on the International Patient Decision Aid Standards (IPDAS) Collaboration's 2005 review of values clarification methods in decision aids, we convened a multi-disciplinary expert group to examine key definitions, decision-making process theories, and empirical evidence about the effects of values clarification methods in decision aids. To summarize the current state of theory and evidence about the role of values clarification methods in decision aids, we undertook a process of evidence review and summary. RESULTS: Values clarification methods (VCMs) are best defined as methods to help patients think about the desirability of options or attributes of options within a specific decision context, in order to identify which option he/she prefers. Several decision making process theories were identified that can inform the design of values clarification methods, but no single "best" practice for how such methods should be constructed was determined. Our evidence review found that existing VCMs were used for a variety of different decisions, rarely referenced underlying theory for their design, but generally were well described in regard to their development process. Listing the pros and cons of a decision was the most common method used. The 13 trials that compared decision support with or without VCMs reached mixed results: some found that VCMs improved some decision-making processes, while others found no effect. CONCLUSIONS: Values clarification methods may improve decision-making processes and potentially more distal outcomes. However, the small number of evaluations of VCMs and, where evaluations exist, the heterogeneity in outcome measures makes it difficult to determine their overall effectiveness or the specific characteristics that increase effectiveness.


Assuntos
Técnicas de Apoio para a Decisão , Pesquisa sobre Serviços de Saúde , Participação do Paciente , Preferência do Paciente , Humanos
8.
BMC Med Inform Decis Mak ; 13 Suppl 2: S9, 2013.
Artigo em Inglês | MEDLINE | ID: mdl-24625283

RESUMO

BACKGROUND: Patient decision aids support people to make informed decisions between healthcare options. Personal stories provide illustrative examples of others' experiences and are seen as a useful way to communicate information about health and illness. Evidence indicates that providing information within personal stories affects the judgments and values people have, and the choices they make, differentially from facts presented in non-narrative prose. It is unclear if including narrative communications within patient decision aids enhances their effectiveness to support people to make informed decisions. METHODS: A survey of primary empirical research employing a systematic review method investigated the effect of patient decision aids with or without a personal story on people's healthcare judgements and decisions. Searches were carried out between 2005-2012 of electronic databases (Medline, PsycINFO), and reference lists of identified articles, review articles, and key authors. A narrative analysis described and synthesised findings. RESULTS: Of 734 citations identified, 11 were included describing 13 studies. All studies found participants' judgments and/or decisions differed depending on whether or not their decision aid included a patient story. Knowledge was equally facilitated when the decision aids with and without stories had similar information content. Story-enhanced aids may help people recall information over time and/or their motivation to engage with health information. Personal stories affected both "system 1" (e.g., less counterfactual reasoning, more emotional reactions and perceptions) and "system 2" (e.g., more perceived deliberative decision making, more stable evaluations over time) decision-making strategies. Findings exploring associations with narrative communications, decision quality measures, and different levels of literacy and numeracy were mixed. The pattern of findings was similar for both experimental and real-world studies. CONCLUSIONS: There is insufficient evidence that adding personal stories to decision aids increases their effectiveness to support people's informed decision making. More rigorous research is required to elicit evidence about the type of personal story that a) encourages people to make more reasoned decisions, b) discourages people from making choices based on another's values, and c) motivates people equally to engage with healthcare resources.


Assuntos
Informação de Saúde ao Consumidor , Técnicas de Apoio para a Decisão , Pesquisa sobre Serviços de Saúde , Participação do Paciente , Comunicação , Tomada de Decisões , Humanos , Narração
9.
J Cancer Educ ; 28(3): 509-15, 2013 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-23793963

RESUMO

The present study investigated health professionals' opinions about important questions that should be discussed with patients who may require post-prostatectomy radiotherapy. A 74-question survey was conducted among radiation oncologists, urologists, nurses, and radiation therapists involved in the care of prostate cancer patients. Survey questions covered six domains: understanding my situation and prostate cancer diagnosis, making a decision, radiotherapy: procedures involved, potential benefits, side effects, and my support network during radiation treatment. Respondents rated the importance of addressing these questions as either essential, important, no opinion, or avoid with a hypothetical post-prostatectomy case. The majority of questions were rated as either essential or important. There was disagreement between professions on essential questions, mostly between nurses and urologists in the side-effects domain. There was agreement between all professions regarding which questions should be avoided.


Assuntos
Tomada de Decisões , Prova Pericial/estatística & dados numéricos , Equipe de Assistência ao Paciente/normas , Educação de Pacientes como Assunto , Padrões de Prática Médica , Neoplasias da Próstata/radioterapia , Radioterapia/estatística & dados numéricos , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Masculino , Período Pós-Operatório , Prognóstico , Prostatectomia , Neoplasias da Próstata/psicologia , Neoplasias da Próstata/cirurgia , Especialização , Inquéritos e Questionários
10.
Qual Life Res ; 20(5): 653-64, 2011 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-21110123

RESUMO

PURPOSE: To assess the patterns of, and trends over time in, health-related quality of life (HRQL) reporting in randomized controlled trials (RCTs). METHODS: The English-language literature of RCTs published in 2002-2008 was identified using Medline, Embase, and Healthstar databases, in addition to the Cochrane Clinical Trials Registry. Eligible trials were phase III studies that included an HRQL outcome. Data were abstracted on eight outcomes derived from previously recommended quality standards for reporting HRQL, and on four outcomes describing how HRQL data are presented in RCT reports. Two readers examined each article; discrepancies were resolved through discussion and third review if required. RESULTS: A sample of 794 RCTs was identified. HRQL was a primary outcome in 25.4% (200/794). One hundred and ten RCTs (14%) used "supplementary" reports (separate from the first publication) to report HRQL findings. The proportion of RCTs that met the eight quality indicators ranged from 15% (HRQL used in the calculation of sample size) to 81% (reporting instrument validity). RCTs with HRQL as a primary outcome or with a supplementary report had higher concordance on the quality measures. Reporting improved on many indicators over time. Substantive variation in how HRQL data are presented in RCTs was evident. CONCLUSIONS: Current practice of reporting HRQL outcomes in RCTs remains highly variable, both with regard to quality of reporting and the patterns of data analysis and presentation. This variation presents challenges for clinicians to apply these data in clinical practice. Consistent reporting practices, which are interpretable by clinicians, are required, as are processes to achieve this consistency in future reports.


Assuntos
Pesquisa Biomédica/métodos , Padrões de Prática Médica , Qualidade de Vida/psicologia , Ensaios Clínicos Controlados Aleatórios como Assunto , Autorrelato , Resultado do Tratamento , Adaptação Psicológica , Distribuição de Qui-Quadrado , Intervalos de Confiança , Bases de Dados Factuais , Humanos , Estresse Psicológico , Tempo
11.
Can J Urol ; 18(6): 5998-6006, 2011 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-22166326

RESUMO

INTRODUCTION: We conducted a systematic review of primary evidence to clarify what information influences treatment selection by patients with early stage prostate cancer. MATERIALS AND METHODS: We conducted a systematic review of the Web of Knowledge, using the ALL DATABASES option. Papers were then triaged out on the basis of the title and/or abstract, leaving 120 papers. Reviewing the full papers resulted in a final corpus of 21 papers. RESULTS: The data suggest that patients typically balance potential benefits against potential side effects but in a complex way with large variation across patients. For some patients, potential benefits relate to chances of survival but, for others, relate to control over cancer spread. The most common potential harm is effect on bladder functioning but even that is not a concern of all patients. Similarly, potential impact on bowel and on sexual functioning affects some patients' decisions but not others. Patient decisions are also affected by information not typically identified as affecting this decision. These include aspects of treatment and decision processes, competencies, and others' opinions, again, with wide variation across patients. The patient's view of which information items affect his decision may also change over time, consistent with a dynamic decision-making process. CONCLUSIONS: Decision support interventions are needed to optimally tailor information for decision-making to the individual patient, and should be designed to accommodate the illustrated variation in patients' needs.


Assuntos
Comportamento de Escolha , Tomada de Decisões , Estadiamento de Neoplasias , Participação do Paciente/psicologia , Neoplasias da Próstata/patologia , Neoplasias da Próstata/terapia , Técnicas de Apoio para a Decisão , Humanos , Masculino
12.
Acta Oncol ; 49(2): 136-43, 2010.
Artigo em Inglês | MEDLINE | ID: mdl-20100151

RESUMO

In this broad overview for the Conference: "State of the Science in Cancer Care", we review a conceptual framework of physician-patient communication and use the framework to inform the application of theory regarding communication and patient preferences in clinical practice. Using a selection of research, we illustrate how problematic issues in communication can be represented by the framework. We further illustrate how interventions designed to improve communication or to elicit patients' preferences in a medical encounter may have their desired effect, or may be optimally evaluated.


Assuntos
Comunicação , Preferência do Paciente , Relações Profissional-Paciente , Humanos , Avaliação das Necessidades , Projetos de Pesquisa
13.
Support Care Cancer ; 17(4): 429-35, 2009 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-18830718

RESUMO

PURPOSE: To assess the stability of information needs of early-stage prostate cancer patients by comparing needs in the same location, at two time points, almost 10 years apart. METHOD: Two groups of patients were surveyed (first, 1996; second, 2005) to identify retrospectively their information needs in the diagnosis-to-treatment-decision time interval. Both sampling cohorts were men diagnosed in one location in Canada within the previous 2 years. Participants rated the importance of getting answers to each of 92 questions (organized in eight categories) using four options: essential, desired, no opinion, or avoid. For each essential and desired question, respondents also indicated the reason(s) they wanted the question addressed: to understand, decide, plan, or other. RESULTS: The two groups had similar response rates: 38 (68%) in 1996 and 130 (70%) in 2005. They also had similar ages, marital status, or education. Both groups rated means of: 49 questions "essential" with wide ranges across respondents (12-90 vs 0-92 questions); 73 questions as "essential"/"desired"; and two questions to "avoid". At both times, every question was essential to some participants but only six (in 1996) and 12 (in 2005) questions were essential to over 80% of participants. In both groups, the most frequent reason for essential questions was for understanding (mean number of questions 34 vs 36), followed by decision making (means 13 vs 19), and then planning (means 10 vs 15). CONCLUSIONS: We have demonstrated reliably that, although many patients want a lot of information, the range in amount and in exact details varies considerably across individuals. Systematic patient education is needed, therefore, but it must be individualized.


Assuntos
Conhecimentos, Atitudes e Prática em Saúde , Avaliação das Necessidades/tendências , Educação de Pacientes como Assunto/tendências , Neoplasias da Próstata/psicologia , Idoso , Canadá/epidemiologia , Estudos de Coortes , Tomada de Decisões , Humanos , Masculino , Pessoa de Meia-Idade , Estudos Retrospectivos , Inquéritos e Questionários , Fatores de Tempo
14.
Patient Educ Couns ; 73(3): 437-42, 2008 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-18762405

RESUMO

OBJECTIVE: To compare information needs for decision-making by similar cohorts of Canadian early-stage prostate cancer patients, at two time points a decade apart. METHODS: Two patient groups (1st-1996, 2nd-2005), diagnosed within the previous 2 years, were surveyed. They rated the importance of having each of 92 questions addressed, using options: essential, desired, no opinion, or avoid. For each essential or desired question, respondents indicated their reasons for wanting the question addressed: to understand, decide, plan, or other. RESULTS: The two groups had similar response rates and demographics. The mean number of questions rated essential for decision-making/patient trended toward more by the later group (13 questions vs 19 questions) but, more importantly, there was wide variation within each group (0-68 questions vs 0-92 questions). The percentage of essential ratings for decision-making per question was highly correlated between the groups. Although almost every question was essential for decision-making to >1 patient, no question was essential to >50% in either group. CONCLUSION: At both times, most Canadian early-stage prostate cancer patients wanted some information specifically for decision-making, however, both the amount and exact details varied considerably amongst patients. PRACTICE IMPLICATION: Decision support for these patients should continue to accommodate wide variation in their information needs.


Assuntos
Tomada de Decisões , Avaliação das Necessidades/organização & administração , Educação de Pacientes como Assunto/organização & administração , Participação do Paciente/psicologia , Neoplasias da Próstata/psicologia , Idoso , Biópsia , Canadá , Distribuição de Qui-Quadrado , Estudos de Coortes , Técnicas de Apoio para a Decisão , Diagnóstico Precoce , Escolaridade , Humanos , Masculino , Pessoa de Meia-Idade , Estadiamento de Neoplasias , Participação do Paciente/métodos , Seleção de Pacientes , Neoplasias da Próstata/diagnóstico , Neoplasias da Próstata/terapia , Inquéritos e Questionários
15.
Can Urol Assoc J ; 12(10): 337-343, 2018 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-29989912

RESUMO

INTRODUCTION: We sought to determine the experiences and preferences of prostate cancer patients related to the process of making their treatment decisions, and to the use of decision support. METHODS: Population surveys were conducted in four Canadian provinces in 2014-2015. Each provincial cancer registry mailed surveys to a random sample of their prostate cancer patients diagnosed in late 2012. Three registries' response rates were 46-55%; the fourth used a different recruiting strategy, producing a response rate of 13% (total n=1366). RESULTS: Overall, 90% (n=1113) of respondents reported that they were involved in their treatment decisions. Twenty-three percent (n=247) of respondents wanted more help with the decision than they received and 52% of them (n=128) reported feeling well-informed. Only 51% (n=653) of all respondents reported receiving any decision support, but an additional 34% (n=437) would want to if they were aware of its existence. A quarter (25%, n=316) of respondents found it helpful to use a decision aid, a type of decision support that provides assistance to decision processes and provides information, but 64% (n=828) reported never having heard of decision aids; 26% (n=176) of those who had never heard of decision aids wanted more help with the decision than they received compared to 13% (n=36) of those who had used a decision aid. CONCLUSIONS: The majority of respondents wanted to participate in their treatment decisions, but a portion wanted more help than they received. Half of those who wanted more help felt well-informed, thus, needed support beyond information. Decision aids have potential to provide information and support to the decision process.

16.
Can Urol Assoc J ; 12(5): E219-E225, 2018 May.
Artigo em Inglês | MEDLINE | ID: mdl-29405903

RESUMO

INTRODUCTION: Prostate cancer patients' information needs are well-described, but little is known about their preferred sources and media for obtaining information. We sought to determine prostate cancer patients' experiences and preferences for acquiring information after diagnosis, a time of high information need. METHODS: Population surveys were conducted in four Canadian provinces in 2014-2015. Each provincial cancer registry surveyed a random sample of prostate cancer patients diagnosed in late 2012. RESULTS: A total of 1366 patients responded across provinces. Respondents most frequently tried to obtain information from their urologist; 86% found that easy and 9% found it difficult. Seventy-nine percent of respondents who saw only a urologist felt well-informed compared to 86% of those who saw both a urologist and a radiation oncologist. Eighty-five percent of respondents wanted printed information; 68% wanted it electronically. Respondents' most frequent barriers to obtaining information from physicians were: not actually having enough time (31%), worrying about having enough time (23%), and worrying about asking too many questions (18%). Their most frequent barriers related to internet/printed information, respectively, were uncertainty about quality (63%/49%) and unclear if personally applicable (56%/49%). Recommended facilitators were having a navigator (85%), providing printed information (85%), and someone to answer questions: in person (90%), by phone (66%), or via email (58%). CONCLUSIONS: Prostate cancer patients want urologists to provide them with information and are more likely to report being informed if they see both a urologist and a radiation oncologist. Optimal information provision requires that it be provided both on the internet and in print.

17.
J Med Imaging Radiat Sci ; 49(4): 365-370, 2018 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-30514552

RESUMO

INTRODUCTION: Radiation therapy (RT) after prostatectomy is an important curative treatment option for patients with prostate cancer. It can be delivered immediately after surgery as adjuvant treatment, or after biochemical PSA failure as salvage treatment. There is currently a lack of consensus regarding whether salvage RT in the event of biochemical failure or immediate adjuvant RT is the optimal postprostatectomy RT treatment. Although both types of postprostatectomy RT are generally well tolerated, patients may develop some toxicity that can impact their quality of life and the duration and frequency of treatments can be challenging for patients. It is imperative that patients be provided with evidence-based information so that they are able to make a treatment decision most aligned with their values. METHODS: To help address patients' informational needs, an online education resource was created for patients with prostate cancer considering postoperative RT. Patients and their families were asked to evaluate the effectiveness of this resource using a validated purpose-based information assessment. RESULTS: Nineteen patients were approached and 14 participated, but only five patients returned their evaluations (35%). Sixty percent found the information to be important with regards to each of the six commonly identified purposes in the purpose-based information assessment: organizing, understanding, decision-making, planning, emotional support, and discussing. Only one participant found the information hard to understand and had difficulty finding specific information. DISCUSSION: Patients should be encouraged to actively participate in their treatment decision-making process involving postprostatectomy RT. For patients to make well-informed decisions, patients must be provided with clear and accessible information so that they may understand their disease and the treatment options. CONCLUSION: An online education resource has been developed that most study respondents found clear and helpful for a variety of identified purposes. Overall, this online education resource has the potential to reach a large number of patients and their caregivers who desire specific information and involvement in future treatment decisions.


Assuntos
Educação a Distância/métodos , Educação de Pacientes como Assunto/métodos , Neoplasias da Próstata/radioterapia , Idoso , Cuidadores/educação , Tomada de Decisão Clínica/métodos , Medicina Baseada em Evidências/métodos , Humanos , Masculino , Pessoa de Meia-Idade , Participação do Paciente/métodos , Projetos Piloto , Prostatectomia , Neoplasias da Próstata/cirurgia , Radioterapia Adjuvante
18.
Can Urol Assoc J ; 12(4): E182-E190, 2018 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-29319482

RESUMO

INTRODUCTION: Use of chemotherapy for muscle-invasive bladder cancer (MIBC) is known to be low. To understand factors driving practice we use the Theoretical Domains Framework (TDF) to identify barriers and enablers of chemotherapy use. METHODS: A convenience sample of Canadian urologists, medical oncologists (MOs), and radiation oncologists (ROs) participated in individual, semi-structured, one-hour telephone interviews. An interview guide was developed using the TDF to assess potential barriers and enablers of chemotherapy use. Interviews were recorded and transcribed. Two investigators independently identified barriers and enablers and assigned them to specific themes. Participant recruitment continued until saturation. RESULTS: A total of 71 physicians were invited to participate and 34 (48%) agreed to be interviewed: 13 urologists, 10 MOs, and 11 ROs. We identified the following barriers to the use of chemotherapy (relevant TDF domains in parentheses): 1) belief that the benefits of chemotherapy are not clinically important (beliefs about consequences); 2) inadequate multidisciplinary collaboration (environmental context and resources); 3) absence of "champions" advocating the use of chemotherapy (social and professional role); and 4) a lack of organizational clarity/policy regarding the referral process (environmental context and resources). The predominant enablers identified included: 1) "champions" who believe in the value of chemotherapy (social and professional role); 2) urologists who refer all patients to MO (behavioural regulation; memory, attention, and decision-making); and 3) system-level factors, including automatic multidisciplinary referral (environmental context and resources). CONCLUSIONS: We have identified several system-level factors associated with delivery of chemotherapy. Behaviour change interventions should optimize multidisciplinary care of patients with MIBC. PATIENT SUMMARY: Despite the fact that chemotherapy before or after surgery improves survival of patients with bladder cancer, several studies have shown that many patients in routine practice are not treated. In this study, we identify important system-level and physician-level factors that must be considered in efforts to improve patient care.

19.
Bladder Cancer ; 4(1): 49-65, 2018 Jan 20.
Artigo em Inglês | MEDLINE | ID: mdl-29430507

RESUMO

BACKGROUND: Utilization of chemotherapy for patients with muscle-invasive bladder cancer (MIBC) is low. In earlier qualitative work we used the Theoretical Domains Framework (TDF) to determine barriers and enablers of chemotherapy use. In this project we aimed to determine the prevalence of these barriers and enablers in Canadian physicians. METHODS: Practicing Canadian urologists, medical oncologists (MOs) and radiation oncologists (ROs) participated in a specialty-specific web-based quantitative survey to assess potential barriers and enablers to chemotherapy use. Survey questions were developed that were thematically mapped to TDF domains. Logistic regression was used to identify TDF domains associated with high referral/use of chemotherapy. RESULTS: 110 urologists, 47 MOs and 43 ROs completed the survey; response rates were 20%, 35% and 31% respectively. The mean reported survival gain associated with neoadjuvant chemotherapy (NACT) was 9%, 8%, and 7% for urologists, MOs, and ROs respectively. Among participating urologists, the TDF domains 'social and professional role' (OR = 16.5, 95% CI 4.6-59.2), 'social influences' (OR = 5.7, 95% CI 2.4-13.4) 'beliefs about consequences' (OR = 4.9, 95% CI 1.8-13.3) and 'memory, attention and decision-making' (OR = 0.50, 95% CI 0.27-0.91) were associated with MO referral rates. Among MOs, the TDF domains 'behavioural regulation', 'social influences', and 'social and professional role' were associated with greater use of chemotherapy (p < 0.05). No TDF domains were associated with RO referral to MO. CONCLUSIONS: We have identified several factors associated with referral/use of chemotherapy for MIBC. Optimization of multidisciplinary patient care needs to be considered when designing future interventions to close the gap between evidence and practice.

20.
Med Decis Making ; 27(1): 34-43, 2007.
Artigo em Inglês | MEDLINE | ID: mdl-17237451

RESUMO

PURPOSE: To compare relative accuracy and relative response times (RTs) as well as impact of foreground and background colors in a treatment decision context of judging larger/smaller when the following elements are added to the graphics studied previously: 1) a number (the displayed percentage), 2) a referent scale, and 3) a number and a referent scale. METHOD: An experiment compared pie charts, vertical bars, horizontal bars, digits, systematic ovals, and random ovals. On each trial, participants saw 2 percentages (in 1 format) and were asked to choose the larger chance of survival or the smaller chance of side effects. Outcomes were errors and RT. Formats were either black and white or blue and yellow; background color was either white or blue. Participants were 216 volunteers from the community older than 50 years. RESULTS: Formats with a number produced the same relative errors and relative RT as the formats with a number and scale. Formats with only a scale, however, shifted relative performance: Errors increased with more difficult formats (pie charts and random ovals by 3%-4% v. approximately 1% with other formats), but RT decreased with easier formats (vertical bars, horizontal bars, and systematic ovals decreased 100-200 ms v. an increase of 0-300 ms with other formats). Vertical bars with scales were the fastest and most accurately processed. Neither foreground nor background color had any impact on either outcome. CONCLUSIONS: For supporting older people's judgments of relative extent, risk information is best presented using vertical bars with a scale; the format systematic ovals with a scale are among the next most easily processed.


Assuntos
Padrões de Prática Médica , Humanos , Pessoa de Meia-Idade
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