Health-Related Internet Use Among Men With Prostate Cancer in Canada: Cancer Registry Survey Study.

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.

Routine follow-up care after curative treatment of head and neck cancer: A survey of patients' needs and preferences for healthcare services.

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.

Evaluation of an Online Education Resource on Radiation Therapy Created for Patients with Postprostatectomy Prostate Cancer and Their Caregivers.

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.

Making their decisions for prostate cancer treatment: Patients' experiences and preferences related to process.

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.

Peri-Operative Chemotherapy for Bladder Cancer: A Survey of Providers to Determine Barriers and Enablers.

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.

Prostate cancer patients' experience and preferences for acquiring information early in their care.

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.

Perioperative chemotherapy for bladder cancer: A qualitative study of physician knowledge, attitudes, and behaviour.

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.

Breast Cancer Patients' Preferences for Adjuvant Radiotherapy Post Lumpectomy: Whole Breast Irradiation vs. Partial Breast Irradiation-Single Institutional Study.

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.

Bladder-sparing radiotherapy for muscle-invasive bladder cancer: A survey of providers to determine barriers and enablers.

BACKGROUND: To understand barriers and enablers to use of curative-intent radiotherapy (RT) for muscle-invasive bladder cancer using the Theoretical Domains Framework (TDF). METHODS: Canadian urologists, radiation oncologists (ROs) and medical oncologists (MOs) participated in a web-based survey to assess barriers and enablers to use of RT. Survey questions were thematically mapped to TDF domains. Logistic regression was used to identify TDF domains associated with high referral/use of RT. RESULTS: 64 urologists, 29 ROs and 26 MOs participated. Participants reported comparable survival at five years with cystectomy (51%) and RT with concurrent chemotherapy (50%). Despite this, participants reported low RT referral/treatment rates: Urologists referred a median of 2/10 patients to RO; ROs treated a median of 5/10 patients referred; and MOs referred a median of 2/8 patients not referred to RO by urology. Among urologists, the TDF domains 'beliefs about consequences' (OR=8.1, 95% CI 1.5-44.9), 'social and professional role' (OR=11.2, 95% CI 2.3-53.6) and 'environmental context and resources' (OR=5.9, 95% CI 1.5-23.3) were associated with higher rates of RO referral. CONCLUSIONS: We have identified factors associated with referral for RT among patients with bladder cancer. These factors should be addressed as part of a concerted effort to increase utilization of RT.

A Patient-centered Approach to Evaluate the Information Needs of Women With Ductal Carcinoma In Situ.

OBJECTIVE: To evaluate the information needs of ductal carcinoma in situ (DCIS) patients. METHODS: Four focus groups involving 24 previously treated DCIS patients were conducted to develop a comprehensive list of questions they felt were important to have answered at the time of diagnosis. Using a survey, a separate group of patients treated for DCIS then rated the importance of having each of these questions addressed before treatment decision making. Response options were "essential," "desired," "not important," "no opinion," and "avoid." For each essential/desired question, respondents specified how addressing it would help them: "understand," "decide," "plan," "not sure," or "other." RESULTS: Focus group participants generated 117 questions used in the survey. Fifty-seven patients completed the survey (55% response rate). Respondents rated a median of 66 questions as essential. The most commonly cited reason for rating a question essential was to "understand," followed by to "decide." The top questions women deemed essential to help them understand were disease specific, whereas the top questions deemed essential to help women decide were predominantly treatment specific, pertaining to available options, recurrence and survival outcomes, and timelines to decide and start treatment. CONCLUSIONS: DCIS patients want a large number of questions answered, mostly for understanding, and also for deciding and planning. A core set of questions that most patients consider essential for decision making has been formulated and may be used in the clinical setting and in research to develop educational resources and decision-making tools specific to DCIS.

Effects of Design Features of Explicit Values Clarification Methods: A Systematic Review.

BACKGROUND: Diverse values clarification methods exist. It is important to understand which, if any, of their design features help people clarify values relevant to a health decision. PURPOSE: To explore the effects of design features of explicit values clarification methods on outcomes including decisional conflict, values congruence, and decisional regret. DATA SOURCES: MEDLINE, all EBM Reviews, CINAHL, EMBASE, Google Scholar, manual search of reference lists, and expert contacts. STUDY SELECTION: Articles were included if they described the evaluation of 1 or more explicit values clarification methods. DATA EXTRACTION: We extracted details about the evaluation, whether it was conducted in the context of actual or hypothetical decisions, and the results of the evaluation. We combined these data with data from a previous review about each values clarification method's design features. DATA SYNTHESIS: We identified 20 evaluations of values clarification methods within 19 articles. Reported outcomes were heterogeneous. Few studies reported values congruence or postdecision outcomes. The most promising design feature identified was explicitly showing people the implications of their values, for example, by displaying the extent to which each of their decision options aligns with what matters to them. LIMITATIONS: Because of the heterogeneity of outcomes, we were unable to perform a meta-analysis. Results should be interpreted with caution. CONCLUSIONS: Few values clarification methods have been evaluated experimentally. More research is needed to determine effects of different design features of values clarification methods and to establish best practices in values clarification. When feasible, evaluations should assess values congruence and postdecision measures of longer-term outcomes.

What Aspects of Personal Care Are Most Important to Patients Undergoing Radiation Therapy for Prostate Cancer?

PURPOSE/OBJECTIVE: The overall quality of patient care is a function of the quality of both its technical and its nontechnical components. The purpose of this study was to identify the elements of nontechnical (personal) care that are most important to patients undergoing radiation therapy for prostate cancer. METHODS AND MATERIALS: We reviewed the literature and interviewed patients and health professionals to identify elements of personal care pertinent to patients undergoing radiation therapy for prostate cancer. We identified 143 individual elements relating to 10 aspects of personal care. Patients undergoing radical radiation therapy for prostate cancer completed a self-administered questionnaire in which they rated the importance of each element. The overall importance of each element was measured by the percentage of respondents who rated it as "very important." The importance of each aspect of personal care was measured by the mean importance of its elements. RESULTS: One hundred eight patients completed the questionnaire. The percentage of patients who rated each element "very important" ranged from 7% to 95% (mean 61%). The mean importance rating of the elements of each aspect of care varied significantly: "perceived competence of caregivers," 80%; "empathy and respectfulness of caregivers," 67%; "adequacy of information sharing," 67%; "patient centeredness," 59%; "accessibility of caregivers," 57%; "continuity of care," 51%; "privacy," 51%; "convenience," 45%; "comprehensiveness of services," 44%; and "treatment environment," 30% (P<.0001). Neither age nor education was associated with importance ratings, but the patient's health status was associated with the rating of some elements of care. CONCLUSIONS: Many different elements of personal care are important to patients undergoing radiation therapy for prostate cancer, but the 3 aspects of care that most believe are most important are these: the perceived competence of their caregivers, the empathy and respectfulness of their caregivers, and the adequacy of information sharing.

Design Features of Explicit Values Clarification Methods: A Systematic Review.

BACKGROUND: Values clarification is a recommended element of patient decision aids. Many different values clarification methods exist, but there is little evidence synthesis available to guide design decisions. PURPOSE: To describe practices in the field of explicit values clarification methods according to a taxonomy of design features. DATA SOURCES: MEDLINE, all EBM Reviews, CINAHL, EMBASE, Google Scholar, manual search of reference lists, and expert contacts. STUDY SELECTION: Articles were included if they described 1 or more explicit values clarification methods. DATA EXTRACTION: We extracted data about decisions addressed; use of theories, frameworks, and guidelines; and 12 design features. DATA SYNTHESIS: We identified 110 articles describing 98 explicit values clarification methods. Most of these addressed decisions in cancer or reproductive health, and half addressed a decision between just 2 options. Most used neither theory nor guidelines to structure their design. "Pros and cons" was the most common type of values clarification method. Most methods did not allow users to add their own concerns. Few methods explicitly presented tradeoffs inherent in the decision, supported an iterative process of values exploration, or showed how different options aligned with users' values. LIMITATIONS: Study selection criteria and choice of elements for the taxonomy may have excluded values clarification methods or design features. CONCLUSIONS: Explicit values clarification methods have diverse designs but can be systematically cataloged within the structure of a taxonomy. Developers of values clarification methods should carefully consider each of the design features in this taxonomy and publish adequate descriptions of their designs. More research is needed to study the effects of different design features.

Prostate Cancer Patients' Preferences for Intermittent vs. Continuous Androgen Deprivation-A Pilot Institutional Study.

INTRODUCTION: With locally advanced, recurrent, and metastatic prostate cancer patients, patient preference between intermittent (IAD) and continuous (CAD) androgen deprivation therapy has not been investigated. The goal of the study was to determine patients' preference for IAD vs. CAD therapy. The secondary aim was to elucidate demographic or treatment variables that may affect a patient's preference for one type of hormonal treatment. MATERIALS AND METHODS: Using a tradeoff model that demonstrates the difference in outcome between IAD and CAD, a survey questionnaire was developed and administered to prostate cancer patients at the Odette Cancer Centre at Sunnybrook Health Sciences Centre in Toronto, Ontario, Canada. Only patients who had (1) locally advanced prostate cancer, (2) been previously treated for prostate cancer with relapsing prostate-specific antigen, or (3) slow metastatic disease were asked to participate. Data related to patients' demographic information and their decisional preference factors were collected. RESULTS AND CONCLUSIONS: Overall, 36 of 53 (68%) patients completed the survey. Most patients favoured IAD (n = 32) over CAD (n = 4). Patients currently on radical treatment (adjuvant hormone therapy and radiation therapy) preferred CAD compared with patients who were not on radical treatment (P = .044). Patients with high (>20 ng/L) pretreatment prostate-specific antigen showed preference for CAD; however, this was not statistically significant (P = 0.07). Patients from both groups viewed quality of life as the strongest influence on their treatment preference, but had diverging opinions on side effects and general well being. The results of this pilot study could serve as a guide for future studies; a larger study combined with qualitative methodology may better address patients' needs and minimize any regret over their hormonal treatment.

Empowering Patients through Education: Exploring Patients' Needs about Postoperative Radiation Therapy for Prostate Cancer at the Sunnybrook Odette Cancer Centre.

INTRODUCTION: There is currently no consensus regarding the optimal treatment for postprostatectomy prostate cancer patients. The primary objective of this study was to investigate patient opinions regarding the questions that should be discussed between health care professionals and postprostatectomy patients who may require radiation therapy with adjuvant or salvage intent, to help facilitate the decision-making process. METHODS: Patients who were consulted for treatment of prostate cancer at the Sunnybrook Odette Cancer Centre and who had undergone a prostatectomy were invited to complete a survey. Respondents were asked to rate the importance of 74 questions that may be important to patients in their situation using a four-point ordinal scale (essential, important, no opinion, and avoid). Questions were grouped into six domains pertaining to diagnosis, decision making, radiation therapy procedures, benefits, side effects, and supportive network. Patients were also asked to list any other additional comments or questions that should be included. Descriptive statistics were calculated for all variables of interest. Chi-square analyses and Fisher exact tests were used to assess differences in numbers of patients choosing the essential response between demographics. RESULTS: Thirty-one patients agreed to participate and completed the survey. The majority of questions rated as essential or important by patients were from the "understanding my situation and prostate cancer diagnosis" domain, accounting for over 90% of patients. Overall, patients who were over 60, white, had an education of high school or less, and lived more than 10 km away from the cancer centre were more likely to have rated these questions as "important" or "essential." A few additional comments were also listed regarding side effects, prostate-specific antigen levels, further testing, and radiation therapy treatment. CONCLUSIONS: Our study showed that there is wide variability among patients regarding the information that they want and need. Every question in our study was essential to some patients, and there was no question deemed so by the whole group. The information from the study will help in building an educational tool for postprostatectomy patients with prostate cancer and their families.

Why is perioperative chemotherapy for bladder cancer underutilized?

Despite clinical evidence and recommendations from international treatment guidelines, the use of perioperative chemotherapy for muscle-invasive bladder cancer in routine practice remains low. Although multiple studies have described underutilization, there is an urgent need to better understand the elements contributing to the observed gaps in care. In this commentary, we explore what is known about the factors contributing to underutilization of perioperative chemotherapy for muscle-invasive bladder cancer. We also propose a framework to guide future knowledge translation activities in an effort to improve the care and outcomes of patients with this disease.

Decisional support throughout the cancer journey for older women diagnosed with early stage breast cancer: a single institutional study.

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.

Information needs of early-stage prostate cancer patients: within- and between-group agreement of patients and health professionals.

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.