Do family health clinics provide primary-level palliative care in Ontario and the eastern regions of Quebec?

OBJECTIVE: To explore the extent to which family health clinics in Ontario and the eastern regions of the province of Quebec provide palliative care. DESIGN: A cross-sectional survey. SETTING: Ontario and the eastern regions of Quebec. PARTICIPANTS: The clinic leads of a select group of family health clinics with patient enrolment models in Ontario and the eastern regions of Quebec. MAIN OUTCOME MEASURES: The types of palliative care services that the clinics provide, as well as the enablers of and barriers to providing palliative care within the 2 provinces. RESULTS: The overall response rate was 32%. Clinics in both provinces reported providing palliative care to ambulatory patients (83% of Ontario clinics and 74% of Quebec clinics). Only 29 of 102 (28%) Ontario clinics provided on-call services themselves, compared with 31 of 34 (91%) Quebec clinics, with the resulting effect being that more patients were directed to emergency departments in Ontario. Access to palliative care specialist teams for support was higher in Ontario than in Quebec (67% vs 41%, respectively). In Ontario, 56% of practices indicated that they had access to palliative care physicians who could take over the care of their patients with palliative care needs, but a lower number (44%) actually handed over care to these physicians. CONCLUSION: A group of clinics are providing full palliative care services to their own patients with palliative care needs, including "on-call" services and home visits, and these serve as role models. In Ontario in particular, substantial gaps still exist with respect to clinics providing their own after-hours coverage and home visits; many rely on other services to provide that care. In Quebec, lack of access to palliative care specialist teams appears to be a key challenge in the areas included in this survey. This survey could help policy makers and funders of health care services ensure that appropriate conditions are put in place for optimal palliative care provision in these clinics, such as coordinating access to on-call coverage and support from palliative care specialist teams, as well as providing education to all physicians and adequate remuneration.

Deconstructing Cancer Patient Information Seeking in a Consumer Health Library Toward Developing a Virtual Information Consult for Cancer Patients and Their Caregivers: A Qualitative, Instrumental Case Study.

BACKGROUND: Cancer patients and their caregivers want information about their disease and are interested in finding health information online. Despite the abundance of cancer information online, it is often fragmented, its quality is highly variable, and it can be difficult to navigate without expert-level knowledge of the cancer system. The Patient & Family Library at the Princess Margaret Cancer Centre offers a broad collection of high-quality cancer health information and staff are available to help patrons refine their questions and explore information needs that they may not have considered. OBJECTIVE: The purpose of this research study was to deconstruct patrons' information-seeking behaviors in the library to assess the feasibility of replicating the services provided in the library through a Web app, extending the service beyond the walls of the cancer centre. The specific aims of this research were to understand (1) how patrons approach information seeking in the library (interface design), (2) how patrons communicate their informational needs (information categorization and metadata requirements), and (3) what resources are provided to address the patrons' information needs (collection development). METHODS: We employed a qualitative, instrumental case study to deconstruct patrons' health information-seeking behavior. The study population included patients, the librarian, and library volunteers. Ethnographic observation was conducted at the library over 3 days and key informant interviews with library staff were conducted to address the first aim. A closed card-sorting activity was conducted to address the second aim and the library shift logs and Search Request Forms (SRFs) were reviewed to address the third aim. RESULTS: A total of 55 interactions were recorded during the ethnographic observation and nine semistructured interviews were conducted during the key informant interviews. Seven library patron personas were identified: (1) Newbie, (2) Seasoned, (3) Direct, (4) Window Shopper, (5) Collector, (6) Information Seeker, and (7) Distressed. A total of 83 participants completed the closed card-sorting exercise. The participants' conceptual clusters within the similarity matrix overlapped with the groupings created by the librarian, with a few differences. A total of 161 entries in the library shift log and 65 SRFs were analyzed to determine what resources were given to patrons. Most resources that patrons received were available online (61%), although almost half of these required special access (47%). CONCLUSIONS: The study findings suggest it is possible to replicate library functions in a Web app with a few exceptions that cannot be replicated online. These elements include access to journal articles or other content behind paywalls and the librarian's ability to encourage further discussion through empathy and active listening. Discussion with the librarian could serve to refine and predict needs through observing information seekers and to provide immediate connection to spiritual care and psychosocial support for patrons in distress.

The CaregiverVoice Survey: A Pilot Study Surveying Bereaved Caregivers To Measure the Caregiver and Patient Experience at End of Life.

OBJECTIVE: To integrate patient and caregiver feedback into end-of-life (EOL) care improvement, we tested the feasibility of a standardized, common instrument to measure care experiences across multiple settings in the last three months of life. METHODS: We developed and tested a survey, called the CaregiverVoice survey, which combined two validated questionnaires, the FAMCARE-2 and VOICES-SF. A retrospective, observational design was used to survey bereaved caregivers of decedents who had received homecare services in Ontario, Canada. RESULTS: In total, 330 surveys were completed (overall response rate of 13%, regional rates ranged from 4% to 83%). There was less than 5% missing data. Most patients received care from multiple settings in the last three months of life, including 60% for which a hospital stay was reported. The overall mean of the 19 FAMCARE-2 items was 1.7 (SD 0.7), with 72% of ratings as 1 very satisfied to 2 satisfied. On VOICES-SF items, 6% of respondents rated "all end-of-life services" as fair or poor, 24% as good, and 70% as excellent or outstanding, with variation depending on care site rated. 13% of caregivers reported that pain management was fair or poor in the last week of life. CONCLUSIONS: This pilot study provides preliminary evidence that it is feasible to capture the patient and caregiver experience at EOL using a comprehensive survey, though survey distribution method greatly affected response rates. The majority of responses rated care as excellent or very good, although several specific areas for improvement were identified.

Engaging Patients in Online Self-Care Technologies for Chronic Disease Management.

A common perception is that the use of Internet-based self-care systems is best suited for a younger, tech-proficient population, and that these systems will increase the burden on patients with complex chronic conditions. The study stratified patients with diabetes into three regimens of use of an Internet-based diabetes self-care portal. Results show that patients were more likely to adhere to a diurnal regimen than a variable regimen, and older patients, over the age of 60, were more adherent than younger patients, regardless of regimen. This suggests that common misconceptions should be reconsidered when prescribing Internet-based interventions for patients with chronic illness.

Would your patient prefer to be considered your friend? Patient preferences in physician relationships.

OBJECTIVES: To understand how patient preferences and perceptions of their relationship with their doctor (as patient, friend, partner, client, consumer, or insured) affects confidence in care provided and participation in health care. METHODS: Telephone questionnaire to 2,135 households, representative of the population in Israel. RESULTS: A total of 508 completed the questionnaire. Most described perceived and desired relationships with their doctor as patient or friend. Individuals were least satisfied with business-type relationships implied by client, consumer, or insured. Preference in relationship type was not associated with participation in health care. Those with a patient, friend, or partner relationship were twice as confident in their care as those with a business-type relationship. CONCLUSIONS: Preferences for the terms patient and friend over business terms highlight the importance of the human connection in the patient-physician relationship. Although one might consider patient a paternalistic term, those with a patient, partner, or friend-type versus a business-type relationship had much greater confidence in their care and were no less likely to be active participants in their own health care.

Informational needs of gastrointestinal oncology patients.

OBJECTIVES: In response to the dearth of consumer health information for patients with gastrointestinal cancers, this study examined the informational needs of these patients to build a plan for future resource development. Although studies have examined informational needs of some such cancers, no published literature has investigated the comprehensive informational needs across all sites of gastrointestinal cancer. METHODS: A cross-sectional needs assessment comprising a self-administered questionnaire was conducted at an ambulatory gastrointestinal oncology clinic in Toronto, Canada. Patient informational needs were measured, including importance of information, amount desired and preferred mode of delivery. Informational needs were grouped into six domains: medical, practical, physical, emotional, social and spiritual. RESULTS: Eighty-two surveys were analysed. The majority of the respondents were male (53.8%), over the age of 50 (77.8%), and born outside of Canada (51.9%). While many did not speak English as a child (46.3%), and do not speak English at home (22.2%), nearly all indicated comfort with receiving health information in English (97.5%). The majority of respondents were college educated (79.3%) and married (73%). Multiple cancer types were reported; the most common being colorectal (39%), followed by pancreatic (12%) and cancers of the gallbladder or bile duct (12%). Overall, respondents placed highest importance on medical information (P < 0.001). Preferred education modalities were pamphlets, websites and one-on-one discussions with health-care professionals. CONCLUSIONS: This study highlights the principal informational needs of patients with gastrointestinal malignancies, along with preferred modality for information delivery. This information will guide the development of educational resources for future patients.

Understanding the needs of colorectal cancer patients during the pre-diagnosis phase.

Patients with colorectal cancer (CRC) face a number of challenges leading up to diagnosis; however, research is limited regarding their specific needs during the pre-diagnosis period. A multicenter cross-sectional survey was conducted to elicit information about the CRC experience during the pre-diagnosis phase. Across the three sites, 104 eligible patients were approached, and 82 patients completed the survey, for a total response rate of 78.9%. The needs most identified by participants during the pre-diagnosis period were informational (31.6%) and emotional (20.3%) needs; social needs were rated as the least important need for these patients (7%). The majority (84.0%) reported that these needs were met. Participants reported feeling shocked or overwhelmed on learning of their diagnosis (57.1%) and high levels of anxiety during this time (40.0%). The majority (77.9%) of participants reported that they were not directed to any resources to help address their anxiety. Informational and emotional needs are identified as the most important needs during the pre-diagnosis phase, and for most these needs are being met; however, some participants are experiencing high levels of anxiety without access to appropriate resources. Further work is required to understand the optimal mechanisms to address identified needs during this pre-diagnosis period and to assess the potential benefits and costs of addressing these needs.

A pilot study of an exercise & cognitive behavioral therapy intervention for epithelial ovarian cancer patients.

BACKGROUND: Ovarian cancer has the highest mortality rate of all gynaecologic cancers. Faced with poor prognoses, stressful treatment effects and a high likelihood of recurrence, survivors must confront significant physical and psychological morbidities that negatively impact health-related quality of life. Frequently reported side effects include cancer-related fatigue, peripheral neuropathy, and psychological distress. Exercise and cognitive behavioral therapy interventions have counteracted such adverse effects in other cancer populations. OBJECTIVE: To investigate the feasibility and benefits of a 24-week home-based exercise intervention, coordinated with 12 weeks of cognitive behavioral therapy (two sessions per month), developed for two types of patients diagnosed with epithelial ovarian cancer: 1) those undergoing primary treatment with adjuvant chemotherapy after primary surgery; 2) those on surveillance after completing treatment within the last 2 years. METHODS: Participants were recruited from the Gynaecologic Oncology Clinic. Eligible participants completed baseline assessments and were provided with home-based exercise equipment. Cognitive behavioral therapy was provided every other week for patients via telephone. Assessments were completed at baseline (T1), 3 months (T2) and 6 months (T3). RESULTS: 19 of the 46 eligible patients approached were enrolled, with 7 patients in the treatment group and 12 in the surveillance group. There was a significant within group increase in peak VO2 from baseline to 6 months: F(2,16) = 5.531, p = 0.015, partial η2 = 0.409. CONCLUSION: The combined 6-month exercise-cognitive behavioral therapy intervention was associated with significant increases in aerobic fitness in epithelial ovarian cancer patients assessed. These improvements were similar regardless of whether the patient was receiving chemotherapy or under surveillance.

Exploring the use of the survivorship consult in providing survivorship care.

PURPOSE: Advances in breast cancer treatment have increased survival and contributed to longer periods of survivorship as reported by the Committee CCSsS (Canadian Cancer Statistics) (2011) and Hewitt et al. (2005), increasing the relevance of survivorship care. Survivorship care includes encouraging survivors to acquire the knowledge, skills and confidence to manage their life, as well as engaging survivors through post-diagnosis disease self-management and self-care strategies. The Survivorship Consult (SC) was designed to help survivors reflect on their needs, establish goals and create an action plan. METHODS: Twenty-six breast cancer survivors who participated in the SC at Princess Margaret Cancer Centre took part in semi-structured interviews to assess the survivor experience and effectiveness of the SC. Data from these interviews were coded, and themes were identified using a modified grounded theory approach. RESULTS: Themes that emerged regarding the experience and effectiveness of the SC included (1) the supportive experience of collaborative dialogue with supportive care clinicians (i.e. nurses, social workers, occupational therapists, etc.), (2) the development of personalized goals that motivated individuals to implement recommendations, (3) an enhanced understanding of their health condition, team and options, (4) an improved ability to identify needs and (5) an increased sense of confidence to manage issues related to care. CONCLUSIONS: The assessment of the SC improved the experience of breast cancer patients by providing a supportive environment where they could feel cared about, by increasing understanding of their condition and its treatment, by improving communication with the care team and by motivating patients to manage care issues. Further research is needed on survivors who conduct the SC before the treatment phase of their cancer trajectory.

Psychosexual distress in women with gynecologic cancer: a feasibility study of an online support group.

OBJECTIVES: The psychosexual concerns of gynecologic cancer patients are often unaddressed and there are limited resources available for women to deal with this highly sensitive topic. This feasibility study examines the participation rates and preliminary outcomes for an online support group designed specifically for women who are sexually distressed subsequent to gynecologic cancer treatment METHODS: A 12-week online intervention was developed to address the psychosexual impact of gynecologic cancer. This intervention included a professionally moderated, asynchronous discussion forum as well as the provision of psycho-educational materials addressing the psychosexual impact of gynecologic cancer. Each week, a new topic was introduced and relevant material was posted on the website. Women were encouraged to share their experiences related to the topic. Twenty-seven, sexually distressed, remitted gynecologic cancer patients were randomly assigned to immediate treatment or a waitlist control condition. Participants completed questionnaires at baseline, 4-month and 8-month follow-ups assessing sexual distress as the primary outcome as well as anxiety, depression, and illness intrusiveness. RESULTS: Participation rates differed between the two groups, with greater participation occurring in the second group. Exit interviews indicated that the majority of the participants were satisfied with the intervention. Intent-to-treat analyses suggest a small effect for reduction in sexual distress CONCLUSIONS: This feasibility study suggests that women find this intervention acceptable. Further research is required to determine efficacy.

Improving diabetes management with a patient portal: a qualitative study of diabetes self-management portal.

BACKGROUND: Effective management and care of diabetes is crucial to reducing associated risks such as heart disease and kidney failure. With increasing access and use of the Internet, online chronic disease management is being explored as a means of providing patients with support and the necessary tools to monitor and manage their disease. OBJECTIVE: The objective of our study was to evaluate the experience of patients and providers using an online diabetes management portal for patients. METHODS: Participants were recruited from a large sample population of 887 for a follow-up questionnaire to be completed after 6 months of using the patient portal. Participants were presented with the option to participate in an additional interview and, if the participant agreed, a time and date was scheduled for the interview. A 5-item, open-ended questionnaire was used to capture providers' opinions of the patient portal. Providers included general practitioners (GPs), nurses, nurse practitioners (NPs), dieticians, diabetes educators (DECs), and other clinical staff. RESULTS: A total of 854 patients were consented for the questionnaire. Seventeen (8 male, 9 female) patients agreed to participate in a telephone interview. Sixty-four health care providers completed the five open-ended questions; however, an average of 48.2 responses were recorded per question. Four major themes were identified and will be discussed in this paper. These themes have been classified as: facilitators of disease management, barriers to portal use, patient-provider communication and relationship, and recommendations for portal improvements. CONCLUSIONS: This qualitative study shows that online chronic disease management portals increase patient access to information and engagement in their health care, but improvements in the portal itself may improve usability and reduce attrition. Furthermore, this study identifies a grey area that exists in the roles that GPs and AHPs should play in the facilitation of online disease management.

Understanding the needs of lung cancer patients during the pre-diagnosis phase.

Patients with lung cancer have numerous and varying needs spanning across the cancer trajectory; however, only limited research has focused specifically on the pre-diagnosis phase. A multicentre cross-sectional survey was conducted to explore the experience of lung cancer patients during the pre-diagnosis phase. High levels of anxiety were reported by many participants (45.6 %). Informational (32.1 %), and emotional (24.1 %) needs were reported as most important; the majority (89.0 %) reported these needs were met. Most participants sought information throughout, with many (38.6 %) rating their oncology health care providers to be the best source of information. The majority (70.0 %) reported that they were not directed to any resources to help address their anxiety. During pre-diagnosis, informational and emotional needs appear most important, and for the majority, these were reportedly met. Although many experienced high levels of anxiety, few were directed to resources to address it.

Confirmatory factor analysis of the Sexual Adjustment and Body Image Scale in women with gynecologic cancer.

BACKGROUND: There is evidence that treatment of gynecologic cancer (GC) negatively affects body image and sexuality. The Sexual Adjustment and Body Image Scale (SABIS-G) was developed to assess disturbances after diagnosis of GC. The objective of this study was to confirm the factor structure using a confirmatory factor analysis (CFA). METHODS: Women with a history of GC completed the SABIS-G, a 9-item self-report measure. Ninety randomly selected participants were used for the exploratory factor analysis (EFA). CFA was performed on the remaining participants (n = 204) to confirm the factor structure developed in the EFA against a one-factor model. Test-retest reliability between baseline and follow-up scores was assessed using the intraclass correlation coefficient. RESULTS: A total of 614 eligible patients were approached to participate: 398 (65%) consented to the study and 294 (74%) completed the SABIS-G. The median age was 53 years (range, 27-80 years) and the primary site of disease was: 120 (41%) uterine, 85 (29%) ovary, 82 (28%) cervix, and 7 (2%) other. A 2-factor structure was favored in the EFA, and the CFA fit indices indicated an excellent fit for the 2-factor measurement model (standardized root-mean-square residual = 0.05, non-normed fit index = 0.97, comparative fit index = 0.98). Internal consistency reliability was high for the Body Image (0.88) and Sexual Adjustment (0.91) subscales, as was test-retest reliability (0.89). CONCLUSIONS: These results confirm the 2-factor structure of the SABIS-G and provide evidence that this is a valid and reliable instrument to measure changes in body image and sexuality in women after a diagnosis of GC.

Informational needs of gynecologic cancer survivors.

OBJECTIVES: In preparation for the launch of a gynecologic oncology survivorship program, this study looked at the informational needs of women with gynecologic cancers. Although studies have touched on some of these needs, no published literature has investigated the comprehensive informational needs of gynecologic oncology patients within all sites of gynecologic cancers. METHODS: A needs assessment, consisting of a self-administered questionnaire, was conducted at an ambulatory gynecologic oncology clinic from August 2010 to March 2011. This study investigated the informational needs of patients, including the importance of information, the amount desired, and the preferred mode of delivery. Informational needs were grouped into six domains: medical, practical, physical, emotional, social, and spiritual. RESULTS: 185 surveys were analyzed and the majority of the respondents were Caucasian (77%) and over the age of 50 (66%). Forty-nine percent of respondents were diagnosed with ovarian cancer, and there was an even distribution between newly diagnosed patients (38%), those in long-term follow-up (27%), and those with recurrent disease (37%). Overall, respondents placed more importance on receiving medical information (P<0.01). The three preferred education modalities were; pamphlets, one-on-one discussions with health care professionals and websites. Age, education, and disease site were associated with differing informational needs. CONCLUSIONS: This study has highlighted the most important informational needs of patients with gynecologic malignancies in our patient population. This information may guide the development of clinical survivorship programs and educational resources for patients in the future.

A qualitative study of an internet-based support group for women with sexual distress due to gynecologic cancer.

Internet-based support groups for cancer patients have been studied extensively; very few have focused on gynecologic cancer. We pilot-tested a web-based support group for gynecologic cancer patients and assessed women's perceptions of the intervention. Twenty-seven gynecologic cancer patients were randomized to an immediate intervention or a waitlist control group. Women participated in a 12-week, web-based support group focusing on sexuality-related topics. Semi-structured interviews were conducted to investigate the feasibility and efficacy of the intervention. Women reported benefits to participating in the intervention, including receiving support from group members and moderators, increased emotional well-being, improved feelings of body image and sexuality, and comfort in discussing sexuality online. Web-based support groups are both feasible and accepted by gynecologic cancer patients with psychosexual distress. The online format provided women with easy access to the support group and anonymity in discussing psychosexual concerns. Women with gynecologic cancer may benefit from participating in online support groups which provide an environment of relative anonymity to discuss psychosexual concerns.

The anxious wait: assessing the impact of patient accessible EHRs for breast cancer patients.

BACKGROUND: Personal health records (PHRs) provide patients with access to personal health information (PHI) and targeted education. The use of PHRs has the potential to improve a wide range of outcomes, including empowering patients to be more active participants in their care. There are a number of widespread barriers to adoption, including privacy and security considerations. In addition, there are clinical concerns that patients could become anxious or distressed when accessing complex medical information. This study assesses the implementation of a PHR, and its impact on anxiety levels and perceptions of self-efficacy in a sample of breast cancer patients. METHODS: A quasi-experimental pre-test/post-test design was used to collect data from participants to evaluate the use of the PHR. Study participants completed background and pre-assessment questionnaires and were then registered into the portal. By entering an activation key, participants were then able to review their lab results and diagnostic imaging reports. After six weeks, participants completed post-assessment questionnaires and usability heuristics. All data were collected using an online survey tool. Data were cleaned and analyzed using SAS v9.1. RESULTS: A total of 311 breast cancer patients completed demographic and pre-assessment questionnaires, 250 registered to use the online intervention, and 125 participants completed all required study elements. Matching the pre- and post-anxiety scores demonstrated a decrease in mean anxiety scores (-2.2, p = 0.03); the chemotherapy sub-group had a statistically insignificant mean increase (1.8, p = .14). There was no mean change in self-efficacy scores. CONCLUSIONS: Participants generally found the portal easy to use; however, the perceived value of improved participation was not detected in the self-efficacy scores. Having access to personal health information did not increase anxiety levels. While these results suggest that the use of this PHR may be of benefit for informing patients, further research is required to investigate the impact on the patients experiences, their participation in their care, their relationships with the health care team, and their health outcomes.

The role of a clinician-led reflective interview on improving self-efficacy in breast cancer survivors: a pilot study.

Breast cancer survivors experience a wide range of survivorship issues that are not always adequately addressed. This study is an assessment of the Survivorship Consult (SC), a one-to-one clinician-led reflective interview used to capture a comprehensive summary of the survivor experience, to determine its impact on self-efficacy and the perceived likelihood that it initiates behavior change. Using a pre-test/post-test design, data were collected from participants (N = 40) using validated instruments and opened-ended questions to evaluate the SC. Participants found the SC to be a useful tool for planning and goal setting and improved self-efficacy as measured by the Cancer Behavior Inventory with an increase of 2.0 (p = 0.03). The SC demonstrates promise in improving the ability and confidence of breast cancer survivors to manage their care, but further research is required to understand the optimal implementation of this intervention and its impact on the delivery of survivorship services.

Understanding the support needs of patients accessing test results online. PHRs offer great promise, but support issues must be addressed to ensure appropriate access.

Personal health records (PHR) offer great promise in transforming the patient experience, but a number of support issues must be addressed to ensure that patients have appropriate access to their health information. Two hundred and fifty breast cancer patients registered to use a portal providing access to personal health information over a six-week period. All support calls were directed to a research triage centre and redirected either to technical, clinical or psychosocial support. Log files were coded and analyzed. Two hundred and thirty-nine support contacts were logged by 122 participants. The majority was referred to technical support; the remaining contacts were directed to clinical support. Seven categories of technical support were identified: registration problems, site access, login issues, password reset, activation key issues, result access and other difficulties. In accessing their test results, patients required support in a number of technical domains, but educational and psychosocial support were not heavily utilized.