Virtual follow-up care among breast and prostate cancer patients during and beyond the COVID-19 pandemic: Association with distress.

BACKGROUND: The purpose of this study was to investigate associations between self-reported distress (anxiety/depression) and satisfaction with and desire for virtual follow-up (VFU) care among cancer patients during and beyond the COVID-19 pandemic. METHODS: Breast and prostate cancer patients receiving VFU at an urban cancer centre in Toronto, Canada completed an online survey on their sociodemographic, clinical, and technology, characteristics and experience with and views on VFU. EQ5D-5 L was used to assess distress. Statistical models adjusted for age, gender, education, income and Internet confidence. RESULTS: Of 352 participants, average age was 65 years, 48% were women,79% were within 5 years of treatment completion, 84% had college/university education and 74% were confident Internet users. Nearly, all (98%) had a virtual visit via phone and 22% had a virtual visit via video. The majority of patients (86%) were satisfied with VFU and 70% agreed that they would like VFU options after the COVID-19 pandemic. Participants who reported distress and who were not confident using the Internet for health purposes were significantly less likely to be satisfied with VFU (OR = 0.4; 95% CI: 0.2-0.8 and OR = 0.19; 95% CI: 0.09-0.38, respectively) and were less likely to desire VFU option after the COVID-19 pandemic (OR = 0.49; 95% CI: 0.30-0.82 and OR = 0.41; 95% CI: 0.23-0.70, respectively). CONCLUSIONS: The majority of respondents were satisfied with VFU and would like VFU options after the COVID-19 pandemic. Future research should determine how to optimize VFU options for cancer patients who are distressed and who are less confident using virtual care technology.

Virtual Cancer Care Beyond the COVID-19 Pandemic: Patient and Staff Perspectives and Recommendations.

PURPOSE: COVID-19 catalyzed rapid implementation of virtual cancer care (VC); however, work is needed to inform long-term adoption. We evaluated patient and staff experiences with VC at a large urban, tertiary cancer center to inform recommendations for postpandemic sustainment. METHODS: All physicians who had provided VC during the pandemic and all patients who had a valid e-mail address on file and at least one visit to the Princess Margaret Cancer Centre in Toronto, Canada, in the preceding year were invited to complete a survey. Interviews and focus groups with patients and staff across the cancer center were analyzed using qualitative descriptive analysis and triangulated with survey findings. RESULTS: Response rates for patients and physicians were 15% (2,343 of 15,169) and 41% (100 of 246), respectively. A greater proportion of patients than physicians were satisfied with VC (80.1 v 53.4%; P < .01). In addition, fewer patients than physicians felt that virtual visits were worse than those conducted in person (28.0 v 43.4%; P < .01) and that telephone and video visits negatively affected the human interaction that they valued (59.8% v 82.0%; P < .01). Major barriers to VC for patients were respect for care preferences and personal boundaries, accessibility, and equitable access. For staff, major barriers included a lack of role clarity, dedicated resources (space and technology), integration of nursing and allied health, support (administrative, clinical, and technical), and guidance on appropriateness of use. CONCLUSION: Patient and staff perceptions and barriers to virtual care are different. Moving forward, we need to pay attention to both staff and patient experiences with virtual care since this will have major implications for long-term adoption into clinical practice.

Virtual Care and Electronic Patient Communication During COVID-19: Cross-sectional Study of Inequities Across a Canadian Tertiary Cancer Center.

BACKGROUND: Virtual care (VC) visits (telephone or video) and email-based patient communication have been rapidly adopted to facilitate cancer care during the COVID-19 pandemic. Inequities in access and patient experience may arise as these digital health tools become prevalent. OBJECTIVE: We aimed to characterize inequities in access and patient-reported experience following adoption of digital health tools at a tertiary cancer center during the COVID-19 pandemic. METHODS: We designed a cross-sectional study of outpatients with visits from September to December 2020. Patient characteristics and responses to an email-based patient-experience survey were collated. Inequities in access were assessed across three pairs of comparison groups: (1) patients with VC and in-person visits, (2) patients with and without documented email addresses, and (3) responders and nonresponders to the survey. Inequities in patient-reported experience were assessed among survey responders. Demographics were mapped to area-level averages from national census data. Socioeconomic status was mapped to area-level dimensions of the Canadian Index of Multiple Deprivation. Covariate balance between comparison groups was assessed using standardized mean differences (SMDs), with SMD≥0.2 indicating differences between groups. Associations between patient experience satisfaction scores and covariates were assessed using multivariable analyses, with P<.05 indicating statistical significance. RESULTS: Among the 42,194 patients who had outpatient visits, 62.65% (n=26,435) had at least one VC visit and 31.15% (n=13,144) were emailable. Access to VC and email was similar across demographic and socioeconomic indices (SMD<0.2). Among emailable patients, 21.84% (2870/13,144) responded to the survey. Survey responsiveness was similar across indices, aside from a small difference by age (SMD=0.24). Among responders, 24.4% received VC and were similar to in-person responders across indices (SMD<0.2). VC and in-person responders had similar satisfaction levels with all care domains surveyed (all P>.05). Regardless of visit type, patients had variable satisfaction with care domains across demographic and socioeconomic indices. Patients with higher ethnocultural composition scores were less satisfied with the cultural appropriateness of their care (odds ratio [OR] 0.70, 95% CI 0.57-0.86). Patients with higher situational vulnerability scores were less satisfied with discussion of physical symptoms (OR 0.67, 95% CI 0.48-0.93). Patients with higher residential instability scores were less satisfied with discussion of both physical (OR 0.81, 95% CI 0.68-0.97) and emotional (OR 0.86, 95% CI 0.77-0.96) symptoms, and also with the duration of their visit (OR 0.85, 95% CI 0.74-0.98; P=.02). Male patients were more satisfied with how their health care provider had listened to them (OR 1.64, 95% CI 1.11-2.44; P=.01). CONCLUSIONS: Adoption of VC and email can equitably maintain access and patient-reported experience in cancer care across demographics and socioeconomic indices. Existing health inequities among structurally marginalized patients must continue to be addressed to improve their care experience.

Developing an Education Pathway for Breast Cancer Patients Receiving Rapid Diagnostic Testing: Investigating Informational and Supportive Care Needs.

Several studies have examined the informational needs of patients undergoing the breast diagnostic process where needs are highest during testing and prior to receiving a diagnosis. To aid in the development of an education pathway, we identified patient information needs. A multi-method approach to identify areas of need and to understand when and how information should be provided to patients was undertaken. The methods included an environmental scan of consumer health information, ethnographic observation of the patient clinical experience, key informant interviews, and a needs assessment survey. The data collected from the environmental scan, ethnography, and interviews were used to develop the items in the survey. The survey was developed around four domains: (1) Medical Procedures and Tests, (2) Understanding the Rapid Diagnostic Process, (3) Breast Cancer and Other Breast Conditions, and (4) Support and Coping. A total of 101 patients completed the survey. Mean importance scores were significantly different between domains of information need (p < .0001) and significantly higher for the 'Medical Procedures and Tests' domain compared with all others. Multivariate analysis suggested that participants with higher levels of education (p = .02) and a preference to speak English at home (p = .009) tended to rate the importance of 'Support and Coping' information lower than other participants. Information about medical procedures and tests are most important for the patients undergoing rapid diagnostic testing in our sample. Education materials that are tailored to patient needs should be provided to patients during this stage of the cancer journey to help meet informational needs.

Evaluating the effect of a group pre-treatment chemotherapy psycho-education session for chemotherapy-naive gynecologic cancer patients and their caregivers.

OBJECTIVE: The objective was to evaluate the effects of a pre-chemotherapy education class on chemotherapy-naïve patients diagnosed with gynecologic cancer and their informal caregivers. METHODS: A prospective cohort study was conducted at a cancer centre in Toronto, Canada. All women diagnosed with gynecologic cancer, who were scheduled to receive chemotherapy treatment, and their caregivers were invited to attend the GyneChemo class, newly introduced as the centre's standard of care. Consenting attendees were asked to complete pre-and post-class survey measures assessing anxiety, self-efficacy, information needs, preparedness to begin chemotherapy treatment, and satisfaction with the class. RESULTS: Between September 2014 to September 2016, 642 individuals attended the GyneChemo class. 75 patients and 64 caregivers completed both pre- and post-class measures. Over 80% of participants agreed that the class was beneficial, specific to their needs, and administered in an appropriate setting. Significant increases in patient and caregiver self-efficacy (p < 0.001) and preparedness to begin chemotherapy treatment (p < 0.001) were found following class completion. Significant differences in patient's anxiety scores were found, with patients who reported an annual household income of <$25,000 experiencing increased anxiety (MD = +5.33) and patients reporting an income of $25,000-$75,000 reporting decreased anxiety (MD = -4.75) following class completion (p = 0.034). No significant difference in the average pre-post caregiver anxiety score (p = 0.207) was found. CONCLUSION: This educational model provides patients and informal caregivers with information specific to their chemotherapy regimen and disease site. Integrating pre-treatment education into cancer care has the potential to improve the survivorship experience by increasing self-efficacy, treatment preparedness, and psychological well-being.

Awareness of the Harms of Continued Smoking Among Cancer Survivors.

BACKGROUND: Smoking cessation is an integral part of cancer survivorship. To help improve survivorship education, clinicians need an understanding of patient awareness of the harms of continued smoking. METHODS: Cancer survivors from Princess Margaret Cancer Centre (Toronto, ON) were surveyed on their awareness of the harms of continued smoking on cancer-related outcomes. Multivariable logistic regression models assessed factors associated with awareness and whether awareness was associated with subsequent cessation among smokers at diagnosis. RESULTS: Among 1118 patients, 23% were current smokers pre-diagnosis and 54% subsequently quit; 25% had lung and 30% head and neck cancers. Many patients reported being unaware that continued smoking results in greater cancer surgical complications (53%), increased radiation side effects (62%), decreased quality of life during chemotherapy (51%), decreased chemotherapy or radiation efficacy (57%), increased risk of death (40%), and increased development of second primaries (38%). Being a current smoker was associated with greater lack of awareness of some of these smoking harms (aORs = 1.53-2.20, P < 0.001-0.02), as was exposure to any second-hand smoke (aORs = 1.45-1.53, P = 0.006-0.04) and being diagnosed with early stage cancer (aORs = 1.38-2.31, P < 0.001-0.06). Among current smokers, those with fewer pack-years, being treated for cure, or had a non-tobacco-related cancer were more likely unaware. Awareness that continued tobacco use worsen quality of life after chemotherapy was associated with subsequent cessation (aOR = 2.26, P = 0.006). CONCLUSIONS: Many cancer survivors are unaware that continued smoking can negatively impact cancer-related outcomes. The impact of educating patients about the potential harms of continued smoking when discussing treatment plans should be further evaluated.

Implementation of a Novel Electronic Patient-Directed Smoking Cessation Platform for Cancer Patients: Interrupted Time Series Analysis.

BACKGROUND: Continued smoking in cancer patients undergoing treatment results in significantly higher rates of treatment toxicities and persistent effects, increased risk of recurrence and second malignancy, and increased all-cause mortality. Despite this, routine tobacco use screening and the provision of smoking cessation treatment has yet to be implemented widely in the cancer setting. OBJECTIVE: The objective of this study was to implement and evaluate the adoption and impact of an innovative Smoking Cessation e-referral System (CEASE) to promote referrals to smoking cessation programs in cancer patients. METHODS: A patient-directed electronic smoking cessation platform (CEASE) was developed to promote smoking screening and referral and implemented at 1 of Canada's largest cancer centers. The implementation and evaluation were guided by the Ottawa Model of Research Use. An interrupted time series design was used to examine the impact of CEASE on screening rates, referrals offered, and referrals accepted compared with a previous paper-based screening program. A subsample of smokers or recent quitters was also assessed and compared pre- and postimplementation to examine the effect of CEASE on subsequent contact with smoking cessation programs and quit attempts. RESULTS: A total of 17,842 new patients attended clinics over the 20-month study period. The CEASE platform was successfully implemented across all disease sites. Screening rates increased from 44.28% (2366/5343) using the paper-based approach to 65.72% (3538/5383) using CEASE (P<.01), and referrals offered to smokers who indicated interest in quitting increased from 18.6% (58/311) to 98.8% (421/426; P<.01). Accepted referrals decreased from 41% (24/58) to 20.4% (86/421), though the overall proportion of referrals generated from total current/recent tobacco users willing to quit increased from 5.8% (24/414) to 20.2% (86/426) due to the increase in referrals offered. At 1-month postscreening, there was no significant difference in the proportion that was currently using tobacco and had not changed use in the past 4 weeks (pre: 28.9% [24/83] and post: 28.8% [83/288]). However, contact with the referral program increased from 0% to 78% in the postCEASE cohort (P<.001). CONCLUSIONS: CEASE is an innovative tool to improve smoking screening and can be implemented in both a time- and cost-effective manner which promotes sustainability. CEASE was successfully implemented across all clinics and resulted in improvements in overall screening and referral rates and engagement with referral services.

Empowering patients and caregivers with knowledge: The development of a nurse-led gynecologic oncology chemotherapy education class.

At a Canadian cancer centre, rising patient volumes made it difficult to provide quality chemotherapy education to patients and families in the clinical setting. The gynecology oncology site identified several barriers to the provision of timely and comprehensive teaching. These barriers included receiving education after learning of a cancer diagnosis, the efficacy of written information, time constraints nurses experienced, and absence of standardized side effect management. This prompted an interdisciplinary team to review current teaching practices and engage the Patient Education Program to collaboratively develop strategies to overcome these challenges. This paper describes the development of a nurse-led chemotherapy education class tailored to patients with gynecologic cancers and focused on common chemotherapy treatment protocols. The purpose of the class was to help patients and caregivers know what to expect during their chemotherapy routine, lower anxiety, and to equip them with knowledge and skills to manage side effects of treatment.

Informational Needs of Head and Neck Cancer Patients.

The patient journey with head and neck cancer (HNC) is particularly challenging given the physical and functional impact of the cancer and treatment. The ability to perform activities of daily living can be severely compromised and have a profound impact on psychosocial well-being. These complex and long-lasting effects can affect patient quality of life for months to years and the literature shows that information for HNC patients is often insufficient. This observational cross-sectional study utilized survey methodology to investigate the informational needs of HNC patients and the preferred modalities for delivery. This was done to inform the development of resources for HNC patients. Four hundred fifty surveys were analyzed. The median age was 61 years and 58% of the cohort was born in Canada. Most were Caucasian (72%), Chinese being the next largest ethnicity (12%). A third had less than high school education and most had cancer of the oral cavity (28%) and were in long-term follow-up (41%). Comparison of the percentage of items to which a patient responded "very important" across the six domains shows variation of importance by domain (overall mixed effects regression model p < 0.0001). Additionally, each domain was compared to the medical domain and all had significantly lower mean scores (all p < 0.0001) with the medical domain scoring highest (mean score 64.6). The top preferred education modalities were teaching with a healthcare professional and pamphlets. This study highlights the type of information that HNC patients want and the format they wish to receive it in. The design provides a comprehensive way to consult with patients toward building education that responds to their specific needs.

Preferences for the Provision of Smoking Cessation Education Among Cancer Patients.

Many individuals who use tobacco will continue to smoke after a cancer diagnosis and throughout treatment. This study aims to better understand cancer patient preferences to learn about smoking cessation. All new patients seen at Princess Margaret Cancer Centre between 1 January 2014 and 30 June 2015 were asked to complete the Combined Tobacco History Survey as part of standard new patient assessments. Smoking status, second hand smoke exposure, years smoked, family support, cessation preferences, demographic and tumour details were collected. Multivariable regression assessed factors associated with smoking cessation educational preferences. Nine thousand and one hundred ten patients completed the survey. One thousand and six hundred ninety-one were current smokers (17 %) of which 43 % were female and median age was 57 years (range 18-95). One thousand and two hundred thirty-eight (73 %) were willing to consider quitting and 953 (56 %) reported a readiness to quit next month. Patients were most interested in pamphlets (45 %) followed by telephone support (39 %), speaking with a healthcare professional (29 %), website (15 %), support group (11 %) and speaking with successful former smokers (9 %). Younger patients (≤45 years) preferred receiving smoking cessation education over the telephone (50 %; p < 0.001), while older patients (46-65 years and >65 years) preferred smoking education to be provided in pamphlets (43 and 51 %, respectively; p = 0.07). In multivariable analyses, older patients were more likely to prefer pamphlets than younger patients OR 1.11 (95 % CI 1.01-1.23; p = 0.03). Older cancer patients preferred to receive smoking cessation education through pamphlets and younger patients preferred the telephone. Tailored provision of cessation education resources for cancer patients is warranted.

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.

Development and Evaluation of Patient Education Materials for Elderly Lung Cancer Patients.

Patients treated for lung cancer are often elderly presenting a unique challenge for developing patient education materials. This study developed and evaluated a patient education pamphlet on lung stereotactic body radiotherapy (SBRT) designed specifically for an elderly population. The SBRT pamphlet was developed using a participatory design involving a convenience sample of patients. This prospective study assessed patient's opinions of pamphlet effectiveness through self-report questionnaires. The pamphlet was deemed "effective" if patients rated 16/18 evaluation statements as "strongly agree" or "agree." Demographic data and health literacy (Rapid Estimate of Adult Literacy in Medicine short-form (REALM-SF)) were also assessed. Patient opinion of pamphlet "effectiveness" was compared between patients with REALM-SF scores of 7 versus <7 using Fisher's exact test. The overall EQ-5D-5L score was compared for patients who did and did not find the pamphlet effective using the Wilcoxon-Mann-Whitney test. Thirty-seven patients participated. The median age was 76 years (range 56-93) and 22 patients (59 %) had ≤high school education. Most patients preferred to have verbal (65 %) or written (78 %) educational materials as opposed to online information or educational classes. Thirty-two patients (86 %) rated the pamphlet as effective. The proportion of patients who found the pamphlet effective was 85.7 versus 86.7 % (p = 1.00) in those with REALM 7 versus <7. The mean EQ-5D score was 67.5 (SD 19.1) versus 71.8 (SD 8.7) (p = 0.84) in those who found the pamphlet effective versus not. Participatory design is an effective method for developing education materials for challenging patient groups such as elderly patients. Despite advanced age and comorbidity, this patient group had adequate health literacy.

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.

Evaluation of the Effects of Pre-Treatment Education on Self-Efficacy and Anxiety in Patients Receiving Radiation Therapy: A Pilot Study.

INTRODUCTION: Patients receiving radiation therapy for cancer treatment have been reported to experience increased anxiety before starting therapy and often have diminished feelings of control. An evaluation was done to measure the impact of an educational class that was designed to lower patient and family anxiety and to help them know what to expect before starting radiation therapy. METHODS: A single-centre, cross-sectional study was conducted from January to March 2011 at an ambulatory radiation therapy clinic. The study used the Cancer Behavior Inventory Brief (CBI-B) and State-Trait Anxiety Inventory-State (STAI-S) to investigate the effect of the class on the participant's perceived self-efficacy and anxiety, respectively. Participant demographics and an evaluation of the course content and the teaching skills of the facilitators were collected. RESULTS: Twenty-four responses were analyzed. Although the course was designed for those starting treatment, 11 participants had already begun. The majority of participants were non-immigrant patients with high socioeconomic status. Patient self-efficacy scores increased significantly P ≤ .001 and anxiety scores decreased significantly P ≤ .001 after completion of the pre-treatment class. Overall, participants rated the content and delivery of the class highly. CONCLUSION: This study has shown that pre-treatment education may reduce anxiety and increase self-efficacy in patients starting and those already receiving radiation therapy. This information may provide support for the delivery of pre-treatment patient education in ambulatory radiotherapy clinics.

Risk messages about HPV, cervical cancer, and the HPV vaccine gardasil in North American news magazines.

The human papillomavirus (HPV) vaccine (Gardasil) is a significant advancement in reducing women's risk for cervical cancer. Public opinion of the vaccine can be influenced by the mass media. We used content analysis to assess the discussion of risks, fear-inducing messages about HPV, cervical cancer, and the HPV vaccine in four high circulating North American news magazines from January 2006 to December 2007. Risk messages about HPV and cervical cancer focused on threatening illness or injury. Reporting on the HPV vaccine emphasized it being poorly understood by science. News magazine articles on the HPV vaccine and cervical cancer included fear-inducing messages. Cancer educators need to be aware of media reporting in order to alleviate fears that the public may experience about the HPV vaccine.

Risk messages about HPV, cervical cancer, and the HPV vaccine Gardasil: a content analysis of Canadian and U.S. national newspaper articles.

The human papillomavirus vaccine (Gardasil) is a significant advancement in women's health. We compared the reporting of fear-inducing messages about human papillomavirus, cervical cancer, and the human papillomavirus vaccine in Canadian and U.S. national newspapers between January 2006 and December 2007. Significant differences between countries were found in the number of articles containing fear messages about human papillomavirus, cervical cancer, and the human papillomavirus vaccine. Educational level of readability was higher than recommended for the public, and the emotional tone of the articles became progressively negative over time. Our findings suggest that public discussion of some elements of the human papillomavirus vaccine message that could cause alarm or worry for women may need to be addressed within political and cultural contexts.