A quality improvement project to optimize access to psychosocial care for cancer survivors who experience fear of recurrence.

BACKGROUND: The prevalence of moderate to high levels of fear of cancer recurrence (FCR) in cancer survivors may vary from 22% to 87%, although most are not usually referred to psychosocial support. The After Cancer Treatment Transition (ACTT) clinic in Women's College Hospital (Toronto) provides follow-up care to cancer survivors but in a sample of 2893 patients seen April 2019 to March 2022, only 1.5% were referred to a social worker for psychosocial needs. A single-question screening tool is currently available to screen for FCR. OBJECTIVE: To evaluate the use of the single-question screening tool for FCR among cancer survivors and its impact on social work referrals. RESULTS: Between July and October 2022, 788 patients were seen in the ACTT clinic. Generally, most patients in ACTT are breast cancer survivors (75%), and the remaining survivors are a mix of other cancer types (colorectal cancer, ovarian cancer, thyroid cancer, melanoma). Three hundred thirty (41.9%) ACTT patients completed the single-question screening tool for FCR. Most screened patients were female (96%), the average age was 60 years, and most were diagnosed with breast cancer (90%). Among screened patients, 37 (11%) indicated a moderately severe to high level of FCR and efforts were made to refer these 37 patients to a social worker. In the end, 22 (59.5%) patients with moderately severe/high levels of FCR were offered and accepted referral to a social worker. In comparison to the 1.5% referred to social work (among 2893 patients) prior to FCR screening, referrals increased to 6.7% (among 330 screened). CONCLUSION: Use of a single-question FCR screening tool improved identifying cancer survivors in need of psychosocial support and improved access to a social worker.

The development and implementation of the After Cancer Treatment Transition (ACTT) Program for survivors of cancer.

Background: The After Cancer Treatment Transition (ACTT) program at Women's College Hospital (Toronto) is a transitional follow-up program for patients, their families, and healthcare providers to address the broad range of post-cancer treatment and survivorship needs. This publication describes the systematic development and implementation of the ACTT program, with a focus on the advanced practice nursing (APN) role. Program Development: ACTT development required the collaboration of an APN, a general practitioner in oncology (GPO), and an inter-professional team. ACTT developers proposed a clinic structure in an ambulatory setting, linking healthcare professionals to provide post-treatment follow-up and ongoing survivorship care. Post-treatment guidelines were developed based on expert oncologist consensus, cancer site group input, and evidence-informed guidelines or best practice recommendations. Program Implementation: Initial challenges and concerns were rooted in the requirements that post-cancer treatment care was maintained and survivor needs were addressed. Cancer site groups and the inter-professional teams provided continuous feedback on processes and protocols. ACTT established a standard approach to transition patients safely and effectively out of tertiary care and, ultimately, to primary care. Current ACTT Program: ACTT delivers comprehensive posttreatment and survivorship care through close collaboration between the GPO and APN. Both roles specialize in managing late or persistent effects, cancer surveillance and prevention, and addressing psychosocial needs prior to discharge to primary care. The survivorship care plan provided by ACTT is an informative tool for both patient and primary care provider to continue post-treatment follow-ups. Future Directions: Next steps for ACTT include expanding to other cancer specialties, exploring new ways to deliver care, optimizing the transition of care, and conducting comprehensive evaluations of patient reported outcomes.

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.

Protocol of a randomized controlled trial of the fear of recurrence therapy (FORT) intervention for women with breast or gynecological cancer.

BACKGROUND: Clinically significant levels of fear of cancer recurrence (FCR) affect up to 49% of cancer survivors and are more prevalent among women. FCR is associated with psychological distress, lower quality of life, and increased use of medical resources. Despite its prevalence, FCR is poorly addressed in clinical care. To address this problem, we first developed, and pilot tested a 6-week, 2 h, Cognitive-existential group intervention therapy that targeted FCR in survivors of breast or gynecological cancer. Following the positive outcome of the pilot, we are now testing this approach in a randomized clinical trial (RCT). Goal and hypotheses: This multicenter, prospective RCT aims to test the efficacy of the intervention. The study hypotheses are that, compared to a control group, cancer survivors participating in the intervention (1) will have less FCR, (2) will show more favorable outcomes on the following measures: cancer-specific distress, quality of life, illness uncertainty, intolerance of uncertainty, perceived risk of cancer recurrence, and coping skills. We further postulate that the between-group differences will persist three and 6 months post-intervention. METHODS: Sixteen groups of seven to nine women are being allocated to the intervention or the control group. The control group receives a 6-week, 2 h, structurally equivalent support group. We are recruiting 144 cancer survivors from four hospital sites in three Canadian cities. The sample size was based on the moderate pre/post-test changes found in our pilot study and adjusted to the drop-out rates. MEASUREMENTS: The primary outcome, FCR, is measured by the Fear of Cancer Recurrence Inventory. Secondary outcomes measured include cancer-specific distress, perceived risk of cancer recurrence, illness uncertainty, intolerance of uncertainty, coping, and quality of life. We use reliable and recognized valid scales. Participants are to complete the questionnaire package at four times: before the first group session (baseline), immediately after the sixth session, and 3 and 6 months post-intervention. ANALYSIS: In the descriptive analysis, comparison of group equivalent baseline variables, identification of confounding/intermediate variables and univariate analysis are planned. Each participant's trajectory is calculated using Generalized Estimating Equation models to determine the time and group effects, after considering the correlation structures of the groups. An intent-to-treat analysis approach may be adopted. DISCUSSION: Our Fear of Recurrence Therapy (FORT) intervention has direct implications for clinical service development to improve the quality of life for patients with breast (BC) and gynecological cancer (GC). Based on our pilot data, we are confident that the FORT intervention can guide the development of effective psychosocial cancer survivorship interventions to reduce FCR and improve psychological functioning among women with BC or GC. TRIAL REGISTRATION: Dr. Christine Maheu registered the trial with ISRCTN registry (Registration number: ISRCTN83539618, date assigned 03/09/2014).

Pilot Testing of a Psycho-educational Telephone Intervention for Women Receiving Uninformative BRCA1/2 Genetic Test Results.

Evidence suggests that women who receive uninformative results for breast and ovarian cancer (BRCA1/2) gene mutations may experience as much distress as women whose results indicate the presence of a gene mutation. No intervention to reduce distress after receipt of uninformative results has yet been tested. The purpose of this study was to test the feasibility and preliminary effects of a psycho-educational telephone (PET) intervention to reduce distress in women who receive uninformative BRCA1/2 results. A single group with repeated measures was used to assess the impact of the intervention on 72 such women. After receiving the results, most of the women continued to feel uncertain about their carrier genetic status. However, their distress significantly decreased between receipt of uninformative results and 3 months post-intervention (p = 0.01). The preliminary findings suggest that a PET uncertainty intervention is clinically feasible and may reduce the distress of receiving uninformative results.

Les données permettent de croire que les femmes qui obtiennent des résultats non concluants à la suite de tests de dépistage d'une mutation des gènes liés aux cancers du sein et des ovaires (BRCA1 et BRCA2) sont susceptibles d'éprouver une détresse aussi importante que celles dont les résultats indiquent la présence d'une mutation génétique. Aucune intervention visant à atténuer le sentiment de détresse après réception de résultats non concluants n'a encore été mise à l'essai. L'objectif de la présente étude est d'évaluer la faisabilité et les effets préliminaires d'une intervention consistant en un appel psycho-éducatif destiné à réduire la détresse de femmes ayant reçu des résultats de dépistage génétique non concluants concernant les gènes BRCA1 et BRCA2. Un groupe unique sondé à plusieurs reprises a été étudié afin d'évaluer l'effet d'une telle intervention sur 72 femmes. Après la réception de leurs résultats, la plupart éprouvaient toujours de l'incertitude concernant leur statut de porteuse ou non d'une mutation génétique. Toutefois, une diminution considérable de leur détresse a été observée entre la réception des résultats non concluants et une période de trois mois après l'intervention par téléphone (p = 0,01). Les constatations préliminaires donnent à penser qu'une intervention psycho-éducative par téléphone à propos de l'incertitude est réalisable et permet de réduire la détresse des femmes dont les résultats sont non concluants.

Addressing fear of cancer recurrence among women with cancer: a feasibility and preliminary outcome study.

BACKGROUND: Evidence suggests that fear of cancer recurrence (FCR) is one of the most frequently cited unmet needs among cancer survivors and is associated with psychological distress, stress-response symptoms, and lower quality of life, as well as increased use of health care resources. Despite these factors, few manualized interventions exist to address FCR among cancer survivors. PURPOSE: To develop, manualize, and pilot test the feasibility and preliminary efficacy of a 6-week cognitive-existential (CE) group intervention designed to address FCR in women with breast or ovarian cancer. METHODS: This study was a single-arm multi-site study with pre-, post-, and 3-month follow-up measurement occasions. RESULTS: A total of 56 breast or ovarian cancer survivors enrolled in the study; 44 completed the CE group intervention. Following the intervention, women experienced a reduction in the primary study outcome measure of FCR and secondary study outcome measures of cancer-specific distress and uncertainty. They also reported improvements in secondary study outcome measures of quality of life and coping. The effect sizes of the observed changes were for the most part in the medium to large effect range; furthermore, almost all changes were sustained at 3-month follow-up. CONCLUSION: This brief intervention appears feasible and has shown promising results in addressing FCR and related secondary outcomes of cancer-specific distress, uncertainty, quality of life, and coping; however, it should be further tested using a randomized controlled study design to more definitively assess its efficacy. IMPLICATIONS FOR CANCER SURVIVORS: FCR is a near-universal worry for cancer survivors that, when left unaddressed, tends to remain stable over time. This study has important implications for all cancer survivors as it is the first published intervention that provides preliminary evidence of its efficacy in decreasing fear of cancer recurrence.