Patient experiences with patient-led, home-based follow-up after curative treatment for colorectal cancer: a qualitative study.

OBJECTIVES: The number of patients with colorectal cancer (CRC) in need of oncological follow-up is growing. As a response, patient-led, home-based follow-up (PHFU) was developed, implemented and assessed. The aim of this study was to investigate how patients experienced PHFU. DESIGN: A qualitative study with individual semistructured interviews. Interviews were transcribed verbatim, and thematically analysed through an inductive, double-coding approach. SETTING: A university medical centre in the Netherlands. PARTICIPANTS: 12 curatively treated patients with CRC who received PHFU were included after purposive sampling. RESULTS: Overall, participants (N=12) were satisfied with PHFU. The time and cost-saving aspects for patient and hospital were evidently valued. PHFU was experienced as a shared effort, but patients felt like the primary responsibility remained in the hospital. Patients mentioned a decreased personal interaction with their healthcare provider (HCP) and felt a higher threshold to ask for help. However, all major questions were still addressed. Patients felt sufficiently competent to interpret their individual test results but experienced difficulty in interpreting repeated increases in carcinoembryonic antigen levels within the normal range. Educational status, age and a complicated disease course were seen as factors limiting the applicability of PHFU, and it was expressed that PHFU should be offered as an alternative instead of a novel standard of care. CONCLUSIONS: According to patients, PHFU has great potential. However, PHFU may not be suitable for every CRC patient, and factors such as educational status, age and disease course should be taken into consideration. Patient and HCP have a shared responsibility to help successfully organise PHFU in practice.

Toward implementation of an evidence-based intervention for fear of cancer recurrence: Feasibility in real-world psycho-oncology practice.

OBJECTIVE: Few evidence-based interventions addressing high levels of fear of cancer recurrence (FCR) have been implemented. Understanding how these might be implemented is crucial to bridge the research-practice gap. This study investigated the feasibility of implementing the blended Survivors' Worries of Recurrent Disease (SWORD) intervention in real-world psycho-oncology practice. METHODS: SWORD was offered for 15 months (2021-2022) as the standard care for clinical FCR in a university hospital, a general hospital, and psycho-oncological center. We evaluated using a mixed-methods design six feasibility outcomes based on Bowen's framework: demand, limited effectiveness, degree of execution, acceptability, practicality, and integration. Anonymous data were collected for all oncology patients on referral. Study participants completed questionnaires before and after treatment, including the Cancer Worry Scale (CWS-6) as the primary measure of effectiveness. Qualitative data included interviews with patients and psychologists, and field notes. RESULTS: Regarding demand, 81 of 644 patients referred (13%) were eligible for SWORD. The uptake of SWORD was 79% (n = 63/80) and the completion rate 73% (n = 46/63). SWORD was effective in reducing FCR (p < 0.001, ηp2  = 0.694). Regarding execution, a variability in the length, planning and number of treatment sessions was found between different settings. Adherence to the treatment manual's content was high (89%). Regarding acceptability, most patients were satisfied with SWORD (average 8.2/10) and psychologists valued the blended format. Psychologists reported SWORD was practical to deliver given their knowledge and skills. Although differences between settings were found, SWORD integrated well into practice. Referral for FCR and a reluctance to contract new eHealth providers were barriers for implementation. CONCLUSIONS: Despite differences between healthcare settings, the implementation of SWORD was evaluated well. The feasibility of SWORD in different settings should inform a national implementation strategy.

Evaluating the capacity of the distress thermometer to detect high fear of cancer recurrence.

OBJECTIVES: Fear of cancer recurrence (FCR) is common and burdensome to patients, but often remains undetected. Oncology professionals report need for tools to improve FCR detection in routine care. Oncology care guidelines recommend the Distress Thermometer (DT) for distress screening, but it has not been validated for FCR. This study evaluated the capacity of the DT and accompanying problem list to detect FCR. METHODS: Amalgamated data of two studies with 149 breast cancer and 74 colorectal cancer survivors were used. We evaluated the Dutch DT including the DT score, problem list fears item and emotional domain score using Receiver Operating Characteristic analyses. The Dutch Cancer Worry Scale-6 (CWS-6) was used as reference measure, with validated cut-off scores ≥10 and ≥12 for high FCR. Sensitivity, specificity, negative and positive predictive values were calculated. RESULTS: The DT score showed poor performance in discriminating between low and high FCR. The recommended cut-off ≥4 had low sensitivity (65% for CWS-6≥10; 72% for CWS-6 ≥12) and specificity (67% and 58%). No other cut-off had an acceptable combination of sensitivity and specificity. The fears item had low sensitivity (29% and 44.9%) and high specificity (95% and 94%). The emotional domain score had fair performance in discriminating between low and high FCR but there was no cut-off with acceptable sensitivity and specificity. CONCLUSION: The DT as currently recommended in oncology care guidelines is not suitable to effectively detect FCR in routine care. To improve patients access to psychosocial care, it should be investigated how FCR-specific measures can be integrated in oncology practice.

Barriers and facilitators for implementation of the SWORD evidence-based psychological intervention for fear of cancer recurrence in three different healthcare settings.

PURPOSE: Fear of cancer recurrence (FCR) interventions are effective, but few are implemented. This study aimed to identify barriers and facilitators for implementing the evidence-based blended SWORD intervention in routine psycho-oncological care. METHODS: Semi-structured interviews with 19 cancer survivors and 18 professionals from three healthcare settings assessed barriers and facilitators in six domains as described by the determinant frameworks of Grol and Flottorp: (1) innovation, (2) professionals, (3) patients, (4) social context, (5) organization, and (6) economic and political context. RESULTS: In the innovation domain, there were few barriers. Facilitators included high reliability, accessibility, and relevance of SWORD. In the professional domain, physicians and nurses barriers were lack of self-efficacy, knowledge, and skills to address FCR whereas psychologists had sufficient knowledge and skills, but some were critical towards protocolized treatments, cognitive behavioral therapy, or eHealth. Patient domain barriers included lack of FCR awareness, negative expectations of psychotherapy, and unwillingness/inability to actively engage in treatment. A social context domain barrier was poor communication between different healthcare professionals. Organization domain barriers included inadequate referral structures to psychological services, limited capacity, and complex legal procedures. Economic and political context domain barriers included lack of a national implementation structure for evidence-based psycho-oncological interventions and eHealth platform costs. CONCLUSIONS: Implementation strategies should be targeted at patient, professional, organizational and economic and political domains. Identified barriers and facilitators are relevant to other researchers in psycho-oncology that aim to bridge the research-practice gap. IMPLICATIONS FOR CANCER SURVIVORS: This study contributes to the implementation of evidence-based psychological interventions for cancer survivors, who can benefit from these services.

Psychosocial Aspects of Living Long Term with Advanced Cancer and Ongoing Systemic Treatment: A Scoping Review.

(1) Background: Studies examining the psychosocial impact of living long term on systemic treatment in advanced cancer patients are scarce. This scoping review aimed to answer the research question "What has been reported about psychosocial factors among patients living with advanced cancer receiving life-long systemic treatment?", by synthesizing psychosocial data, and evaluating the terminology used to address these patients; (2) Methods: This scoping review was conducted following the five stages of the framework of Arksey and O'Malley (2005); (3) Results: 141 articles published between 2000 and 2021 (69% after 2015) were included. A large variety of terms referring to the patient group was observed. Synthesizing qualitative studies identified ongoing uncertainty, anxiety and fear of disease progression or death, hope in treatment results and new treatment options, loss in several aspects of life, and worries about the impact of disease on loved ones and changes in social life to be prominent psychosocial themes. Of 82 quantitative studies included in the review, 76% examined quality of life, 46% fear of disease progression or death, 26% distress or depression, and 4% hope, while few studies reported on adaptation or cognitive aspects. No quantitative studies focused on uncertainty, loss, or social impact; (4) Conclusion and clinical implications: Prominent psychosocial themes reported in qualitative studies were not included in quantitative research using specific validated questionnaires. More robust studies using quantitative research designs should be conducted to further understand these psychological constructs. Furthermore, the diversity of terminology found in the literature calls for a uniform definition to better address this specific patient group in research and in practice.

Interventions addressing fear of cancer recurrence: challenges and future perspectives.

PURPOSE OF REVIEW: Fear of cancer recurrence (FCR) is a common concern among cancer survivors and support for FCR is one of the most cited unmet needs. High FCR was found to be related to increased use of healthcare services, specifically primary healthcare and medical consultations, and lower quality of life. In the past decade screening instruments for FCR and interventions have been developed and proven effective. RECENT FINDINGS: Systematic reviews and meta-analyses have shown that psychological treatments are effective for reducing FCR. The cost-effectiveness of FCR interventions could be increased by considering stepped or matched models for supportive care. Despite availability of evidence-based interventions, the proposed care models are not implemented and most cancer survivors still do not benefit from supportive care. SUMMARY: The time is right to focus on implementation of FCR interventions into clinical practice. The complexity of optimizing FCR care is characterized by barriers and facilitators in the domains of patients, healthcare professionals, healthcare organizations and the broader economic, and political context. The main challenge for future research is to address these issues so that former investments in high-quality FCR intervention research will pay out in actual practice changes in the benefit of cancer survivors.

Prospective longitudinal study on fear of cancer recurrence in patients newly diagnosed with head and neck cancer: Course, trajectories, and associated factors.

BACKGROUND: This study assessed the course of fear of cancer recurrence (FCR) in patients newly diagnosed with head and neck cancer (HNC), identified FCR trajectories and factors associated with FCR trajectories. METHODS: Six hundred and seventeen HNC patients from the NET-QUBIC cohort study completed the Cancer Worry Scale-6 at diagnosis, 3 and 6 months post-treatment. FCR trajectories were identified using Latent Class Growth Analysis. Associations were explored between FCR trajectories and baseline demographic and medical variables, coping and self-efficacy. RESULTS: Overall, FCR decreased slightly between baseline and 3 months post-treatment and remained stable up to 6 months. Two FCR trajectories were identified: "high stable" (n = 125) and "low declining" (n = 492). Patients with high stable FCR were younger, reported more negative adjustment, passive coping, and reassuring thoughts, and less avoidance. CONCLUSIONS: The majority of HNC patients have low declining FCR after diagnosis, but one in five patients experience persistent high FCR up to 6 months post-treatment.

Psychological aspects in patients with advanced cancer receiving lifelong systemic treatment: protocol for a scoping review.

INTRODUCTION: A better understanding of the molecular, genetic and immunological characteristics of cancer and the introduction of new systemic treatment regimens in the last decades, has led to better treatment outcomes and increased survival rates for patients with previously short lived cancers. However, there is no uniform description to refer to this growing group of patients with advanced cancer who now respond to new systemic treatments for longer periods. Furthermore, little is known about the unique psychological challenges these patients face, living with ongoing uncertainty about the course of their disease and life expectancy. The objective of this scoping review is to identify the psychological aspects experienced by, and the definitions used to refer to patients with advanced cancer receiving lifelong systemic treatment. METHODS AND ANALYSIS: This review will be among the first to summarise literature on the psychological issues in the growing group of advanced cancer patients undergoing long-term systemic treatment. Articles will be retrieved from six databases (MEDLINE, Embase, Web of Science, PsycINFO, CINAHL and the Cochrane Database of Systematic Reviews) and reviewed for eligibility by two investigators independently. Definitions and psychological challenges will be extracted and narratively summarised following a descriptive approach. Furthermore, results will contribute in providing a uniform definition for this patient group, and help to identify knowledge gaps to give direction to further research in this field. ETHICS AND DISSEMINATION: No ethical approval is required. The results of the scoping review will be submitted for publication to a scientific journal and presented at relevant conferences.