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Research indicates that fear of progression (FoP) may be a transdiagnostic construct underlying anxiety in people with chronic health conditions. Theories propose that the interpretation of illness-related symptoms (such as pain) might be an important mechanism driving the development of FoP. However, FoP has rarely been studied in diabetes. In this study, we assessed FoP, pain, health threat-related interpretation bias, emotional states, and treatment adherence in 198 participants with type 1 or type 2 diabetes and an age- and gender-matched control group. We hypothesized that 1) people with diabetes will be more likely to interpret ambiguous stimuli as health threat-related than people without diabetes; 2) among those with diabetes, pain severity and interpretation bias will be associated with more severe levels of FoP; and 3) interpretation bias will moderate the relationship between pain severity and FoP in people with diabetes, such that the positive association between pain and FoP will become stronger when people have greater interpretation bias. Our results confirmed that people with diabetes were more likely to interpret ambiguous information as health threat-related compared with people without diabetes, with a large effect (d = .84). Moreover, people with diabetes who reported persistent pain were more likely to interpret ambiguous stimuli as health threat-related (d = .49). Among people with diabetes, pain severity and interpretation bias were significantly associated with FoP. However, we did not find evidence that interpretation bias moderated the relationship between pain and FoP and these relationships could not be accounted for by general psychopathology. PERSPECTIVE: People with diabetes had greater health threat-related interpretation bias than people without diabetes, especially for those with persistent pain and more severe FoP. Both pain severity and interpretation bias were associated with greater FoP, but interpretation bias did not moderate the relationship between pain and FoP.
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PURPOSE: The number of cancer survivors living with and beyond cancer treatment is rising globally. It is fundamental to understand the extent and type of psychosocial care services offered worldwide. We evaluated models of cancer survivorship care, psychosocial care practices in the post-treatment survivorship phase, and barriers/facilitators to delivery of psychosocial care services, including in low- and middle-income countries (LMICs). METHODS: The International Psycho-Oncology Society (IPOS) Survivorship Special Interest Group led a cross-sectional online survey between March and November 2022. Health care professionals and researchers in psycho-oncology were invited through the IPOS global membership, social media, and snowballing. The survey was administered to individuals but included questions related to practices in their country at a national level. RESULTS: Two hundred eighty-three respondents from 37 countries participated (40% from LMICs), with a median of 12 years of experience (IQR, 6-20) in the psycho-oncology field. Participants reported that the most common elements of routine survivorship care were related to the prevention/management of recurrences/new cancers (74%), physical late effects (59%), and chronic medical conditions (53%), whereas surveillance/management of psychosocial late effects (27%) and psychosocial/supportive care (25%) were least common. Service availability was more commonly reported in high-income countries (HICs) than LMICs related to reproductive health (29% v 17%), genetic counseling/support (40% v 20%), and identifying/managing distress (39% v 26%) and pain (66% v 48%). Key barriers included providers focusing on treatment not survivorship (57%), medical not psychosocial care (60%), and a lack of allied health providers to deliver psychosocial care (59%). CONCLUSION: The psychosocial needs of people living with cancer are not adequately available and/or provided in post-treatment survivorship even in HICs, because of barriers at patient, provider, and system levels.
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Supervivientes de Cáncer , Países en Desarrollo , Humanos , Supervivientes de Cáncer/psicología , Supervivientes de Cáncer/estadística & datos numéricos , Estudios Transversales , Encuestas y Cuestionarios , Neoplasias/psicología , Neoplasias/terapia , Países Desarrollados , Masculino , Accesibilidad a los Servicios de Salud/estadística & datos numéricos , Femenino , Psicooncología , SupervivenciaRESUMEN
BACKGROUND: Implementation strategies are crucial to facilitate implementation success. To prepare and support implementation of a clinical pathway for screening, assessment and management of anxiety and depression in cancer patients (the ADAPT CP), six broad categories of implementation strategies; (1) Awareness campaigns, (2) Champions, (3) Education, (4) Academic Detailing and Support, (5) Reporting, (6) Technological Support, were developed. The aim of this paper is to describe the fidelity and acceptability of six categories of implementation strategies and any subsequent changes/adaptations made to those strategies. METHODS: The ADAPT CP was implemented in twelve cancer services in NSW, Australia, as part of a cluster randomised controlled trial of core versus enhanced implementation strategies. Fidelity to and any subsequent changes to the delivery of the planned six categories of implementation strategies were captured using the ADAPT contact log, which recorded the contacts made between the ADAPT research team and services, engagement meetings and monthly meetings. To explore acceptability and awareness/engagement with the implementation strategies, interviews with a purposively selected staff sample across both study arms were held prior to implementation (T0), six months into implementation (T1) and at the end of the 12-month implementation period (T2). Interviews were thematically analysed across the six categories of strategies. RESULTS: Delivery of all six categories of implementation strategies as planned was moderated by service context and resources and staff engagement. As such, for some implementation strategies, subsequent changes or adaptations to the content, mode of delivery, frequency and duration such as abbreviated training sessions, were made to optimise fidelity to and engagement with the strategies. Most strategies were perceived to be acceptable by service staff. Use of strategies prior to implementation of the ADAPT CP such as the engagement meetings and training sessions, positively impacted on ownership and preparedness to implement the ADAPT CP. Furthermore, ongoing support such as provision of additional training or monthly meetings facilitated increased awareness and engagement with the ADAPT program. CONCLUSION: Flexibility in delivering implementation strategies, and ensuring staff engagement with, and acceptability of those strategies, can support implementation of interventions within healthcare settings. TRIAL REGISTRATION: The ADAPT CRCT was registered prospectively with the ANZCTR on 22/3/2017. Trial ID ACTRN12617000411347. https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=372486&isReview=true.
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BACKGROUND: We aimed to define levels of unmet supportive care needs in people with primary brain tumor and to reach expert consensus on feasibility of addressing patients' needs in clinical practice. METHODS: We conducted secondary analysis of a prospective cohort study of people diagnosed with high-grade glioma (n = 116) who completed the Supportive Care Needs Survey-Short Form during adjuvant chemoradiation therapy. Participants were allocated to 1 of 3 categories: no need ("no need" for help on all items), low need ("low need" for help on at least 1 item, but no "moderate" or "high" need), or moderate/high need (at least 1 "moderate" or "high" need indicated). Clinical capacity to respond to the proportion of patients needing to be prioritized was assessed. RESULTS: Overall, 13% (n = 5) were categorized as no need, 23% (n = 27) low need, and 64% (n = 74) moderate/high need. At least 1 moderate/high need was reported in the physical and daily living domain (42%) and the psychological (34%) domain. In recognition of health system capacity, the moderate/high need category was modified to distinguish between moderate need ("moderate" need indicated for at least 1 item but "high" need was not selected for any item) and high need (at least 1 "high" need indicated). Results revealed 24% (n = 28) moderate need and 40% (n = 46) high need. Those categorized as high need indicated needing assistance navigating the health system and information. CONCLUSIONS: Using four step allocations resulted in 40% of patients indicating high need. Categories may facilitate appropriate triaging and guide stepped models of healthcare delivery.
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Neoplasias Encefálicas , Glioma , Necesidades y Demandas de Servicios de Salud , Evaluación de Necesidades , Humanos , Glioma/terapia , Neoplasias Encefálicas/terapia , Neoplasias Encefálicas/psicología , Femenino , Masculino , Persona de Mediana Edad , Estudios Prospectivos , Anciano , Adulto , Quimioradioterapia Adyuvante , Actividades Cotidianas , Estudios de Factibilidad , Encuestas y CuestionariosRESUMEN
OBJECTIVES: Fear of cancer recurring or progressing (FCR) is a concern reported by people living with cancer and caregivers alike. Whilst advances in survivor FCR have been made, less is known about caregiver FCR. As a result, measurement of caregiver FCR has relied on instruments developed for survivor populations. Findings from qualitative research indicate caregiver experiences of FCR differ. This study aimed to develop and evaluate the psychometric properties of a caregiver specific measure of FCR (CARE-FCR). METHODS: Four-hundred and thirty-eight caregivers (56% female, Mage = 50.53 years, SD = 17.38) completed the online survey including demographic questions, information about care provided, the person they care for, as well as the CARE-FCR. Convergent validity was assessed using pre-existing measures of fear of recurrence and progression, depression, anxiety, death anxiety and meta-cognitions. The extraversion dimension of the Big Five Personality Trait questionnaire was used to assess divergent validity. The survey was completed 2 weeks later to assess test-retest reliability. Exploratory factor analysis (EFA) was used to determine factor structure, followed by confirmatory factor analysis. RESULTS: EFA indicated a 3-factor structure: progression, recurrence, and communication. Evidence for convergent, divergent, and test-retest reliability was adequate. Internal consistency for the CARE-FCR was strong, overall Cronbach's α = 0.96 (progression = 0.94, recurrence = 0.92 and communication = 0.78). CONCLUSIONS: We present a theoretically informed and psychometrically robust measure of caregiver FCR. The CARE-FCR facilitates quantification of caregiver FCR, capturing unique aspects specific to this population.
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Cuidadores , Neoplasias , Humanos , Femenino , Persona de Mediana Edad , Masculino , Reproducibilidad de los Resultados , Miedo , Recurrencia , Neoplasias/terapia , Encuestas y Cuestionarios , Recurrencia Local de NeoplasiaRESUMEN
BACKGROUND: Adolescents and young adults (AYAs) diagnosed with cancer experience physical, cognitive, and psychosocial effects from cancer treatment that can negatively affect their ability to remain engaged in education or work through cancer treatment and in the long term. Disengagement from education or work can have lasting implications for AYAs' financial independence, psychosocial well-being, and quality of life. Australian AYAs with cancer lack access to adequate specialist support for their education and work needs and report a preference for web-based support that they can access from anywhere, in their own time. However, it remains unclear what web-based resources exist that are tailored to support AYAs with cancer in reaching their educational or work goals. OBJECTIVE: This study aimed to determine what web-based resources exist for Australian AYAs with cancer to (1) support return to education or work and (2) identify the degree to which existing resources are age-specific, cancer-specific, culturally inclusive, and evidence-based; are co-designed with AYAs; use age-appropriate language; and are easy to find. METHODS: We conducted an environmental scan by searching Google with English search terms in August 2022 to identify information resources about employment and education for AYAs ever diagnosed with cancer. Data extraction was conducted in Microsoft Excel, and the following were assessed: understandability and actionability (using the Patient Education and Materials Tool), readability (using the Sydney Health Literacy Laboratory Health Literacy Editor), and whether the resource was easy to locate, evidence-based, co-designed with AYAs, and culturally inclusive of Aboriginal and Torres Strait Islander peoples. The latter was assessed using 7 criteria previously developed by members of the research team. RESULTS: We identified 24 web-based resources, comprising 22 written text resources and 12 video resources. Most resources (21/24, 88%) were published by nongovernmental organizations in Australia, Canada, the United States, and the United Kingdom. A total of 7 resources focused on education, 8 focused on work, and 9 focused on both education and work. The evaluation of resources demonstrated poor understandability and actionability. Resources were rarely evidence-based or co-designed by AYAs, difficult to locate on the internet, and largely not inclusive of Aboriginal and Torres Strait Islander populations. CONCLUSIONS: Although web-based resources for AYAs with cancer are often available through the websites of hospitals or nongovernmental organizations, this environmental scan suggests they would benefit from more evidence-based and actionable resources that are available in multiple formats (eg, text and audio-visual) and tailored to be age-appropriate and culturally inclusive.
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OBJECTIVES: Worry about recurrence or progression is a common concern among people with chronic physical illnesses. Although there are options to measure the fear of cancer recurrence and other illness-specific measures, there is only one transdiagnostic measure of fear of progression, which does not assess the fear of recurrence or relapse. DESIGN: A multi-phase study outlining the development and validation of a novel transdiagnostic measure of fear of recurrence or progression, the Worries About Recurrence and Progression Scale (WARPS). METHOD: From a prior systematic review, we used quotes from people with lived experience to generate 55 items. Next, we piloted the items with 10 people with a range of chronic conditions, leading to a final total of 57 items. We then recruited four groups of people with cardiac disease, rheumatic disease, diabetes and respiratory disease (n = 804). An exploratory factor analysis in a randomly split sample resulted in an 18 item, single factor scale. We then performed confirmatory factor analysis on these 18 items in the remaining sample. RESULTS: The 18-item WARPS demonstrated good construct validity, internal consistency and test-retest reliability. Specifically, the WARPS was strongly correlated with the Fear of Progression Questionnaire, and with illness-specific fears. Significant, moderate correlations were observed with depression, anxiety, stress, and death anxiety. The WARPS demonstrated the validity and reliability amongst people with four of the most common chronic conditions and the factor structure was invariant across genders. CONCLUSION: The WARPS is a valid and reliable tool to measure transdiagnostic worries about recurrence and progression.
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Ansiedad , Miedo , Humanos , Masculino , Femenino , Reproducibilidad de los Resultados , Psicometría , Enfermedad Crónica , Encuestas y CuestionariosRESUMEN
AIM: Although there is growing research exploring survivor fear of cancer recurrence (FCR), little is known about caregiver FCR. To date, examination of caregiver FCR has largely been conducted through the lens of survivor conceptualisations, limiting the development of caregiver-specific models, measures, and interventions. This study aimed to explore experiences of FCR among caregivers of people with ovarian cancer. METHODS: Semi-structured telephone interviews were conducted with caregivers of people with ovarian cancer. Participants, recruited through Ovarian Cancer Australia, also completed an online survey collecting participant and patient demographic characteristics, information about the survivor's disease and caregiver levels of FCR using the Fear of Cancer Recurrence Inventory (Caregiver) (FCRI-c). Qualitative interviews explored caregiver fears, how fears and concerns were experienced and the frequency and timing of FCR. Thematic analysis using a Framework Approach was used to analyse the results. RESULTS: Twenty-four caregivers (54% male) participated in an interview. Most caregivers were providing care for their partner (n = 14). Thematic analysis identified four inter-related themes and associated sub-themes: (1) Fear and uncertainty; (2) Liminality; (3) Hopelessness and (4) Caregiver's protection of the person and self (caregiver's role as protector). Underpinning these themes was an overarching fear of one's family member dying. CONCLUSIONS: Caregivers supporting people with ovarian cancer experience worries and concerns related to cancer recurrence or progression. These experiences are conceptually different to survivor experiences. Fear of one's family member dying, and the dual nature of caregiver protection/self-protection mean it is imperative that interventions are tailored specifically to caregiver needs. Future research facilitating the development of appropriate measures and interventions is essential to reduce caregiver FCR.
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Cuidadores , Neoplasias Ováricas , Humanos , Masculino , Femenino , Recurrencia Local de Neoplasia , Miedo , Ansiedad , Neoplasias Ováricas/terapiaRESUMEN
OBJECTIVES: To synthesize current evidence on the association between anticipatory anxiety, defined as apprehension-specific negative affect that may be experienced when exposed to potential threat or uncertainty, and cancer screening to better inform strategies to maximize participation rates. METHODS: Searches related to cancer screening and anxiety were conducted in seven electronic databases (APA PsycINFO, Scopus, Web of Science, Embase, Cochrane Library, PubMed, CINAHL), with potentially eligible papers screened in Covidence. Data extraction was conducted independently by multiple authors. Barriers to cancer screening for any type of cancer and relationships tested between anticipatory anxiety and cancer screening and intention were categorized and compared according to the form and target of anxiety and cancer types. RESULTS: A total of 74 articles (nparticipants = 119,990) were included, reporting 103 relationships tested between anticipatory anxiety and cancer screening and 13 instances where anticipatory anxiety was reported as a barrier to screening. Anticipatory anxiety related to a possible cancer diagnosis was often associated with increased screening, while general anxiety showed no consistent relationship. Negative relationships were often found between anxiety about the screening procedure and cancer screening. CONCLUSION: Anticipatory anxiety about a cancer diagnosis may promote screening participation, whereas a fear of the screening procedure could be a barrier. Public health messaging and primary prevention practitioners should acknowledge the appropriate risk of cancer, while engendering screening confidence and highlighting the safety and comfort of screening tests.
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Detección Precoz del Cáncer , Neoplasias , Humanos , Ansiedad/diagnóstico , Neoplasias/diagnóstico , IncertidumbreRESUMEN
OBJECTIVE: Fear of cancer recurrence (FCR) is highly prevalent, however there is no formal training for clinicians to address FCR. A novel brief clinician intervention to help patients manage FCR (Clinician Intervention to Reduce Fear of Recurrence (CIFeR)) was shown to be feasible, acceptable, and reduced FCR in breast cancer patients in a pilot study. We now aim to explore the barriers and facilitators of implementing CIFeR within routine oncology practice in Australia. METHODS: This multicentre, single-arm Phase I/II implementation study recruited surgical, medical and radiation oncologists who treat women with early breast cancer. Participating clinicians completed online CIFeR training and were asked to use CIFeR for the next 6 months. Questionnaires were administered before (T0), immediately after (T1), then 3 (T2) and 6 months (T3) after training to assess confidence in addressing FCR and Proctor Implementation outcomes. The primary outcome was adoption at T2. Secondary outcomes were self-efficacy in FCR management, acceptability, feasibility, costs, barriers and facilitators of implementation. RESULTS: Fifty-two clinicians consented of whom 37 completed the CIFeR intervention training. Median age of participants was 41.5 (range 29-61), 73% were female and 51% were medical oncologists. The primary endpoint was met, with CIFeR adopted by 82%. Clinician intervention delivery took 7.4 min on average and was deemed acceptable, appropriate and feasible. Self-efficacy in managing FCR improved significantly across all domains (p < 0.001). Lack of time was the greatest barrier to routine CIFeR_2 implementation. CONCLUSIONS: A structured brief, low-cost clinician intervention to reduce FCR is useful, acceptable and improved self-efficacy with FCR management. Fear of cancer recurrence training should be incorporated into communication skills training of oncologists and surgeons. TRIAL REGISTRATION: Prospectively registered with the Australian New Zealand Clinical Trials Registry, ACTRN12621001697875. TRIAL SPONSOR: Chris O'Brien Lifehouse.
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Neoplasias de la Mama , Supervivientes de Cáncer , Femenino , Humanos , Masculino , Australia , Neoplasias de la Mama/terapia , Miedo , Recurrencia Local de Neoplasia , Proyectos Piloto , Adulto , Persona de Mediana EdadRESUMEN
Background: People living with high-grade glioma (HGG) have diverse and complex needs. Screening aims to detect patients with some level of unmet need requiring triaging and further assessment. However, most existing measures of unmet need are not suitable for screening in this population due to their length. We aimed to explore the clinical utility of a brief screening tool (SCNS-ST9) in people with HGG in detecting unmet needs. Methods: Secondary analysis of data collected in a prospective cohort study of 116 people with HGG who completed the Supportive Care Needs Survey (SCNS-SF34) and a brain cancer-specific needs survey (BrTSCNS) during chemoradiation (T1) and 6 months later (T2). The SCNS-ST9 contains a subset of 9 items from the SCNS-SF34. Data analysis determined the number of individuals with unmet needs on the SCNS-SF34 and the BrTSCNS, not identified as having some level of need by the SCNS-ST9. Results: Overall, 3 individuals (T1: 2.6% [3/116]; T2: 4.8% [3/63]) at each time point reported other unmet needs on the SCNS-SF34 that were missed by the SCNS-ST9. Domain-specific screening items missed a higher proportion of individuals (3.2%-26%), particularly in the psychological and health systems domains. Only 1 individual with brain cancer-specific needs was missed by SCNS-ST9 overall. Conclusion: Findings demonstrate the sensitivity and clinical utility of a brief screening tool (SCNS-ST9) of unmet needs in people with HGG. Routine use of this screening tool, supported by clinical pathways, may improve access to support services, potentially reducing the burden of disease for these patients.
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BACKGROUND: Organisational readiness is recognised as a key factor impacting the successful translation of research findings into practice. Within psycho-oncology, measuring organisational readiness and understanding factors impacting organisational readiness is crucial as it is often challenging to implement evidence-based findings into routine cancer care. In this quantitative study, we examined the level of organisational readiness of cancer services preparing to implement a clinical pathway for the screening, assessment, and management of anxiety and depression in adult cancer patients (the ADAPT CP) within a cluster randomised controlled trial and sought to identify staff- and service-level factors associated with organisational readiness. METHODS: Multidisciplinary staff across 12 Australian cancer services were identified. Their perceptions of their services' readiness to implement the ADAPT CP in the cancer stream or treatment modality selected within their service was assessed prior to implementation using the Organizational Readiness for Implementing Change scale. Data collection included staff demographic and professional characteristics, and their perception of the ADAPT CP using a set of 13 study-specific survey items. Service characteristics were captured using a site profile audit form and workflows during site engagement. RESULTS: Fourteen staff- and service-level factors were identified as potentially impacting organisational readiness. To identify factors that best explained organisational readiness, separate univariate analyses were conducted for each factor, followed by a backward elimination regression. Compared to services that implemented the ADAPT CP in one treatment modality, those opting for four treatment modalities had significantly higher organisational readiness scores. Staff in administrative/technical support/non-clinical roles had significantly higher organisational readiness scores compared to psychosocial staff. Higher organisational readiness scores were also significantly related to more positive perceptions of the ADAPT CP. CONCLUSIONS: Readiness to implement an anxiety and depression clinical pathway within 12 oncology services was high. This may be attributed to the extensive engagement with services prior to implementation. The factors associated with organisational readiness highlight the importance of ensuring adequate resourcing and supporting staff to implement change, effectively communicating the value of the change, and taking a whole-of-service approach to implementing the change. Future longitudinal studies may identify factors associated with ongoing readiness and engagement prior to implementation. TRIAL REGISTRATION: The ADAPT RCT was registered prospectively with the ANZCTR on 22/03/2017. Trial ID ACTRN12617000411347. https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=372486&isReview=true .
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Vías Clínicas , Neoplasias , Humanos , Adulto , Depresión/diagnóstico , Depresión/terapia , Australia , Ansiedad/diagnóstico , Ansiedad/terapia , Trastornos de Ansiedad , Neoplasias/complicaciones , Neoplasias/terapiaRESUMEN
PURPOSE: People of Culturally and Linguistically Diverse (CALD) backgrounds face disparities in cancer care. This scoping review aims to identify the breadth of international literature focused on cancer survivorship programs/interventions specific to CALD populations, and barriers and facilitators to program participation. METHODS: Scoping review included studies focused on interventions for CALD cancer survivors after curative-intent treatment. Electronic databases: Medline, Embase, CINAHL, PsycInfo and Scopus were searched, for original research articles from database inception to April 2022. RESULTS: 710 references were screened with 26 included: 14 randomized (54%), 6 mixed-method (23%), 4 non-randomized experimental (15%), 2 qualitative studies (8%). Most were United States-based (85%), in breast cancer survivors (88%; Table 1), of Hispanic/Latinx (54%) and Chinese (27%) backgrounds. Patient-reported outcome measures were frequently incorporated as primary endpoints (65%), or secondary endpoints (15%). 81% used multi-modal interventions with most encompassing domains of managing psychosocial (85%) or physical (77%) effects from cancer, and most were developed through community-based participatory methods (46%) or informed by earlier work by the same research groups (35%). Interventions were usually delivered by bilingual staff (88%). 17 studies (77%) met their primary endpoints, such as meeting feasibility targets or improvements in quality of life or psychological outcomes. Barriers and facilitators included cultural sensitivity, health literacy, socioeconomic status, acculturation, and access. CONCLUSIONS: Positive outcomes were associated with cancer survivorship programs/interventions for CALD populations. As we identified only 26 studies over the last 14 years in this field, gaps surrounding provision of cancer survivorship care in CALD populations remain. IMPLICATIONS FOR CANCER SURVIVORS: Ensuring culturally sensitive and specific delivery of cancer survivorship programs and interventions is paramount in providing optimal care for survivors from CALD backgrounds.
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BACKGROUND: As COVID-19 spread across the globe, cancer services were required to rapidly pivot to minimise risks without compromising outcomes for patients or staff. The aim of this study was to document changes to oncology services as a result of COVID-19 from the perspectives of both providers and receivers of care during the initial phase of the pandemic. METHODS: Participants were recruited between June and December 2020 through an email invitation via professional or consumer organisations, two hospital-based oncology services and snowballing. Semi-structured interviews focused on health service changes and their impacts, which were then analysed by thematic analysis. RESULTS: Thirty-two patients, 16 carers and 29 health professionals were recruited. Fifteen patients (n = 47%) had localised disease, and 19 (n = 59%) were currently receiving treatment. Oncology staff included oncologists, palliative care physicians, nurses, allied health and psychosocial practitioners. Four themes arose from the data: safety, increased stress and burnout, communication challenges and quality of cancer care. CONCLUSIONS: There is an ongoing need for cancer-specific information from a single, trusted source to inform medical practitioners and patients/carers. More data are required to inform evidence-based guidelines for cancer care during future pandemics. All stakeholders require ongoing support to avoid stress and burnout.
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COVID-19 , Humanos , Investigación Cualitativa , Agotamiento Psicológico , Comunicación , Correo ElectrónicoRESUMEN
OBJECTIVE: Fear of cancer recurrence (FCR) is reported by both cancer survivors and caregivers however less is known about caregiver FCR. This study aimed to (a) conduct a meta-analysis to compare survivor and caregiver FCR levels; (b) examine the relationship between caregiver FCR and depression, and anxiety; (c) evaluate psychometric properties of caregiver FCR measures. METHODS: CINAHL, Embase, PsychINFO and PubMed were searched for quantitative research examining caregiver FCR. Eligibility criteria included caregivers caring for a survivor with any type of cancer, reporting on caregiver FCR and/or measurement, published in English-language, peer-review journals between 1997 and November 2022. The COnsensus-based Standards for the selection of health status Measurement INstruments (COSMIN) taxonomy was used to evaluate content and psychometric properties. The review was pre-registered (PROSPERO ID: CRD42020201906). RESULTS: Of 4297 records screened, 45 met criteria for inclusion. Meta-analysis revealed that caregivers reported FCR levels as high as FCR amongst survivors, with around 48% of caregivers reporting clinically significant FCR levels. There was a strong correlation between anxiety and depression and medium correlation with survivor FCR. Twelve different instruments were used to measure caregiver FCR. Assessments using the COSMIN taxonomy revealed few instruments had undergone appropriate development and psychometric testing. Only one instrument met 50% or more of the criteria, indicating substantial development or validation components were missing in most. CONCLUSIONS: Results suggest FCR is as often a problem for caregivers as it is for survivors. As in survivors, caregiver FCR is associated with more severe depression and anxiety. Caregiver FCR measurement has predominately relied on survivor conceptualisations and unvalidated measures. More caregiver-specific research is urgently needed.
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Cuidadores , Neoplasias , Humanos , Miedo , Ansiedad , Recurrencia , Neoplasias/terapia , Recurrencia Local de NeoplasiaRESUMEN
BACKGROUND: Fear of cancer recurrence (FCR) affects 50-70% of cancer survivors with 30% reporting an unmet need for help with managing FCR. Patients indicate desire to discuss FCR with clinicians, however clinicians indicate discomfort with managing FCR and no formal educational interventions on how to discuss FCR or worry exists for oncology clinicians. Our team developed a novel clinician-driven brief education intervention to help patients manage FCR (the Clinician Intervention to Reduce Fear of Recurrence (CIFeR) intervention). In earlier work, we demonstrated the feasibility, acceptability, and efficacy of CIFeR in reducing FCR in breast cancer patients. We now aim to explore the barriers and facilitators to implementing this low-cost brief intervention within routine oncology practice in Australia. The primary objective is to assess the adoption of CIFeR in routine clinical practice. Secondary objectives are to identify the uptake and sustainability, perceived acceptability, feasibility, costs, barriers and facilitators of implementation of CIFeR in routine clinical practice, and to assess whether training in CIFeR increases clinicians' self-efficacy in managing FCR with their patients. METHODS: This multicentre, single-arm Phase I/II implementation study will recruit medical and radiation oncologists and oncology surgeons who treat women with early breast cancer. Participants will complete online CIFeR training. They will then be asked to use CIFeR with suitable patients for the next 6 months. Participants will complete questionnaires prior to, immediately after and 3 and 6 months after training to assess confidence addressing FCR, and 3 and 6 months after training to assess Proctor Implementation outcomes. At 6 months, they will also be asked to participate in a semi-structured telephone interview to elicit their feedback about barriers and facilitators to using CIFeR in routine clinical practice. DISCUSSION: This study will provide further data to support the routine use of an evidence-based, clinician-lead educational intervention to reduce FCR in breast cancer patients. Additionally, this study will identify any barriers and facilitators to implementing the CIFeR intervention in routine care and evidence for integration of FCR training into oncology communication skills education. TRIAL REGISTRATION: Prospectively registered with the Australian New Zealand Clinical Trials Registry, ACTRN12621001697875. TRIAL SPONSOR: Chris O'Brien Lifehouse. PROTOCOL VERSION: 2.6, Dated 28th February 2023.
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Neoplasias de la Mama , Supervivientes de Cáncer , Humanos , Femenino , Australia , Miedo , Neoplasias de la Mama/terapia , Oncología Médica , Estudios Multicéntricos como AsuntoRESUMEN
OBJECTIVE: Fear of cancer recurrence (FCR) is one of the most common unmet needs for cancer patients and caregivers. Yet little is known about the potentially unique nature of caregiver FCR. Our research aimed to address this gap by qualitatively exploring the features and impact of caregiver FCR. METHODS: Eighteen semi-structured telephone interviews with cancer caregivers were conducted to explore the content and impact of caregiver fears and worries about cancer recurrence or progression. Data analysis used a Framework Approach. RESULTS: Qualitative analysis identified three themes (1) fear of the patient suffering, (2) the need to protect the patient from a recurrence and/or cancer-related distress, and (3) caregiver's sense of unpreparedness and uncertainty. Underpinning these themes was an overarching sense of personal responsibility for the life of the patient. This overarching theme was identified as a key driver of caregivers' personal and patient-centred fears. CONCLUSIONS: Our findings confirm the conceptual differences between patient and caregiver FCR. Future research must therefore acknowledge the unique experiences of caregivers and prioritise the development of empirically driven theoretical models, instruments, and interventions for caregiver FCR.
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Cuidadores , Neoplasias , Humanos , Miedo , Recurrencia , Ansiedad , Investigación CualitativaRESUMEN
BACKGROUND: Optimal strategies to facilitate implementation of evidence-based clinical pathways are unclear. We evaluated two implementation strategies (Core versus Enhanced) to facilitate implementation of a clinical pathway for the management of anxiety and depression in cancer patients (the ADAPT CP). METHODS: Twelve cancer services in NSW Australia were cluster randomised, stratified by service size, to the Core versus Enhanced implementation strategy. Each strategy was in place for 12 months, facilitating uptake of the ADAPT CP (the intervention being implemented). The Core strategy included a lead team with champions, staff training and awareness campaigns prior to implementation, plus access to feedback reports and telephone or online support during implementation. The Enhanced strategy included all Core supports plus monthly lead team meetings, and proactive, ongoing advice on managing barriers, staff training and awareness campaigns throughout implementation. All patients at participating sites were offered the ADAPT CP as part of routine care, and if agreeable, completed screening measures. They were allocated a severity step for anxiety/depression from one (minimal) to five (severe) and recommended management appropriate to their severity step. Multi-level mixed-effect regression analyses examined the effect of Core versus Enhanced implementation strategy on adherence to the ADAPT CP (binary primary outcome: adherent ≥ 70% of key ADAPT CP components achieved versus non-adherent < 70%), with continuous adherence as a secondary outcome. Interaction between study arm and anxiety/depression severity step was also explored. RESULTS: Of 1280 registered patients, 696 (54%) completed at least one screening. As patients were encouraged to re-screen, there were in total 1323 screening events (883 in Core and 440 in Enhanced services). The main effect of implementation strategy on adherence was non-significant in both binary and continuous analyses. Anxiety/depression step was significant, with adherence being higher for step 1 than for other steps (p = 0.001, OR = 0.05, 95% CI 0.02-0.10). The interaction between study arm and anxiety/depression step was significant (p = 0.02) in the continuous adherence analysis only: adherence was significantly higher (by 7.6% points (95% CI 0.08-15.1%) for step 3 in the Enhanced arm (p = .048) and trending to significance for step 4. DISCUSSION: These results support ongoing implementation effort for the first year of implementation to ensure successful uptake of new clinical pathways in over-burdened clinical services. TRIAL REGISTRATION: ANZCTR Registration: ACTRN12617000411347 (Trial registered 22/03/2017; https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=372486&isReview=true ).
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Vías Clínicas , Neoplasias , Humanos , Depresión/terapia , Ansiedad/terapia , Trastornos de Ansiedad/terapia , Neoplasias/complicaciones , Neoplasias/terapiaRESUMEN
BACKGROUND: Despite high rates of mental health disorders among cancer patients, uptake of referral to psycho-oncology services remains low. This study aims to develop and seek clinician and patient feedback on a patient decision aid (PDA) for cancer patients making decisions about treatment for anxiety and/or depression. METHODS: Development was informed by the International Patient Decision Aid Standards and the Ottawa Decision Support Framework. Psycho-oncology professionals provided feedback on the clinical accuracy, acceptability, and usability of a prototype PDA. Cognitive interviews with 21 cancer patients/survivors assessed comprehensibility, acceptability, and usefulness. Interviews were thematically analysed using Framework Analysis. RESULTS: Clinicians and patients strongly endorsed the PDA. Clinicians suggested minor amendments to improve clarity and increase engagement. Patient feedback focused on clarifying the purpose of the PDA and improving the clarity of the values clarification exercises (VCEs). CONCLUSIONS: The PDA, the first of its kind for psycho-oncology, was acceptable to clinicians and patients. Valuable feedback was obtained for the revision of the PDA and VCEs.
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Toma de Decisiones , Neoplasias , Humanos , Técnicas de Apoyo para la Decisión , Depresión/terapia , Neoplasias/terapia , Ansiedad/terapia , Participación del PacienteRESUMEN
OBJECTIVE: Fear of cancer recurrence (FCR) is highly prevalent among cancer survivors, but irregularly identified in practice. Single-item FCR measures suitable for integration into broader psychosocial screening are needed. This study evaluated the validity of a revised version of the original FCR-1 (FCR-1r) and screening performance alongside the Edmonton Symptom Assessment System - Revised (ESAS-r) anxiety item. METHODS: The FCR-1r was adapted from the FCR-1 and modelled on the ESAS-r. Associations between FCR-1r and FCR Inventory-Short Form (FCRI-SF) scores determined concurrent validity. Relationships of FCR-1r scores with variables related (e.g., anxiety, intrusive thoughts) and unrelated (e.g., employment/marital status) to FCR determined convergent and divergent validity respectively. A Receiver-Operating Characteristic analysis examined screening performance and cut-offs for the FCR-1r and ESAS-r anxiety item. RESULTS: 107 participants were recruited in two studies (Study 1, July-October 2021, n = 54; Study 2: November 2021-May 2022, n = 53). The FCR-1r demonstrated concurrent validity against the FCRI-SF (r = 0.83, p < 0.0001) and convergent validity versus the Generalised Anxiety Disorder-7 (r = 0.63, p < 0.0001) and Impact of Event Scale-Revised Intrusion subscale (r = 0.55, p < 0.0001). It did not correlate with unrelated variables (e.g., employment/marital status), indicating divergent validity. An FCR-1r cut-off ≥5/10 had 95% sensitivity and 77% specificity for detecting clinical FCR (area under the curve (AUC) = 0.91, 95% CI 0.85-0.97, p < 0.0001); ESAS-r anxiety cut-off ≥4 had 91% sensitivity and 82% specificity (AUC = 0.87, 95% CI 0.77-0.98, p < 0.0001). CONCLUSIONS: The FCR-1r is a valid and accurate tool for FCR screening. Further evaluation of the screening performance of the FCR-1r versus the ESAS-r anxiety item in routine care is needed.