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1.
Arch Public Health ; 82(1): 65, 2024 May 06.
Article in English | MEDLINE | ID: mdl-38711115

ABSTRACT

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.

2.
Oncologist ; 2024 May 07.
Article in English | MEDLINE | ID: mdl-38713191

ABSTRACT

Tumor mutation profiling (MP) is often conducted on tissue from biopsies conducted for clinical purposes (diagnostic tissue). We aimed to explore the views of patients with cancer on who should own tumor biopsy tissue, pay for its storage, and decide on its future use; and determine their attitudes to and predictors of undergoing additional biopsies if required for research purposes. In this mixed methods, cross-sectional study, patients with advanced solid cancers enrolled in the Molecular Screening and Therapeutics Program (n = 397) completed a questionnaire prior to undergoing MP (n = 356/397). A subset (n = 23) also completed a qualitative interview. Fifty percent of participants believed they and/or relatives should own and control access to diagnostic tissue. Most (65.5%) believed the government should pay for tissue preparation. Qualitative themes included (1) custodianship of diagnostic tissue, (2) changing value of tissue across time and between cultures, (3) equity regarding payment, and (4) cost-benefit considerations in deciding on additional biopsies. Policy and regulation should consider patient perspectives. Extension of publicly funded health care to include tissue retrieval for clinical trials should be considered.

3.
Transl Lung Cancer Res ; 13(4): 785-798, 2024 Apr 29.
Article in English | MEDLINE | ID: mdl-38736502

ABSTRACT

Background: With novel therapies, more individuals are living longer with lung cancer (LC). This study aimed to understand the impacts of LC on life domains such as employment, finances, relationships, and healthcare needs. Methods: Individuals 18+, diagnosed with LC, 6-24 months post-treatment were recruited through an Australian LC cohort study (Embedding Research and Evidence in Cancer Healthcare-EnRICH). Demographic, clinical, quality-of-life and distress data were obtained through the EnRICH study database. Participants completed telephone interviews. Qualitative data were analysed via Framework methods. Results: Twenty interviews (10 females) were conducted. Most participants were diagnosed with advanced LC (Stage III =8, Stage IV =6), and were on average 17 (range, 10-24) months post-diagnosis. Four themes related to "carrying on with life" as a LC survivor were identified: (I) the winding path back to work: those working pre-diagnosis discussed challenges of maintaining/returning to employment, and the meaning and satisfaction derived from work. (II) Vulnerability versus protection: managing the financial impacts of LC: wide variations in financial impacts, some described lost income and high healthcare expenses, others felt financially protected. (III) Connection and loneliness: navigating relationships as a survivor: some experienced lost friendships due to their diagnosis, others noted more meaningful connections. (IV) Still under the umbrella: healthcare during survivorship: participants noted the importance of ongoing oncology team connection and the vital role of cancer care coordinators. Conclusions: Many individuals living with LC want to "carry on" with life. Participants spoke of challenges and opportunities across life domains of relationships, work, and finances, and noted the importance of continued specialist healthcare throughout survivorship.

4.
JMIR Med Educ ; 10: e50118, 2024 Apr 17.
Article in English | MEDLINE | ID: mdl-38630531

ABSTRACT

BACKGROUND: Carers often assume key roles in cancer care. However, many carers report feeling disempowered and ill-equipped to support patients. Our group published evidence-based guidelines (the Triadic Oncology [TRIO] Guidelines) to improve oncology clinician engagement with carers and the management of challenging situations involving carers. OBJECTIVE: To facilitate implementation of the TRIO Guidelines in clinical practice, we aimed to develop, iteratively refine, and conduct user testing of a suite of evidence-based and interactive web-based education modules for oncology clinicians (e-Triadic Oncology [eTRIO]), patients with cancer, and carers (eTRIO for Patients and Carers [eTRIO-pc]). These were designed to improve carer involvement, communication, and shared decision-making in the cancer management setting. METHODS: The eTRIO education modules were based on extensive research, including systematic reviews, qualitative interviews, and consultation analyses. Guided by the person-based approach, module content and design were reviewed by an expert advisory group comprising academic and clinical experts (n=13) and consumers (n=5); content and design were continuously and iteratively refined. User experience testing (including "think-aloud" interviews and administration of the System Usability Scale [SUS]) of the modules was completed by additional clinicians (n=5), patients (n=3), and carers (n=3). RESULTS: The final clinician module comprises 14 sections, requires approximately 1.5 to 2 hours to complete, and covers topics such as carer-inclusive communication and practices; supporting carer needs; and managing carer dominance, anger, and conflicting patient-carer wishes. The usability of the module was rated by 5 clinicians, with a mean SUS score of 75 (SD 5.3), which is interpreted as good. Clinicians often desired information in a concise format, divided into small "snackable" sections that could be easily recommenced if they were interrupted. The carer module features 11 sections; requires approximately 1.5 hours to complete; and includes topics such as the importance of carers, carer roles during consultations, and advocating for the patient. The patient module is an adaptation of the relevant carer module sections, comprising 7 sections and requiring 1 hour to complete. The average SUS score as rated by 6 patients and carers was 78 (SD 16.2), which is interpreted as good. Interactive activities, clinical vignette videos, and reflective learning exercises are incorporated into all modules. Patient and carer consumer advisers advocated for empathetic content and tone throughout their modules, with an easy-to-read and navigable module interface. CONCLUSIONS: The eTRIO suite of modules were rigorously developed using a person-based design methodology to meet the unique information needs and learning requirements of clinicians, patients, and carers, with the goal of improving effective and supportive carer involvement in cancer consultations and cancer care.


Subject(s)
Caregivers , Neoplasms , Humans , Educational Status , Medical Oncology , Learning , Internet , Neoplasms/therapy
5.
Patient Educ Couns ; 124: 108251, 2024 Jul.
Article in English | MEDLINE | ID: mdl-38626502

ABSTRACT

OBJECTIVES: Many oncology health professionals (HPs) report communicating with carers as complex; and receive limited carer-relevant training. We developed an online HP education program for supporting and managing carer involvement (eTRIO). We aimed to assess whether HPs' self-efficacy in carer communication, knowledge, and decision-making preferences improve following eTRIO. Satisfaction and implementation potential were assessed. METHODS: This type 1 hybrid effectiveness-implementation study used a pre-post single arm intervention design. HPs completed baseline measures, the eTRIO online module, and measures at 1- and 12-weeks post-intervention. Measures included: self-efficacy in carer communication (13-items), applied knowledge (7-items), preference for carer involvement in decisions (1-item). Fifteen of participants completed feedback interviews which underwent thematic analysis. User analytics were collected and analysed. RESULTS: Fifty-six HPs completed baseline measures, 42 completed post- and follow-up measures. At baseline mean self-efficacy score was 88. HPs showed a statistically significant increase in self-efficacy post-intervention (mean = 105.8, CI [12.99, 20.47]), maintained at 12-weeks (mean = 101.1, CI [8.00, 15.72]). There were no changes in knowledge or decision-making preferences. Program engagement and satisfaction were high, 86.7% participants rated eTRIO as very/extremely helpful. CONCLUSIONS AND PRACTICE IMPLICATIONS: eTRIO provided HPs with confidence to effectively engage with carers and manage complex situations such as family dominance. These gains are noteworthy, as conflict with families/carers contributes to HP burnout.


Subject(s)
Caregivers , Communication , Self Efficacy , Humans , Female , Male , Caregivers/psychology , Adult , Middle Aged , Health Personnel/psychology , Program Evaluation , Decision Making , Internet-Based Intervention , Medical Oncology
6.
Clin Breast Cancer ; 2024 Mar 06.
Article in English | MEDLINE | ID: mdl-38548516

ABSTRACT

PURPOSE: Improved prognosis of early breast cancer (EBC) has created opportunities for treatment optimization but reducing morbidity should not inadvertently compromise quality of life (QoL). PROSPECT1 used pre-operative MRI and pathology findings to identify women suitable for radiotherapy (RT) omission following breast conserving surgery. We retrospectively explored the association between de-escalation by omission of RT and QoL in women with EBC. MATERIALS AND METHODS: Three groups were recruited: PROSPECT participants who omitted RT following preoperative MRI (A); participants who received RT following preoperative MRI (B); and women who received usual care - No MRI, received RT (C). Measures included the EORTC QLQ-C30 and BR23, BCTOS, DASS-21 and a measure of decision regret. Between group differences were assessed using ANOVA or nonparametric equivalents. Semi-structured interviews were analyzed with qualitative description (n = 44). RESULTS: Data from 400 women were analyzed (125A, 102B, 173C). Group A had fewer symptoms and better body image (breast symptoms: A-B P = .003, A-C P = <.001; arm symptoms: A-B P = .004, A-C P = .011; body image: A-C P = .041) and fewer differences between the treated and untreated breasts (cosmetic: A-B P < .001, A-C P < .001; functional: A-C P = .011; breast specific pain: A-B P < .001, A-C P < .001). Two qualitative themes were found: Treatment with the biggest impact on QoL, and Specific impact of RT on QoL. CONCLUSIONS: Omission of RT was associated with better QoL and functional and cosmetic outcomes. It was highly acceptable to patients. Clinicians should consider the potential for preserved QoL associated with treatment optimization via omission of RT in treatment planning for patients with EBC.

7.
Palliat Med ; : 2692163241234004, 2024 Mar 14.
Article in English | MEDLINE | ID: mdl-38483052

ABSTRACT

BACKGROUND: Growing global demand for palliative care services has prompted generalist clinicians to provide adjunct support to specialist teams. Paramedics are uniquely placed to respond to these patients in the community. However, embedding palliative care principles into their core business will require multifactorial interventions at structural, healthcare service and individual clinician and consumer levels. AIM: To develop a palliative paramedicine framework suitable for national implementation, to standardise best practice in Australia. DESIGN: Delphi study utilising questionnaire completion; each round informed the need for, and content of, the next round. Free text comments were also sought in Round 1. Two rounds of Delphi were undertaken. SETTING/PARTICIPANTS: Sixty-eight participants took part in Round 1, representing six countries, and 66 in Round 2. Participants included paramedics, palliative care doctors and nurses, general practitioners, researchers and carers with lived experience and expertise in palliative paramedicine. RESULTS: Seventeen of the original 24 components gained consensus; 6 components were modified; and 9 new components arose from Round 1. All modified and new components gained consensus in Round 2. Only one original component did not gain consensus across both rounds and was excluded from the final 32-component framework. CONCLUSION: This study has developed a comprehensive national framework addressing the macro-, meso- and micro-level interventions required to standardise palliative paramedicine across Australia. Future research ought to engage a multidisciplinary team to create an implementation strategy, addressing any perceived barriers, facilitators and challenges for applying the framework into policy and practice.

8.
Gynecol Oncol ; 185: 33-41, 2024 Feb 15.
Article in English | MEDLINE | ID: mdl-38364693

ABSTRACT

OBJECTIVE: We aimed to explore the supportive care needs of ovarian cancer patients and their caregivers before and after the first cancer recurrence, the top unmet needs after recurrence, and the relationship between patient and caregiver needs at recurrence. METHODS: Participants were 288 patients and 140 caregivers from the Australian Ovarian Cancer Study-Quality of Life (AOCS-QoL) cohort. They completed Supportive Care Needs Surveys (patients: SCNS-SF34, caregivers: SCNS-P&C44) every three-to-six months for up to two years. Linear mixed models tracked changes in needs over time. We calculated the percentage reporting moderate-to-high needs after recurrence. LASSO regression analysed patient-caregiver need relationships. RESULTS: Both patients' and caregivers' psychological, health system/service and information needs increased with recurrence along with patients' support and physical needs. These remained stable at nine months after recurrence. Dominant patient needs post-recurrence included 'fear of recurrence' (38%) and 'concerns about the worries of those close' (34%), while caregivers expressed 'concerns about recurrence' (41%) and 'recovery of the patient not turning out as expected' (31%). Among dyads, when patients had 'fears about the cancer spreading' this was associated with caregivers having a need for help with 'reducing stress in the patients' life'; when caregivers had concerns about 'recurrence' this was associated with patients needing help with 'uncertainty about the future' and 'information about things they can do to help themselves'. CONCLUSIONS: Recurrent ovarian cancer intensifies disease-related fears and concerns for patients and loved ones. Addressing dyadic concerns through supportive care interventions may enhance cohesion during the challenging journey of recurrent disease.

9.
Psychooncology ; 33(1): e6295, 2024 Jan.
Article in English | MEDLINE | ID: mdl-38282221

ABSTRACT

AIM: We aimed to develop two question prompt lists (QPLs), one for Indian cancer patients undergoing radiation therapy and the second for their primary family caregivers. METHODS: The study comprised three phases: (1) qualitative interviews with patients (n = 65) and PFCs (n = 39) to identify their information needs, queries and concerns regarding RT; (2) development of draft QPLs using conventional content analysis and translation into Hindi and Marathi using European Organisation Research and Treatment of Cancer guidelines; and, (3) A readability analysis, and acceptability study with patients (n = 22), PFCs (n = 26) and Radiation Oncology (RO) staff (n = 20) exploring barriers to QPL implementation. RESULTS AND DISCUSSION: Analysis in Phase I identified questions patients and PFCs asked or wanted to ask their physician. A list of 125 and 136 questions were generated for patients and PFCs, respectively. After five iterations, the draft QPLs were finalised, translated, and back-translated from English into Hindi and Marathi (Phase II). In Phase III, most patients and PFCs reported the QPLs were easy to read, they did not find it difficult to ask the questions, and the questions were not emotionally upsetting. Conversely, RO staff reported concerns that patients may find it difficult to discuss the questions with their physician. CONCLUSION: The study highlights the need to empower patients and PFCs to ask questions and for staff to feel comfortable answering them. Implementing physician-endorsed QPLs could achieve these aims.


Subject(s)
Communication , Neoplasms , Humans , Caregivers , Surveys and Questionnaires , Physician-Patient Relations , Patient Participation , Neoplasms/psychology
10.
J Pediatr Psychol ; 49(1): 13-26, 2024 Jan 19.
Article in English | MEDLINE | ID: mdl-37873696

ABSTRACT

OBJECTIVE: Parents and their infants with complex congenital heart disease (CHD) face relational challenges, including marked distress, early separations, and infant hospitalizations and medical procedures, yet the prevalence of parent-infant interaction difficulties remains unclear. Using a standardized observational paradigm, this study investigated mother-infant dyadic synchrony, interactional patterns, and associated predictors in mother-infant pairs affected by CHD, compared with typically-developing pairs. METHODS: In this prospective, longitudinal cohort study, mothers and their infants requiring cardiac surgery before age 6-months (n=110 pairs) and an age- and sex-matched Australian community sample (n=85 pairs) participated in a filmed, free-play interaction at 6.9±1.0 months. Mother-infant dyadic synchrony, maternal and infant interactional patterns, and relational risk were assessed using the Child-Adult Relationship Experimental (CARE) Index. Maternal and infant predictors were assessed at 32 weeks gestation, 3- and 6-months postpartum. RESULTS: Most mother-infant interactions were classified as "high risk" or "inept" (cardiac: 94%, control: 81%; p=.007). Dyadic synchrony (p<.001), maternal sensitivity (p=.001), and infant cooperativeness (p=.001) were lower for cardiac than control pairs. Higher maternal traumatic stress at 6-months postpartum predicted lower dyadic synchrony for mother-infant pairs affected by CHD (B=-.04, p=.03). Dyadic synchrony was higher among older infants in the total (B=.40, p=.003) but not cardiac sample (B=.24, p=.06). CONCLUSIONS: Relational difficulties were almost universal among mother-infant pairs affected by CHD and were also high in the Australian community sample. Widespread education initiatives are recommended to increase awareness of heightened mother-infant relational risk in congenital heart care and well-child settings, alongside relationally-focused prevention and early intervention programs.


Subject(s)
Cardiac Surgical Procedures , Mothers , Infant , Female , Adult , Humans , Prospective Studies , Longitudinal Studies , Australia , Mother-Child Relations
11.
Psychooncology ; 32(12): 1930-1938, 2023 Dec.
Article in English | MEDLINE | ID: mdl-37955600

ABSTRACT

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.


Subject(s)
Breast Neoplasms , Cancer Survivors , Female , Humans , Male , Australia , Breast Neoplasms/therapy , Fear , Neoplasm Recurrence, Local , Pilot Projects , Adult , Middle Aged
12.
BMC Cancer ; 23(1): 774, 2023 Sep 13.
Article in English | MEDLINE | ID: mdl-37700229

ABSTRACT

BACKGROUND: Pain is a common, debilitating, and feared symptom, including among cancer survivors. However, large-scale population-based evidence on pain and its impact in cancer survivors is limited. We quantified the prevalence of pain in community-dwelling people with and without cancer, and its relation to physical functioning, psychological distress, and quality of life (QoL). METHODS: Questionnaire data from participants in the 45 and Up Study (Wave 2, n = 122,398, 2012-2015, mean age = 60.8 years), an Australian population-based cohort study, were linked to cancer registration data to ascertain prior cancer diagnoses. Modified Poisson regression estimated age- and sex-adjusted prevalence ratios (PRs) for bodily pain and pain sufficient to interfere with daily activities (high-impact pain) in people with versus without cancer, for 13 cancer types, overall and according to clinical, personal, and health characteristics. The relation of high-impact pain to physical and mental health outcomes was quantified in people with and without cancer. RESULTS: Overall, 34.9% (5,436/15,570) of cancer survivors and 31.3% (32,471/103,604) of participants without cancer reported bodily pain (PR = 1.07 [95% CI = 1.05-1.10]), and 15.9% (2,468/15,550) versus 13.1% (13,573/103,623), respectively, reported high-impact pain (PR = 1.13 [1.09-1.18]). Pain was greater with more recent cancer diagnosis, more advanced disease, and recent cancer treatment. High-impact pain varied by cancer type; compared to cancer-free participants, PRs were: 2.23 (1.71-2.90) for multiple myeloma; 1.87 (1.53-2.29) for lung cancer; 1.06 (0.98-1.16) for breast cancer; 1.05 (0.94-1.17) for colorectal cancer; 1.04 (0.96-1.13) for prostate cancer; and 1.02 (0.92-1.12) for melanoma. Regardless of cancer diagnosis, high-impact pain was strongly related to impaired physical functioning, psychological distress, and reduced QoL. CONCLUSIONS: Pain is common, interfering with daily life in around one-in-eight older community-dwelling participants. Pain was elevated overall in cancer survivors, particularly for certain cancer types, around diagnosis and treatment, and with advanced disease. However, pain was comparable to population levels for many common cancers, including breast, prostate and colorectal cancer, and melanoma.


Subject(s)
Breast Neoplasms , Cancer Survivors , Colorectal Neoplasms , Melanoma , Male , Humans , Middle Aged , Quality of Life , Cohort Studies , Australia/epidemiology , Pain/epidemiology , Pain/etiology
13.
BMC Health Serv Res ; 23(1): 866, 2023 Aug 15.
Article in English | MEDLINE | ID: mdl-37582818

ABSTRACT

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 .


Subject(s)
Critical Pathways , Neoplasms , Humans , Adult , Depression/diagnosis , Depression/therapy , Australia , Anxiety/diagnosis , Anxiety/therapy , Anxiety Disorders , Neoplasms/complications , Neoplasms/therapy
14.
Support Care Cancer ; 31(8): 491, 2023 Jul 24.
Article in English | MEDLINE | ID: mdl-37488459

ABSTRACT

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.


Subject(s)
COVID-19 , Humans , Qualitative Research , Burnout, Psychological , Communication , Electronic Mail
15.
Psychooncology ; 32(9): 1424-1432, 2023 09.
Article in English | MEDLINE | ID: mdl-37489745

ABSTRACT

OBJECTIVE: Fear of cancer recurrence (FCR) is a distressing concern among cancer survivors. Interventions to address FCR need to be effective but also accessible and low cost. This randomized controlled trial evaluated the efficacy of an online group-based psychological intervention for FCR (ConquerFear-Group). METHODS: Eligible breast cancer (BC) survivors had completed primary treatment 3 months-5 years previously, were ≥18 years, and scored ≥22 on the Fear of Cancer Recurrence Inventory-Short Form (FCRI-SF). Participants were randomized to online ConquerFear-Group (focusing on metacognitive strategies, values-clarification, and education about follow-up behavior) or online group-based relaxation training (active control). Questionnaires were completed at baseline (T1), 1 week post-intervention (T2), three (T3) and six (T4) months later. The primary outcome was FCR (FCRI total). A number of secondary and process outcomes were also collected. Treatment effects were evaluated with mixed linear models. RESULTS: Of 866 eligible BC survivors, 475 (55%) completed the FCR screening, and 85 (18%) were randomized to ConquerFear-Group or relaxation training (2 × 6 groups). Compared with control participants, ConquerFear-Group participants experienced larger reductions in FCR (Cohen's d = 0.47, p = 0.001) and FCR severity (d = 0.57, p < 0.001), as well as mindfulness and decentering from baseline through follow-up, and improvements in emotion regulation (T2), worry (T2, T3) and rumination (T2) at some time points. CONCLUSIONS: The results demonstrated statistically significant and stable effects of ConquerFear-Group on FCR that were maintained over a 6-month period. It is suggested to investigate the program in a real-life setting, where a pragmatic trial can further demonstrate feasibility and effectiveness.


Subject(s)
Breast Neoplasms , Cancer Survivors , Phobic Disorders , Humans , Female , Breast Neoplasms/therapy , Breast Neoplasms/psychology , Cancer Survivors/psychology , Phobic Disorders/psychology , Psychosocial Intervention , Neoplasm Recurrence, Local/psychology , Fear/psychology
16.
J Cancer Surviv ; 2023 Jul 27.
Article in English | MEDLINE | ID: mdl-37495907

ABSTRACT

PURPOSE: Lung cancer remains underrepresented in cancer survivorship research. This study aimed to understand survivors' physical/psychological challenges, experiences of immunotherapy (IO) and targeted therapy (TT), and psychological adjustment through application of the Roberts et al. (2017) advanced cancer adaptation of Folkman and Greer's appraisal and coping model. METHODS: Adults 6-24 months post-initial treatment completion were recruited via an Australian cohort study. Participant demographic, clinical, quality of life, and distress data were obtained through the cohort database. Qualitative interviews were conducted and analyzed using Framework methods. Roberts et al. (2017)'s model informed data interpretation and presentation. RESULTS: Twenty interviews were conducted (10 females; average age 69 years). Participants' diagnostic stages varied (stage I = 2, stage II = 4, stage III = 8, stage IV = 6); most had received IO/TT (n = 14) and were on average 17 months (range 10-24) post-diagnosis. Three themes were identified and mapped to the Roberts' framework: (1) Ongoing illness events: most participants reported functioning well despite ongoing physical effects. Those on IO/TT reported side effects; some were unexpected/serious. (2) Adjusting to life with lung cancer: most expressed hope for the future while simultaneously preparing for disease progression. Those receiving IO/TT experienced uncertainty given limited survival information. (3) Learning to live with lung cancer: participants described emotion, problem, and meaning based on coping strategies. CONCLUSIONS: Findings may guide development of supportive care resources/interventions focused on uncertainty, IO/TT communication and decision-making, and coping. IMPLICATIONS FOR CANCER SURVIVORS: Many people with lung cancer are living well with their ongoing illness. Despite challenges, many survivors are adapting to issues as they arise and are maintaining a sense of hope and optimism.

17.
Breast Cancer Res Treat ; 201(3): 367-376, 2023 Oct.
Article in English | MEDLINE | ID: mdl-37480383

ABSTRACT

PURPOSE: Safe de-intensification of adjuvant radiotherapy (RT) for early breast cancer (BC) is currently under evaluation. Little is known about the patient experience of de-escalation or its association with fear of cancer recurrence (FCR), a key issue in survivorship. We conducted a cross-sectional study to explore this association. METHODS: Psychometrically validated measures including the Fear of Cancer Recurrence Inventory-Short Form were completed by three groups of women with early BC: Women in the PROSPECT clinical trial who underwent pre-surgical MRI and omitted RT (A), women who underwent pre-surgical MRI and received RT (B); and women who received usual care (no MRI, received RT; C). Between group differences were analysed with non-parametric tests. A subset from each group participated in a semi-structured interview. These data (n = 44) were analysed with directed content analysis. RESULTS: Questionnaires from 400 women were analysed. Significantly lower FCR was observed in Group A (n = 125) than in Group B (n = 102; p = .002) or Group C (n = 173; p = .001), and when participants were categorized by RT status (omitted RT vs received RT; p < .001). The proportion of women with normal FCR was significantly (p < .05) larger in Group A (62%) than in Group B (35%) or Group C (40%). Two qualitative themes emerged: 'What I had was best' and 'Coping with FCR'. CONCLUSIONS: Omitting RT in the setting of the PROSPECT trial was not associated with higher FCR than receiving RT. Positive perceptions about tailored care, lower treatment burden, and trust in clinicians appear to be protective against FCR.


Subject(s)
Breast Neoplasms , Female , Humans , Adaptation, Psychological , Breast Neoplasms/epidemiology , Breast Neoplasms/radiotherapy , Cross-Sectional Studies , Fear , Radiotherapy, Adjuvant/adverse effects
18.
Palliat Med ; 37(8): 1266-1279, 2023 09.
Article in English | MEDLINE | ID: mdl-37452564

ABSTRACT

BACKGROUND: Paramedic practice is diversifying to accommodate evolving global health trends, including community paramedicine models and growing expertise in palliative and end-of-life care. However, despite palliative care specific clinical practice guidelines and existing training, paramedics still lack the skills, confidence and clinical support to provide this type of care. AIM: To elicit paramedics', palliative care doctors and nurses', general practitioners', residential aged care nurses' and bereaved families and carers' experiences, perspectives, and attitudes on the role, barriers and enablers of paramedics delivering palliative and end-of-life care in community-based settings. DESIGN: A qualitative study employing reflexive thematic analysis of data collected from semi-structured online interviews was utilised. SETTING/PARTICIPANTS: A purposive sample of 50 stakeholders from all Australian jurisdictions participated. RESULTS: Five themes were identified: positioning the paramedic (a dichotomy between the life saver and community responder); creating an identity (the trusted clinician in a crisis), fear and threat (feeling afraid of caring for the dying), permission to care (seeking consent to take a palliative approach) and the harsh reality (navigating the role in a limiting and siloed environment). CONCLUSION: Paramedics were perceived to have a revered public identity, shaped by their ability to fix a crisis. However, paramedics and other health professionals also expressed fear and vulnerability when taking a palliative approach to care. Paramedics may require consent to move beyond a culture of curative care, yet all participant groups recognised their important adjunct role to support community-based palliative care.


Subject(s)
Caregivers , Paramedics , Humans , Aged , Paramedicine , Australia , Palliative Care , Qualitative Research , Family
19.
Psychooncology ; 32(8): 1173-1191, 2023 08.
Article in English | MEDLINE | ID: mdl-37303263

ABSTRACT

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.


Subject(s)
Caregivers , Neoplasms , Humans , Fear , Anxiety , Recurrence , Neoplasms/therapy , Neoplasm Recurrence, Local
20.
BMC Med Educ ; 23(1): 312, 2023 May 05.
Article in English | MEDLINE | ID: mdl-37147706

ABSTRACT

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.


Subject(s)
Breast Neoplasms , Cancer Survivors , Humans , Female , Australia , Fear , Breast Neoplasms/therapy , Medical Oncology , Multicenter Studies as Topic
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