Family adjustment and resilience after a parental cancer diagnosis.

PURPOSE: To explore the resources, parents with cancer and their partners draw upon to sustain their family resilience through the cancer experience. METHODS: Fifteen participants who were parents of children aged 8 to 25 years completed phone, audio-recorded, and semi-structured interviews. Of these participants, 11 were parents diagnosed with cancer, and four were partners of a parent diagnosed with cancer. Interview questions aimed to increase understanding about how families communicate, connect, and face challenges from the cancer experience. Interview data was analysed using inductive thematic analysis to provide scope to generate themes from parent's experiences rather than to test pre-existing frameworks. RESULTS: The thematic analysis of interview transcripts generated three key themes related to family resilience: (1) adaptability to changes in roles and routines, (2) open communication within the family, and (3) accepting support from others. CONCLUSION: This study found that parents' ability to use personal resources when faced with significant challenges helped to improve the resilience of parents' family system. Further research is needed to understand the factors that influence family resilience when a parent is diagnosed with cancer. Implications for the development of targeted interventions that provide support to not only the patient, but their whole family system will be discussed.

Interventions to support adherence to oral anticancer therapies: research challenges, lessons learned, and strategies to overcome them from Australia and Switzerland.

Not monitoring adherence to oral anticancer therapies (OAT) can lead to poor clinical outcomes, including premature death as reported by Foulon et al. (Acta Clin Belg 66(2):85-96, 2011) and Greer et al. (Oncologist 21(3):354-76, 2016). Barriers to the implementation of supportive cancer care interventions in medication adherence occur with multiple hospital sites, cancer diagnoses, and numerous healthcare professionals. This commentary describes challenges and strategies from two OAT adherence trials in Australia and Switzerland to assist researchers in the design and implementation of future interprofessional trials.

Understanding the strategies rural cancer patients and survivors use to manage financial toxicity and the broader implications on their lives.

PURPOSE: To explore strategies rural Australians use to cope with the financial consequences of their cancer diagnosis and how that impacts on their lives. METHODS: Twenty adult cancer patients/survivors residing in regional-remote areas of Australia were purposively sampled and participated in audio-recorded, semi-structured interviews. When data saturation was reached, thematic analysis was employed to analyse the data. RESULTS: Participants were 20-78 years (M=60), 70% female, 35% were undergoing treatment and the remaining 65% had finished treatment within the past 5 years. Three themes provide context to rural financial toxicity-related experiences (travelling to access cancer treatment away from home is expensive, being single or lacking family support exacerbates the financial strain, and no choice other than to adopt cost-saving strategies if wanted to access treatment). Strategies commonly employed to minimise financial toxicity include: accessing travel-related support, changes to lifestyle (buying cheaper food, saving on utilities), accessing savings and retirement funds, missing holidays and social activities, reduced car use and not taking a companion to cancer-related appointments at metropolitan treatment areas. Although cost-saving strategies can effectively increase the ability of rural people to cover cancer treatment-related and other costs, most have broader negative psychological, social and practical consequences for them and their families. CONCLUSIONS: Increasing rural cancer patients' and survivors' awareness of various cost-saving strategies and their impact (positive and negative) may decrease their risk of experiencing financial toxicity and unexpected unintended consequences of adopting cost-saving measures.

The psychosocial experiences and supportive care preferences of organ transplant recipients and their carers who live in regional Australia.

BACKGROUND: There is no evidence that being a rural or regional organ transplant recipient has adverse physical health outcomes post-surgery compared with those experienced by people living in cities, but the impact of living remotely from transplant centres on psychosocial outcomes has not been explored. OBJECTIVE: To identify the social, emotional, psychological, spiritual, informational and practical issues associated with being a regionally based organ transplant recipient or carer and determine how support services could be improved for this group. DESIGN/ SETTING/ PARTICIPANTS: Twenty-two purposively sampled adult Australians who lived outside metropolitan centres and had received an organ transplant (n = 15) or were the primary carer of someone who had received one (n = 7), participated in semi-structured, telephone interviews. Qualitative data were collected until data saturation was reached and were analysed using thematic analysis. RESULTS: Five key themes (plus subthemes) were identified: (a) travelling for specialist transplant care takes a toll, (b) unique transplant-related psychological and emotional issues experienced before and after transplants, (c) caring for transplant recipients is a demanding role, (d) lay, peer and professional support, including rural general practitioners and accommodation facilities, help ease the burden, but (e) significant barriers to accessing transplant-focused psychosocial support exist. CONCLUSION: Novel methods of delivering targeted, transplant-specific information and psychosocial care to rural transplant recipients and their carers, employers and rural health professionals require development and evaluation. Strategies might be delivered by peers or professionals via telehealth, telephone, social media or websites for example, depending on preferences and level of need.

A review of factors influencing non-adherence to oral antineoplastic drugs.

PURPOSE: Adherence to oral antineoplastic drugs is a complex phenomenon, and knowledge about the reasons that people with cancer do not adhere to their prescriptions is essential to inform adherence-related support in clinical and research contexts. This study aims to provide an up-to-date summary of the key reasons for non-adherence to oral antineoplatic drugs (OAD) in people with cancer. METHODS: Electronic databases Medline, Embase, Emcare, and PsychINFO were searched for systematic reviews and studies published between January 2010 and March 2018. Data was analyzed and extracted by two independent reviewers. RESULTS: Three systematic reviews and two studies were included in the review. Key factors for non-adherence were classified as either modifiable or non-modifiable factors. Side effects, forgetfulness, and poor knowledge about OAD were identified as modifiable factors while co-payment, age, regimen complexity. and time since diagnosis were identified as non-modifiable factors. Most of the included studies focused on breast cancer and chronic myeloid leukemia (CML) patients. Low methodological quality and different adherence cut-off rates were observed in the included literature. CONCLUSIONS: More research with rigorous methodology and diverse cancer types is needed to increase evidence on the reasons for OAD non-adherence. However, findings from this study may serve to aid in drafting guidelines and suitable interventions for adherence-related support to OAD users.

Childhood cancer models of survivorship care: a scoping review of elements of care and reported outcomes.

PURPOSE: This study aimed to systematically map elements of care and respective outcomes described in the literature for different models of post-treatment care for survivors of childhood cancer. METHODS: MEDLINE, CINAHL, and Embase were searched with combinations of free text terms, synonyms, and MeSH terms using Boolean operators and are current to January 2024. We included studies that described post-treatment cancer survivorship models of care and reported patient or service level elements of care or outcomes, which we mapped to the Quality of Cancer Survivorship Care Framework domains. RESULTS: Thirty-eight studies with diverse designs were included representing 6101 childhood cancer survivors (or their parent/caregiver) and 14 healthcare professionals. A diverse range of models of care were reported, including paediatric oncologist-led long-term follow-up, multi-disciplinary survivorship clinics, shared-care, and primary care-led follow-up. Elements of care at the individual level most commonly included surveillance for cancer recurrence as well as assessment of physical and psychological effects. At the service level, satisfaction with care was frequently reported but few studies reported how treatment-related-late effects were managed. The evidence does not support one model of care over another. CONCLUSIONS: Gaps in evidence exist regarding distal outcomes such as costs, health care utilization, and mortality, as well as understanding outcomes of managing chronic disease and physical or psychological effects. The findings synthesized in this review provide a valuable reference point for future service planning and evaluation. IMPLICATIONS FOR CANCER SURVIVORS: Decades of research highlight the importance of survivorship care for childhood cancer survivors who are at risk of serious treatment-related late effects. This review emphasizes there is no single, 'one-size fits all' approach for delivering such care to this vulnerable population.

Feasibility of Weekly Electronic Patient- and Proxy-Reported Outcome Measures in Pediatric Oncology.

BACKGROUND: Electronic patient-reported outcome measures (ePROMs) benefit adult cancer care, but their use in pediatric cancer care is limited. OBJECTIVES: To explore the feasibility of collecting weekly ePROMs from pediatric cancer patients and/or their caregivers and to describe children's levels of symptom burden, distress, and cancer-related quality of life. METHODS: A prospective and longitudinal cohort study was undertaken at one tertiary children's cancer center. Children (2-18 years)/caregivers completed ePROMs with validated measures for distress, symptom burden, and cancer-related quality of life weekly for 8 weeks. RESULTS: Seventy children/caregivers participated in the study, and 69% completed ePROMs at all 8 weeks. Distress and cancer-related quality of life significantly improved over time. However, at week 8, almost half of the participants still reported high levels of distress. Symptom burden decreased over time, with the youngest and the oldest age groups (2-3 and 13-18 years) reporting the highest number of symptoms with severe burden. CONCLUSIONS: Weekly collection of ePROMs in pediatric cancer care is feasible. Although distress, quality of life, and symptom burden improve over time, there is a need for timely assessment and interventions to improve symptoms, high levels of distress, and issues that negatively affect quality of life. IMPLICATIONS FOR PRACTICE: Nurses are ideally placed to intervene, assess, and monitor symptoms and to provide symptom management advice to pediatric cancer patients and caregivers. Findings from this study may inform the design of models of pediatric cancer care to improve communication with the healthcare team and patient experience of care.

Care at Your Fingertips: Codesign, Development, and Evaluation of the Oncology Hub App for Remote Symptom Management in Pediatric Oncology.

PURPOSE: To codesign, develop, and evaluate a smartphone app that includes patient-reported measures of symptoms and real-time advice in children's cancer. METHODS: The Oncology Hub is a comprehensive approach to symptom management that includes a suite of codesigned tools and resources including clinical algorithms to determine the level of concern, symptom management advice, and resources for families of children with cancer. The evaluation involved Think Aloud interviews with parent and adolescent patients to complete tasks in the app as well as a User Experience questionnaire (score range, 0-120) and qualitative feedback. The accuracy of algorithms was determined by repeated testing of inputs and outputs over 4 weeks. RESULTS: Design and wireframes were iteratively refined through consultation with parents and adolescents confirming the final design. Beta testing evaluation was then completed by 25 participants including two adolescents. Across all participants, 84% of tasks were easy to navigate, and the Oncology Hub demonstrated high usability, usefulness, and acceptability with participants' scores ranging between 90 and 120 (mean = 112.2, standard deviation = 9.43). Qualitative feedback was positive. Testing of algorithms identified inconsistencies in understanding between clinical research and coding teams; refinements were made until the expected response notifications were returned with 100% accuracy. CONCLUSION: Technology offers new ways to think about how clinicians and families communicate and share information to harness the best of community and hospital services. Understanding how information is exchanged using health apps, and how this affects clinical workflow is critical to successful implementation, and optimizing symptom assessment and management in children with cancer.

A smartphone program to support adherence to oral chemotherapy in people with cancer: Proof-of-concept trial.

AIM: Nonadherence to oral chemotherapy (OC) can lead to health complications, including premature death. Mobile phones are increasingly used to deliver medication adherence interventions. However, there is limited evidence about mobile phone-based interventions to increase adherence to OC, specifically. This study explores the proof-of-concept of a smartphone program to support adherence to OC in people with cancer. METHODS: This was a 10-week, nonrandomized, multisite trial. The outcomes assessed were acceptability, satisfaction with the intervention, adherence to OC, knowledge about OC, and side-effects presence and severity. The program consisted of short message service (SMS) reminders to take OC, as well as information about OC, including the management of side-effects. RESULTS: Twenty-two participants (17-74 y/o, median age 60 y/o) were recruited at six hospitals. The sample included 10 different cancer diagnoses (predominance of breast cancer) and 11 OC medications. Acceptability of the intervention was high, with 95% of the enrolled participants completing postintervention measures, and 81% reporting high satisfaction with the program. The intervention was found to have no effect on supporting adherence to OC (assessed by self-report and medication event monitoring system) in this sample. An increase in knowledge about OC was observed at postintervention (p = 0.010). CONCLUSIONS: This study demonstrated proof-of-concept of the smartphone program and highlighted the need for intervention and trial design-related refinements. Future work should evaluate the effect of the program on adherence to OC with nonadherent patients.

Improving Survivors' Quality of Life Post-Treatment: The Perspectives of Rural Australian Cancer Survivors and Their Carers.

The transition from urban centres back to rural and remote communities can be challenging for rural cancer survivors after treatment. This study aimed to (a) provide deeper understanding of the experiences of rural survivors who have completed active cancer treatment and returned to their rural communities, and (b) determine strategies to re-orient existing services or develop new interventions to more appropriately meet rural survivors' service preferences and needs. Semi-structured interviews were conducted with 22 adults (64% female) who lived outside of a metropolitan area and had completed active cancer treatment (n = 13), were the carer for a rural/remote cancer survivor (n = 6), or were both a survivor and carer (n = 3). Thematic analysis was conducted to identify dominant themes in the qualitative data. A range of physical, psychological and practical challenges that impact quality of life among rural survivors post-treatment were found. These challenges appeared to be compounded by a lack of trust in local rural healthcare services and a lack of clear post-treatment pathways to quality of life-enhancing support services. Acceptable strategies to overcome barriers included nurse-led, telephone-based, or face-to-face interventions, initiated and continued by the same service provider, and that included support to manage emotional challenges associated with post-treatment survivorship. The findings will inform the design of interventions to better meet rural cancer survivors' post-treatment support needs.

Choosing and Managing Aged Care Services from Afar: What Matters to Australian Long-Distance Care Givers.

This research aims to identify the factors that influence caregivers' decisions about the aged care providers they select for their elder relatives when caring from a distance and what they value once they have engaged a service. Adult long-distance carers for older relatives living within Australia were purposively sampled and they participated in audio-recorded interviews. A thematic analysis was employed to investigate the data. A sample of 13 participants enabled data saturation with no new major themes identified in the final three interviews. Participants were 50 to 65 years (Mean = 59.8) and mostly (77%) female. Four themes emerged relating to selection of care providers: (1) availability of care, (2) financial arrangements, (3) proximity and location, and (4) reputation of care provider. Five themes detailed valued qualities of care: (1) vigilant monitoring and responsivity, (2) communication with family, (3) flexibility and proactiveness of care, (4) staffing, and (5) access to appropriate and holistic care to maintain wellbeing. Long-distance caregivers face barriers in selecting and managing aged care services from afar within a complex Australian aged care system. They strongly value regular, proactive communication about the wellbeing of their relatives and may be particular beneficiaries of communication and assistive monitoring technologies.

Online psychosocial interventions for posttreatment cancer survivors: an international evidence review and update.

PURPOSE OF REVIEW: The present review describes recent research on online psychosocial interventions for posttreatment cancer survivors from January 2018 to June 2019. RECENT FINDINGS: Twenty-three studies were included in the review (the majority included were feasibility studies and only five randomized controlled trials had large samples). Websites were the most common platforms for intervention delivery (9/23) and cognitive behavioral therapy was the most frequently used therapeutic approach (11/23). Three interventions based on this framework and delivered via websites or combined website-telehealth platforms showed to be effective in improving psychosocial issues (fear of cancer recurrence, insomnia, sleep quality, and prospective memory failures) in posttreatment cancer survivors. Web-based self-compassion writing was also found to be effective in addressing body image distress and body appreciation in breast cancer survivors. Feasibility studies mostly showed online interventions to be plausible and acceptable to cancer survivors. A good representation of online interventions for young adult cancer survivors (30%) was found. SUMMARY: Online interventions show promise in addressing the psychosocial needs of cancer survivors. Despite new online interventions being found to be feasible and acceptable and some showing promise in addressing important psychosocial issues in cancer survivors posttreatment, more rigorous studies are required to inform supportive care for this population.

Online interventions aimed at reducing psychological distress in cancer patients: evidence update and suggestions for future directions.

PURPOSE OF REVIEW: A great proportion of people affected by cancer experience psychological distress. To reduce pressure on limited health-management resources available, evidence-based eHealth or online interventions can fill an important gap by making psychosocial care more easily accessible. However, evidence of their effectiveness is mixed. This present review provides an update on the effectiveness of online interventions in reducing psychological distress in patients with cancer by including studies published from January 2018 to September 2019. RECENT FINDINGS: Thirty-three publications describing online interventions were included in the review, including web-based, blended care, telehealth, mHealth, and other online interventions. There was great heterogeneity across studies. The evidence of online interventions' effectiveness in reducing distress was mixed; there was partial support for reduction in psychological distress and depression, but limited evidence for reducing anxiety. Some important limitations should be taken into account when interpreting the results. SUMMARY: Online interventions for people affected by cancer, in general, are well received and seem to be a necessary component of comprehensive cancer care. However, these interventions should be more rigorously tested to provide more conclusive evidence about their effectiveness.

Development of a Smartphone Program to Support Adherence to Oral Chemotherapy in People with Cancer.

PURPOSE: To describe the theoretical, evidence-based and consumer-informed development of a smartphone self-management program aiming to support adherence to oral chemotherapy in adolescents and adults diagnosed with cancer. METHODS: The design of the program followed two frameworks for the development and evaluation of mHealth interventions and was conducted in three steps: 1) conceptualization, which involved an extensive literature review and a scoping review that led to the identification of the behavioral change strategies in the program; 2) definition of features and structure, based on a formative study with end-users to explore their preferences about the structure and elements of the program; and 3) selection of program delivery technology, whereby available technology platforms were examined and the most suitable tool to deliver the program was selected. RESULTS: Three main reasons for oral chemotherapy non-adherence were identified: forgetfulness, side-effects and poor knowledge about oral chemotherapy. Key behavior change strategies were also identified, namely, medication intake reminders and information about oral chemotherapy and managing side-effects. Based upon end-user feedback the method of delivery of these behavioral strategies that was deemed most appropriate was conventional text messages. The reminders were standard, short, text-only messages sent when each oral chemotherapy dose was due, one way (no need to reply) and addressed the end-users using their first name. Delivery of information about oral chemotherapy and side-effects was tailored to each individual's preferred frequency. CONCLUSION: The careful design process described in this paper may serve to inform the development of future mobile phone-based medication adherence-enhancing interventions for people with cancer. A trial to explore end-users acceptability of and satisfaction with the intervention is currently underway.Trial Registration: ACTRN12618001987257p.

Mobile-Based Oral Chemotherapy Adherence-Enhancing Interventions: Scoping Review.

BACKGROUND: Adherence to oral chemotherapy is crucial to maximize treatment outcomes and avoid health complications in cancer patients. Mobile phones are widely available worldwide, and evidence that this technology can be successfully employed to increase medication adherence for the treatment of other chronic diseases (eg, diabetes) is well established. However, the extent to which there is evidence that mobile phone-based interventions improve adherence to oral chemotherapy is unknown. OBJECTIVE: This scoping review aims to explore what is known about mobile phone-delivered interventions designed to enhance adherence to oral chemotherapy, to examine the reported findings on the utility of these interventions in increasing oral chemotherapy adherence, and to identify opportunities for development of future interventions. METHODS: This study followed Arksey and O'Malley's scoping review methodological framework. RESULTS: The review search yielded 5 studies reporting on 4 interventions with adults (aged >18 years) diagnosed with diverse cancer types. All interventions were considered acceptable, useful, and feasible. The following themes were evident: text messages and mobile apps were the main methods of delivering these interventions, the 2 most commonly employed oral chemotherapy adherence-enhancing strategies were management and reporting of drug-related symptoms and reminders to take medication, the importance of stakeholders' engagement in intervention design, and the overall positive perceptions of delivery features. Areas for future research identified by this review include the need for further studies to evaluate the impact of mobile phone-delivered interventions on adherence to oral chemotherapy as well as the relevance for future studies to incorporate design frameworks and economic evaluations and to explore the moderator effect of high anxiety, poor baseline adherence, and longer time taking prescribed drug on adherence to oral chemotherapy. CONCLUSIONS: Despite the increasing body of evidence on the use of mobile phones to deliver medication adherence-enhancing interventions in chronic diseases, literature on the oral chemotherapy context is lacking. This review showed that existing interventions are highly acceptable and useful to cancer patients. The engagement of stakeholders as well as the use of a design framework are important elements in the development of mobile phone-delivered interventions that can be translated into oncology settings.