Documentation of Symptoms in Children Newly Diagnosed With Cancer Highlights the Need for Routine Assessment Using Self-report.

BACKGROUND: Symptom management is a cornerstone of quality care and has the potential to vastly influence patient experiences. The supportive care needs of children, however, are not well described. OBJECTIVE: The aims of this study were to describe documentation about assessment and occurrence of symptoms in medical records of children with cancer and to compare the profile of documented symptoms with child self-report. METHODS: Twelve weeks of medical records of children (8-18 years) newly diagnosed with cancer were reviewed, and data were extracted regarding symptom assessment and occurrence. A second cohort of children attending oncology outpatients completed the electronic Symptom Screening in Pediatrics self-report of symptom bother. They also answered additional questions about other symptoms and the experience of self-report. We evaluated the profile of symptoms recorded as assessed by healthcare providers and self-reported by children. RESULTS: One thousand three hundred sixteen symptoms were identified in 3642 assessments. The symptoms most commonly documented by medical and nursing staff were nausea, pain, and appetite. Allied health staff most frequently documented fatigue, feeling scared, or sad. Forty-eight children completed self-report for the same symptoms and identified fatigue, appetite, and taste were the most bothersome. Children were positive about the experience of completing self-report. CONCLUSION: This study adds further to the evidence about the importance of obtaining information beyond routine clinical assessment from children themselves. IMPLICATIONS FOR PRACTICE: Healthcare providers do not routinely identify all distressing symptoms during clinical encounters. Use of patient-reported outcome measures in children is feasible and acceptable and empowers children to communicate about symptoms, which can facilitate prompt intervention.

Relationships Between Financial Toxicity and Symptom Burden in Cancer Survivors: A Systematic Review.

CONTEXT: Financial toxicity (FT) is used to describe the financial distress/hardship associated with cancer and its treatment. OBJECTIVES: The aim of this review was to explore the relationship between FT and symptom burden. METHOD: A systematic review was performed in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. We searched MEDLINE, EMBASE, and CINAHL (from January 2000 to January 2018) and accepted quantitative, mixed-methods and qualitative studies. Data were extracted and appraised by two reviewers. Owing to significant heterogeneity in the included studies, a narrative synthesis was performed. RESULTS: Nine studies involving 11,544 cancer survivors were included. Of these nine studies, eight were of high quality. The relationships between FT and psychological symptoms and physical symptoms were examined in eight and three studies, respectively. Six studies reported a positive relationship between FT and depression. Three studies found a positive association between FT and anxiety. Limited evidence was found for an association between FT and stress, fear of recurrence, spiritual suffering, pain, and overall symptom burden. CONCLUSIONS: A relatively clear association exists between FT and psychological symptoms. Clinicians should regularly screen for, assess, and manage emotional distress that may be attributed to FT. Although the causal pathway is not known, future intervention studies aimed at minimizing or preventing FT should evaluate psychological symptoms as secondary outcomes. Little is known about the relationships between FT and physical symptoms. Future research should overcome methodological limitations by incorporating longitudinal data collection, use of mixed-methods approaches, and homogeneity of samples.

How telehealth facilitates the provision of culturally appropriate healthcare for Indigenous Australians.

Introduction The aim of this study was to explore how telehealth facilitates or impedes the provision of culturally appropriate healthcare to Indigenous Australians from the perspective of staff at an Aboriginal Community Controlled Health Service (ACCHS). Methods An exploratory qualitative study was performed. Semi-structured interviews were conducted with nine ACCHS staff. Interview transcripts were analysed using thematic analysis. Results One central theme and three sub-themes were identified. The central theme of Care provided in a supportive environment describes how telehealth enabled specialist consultations to be conducted in the safe environment of an ACCHS instead of a mainstream health service. The first sub-theme described how telehealth improved affordability and convenience and brought a reduction in the stress of healthcare. The second sub-theme explained the importance of the presence of an Indigenous health worker to facilitate culturally appropriate healthcare. The third sub-theme described how telehealth supported a holistic view of health. Discussion Our findings show culturally appropriate healthcare may be enhanced by the use of telehealth because it allows care to be provided in the supportive environment of an ACCHS. It allows the community member to have the advocacy and assistance of an Indigenous health worker and reduces the burden of travel and dislocation from community and family.

Queensland Youth Cancer Service: A Partnership Model to Facilitate Access to Quality Care for Young People Diagnosed with Cancer.

Global recognition of the need to improve outcomes for adolescents and young adults (AYA) with cancer has led to the development of specific oncology programs and services. In Australia, Youth Cancer Services (YCS) are now established across the country. While each service has been shaped by nationally agreed principles, program development has been influenced by local policy and geographic differences. Queensland is a vast state with a widely dispersed population; coordination of cancer services for young people across this landscape presents unique challenges. The Queensland YCS (QYCS) work in a consultative partnership model with primary treating teams, across both pediatric and adult tertiary cancer services. Understanding how cancer services approach challenges and service development can provide guidance for other developing services. In this article, we describe the goals and development of QYCS and review the outcomes achieved in the service to date. We reviewed referral data and retrieved statewide clinical activity from the web-based data system. We compared these data with cancer registry data to identify disparities and areas for service development. While the service has achieved notable outcomes, challenges remain. These include recruitment of appropriately skilled and trained health professionals for this newly developing area of oncology. In addition, there is an ongoing need to advocate for this relatively small patient group, and to promote awareness and understanding of the need for AYA-specific services. With the dispersed population and concentration of services in metropolitan Brisbane, identifying and testing new innovative models, including telehealth, to reach all AYA diagnosed with cancer regardless of location of care are priorities.

Educational Needs of Health Professionals Caring for Adolescents and Young Adults with Cancer.

BACKGROUND: Young people with cancer have distinct clinical and psychosocial needs during and after cancer treatment. However, as adolescent and young adult (AYA) cancer is rare, and only recently recognized as specialty, health professionals may not have the skills, competence, and confidence to meet the needs of the young patient with cancer. The aim of this study was to identify the learning needs of health professionals providing cancer care to adolescents and young adults before and following the introduction of a state-wide AYA cancer education program. METHODS: A survey of educational needs of health professionals was undertaken in 2013 at the commencement of the Queensland Youth Cancer Service. The survey was used to develop the education program of the service. The education program was delivered across the state in a variety of formats, covering a range of topics throughout 2013-2016. The second survey was completed in 2017. Results were compared to identify if educational needs or the self-rated confidence of health professionals in regard to AYA cancer care had changed over time. RESULTS: One hundred twenty-two participants completed the first survey and 73 completed the second. The most prominent educational needs in 2013 were palliative care and biomedical topics such as understanding AYA growth and development as well as specific AYA cancers and treatment. The second survey identified that palliative care education remained important; however, there was a shift toward health professionals request for more psychosocial and practical education on topics including fertility, sexuality, and managing late effects. CONCLUSION: To provide high-quality healthcare to AYAs with cancer, health professionals require ongoing opportunities for education and training.

The Development of a Telemedicine Planning Framework Based on Needs Assessment.

Providing equitable access to healthcare services in rural and remote communities is an ongoing challenge that faces most governments. By increasing access to specialty expertise, telemedicine may be a potential solution to this problem. Regardless of its potential, many telemedicine initiatives do not progress beyond the research phase, and are not implemented into mainstream practice. One reason may be that some telemedicine services are developed without the appropriate planning to ascertain community needs and clinical requirements. The aim of this paper is to report the development of a planning framework for telemedicine services based on needs assessment. The presented framework is based on the key processes in needs assessment, Penchansky and Thomas's dimensions of access, and Bradshaw's types of need. This proposed planning framework consists of two phases. Phase one comprises data collection and needs assessment, and includes assessment of availability and expressed needs; accessibility; perception and affordability. Phase two involves prioritising the demand for health services, balanced against the known limitations of supply, and the implementation of an appropriate telemedicine service that reflects and meets the needs of the community. Using a structured framework for the planning of telemedicine services, based on need assessment, may help with the identification and prioritisation of community health needs.

Outcomes of using telehealth for the provision of healthcare to Aboriginal and Torres Strait Islander people: a systematic review.

OBJECTIVE: To examine reported outcomes of health services delivered by telehealth to Indigenous Australians. METHODS: Systematic review of the literature. Searches were conducted to identify articles that reported a telehealth service used to provide clinical services to Indigenous Australians. Articles were screened for inclusion using pre-defined criteria. Findings were synthesised narratively and reported using the preferred reporting items for systematic reviews and meta-analyses (PRISMA) guidelines. RESULTS: 14 articles, describing 11 distinct telehealth services, were selected based on the inclusion criteria. Authors of included studies report that telehealth has improved social and emotional wellbeing, clinical outcomes and access to health services for Indigenous Australians. Further, it has reduced travel and improved screening rates. Indigenous people report positive perceptions of their telehealth interaction. CONCLUSION: Telehealth is used to address poor accessibility to health services and for targeted screening programs for at risk populations. Reported outcomes from existing services demonstrate the potential of telehealth for health service delivery for Indigenous Australians. Confidence in the findings of this review is reduced by the predominance of descriptive studies and small sample sizes in many of the included articles. IMPLICATIONS: Telehealth models of care facilitated through partnerships between Aboriginal community-controlled health services and public hospitals may improve both patient outcomes and access to specialist services for Indigenous people.

Awareness, experiences and perceptions of telehealth in a rural Queensland community.

BACKGROUND: Telehealth can offer alternative options for receiving healthcare services in rural locations, improving access and reducing costs associated with traveling for services. However, the full potential of telehealth has not been realised with slow and fragmented uptake. This study describes the awareness, experiences and perceptions of telehealth in an Australian rural community. METHODS: Semi-structured interviews were undertaken with 47 participants from three rural towns in the Darling Downs region of Queensland. Content analysis was used to abstract themes and core concepts from the interviews. RESULTS: Three participants were healthcare providers who had all previously used telehealth in their clinical practice. Twenty-seven (57 %) participants regularly travelled to access specialist healthcare. While 28 (60 %) participants were aware of telehealth, only six (13 %) had actually used telehealth services; three as patients and three as healthcare providers. Major themes evident included: acceptance of the need to travel; paternalism and empowerment; and trust and misconceptions. CONCLUSIONS: For telehealth initiatives to be successful, there needs to be greater public awareness and understanding of the potential benefits of telehealth. Empowering patients as partners in the delivery of healthcare may be an important factor in the growth of telehealth services.

Paediatric palliative care by video consultation at home: a cost minimisation analysis.

BACKGROUND: In the vast state of Queensland, Australia, access to specialist paediatric services are only available in the capital city of Brisbane, and are limited in regional and remote locations. During home-based palliative care, it is not always desirable or practical to move a patient to attend appointments, and so access to care may be even further limited. To address these problems, at the Royal Children's Hospital (RCH) in Brisbane, a Home Telehealth Program (HTP) has been successfully established to provide palliative care consultations to families throughout Queensland. METHODS: A cost minimisation analysis was undertaken to compare the actual costs of the HTP consultations, with the estimated potential costs associated with face-to face-consultations occurring by either i) hospital based consultations in the outpatients department at the RCH, or ii) home visits from the Paediatric Palliative Care Service. The analysis was undertaken from the perspective of the Children's Health Service. The analysis was based on data from 95 home video consultations which occurred over a two year period, and included costs associated with projected: clinician time and travel; costs reimbursed to families for travel through the Patients Travel Subsidy (PTS) scheme; hospital outpatient clinic costs, project co-ordination and equipment and infrastructure costs. The mean costs per consultation were calculated for each approach. RESULTS: Air travel (n = 24) significantly affected the results. The mean cost of the HTP intervention was $294 and required no travel. The estimated mean cost per consultation in the hospital outpatient department was $748. The mean cost of home visits per consultation was $1214. Video consultation in the home is the most economical method of providing a consultation. The largest costs avoided to the health service are those associated with clinician time required for travel and the PTS scheme. CONCLUSION: While face-to-face consultations are the gold standard of care, for families located at a distance from the hospital, video consultation in the home presents an effective and cost efficient method to deliver a consultation. Additionally video consultation in the home ensures equity of access to services and minimum disruption to hospital based palliative care teams.