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PURPOSE: To develop and establish expert consensus on essential elements of optimal dietary and exercise referral practices for cancer survivors. METHODS: A four-round modified, Delphi method (face-to-face and electronic). In round 1, initial statements were drafted based on Cancer Australia's Principles of Cancer Survivorship and input from key stakeholders through a cancer preconference workshop. In round 2, the initial statements were distributed to a panel (round 1 participants) to establish consensus by rating the importance of each statement using a five-point Likert scale. Statements that required significant changes in wording were redistributed to panel members in round 3 for voting. Round 4 was for consumers, requiring them to rate their level of agreement of final statements. RESULTS: In total, 82 stakeholders participated in round 1. Response rates for survey rounds 2 and 3 were 59% (n = 54) and 39% (n = 36). Panel members included nurses (22%), dietitians (19%), exercise professionals (16%), medical practitioners (8%), and consumers (4%). The mean "importance" rating for all essential elements was 4.28 or higher (i.e., fairly important, or very important). Round 4's consumer-only engagement received responses from 58 consumers. Overall, 24 elements reached consensus following some revised wording, including the development of three new statements based on panel feedback. CONCLUSION: Our developed essential elements of optimal dietary and exercise referral practices can help provide guidance to medical and nursing health professionals relevant to dietary and exercise referral practices. Future research should conduct an implementation intervention and evaluation of these essential elements to optimise dietary and exercise care in cancer survivors.
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Supervivientes de Cáncer , Neoplasias , Humanos , Consenso , Técnica Delphi , Personal de Salud , Derivación y Consulta , Neoplasias/terapiaRESUMEN
OBJECTIVE: There is a lack of research on interventions that address the specific psychosocial needs of people with brain tumour and their families. This paper describes the protocol for a pragmatic randomised control trial (RCT) evaluating the clinical efficacy and cost-effectiveness of the Making Sense of Brain Tumour program delivered via telehealth (Tele-MAST) relative to standard care. METHODS: The 148 adults with primary brain tumour will be randomly allocated to the 10-session Tele-MAST videoconferencing program or standard care from a cancer counselling service. The primary outcome is level of depression and secondary outcomes are quality of life, mental health and incremental cost per quality-adjusted life year. The mental health and quality of life of family members will also be assessed. Assessments will be conducted at pre-intervention, post-intervention (primary endpoint), 6-weeks post-intervention and 6-months post-intervention. The main analysis will determine whether the Tele-MAST intervention is more effective than standard care at post-intervention, and whether these effects are sustained at follow-up. CONCLUSION: Results will indicate whether the Tele-MAST program is associated with better clinical outcomes and is more cost-effective than existing cancer support services. Such outcomes will contribute to effective and accessible psychosocial care for the brain tumour population.
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Neoplasias Encefálicas/rehabilitación , Telerrehabilitación/métodos , Adolescente , Adulto , Anciano , Salud de la Familia , Humanos , Persona de Mediana Edad , Selección de Paciente , Queensland , Ensayos Clínicos Controlados Aleatorios como Asunto , Tamaño de la Muestra , Apoyo Social , Resultado del Tratamiento , Comunicación por Videoconferencia , Adulto JovenRESUMEN
OBJECTIVE: Despite improved recognition regarding the importance and association between provision of high quality information for people affected by cancer and improved outcomes and experiences; gaps and unmet needs are still reported. As oncology health information provision increasingly moves online, understanding how service users experience and manage misinformation is important. Determining patient and carer preferences regarding cancer provision is needed to address outstanding gaps. METHODS: This study utilised a purpose-built national cross-sectional survey distributed via social media to assess perspectives regarding cancer information in Australia. Quantitative and qualitative (open text) items assessed respondents' perspectives regarding current inforation preferences and gaps, and experiences with accessing information online. RESULTS: A total of 491 people affected by cancer completed the survey. Respondents highlighted a preference for information that better addresses the diversity of cancer experience, and is more timely and responsive to personal situation and care context. Despite increasing attention to health literacy standards, complex medical jargon and terminology remains prevalent. Many respondents have concerns about misinformation, and seek improved mechanisms or skills to assist with determining the trustworthiness and relevance of information found online. CONCLUSIONS: Survey responses identified current gaps in information provision for people affected by cancer. Personalised information in formats which are more flexible, accessible, and responsive to user needs are required. PRACTICE IMPLICATIONS: Education and resources to target and improve digital health literacy and combat health misinformation are needed. Novel solutions co-designed by people affected by cancer will ensure that information is provided in a manner that is relevant, timely, and personalised.
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Alfabetización en Salud , Neoplasias , Comunicación , Estudios Transversales , Humanos , Neoplasias/terapia , Encuestas y CuestionariosRESUMEN
AIM: Cancer and its treatment produce significant acute and long-term adverse effects in cancer survivors, resulting in a range of supportive cancer care needs across the disease trajectory. To enhance supportive cancer care in Australia, this study sought to understand and describe conventional services offered nationwide, specific to their structure (ownership, setting, duration), process (participants, delivery mode, referral pathways), and outcomes (evaluation). METHODS: A survey canvassing 13 conventional supportive cancer care interventions was electronically distributed to 265 cancer organizations in all Australian states and territories over 2019 and 2020. Cancer organizations were invited to participate if they provided at least one cancer-directed treatment (ie, surgery, radiation therapy, or systemic therapies); or clinical cancer care to adults, adolescents, or children; or conventional supportive care interventions to cancer survivors. RESULTS: A response rate of 46% (n = 123/265) was achieved, with 72% of cancer organizations (n = 88) delivering at least one intervention. Most were provided as outpatient or inpatient services, with few at home (<13%) or via telehealth (<10%). Psychological therapy (90%), self-care (82%), exercise (77%), healthy eating (69%), and lymphedema (69%) services were most common. Fatigue management (51%) and pelvic health (32%) were less common. Services offering massage, return-to-work, cognitive therapy, sleep hygiene, and leisure were underrepresented (<31%). CONCLUSION: Provision of conventional supportive cancer care services continues to evolve in Australia. Multiple areas of care require development of dedicated services to address supportive cancer care intervention shortfalls across the country. Online resources and telemedicine are currently underutilized modalities that are available for further development.
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Supervivientes de Cáncer , Neoplasias , Adolescente , Adulto , Australia/epidemiología , Supervivientes de Cáncer/psicología , Niño , Atención a la Salud , Humanos , Neoplasias/psicología , Neoplasias/terapia , Encuestas y CuestionariosRESUMEN
INTRODUCTION: Cancer-related fatigue (CRF) is one of the most common and debilitating adverse effects of cancer and its treatment reported by cancer survivors. Physical activity, psychological interventions and management of concurrent symptoms have been shown to be effective in alleviating CRF. This pilot randomised controlled trial (RCT) will determine the feasibility of a telehealth CRF clinic intervention (T-CRF) to implement evidence-based strategies and assess the impact of the intervention on CRF and other clinical factors in comparison to usual care. METHODS AND ANALYSIS: A parallel-arm (intervention vs usual care) pilot RCT will be conducted at the Princess Alexandra Hospital in Queensland, Australia. Sixty cancer survivors aged 18 years and over, who report moderate or severe fatigue on the Brief Fatigue Inventory and meet other study criteria will be recruited. Participants will be randomised (1:1) to receive the T-CRF intervention or usual care (ie, specialist-led care, with a fatigue information booklet). The intervention is a 24-week programme of three telehealth nurse-led consultations and a personalised CRF management plan. The primary objective of this pilot RCT is to determine intervention feasibility, with a secondary objective to determine preliminary clinical efficacy. Feasibility outcomes include the identification of recruitment methods; recruitment rate and uptake; attrition; adherence; fidelity; apathy; and intervention functionality, acceptability and satisfaction. Clinical and resource use outcomes include cancer survivor fatigue, symptom burden, level of physical activity, productivity loss, hospital resource utilisation and carer's fatigue and productivity loss. Descriptive statistics will be used to report on feasibility and process-related elements additional to clinical and resource outcomes. ETHICS AND DISSEMINATION: This trial is prospectively registered (ACTRN12620001334998). The study protocol has been approved by the Metro South Health and Hospital Services Human Research Ethics Committee (MSHHS HREC/2020/QMS/63495). Findings will be disseminated through peer-reviewed publications, national and international conferences and seminars or workshops. TRIAL REGISTRATION NUMBER: Australian New Zealand Clinical Trials Registry ID: ACTRN12620001334998; Pre-results. Trial Version: Version 1.1. Last updated 10 December 2020.