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Background: Telehealth has the potential to improve access to specialist rheumatology services. The timely and appropriate delivery of care to those living with rheumatological diseases is crucial to ensuring excellent long-term outcomes. Introduction: The outcomes of a tele-rheumatology service delivered to regional hospital outpatient clinics were evaluated with patient perspectives and acceptability analyzed. Materials and Methods: A tele-rheumatology clinic was commenced in Australia from a metropolitan hospital to five regional clinics. The model of care included a trained nurse at the spoke site linked to a rheumatologist from the hospital hub site for follow-up consultations of stable review patients using videoconferencing. Surveys assessing perspectives on the tele-rheumatology encounter were completed and a subsample participated in focus groups to further explore acceptability. Results: Forty-eight patients with a diverse range of conditions participated. Patient travel was reduced on average by 95 km and 42% avoided time off work. Eighty-eight to 100% of participants agreed/strongly agreed with statements relating to acceptability, quality of physician–patient interaction, and nurse involvement. Twenty-nine percent expressed the need for a physical examination by a specialist rheumatologist and 25% felt that an in-person consultation would establish better patient–physician rapport. Qualitatively, participants viewed tele-rheumatology as equivalent to in-person care after an initial adjustment period. Discussion: Tele-rheumatology through videoconferencing for follow-up of patients with established disease is acceptable to patients and demonstrates the potential to improve time, travel, and cost burdens placed on patients who live remotely compared with traditional, face-to-face rheumatology care. Conclusions: Implementation of sustainable and patient acceptable models of tele-rheumatology care may allow timely access to all patients living with rheumatological conditions. [ABSTRACT FROM AUTHOR]

Introduction: Access to telehealth services for children living in rural and remote areas of Australia is very limited. The delivery of allied health therapies to children in school via telehealth may help reduce inequality and improve academic outcomes over time.Methods: A service delivering speech and language therapy (SLT) and occupational therapy (OT) via videoconferencing to children at five rural schools was prospectively evaluated. Each child’s teacher rated their speech and language, participation in class and educational outcomes at the beginning and end of semester. Change in the summative teacher-rating index over the first and subsequent semesters in which a child received therapy was examined. Independent predictors of change were identified using multivariable linear regression.Results: Over two years, 1029 sessions of SLT and 531 sessions of OT were delivered to 98 children (67% male, 38% in Prep at commencement) via telehealth. In their first semester of therapy, 57 children received SLT, 37 OT and four both therapies. The mean teacher-rating index significantly improved from the beginning (35.05 ± 10.68) to end (40.02 ± 11.75) of the first semester of therapy (p < 0.001). In multivariable linear regression, grade, school and baseline rating were significantly associated with the end-of-semester teacher-rating index.Discussion: Delivering allied health therapy by videoconference may enable children to better engage with schooling. Differences in improvements by grade suggest improvements may be maximised by targeting therapy at certain year levels. This model may be useful in areas with limited access to allied health services. [ABSTRACT FROM AUTHOR]

Introduction Prevalence of hepatitis C virus (HCV) is substantially higher among prisoners than the general population. In Australia until recently, only a small proportion of prisoners with HCV received antiviral therapy. The direct-acting antivirals (DAAs) for HCV are highly effective, with a low burden of side effects. Since 2016, DAAs are available to all Australians with HCV. However, currently in Australia, they can only be prescribed by or in consultation with experienced prescribers. This study evaluated a telementoring service to upskill doctors and nurse practitioners working in correctional facilities. Methods The telementoring service was implemented in five correctional facilities. Qualitative interviews were used to examine the perceived clinical effectiveness and organisational impacts of the service. Content analysis of the interviews was used to identify key themes. Results In the first ten months of the service, there were 16 telementoring sessions with 173 patients discussed. Sixteen staff participated in qualitative interviews. From these, three key themes were identified: access to antiviral therapy; organisational impacts (cost, increased staff knowledge and confidence, staff time, and workload); and, adaptations of the care model and future opportunities. Conclusion Telementoring is an effective method to facilitate eligible prescriber status to medical doctors and upskill other clinicians in correctional facilities to increase capacity to treat HCV. [ABSTRACT FROM AUTHOR]

Surveys are a common method for assessing patient and clinician perceptions, attitudes and outcomes of telehealth. However, inadequacies in both the conduct and reporting of survey studies are common in telehealth research. This article provides clinicians and researchers with practical guidance on the appropriate selection, use and reporting of survey tools for telehealth research. We identify common survey outcomes and instruments used in telehealth research, and methods to assess the validity and psychometric properties of survey tools. Enhancing the quality and reporting of telehealth research is important to improve our understanding of which telehealth-supported models of care improve outcomes and for which patient groups. [ABSTRACT FROM AUTHOR]

Objective: To understand why some adults with primary brain tumors do not use support services despite indications of a need for help.Methods: Nineteen adults recently diagnosed with primary brain tumors participated in semi-structured interviews. Thematic analysis was used to identify recurrent ways participants explained their non-use of support services.Results: Some patients indicated that they did not use support services as they did not need help, in particular reporting positive experiences relative to their expectations or to others, that their needs were met, or difficulties recognizing their needs. Some patients reported not wanting help, citing preferences to self-manage, other priorities, or negative perceptions of the services available. Many patients identified barriers to support service utilization, particularly problems recognizing that services could address their needs and that their needs were valid concerns.Conclusion: The gap between patients' needs and their service use may result from patients' expectations from the medical system, shifting of standards for well-being, cognitive changes, and access issues.Practice Implications: Addressing knowledge barriers and perceptions relating to help-seeking, as well as recognizing the challenges specific to this patient group in terms of need recognition and access issues, may assist in improving patients' physical, psychological and social well-being. [ABSTRACT FROM AUTHOR]

Objective: Receiving a diagnosis of head and neck cancer is devastating for patients and family carers and causes high levels of distress. Previous studies report that carer distress levels exceed that of patients, but go largely unnoticed by health professionals. To date, there is a paucity of studies that have described carers' perspectives of the lived experience of caring for a loved one diagnosed with head and neck cancer. The aim of this study was to explore the lived experiences of carers of patients diagnosed with head and neck cancer. Methods: This qualitative study was informed by descriptive phenomenology. Carers of patients who had been diagnosed with head and neck cancer within the last 6 years were recruited from participating hospitals in Perth, Western Australia. Semi‐structured interviews were conducted with 20 carers of patients diagnosed with head and neck cancer. Thematic analysis was conducted to gain an understanding of participants lived experiences. Results: Key themes identified were: Silent Suffering, Gamut of Emotions, Causal Attribution, Changing Priorities, Gaining Support, and Coping. The changing priorities themes highlights that carers prioritised (a) being available for their loved one and (b) taking an active role in managing head and neck cancer symptoms and side effects. Conclusions: Carers of patients diagnosed with head and neck cancer experience distress. Instead of seeking support, carers often elected to suffer in silence. Implications for practice include screening for carer distress and providing specific interventions focused on caring for someone diagnosed with head and neck cancer. [ABSTRACT FROM AUTHOR]

Aim: To develop and psychometrically test the Patient‐reported Experience Measure‐Cancer (PREM‐C), reflecting patients' perceptions of cancer care experiences according to the Institute of Medicine domains. Design: A three‐phase cross‐sectional survey was conducted. Methods: Development, reliability and validity testing of the PREM‐C measure was undertaken. Data collection included three phases: firstly (development) between October and November, 2015; secondly (psychometric testing), May 2016–June, 2017, and finally, (revision and psychometric testing) May 2019–March 2020. Results: The final PREM‐C structure, created using the Institute of Medicine domains, was psychometrically sound with five factors identified in the Exploratory Factor Analysis, demonstrating internal reliability ranging from 0.8 to 0.9. Confirmatory Factor Analysis indicated the hypothesized model fitted well (Root mean square error of approximation = 0.076). External convergent and divergent validity was established with the PREM‐C found to be moderately correlated with the Picker Patient Experience Questionnaire but weakly correlated with the WHOQoL‐BREF. Conclusion: The development and testing of the PREM‐C demonstrated good fit as a clinically relevant measure of ambulatory cancer patients' experiences of care. To make meaningful changes to nursing practice and health services, patient experience measures such as the PREM‐C might support staff to identify areas for service improvement. Impact: Few reliable measures and less validated measures collect patients' perceptions of the quality of their healthcare provision. Rigorous psychometric testing of the newly developed PREM‐C demonstrated good internal consistency, test–retest reliability, and external convergent and divergent validity. The PREM‐C is a potentially relevant measure of cancer patients' experiences of care. It might be used to assess patient‐centred care and guide safety and quality improvements in clinical settings. PREM‐C use might inform service providers of experiences of care in their institution and inform policy and practice development. This measure is sufficiently generic, allowing potential use in other chronic disease populations. Patient or Public Contribution: This conduct of this study was supported by the participating patients of the hospital Cancer Outpatients Service. [ABSTRACT FROM AUTHOR]

Background Inadequate knowledge and skills and a lack of confidence to provide care have been identified as major unmet needs for carers of people with brain cancer. An online intervention was developed to address the unmet needs of carers of people with high-grade glioma. Methods Ten carers evaluated the intervention through multiple methods. Acceptability and usability were measured through online data analytics (unique page views, time on page), surveys, and interviews. Questionnaires measured potential impacts on distress (Distress Thermometer), depression, anxiety (Hospital Anxiety and Depression Scale), carer competence (Carer Competence Scale), carer preparedness (Caregiving Preparedness Scale), unmet needs (Supportive Care Needs Scale – Brain Tumor Specific for carers), usability and acceptability (USE). Results Results suggested the intervention had high levels of usability (usability scales' means range = 5.1 to 6.7 out of 7) and acceptability (M = 76.3/100). Correlations indicated the potential to impact depression. Qualitative findings highlighted benefits of the intervention as a comprehensive reliable resource that could validate and normalize carer experiences. Interview findings guided further improvements (eg, additional carer videos, content organization). Conclusions The study indicated high acceptability and usability of an online intervention for carers of people with high-grade glioma. This exploratory study also provided preliminary indications of a potential to decrease depression. However, a more robust, potentially longitudinal, investigation is needed with a larger and broader sample. Informed by this study, the intervention has been amended and a randomized controlled trial will further evaluate the enhanced intervention. [ABSTRACT FROM AUTHOR]

Aim and objective: To synthesise evidence of registered nurses’ and midwives’ experiences with videoconferencing and identify perceptions of the appropriateness, meaningfulness and feasibility of this technology in professional and clinical practice. Background: Videoconferencing is a form of telehealth that can facilitate access to high‐quality care to improve health outcomes for patients and enable clinicians working in isolation to access education, clinical supervision, peer support and case review. Yet use of videoconferencing has not translated smoothly into routine practice. Understanding the experiences of registered nurses and midwives may provide practitioners, service managers and policymakers with vital information to facilitate use of the technology. Design: A qualitative meta‐synthesis of primary qualitative studies undertaken according to Joanna Briggs Institute methodology. Method: A systematic search of 19 databases was used to identify qualitative studies that reported on registered nurses’ or midwives’ experiences with videoconferencing in clinical or professional practice. Two reviewers independently appraised studies, extracted data and synthesised findings to construct core concepts. Results: Nine studies met the criteria for inclusion. Five key synthesised findings were identified: useful on a continuum; broader range of information; implications for professional practice; barriers to videoconferencing; and technical support, training and encouragement. Conclusions: While videoconferencing offers benefits, it comes with personal, organisational and professional consequences for nurses and midwives. Understanding potential benefits and limitations, training and support required and addressing potential professional implications all influence adoption and ongoing use of videoconferencing. Relevance to clinical practice: Registered nurses and midwives are well placed to drive innovations and efficiencies in practice such as videoconferencing. Nursing and midwifery practice must be reframed to adapt to the virtual environment while retaining valued aspects of professional practice. This includes ensuring professional standards keep pace with the development of knowledge in this area and addressing the findings highlighted in this meta‐synthesis. [ABSTRACT FROM AUTHOR]

Introduction: Failure to incorporate key patient-reported outcome (PRO) content in trial protocols affects the quality and interpretability of the collected data, contributing to research waste. Our group developed evidence-based training specifically addressing PRO components of protocols. We aimed to assess whether 2-day educational workshops improved the PRO completeness of protocols against consensus-based minimum standards provided in the SPIRIT-PRO Extension in 2018. Method: Annual workshops were conducted 2011–2017. Participants were investigators/trialists from cancer clinical trials groups. Although developed before 2018, workshops covered 15/16 SPIRIT-PRO items. Participant feedback immediately post-workshop and, retrospectively, in November 2017 was summarised descriptively. Protocols were evaluated against SPIRIT-PRO by two independent raters for workshop protocols (developed post-workshop by participants) and control protocols (contemporaneous non-workshop protocols). SPIRIT-PRO items were assessed for completeness (0 = not addressed, 10 = fully addressed). Mann–Whitney U tests assessed whether workshop protocols scored higher than controls by item and overall. Results: Participants (n = 107) evaluated the workshop positively. In 2017, 16/41 survey responders (39%) reported never applying in practice; barriers included role restrictions (14/41, 34%) and lack of time (5/41, 12%). SPIRIT-PRO overall scores did not differ between workshop (n = 13, median = 3.81/10, interquartile range = 3.24) and control protocols (n = 9, 3.51/10 (2.14)), (p = 0.35). Workshop protocols scored higher than controls on two items: 'specify PRO concepts/domains' (p = 0.05); 'methods for handling missing data' (p = 0.044). Conclusion: Although participants were highly satisfied with these workshops, the completeness of PRO protocol content generally did not improve. Additional knowledge translation efforts are needed to assist protocol writers address SPIRIT-PRO guidance and avoid research waste that may eventuate from sub-optimal PRO protocol content. [ABSTRACT FROM AUTHOR]

Introduction: Cancers that originate from the upper aerodigestive tract are collectively known as head and neck cancer. The most common are squamous cell carcinomas of the oropharynx, larynx, and oral cavity. Head and neck cancer patients experience significant physical and psychological changes because of the disease and treatment. There is a substantial strain on family carers who have extensive responsibilities over most aspects of the patient's life. The aim of the study was to understand the perspectives of being an HNC carer and their perceived expectations of the role. Methods: The study adopted a qualitative research design with a social constructionist epistemology. Interviews were conducted with 20 carers who were currently caring for someone diagnosed with head and neck cancer. Results: Three overarching themes were identified: taking responsibility for the patient's nutrition, navigating a new and different relationship, and "my life's not my own." Participants felt responsible for ensuring the patient was eating and became increasingly frustrated when the patient was unable to intake food. Carers prioritised the patients' needs at the expense of their own, and several came to resent the role. Conclusion: Carers' expectations of their role informed how they approached giving care. Carers need to be supported from diagnosis and encouraged to prioritise their own wellbeing. [ABSTRACT FROM AUTHOR]

Abstract: Objective: This study assessed the quality of life and psychosocial well-being of brain tumor patients and their carers. Methods: A cross-sectional postal survey was completed by 75 patients and 70 carers (response rate=29.8%) who were listed in a community-based brain tumor support group database. Measures used were the Functional Assessment of Cancer Therapy–General (FACT-G) and the Hospital Anxiety and Depression Scale (HADS). Queensland population-based norms for the FACT-G were used for comparison. Results: On average, as compared with population norms, the FACT-G summary scores of the patients (mean=74.6, S.D.=18.6) and carers (mean=76.7, S.D.=17.7) were between 0.5 and 1 S.D. lower, representing a clinically significant reduction in their quality of life. Among patients and carers, 30% and 40%, respectively, reported anxious moods and 17% and 10%, respectively, reported depressed moods on the HADS. Significant correlations were observed between the FACT-G and HADS subscales, particularly emotional well-being and anxiety, as well as physical and functional well-being and depression, and between patients'' and their carers'' quality of life. Among the patients, predictors of lower quality of life were older age and female sex, whereas for the carers, there was a trend for lower quality of life among those looking after a patient with a high-grade disease. Conclusions: The degree of detriment to quality of life by a brain tumor for patients and that for their carers are similar and clinically significant. The association between the FACT-G subscales and the HADS indicates that improvements could be achieved by alleviating emotional distress and improving functional well-being. [Copyright &y& Elsevier]

Aim: Implementation of treat‐to‐target (T2T) for rheumatoid arthritis (RA) presents many challenges and an evidence‐practice gap has emerged. This study assessed clinician and patient barriers to the implementation of an RA‐T2T strategy and developed a knowledge translation (KT) tool for use in "real‐life" clinical settings. Methods: Surveys of patients and rheumatologists measured agreement with RA‐T2T recommendations and use in daily practice. Patient knowledge and perceptions were assessed as was clinician willingness to alter practice and barriers to RA‐T2T using visual analog scales. An electronic KT‐tool was developed and a two‐phase usability trial undertaken to assess use in clinical interactions. Results: Ninety‐one percent of patients had no prior knowledge of RA‐T2T but agreed with the recommendations showing mean level agreement scores (8.39‐9.54, SD 2.37‐1.54). Ninety percent were willing to try RA‐T2T, 49% felt their treatment could be improved and 28% wanted more involvement in treatment decisions. Rheumatologists agreed with RA‐T2T recommendations (7.30‐9.27, SD 2.59‐0.91). Barriers to implementation identified by rheumatologists included time, appointment availability and perceived patient reluctance to escalate medications. Usability experiences with the KT‐tool were tracked and clinicians reported it was easy to use (100%), resulted in a discussion of RA‐T2T (73%) and a target being set for 63% of consults. Patients reported they read (92%) and understood (87%) the information in the KT‐tool, and that a target was set in 62% of interactions. Conclusions: RA‐T2T uptake in clinical practice may be improved through understanding local clinician and patient barriers and an implementation strategy utilizing a patient‐driven KT‐tool. [ABSTRACT FROM AUTHOR]

Background: Immune and targeted therapies continue to transform treatment outcomes for those with metastatic melanoma. However, the role of palliative care within this treatment paradigm is not well understood. Aim: To explore bereaved carers' experiences of immune and targeted therapy treatment options towards end of life for patients with metastatic melanoma. Design: An interpretive, qualitative study using a social constructivist framework was utilised. Interviews were recorded, transcribed and analysed using grounded theory methods. Setting/participants: Participants (n = 20) were bereaved carers of patients who had received some form of immune and/or targeted therapy at one of three Australian metropolitan melanoma treatment centres. Results: Carers struggled to reconcile the positive discourse around the success of immune and targeted therapies in achieving long-term disease control, and the underlying uncertainty in predicting individual responses to therapy. Expectations that immune and targeted therapies necessarily provide longer-term survival were evident. Difficulty in prognostication due to clinical uncertainty and a desire to maintain hope resulted in lack of preparedness for treatment failure and end of life. Conclusion: Immune and targeted therapies have resulted in increased prognostic challenges. There is a need to engage, educate and support patients and carers to prepare and plan amid these challenges. Educational initiatives must focus on improving communication between patients, carers and clinicians; the differences between palliative and end-of-life care; and increased competency of clinicians in having goals-of-care discussions. Clinicians must recognise and communicate the benefit of collaborative palliative care to meet patient and family needs holistically and comprehensively. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Abstract: Objectives: To assess the supportive care needs and interest in related services among brain tumour patients and their carers and to compare the level of unmet needs to other cancer populations. Methods: A cross-sectional survey was posted to 363 households who were subscribed to the Queensland Cancer Fund Brain Tumour Support Service in 2005. Overall, 75 patients and 70 carers (response rate 29.8%) returned completed questionnaires. Measures were the Supportive Care Needs Survey (SCNS-34) and a brain tumour specific subscale for patients and carers, as well as the Hospital Anxiety and Depression Scale (HADS). Results: Patients most frequently reported requiring support to overcome fatigue, uncertainty about the future and not being able to do the things they used to do. Carers wanted help dealing with fears about the patients mental or physical deterioration, with the impact caring had on their own life, and with reducing stress in the patient''s life. Among patients, 30% reported anxious mood and 17% depressed mood on the HADS, while corresponding numbers for carers were 40% and 10%, respectively. Patients and/or carers with higher than average supportive care needs expressed greater interest in support services, such as those to improve physical activity, using community services more effectively and to manage stress. Greater emotional distress predicted higher supportive care needs (e.g. odds ratio depressed patients=2.11; (95% confidence interval 1.10–4.03), while no association was detected between patients’ or carers’ demographic characteristics, or patients’ self-reported medical status and higher than average supportive care needs. Conclusion: The level of unmet supportive care needs observed among patients with a brain tumour and their carers is similar to that observed among cancer populations with metastatic disease. Practice implications: Interventions for this group should integrate lifestyle, coping support, and neuropsychological rehabilitation. [Copyright &y& Elsevier]