Development and testing of a patient-reported experience measure for cancer: A cross-sectional survey.

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.

Supportive care of patients diagnosed with high grade glioma and their carers in Australia.

PURPOSE: This study aimed to: determine the supportive care available for Australian patients with High Grade Glioma (HGG) and their carers; identify service gaps; and inform changes needed to implement guidelines and Optimal Care Pathways. METHODS: This cross-sectional online survey recruited multidisciplinary health professionals (HPs) who were members of the Cooperative Trials Group for Neuro-Oncology involved in management of patients diagnosed with HGG in Australian hospitals. Descriptive statistics were calculated. Fisher's exact test was used to explore differences between groups. RESULTS: 42 complete responses were received. A majority of MDT meetings were attended by a: neurosurgeon, radiation oncologist, medical oncologist, radiologist, and care coordinator. Less than 10% reported attendance by a palliative care nurse; physiotherapist; neuropsychologist; or speech therapist. Most could access referral pathways to a cancer care coordinator (76%), neuropsychologist (78%), radiation oncology nurse (77%), or psycho-oncologist (73%), palliative care (93-100%) and mental health professionals (60-85%). However, few routinely referred to an exercise physiologist (10%), rehabilitation physician (22%), dietitian (22%) or speech therapist (28%). Similarly, routine referrals to specialist mental health services were not standard practice. Nearly all HPs (94%) reported HGG patients were advised to present to their GP for pre-existing conditions/comorbidities; however, most HPs took responsibility (≤ 36% referred to GP) for social issues, mental health, symptoms, cancer complications, and treatment side-effects. CONCLUSIONS: While certain services are accessible to HGG patients nationally, improvements are needed. Psychosocial support, specialist allied health, and primary care providers are not yet routinely integrated into the care of HGG patients and their carers despite these services being considered essential in clinical practice guidelines and optimal care pathways.

"My life's not my own": A qualitative study into the expectations of head and neck cancer carers.

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.

Improving the patient-reported outcome sections of clinical trial protocols: a mixed methods evaluation of educational workshops.

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.

Physical activity and exercise in adults diagnosed with primary brain cancer: a systematic review.

PURPOSE: The aims of this systematic review were to: (1) describe physical activity (PA) levels following diagnosis of primary brain cancer, (2) determine the relationship between PA levels and health outcomes, and (3) assess the effect of participating in an exercise intervention on health outcomes following a diagnosis of brain cancer. METHODS: PubMed, EMBASE, Scopus and CINAHL were searched for relevant articles published prior to May 1, 2020. Studies reporting levels of PA, the relationship between PA and health outcomes, and exercise interventions conducted in adults with brain cancer were eligible. The search strategy included terms relating to primary brain cancer, physical activity, and exercise. Two independent reviewers assessed articles for eligibility and methodological quality (according to Joanna Briggs Institute Critical Appraisal Tools). Descriptive statistics were used to present relevant data and outcomes. RESULTS: 15 studies were eligible for inclusion. Most adults with brain cancer were insufficiently active from diagnosis through to post-treatment. Higher levels of PA were associated with lower severity of brain cancer specific concerns and higher quality of life. Preliminary evidence suggests that exercise is safe, feasible and potentially beneficial to brain cancer symptom severity and interference, aerobic capacity, body composition and PA levels. However, the level of evidence to support these findings is graded as weak. CONCLUSIONS: Evidence suggests that it is likely appropriate to promote those with brain cancer to be as physically active as possible. The need or ability of those with brain cancer to meet current PA guidelines promoted to all people with cancer remains unclear.

From the carer's mouth: A phenomenological exploration of carer experiences with head and neck cancer patients.

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.

Palliative care in the context of immune and targeted therapies: A qualitative study of bereaved carers' experiences in metastatic melanoma.

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.

Tele-Rheumatology to Regional Hospital Outpatient Clinics: Patient Perspectives on a New Model of Care.

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.

Registered nurse and midwife experiences of using videoconferencing in practice: A systematic review of qualitative studies.

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.

Primary brain tumor patients' supportive care needs and multidisciplinary rehabilitation, community and psychosocial support services: awareness, referral and utilization.

Primary brain tumors are associated with significant physical, cognitive and psychosocial changes. Although treatment guidelines recommend offering multidisciplinary rehabilitation and support services to address patients' residual deficits, the extent to which patients access such services is unclear. This study aimed to assess patients' supportive care needs early after diagnosis, and quantify service awareness, referral and utilization. A population-based sample of 40 adults recently diagnosed with primary brain tumors was recruited through the Queensland Cancer Registry, representing 18.9 % of the eligible population of 203 patients. Patients or carer proxies completed surveys of supportive care needs at baseline (approximately 3 months after diagnosis) and 3 months later. Descriptive statistics summarized needs and service utilization, and linear regression identified predictors of service use. Unmet supportive care needs were highest at baseline for all domains, and highest for the physical and psychological needs domains at each time point. At follow-up, participants reported awareness of, referral to, and use of 32 informational, support, health professional or practical services. All or almost all participants were aware of at least one informational (100 %), health professional (100 %), support (97 %) or practical service (94 %). Participants were most commonly aware of speech therapists (97 %), physiotherapists (94 %) and diagnostic information from the internet (88 %). Clinician referrals were most commonly made to physiotherapists (53 %), speech therapists (50 %) and diagnostic information booklets (44 %), and accordingly, participants most commonly used physiotherapists (56 %), diagnostic information booklets (47 %), diagnostic information from the internet (47 %), and speech therapists (43 %). Comparatively low referral to and use of psychosocial services may limit patients' abilities to cope with their condition and the changes they experience.

Exploratory multi-methods evaluation of an online intervention for carers of people with high-grade glioma.

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.

Quality and readability of information materials for people with brain tumours and their families.

Written information is commonly used to inform patients about their disease and treatment but must be evidence-based and understandable to be useful. This study assessed the quality of the content and the readability of information brochures for people affected by brain tumours. We randomly selected 18 publicly available brochures. Brochures were assessed by criteria to assess the quality of content using the DISCERN instrument. Readability was tested using three commonly used formulas, which yield the reading grade level required to comprehend the brochure (sixth grade level recommended). The mean overall DISCERN score was 3.17 out of a maximum of 5 (moderate quality); only one achieved a rating greater than 4 (high quality). Only one brochure met the sixth grade readability criteria. Although brochures may have accurate content, few satisfied all of the recommended criteria to evaluate their content. Existing brochures need to be critically reviewed and simplified and consumer-focused brochures, produced.

A patient-centered knowledge translation tool for treat-to-target strategy in rheumatoid arthritis: Patient and rheumatologist perspectives.

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.

Use of Reimbursed Psychology Videoconference Services in Australia: An Investigation Using Administrative Data.

BACKGROUND: In November 2017, the Australian government approved reimbursement for psychology consultations conducted by videoconference under the Better Access initiative to address inequitable access of mental health services across regions in Australia. OBJECTIVE: This project uses publically available activity data from the Medicare Benefits Scheme to quantify the uptake of videoconference for psychology resulting from the initiative change. METHODS: Data were extracted from the Medicare Benefits Schedule item reports using the item codes for standard consultations and the new item codes for videoconference consultations. Activity data from 2 years before and the first year of the change to the Better Access initiative were compared to examine the uptake of videoconference for psychology. Data were stratified by allied health profession, sex, age and state jurisdiction. RESULTS: In the 1-year period after the introduction of reimbursed videoconference consultations, approximately 5.7 million in-person consultations and 4141 videoconference consultations were funded by Medicare in Australia. Videoconference consultations comprised 0.07% of the total consultations performed in that 1-year period and showed an increased trajectory. The results can guide future research into evaluating the clinical outcomes of patients via both in-person and videoconference delivery modes. CONCLUSIONS: Videoconference mental health services were used in the first year that they were available, although they only accounted for a small percentage of all mental health consultations provided by allied health professionals. This finding lays the foundation for future work which could examine the effectiveness of the scheme in reducing inequity and investigating the economic benefits of the expanded initiative to the government and society.

The effectiveness of mHealth for self-management in improving pain, psychological distress, fatigue, and sleep in cancer survivors: a systematic review.

PURPOSE: Integrating mHealth into the cancer care continuum may be an effective strategy to improve cancer survivorship care by supporting self-management. We aim to assess the effectiveness of mHealth applications (apps) for self-management in improving pain, psychological distress, fatigue, or sleep outcomes in adult cancer survivors. METHODS: Experimental quantitative studies evaluating apps aiming to support self-management for adult cancer survivors and reporting pain, psychological distress, fatigue, or sleep outcomes were included. PubMed, Web of Science, Embase, CINAHL, PsycINFO, Scopus, and CENTRAL databases were searched from inception through December 2017. Risk of bias was assessed using the Cochrane risk of bias tool (PROSPERO registration number CRD42017081182). RESULTS: Seven studies of six mHealth interventions (n = 949 participants) were included. Two randomized controlled trials (RCTs), one quasi-RCT, one non-RCT, and three single-arm studies involved survivors with a mix of cancer types. The most common app features were symptom questionnaires (n = 5) and progress tracking (n = 5). Four studies reported outcomes for pain, with three showing improvements. Two studies reported psychological distress outcomes, showing mixed results. Four studies reported improvements in fatigue post-intervention or in the intervention compared with control group, but the changes were not all statistically significant. Two studies reported improvements in sleep outcomes. CONCLUSIONS: There is emerging evidence that mHealth interventions that support self-management can improve pain and fatigue outcomes in cancer survivors, and some promise for psychological distress and sleep outcomes. Further development and investigation of mHealth is needed, incorporating targeted, evidence-based models of care into app design. IMPLICATIONS FOR CANCER SURVIVORS: mHealth interventions can improve outcomes for cancer survivors and have significant potential to benefit this growing population due to their reach.

An outreach telephone program for advanced melanoma supportive care: Acceptability and feasibility.

PURPOSE: People with advanced melanoma face an uncertain trajectory as new treatments now have the potential to provide longer-term survival for some. However, the disease course is variable and unpredictable, with many expressing a need for better supportive care. This study aimed to investigate the acceptability and feasibility of extending an existing melanoma-specific self-referral or 'passive' telephone consultation support service to an 'active' outreach call to offer a supportive care program tailored to the needs of the patient. METHOD: Participants were enrolled by their oncology nurse into a single group pre-post intervention study. Participants received an outreach telephone call focused on knowledge and skill development. Participants completed questionnaires at baseline and four weeks post-intervention. Post-intervention interviews with patients and involved staff were used to explore acceptability and feasibility of the outreach service call. RESULTS: Of 18 participants approached, 15 enrolled and 14 received the intervention. Staff time required for intervention delivery provided evidence for feasibility. Participants perceived the intervention as acceptable, and beneficial. In interviews, having someone with melanoma-specific knowledge to talk with was a key benefit of the outreach call program. Many participants expressed that they would have wished to receive the outreach call at an earlier stage, for example at the time of recurrence of/progression to advanced melanoma. CONCLUSIONS: Extending an existing self-referral support service model to use a more 'active' outreach approach is acceptable and feasible. The next step in the evaluation process for this intervention is a randomised controlled trial to determine effectiveness and cost-effectiveness.

Mobile Health for First Nations Populations: Systematic Review.

BACKGROUND: The ubiquitous presence and functionality of mobile devices offers the potential for mobile health (mHealth) to create equitable health opportunities. While mHealth is used among First Nations populations to respond to health challenges, the characteristics, uptake, and effectiveness of these interventions are unclear. OBJECTIVE: This review aimed to identify the characteristics of mHealth interventions (eg, study locations, health topic, and modality) evaluated with First Nations populations and to summarize the outcomes reported for intervention use, user perspectives including cultural responsiveness, and clinical effectiveness. In addition, the review sought to identify the presence of First Nations expertise in the design and evaluation of mHealth interventions with First Nations populations. METHODS: The methods of this systematic review were detailed in a registered protocol with the International Prospective Register of Systematic Reviews (PROSPERO, CRD42019123276). Systematic searches of peer-reviewed, scientific papers were conducted across 7 databases in October 2018. Eligible studies had a primary focus on mHealth interventions with experimental or quasi-experimental design to respond to a health challenge with First Nations people from Canada, Australia, New Zealand, and the United States. Two authors independently screened records for eligibility and assessed risk of bias using the Joanna Briggs Institute checklists. Data were synthesized narratively owing to the mix of study designs, interventions, and outcomes. The review was reported in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses statement. RESULTS: Searches yielded 1053 unique records, after review and screening, 13 studies (5 randomized controlled trials and 8 quasi-experimental designs) were included in the final analysis. Studies were conducted in Australia (n=9), the United States (n=2), and New Zealand (n=2). The most common health challenge addressed was mental health and suicide (n=5). Intervention modalities included text messaging (n=5), apps (n=4), multimedia messaging (n=1), tablet software (n=1), or a combination of short messaging service (SMS) and apps (n=1). Results showed mixed engagement with the intervention (n=3); favorable user perspectives, including acceptability and cultural appropriateness (n=6); and mixed outcomes for clinical effectiveness (n=10). A diverse range of risks of bias were identified, the most common of which included a lack of clarity about allocation and blinding protocols and group treatment for randomized controlled trials and a lack of control group and single outcome measures for quasi-experimental designs. First Nations expertise informed all mHealth studies, through authorship (n=8), affiliation with First Nations bodies (n=3), participatory study design (n=5), First Nations reference groups (n=5), or a combination of these. CONCLUSIONS: mHealth modalities, including SMS and apps, appear favorable for delivery of health interventions with First Nations populations, particularly in the area of mental health and suicide prevention. Importantly, First Nations expertise was strongly embedded within the studies, augmenting favorable use and user engagement. However, evidence of efficacy is limited.

Impact of school-based allied health therapy via telehealth on children's speech and language, class participation and educational outcomes.

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.

Unmet supportive care needs and interest in services among patients with a brain tumour and their carers.

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.

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.