'Just Google it'-A scoping review of online mental health resources for survivors of breast cancer.

OBJECTIVE: As the Internet is a ubiquitous resource for information, we aimed to replicate a patient's Google search to identify and assess the quality of online mental health/wellbeing materials available to support women living with or beyond cancer. METHODS: A Google search was performed using a key term search strategy including search strings 'cancer', 'wellbeing', 'distress' and 'resources' to identify online resources of diverse formats (i.e., factsheet, website, program, course, video, webinar, e-book, podcast). The quality evaluation scoring tool (QUEST) was used to analyse the quality of health information provided. RESULTS: The search strategy resulted in 283 resources, 117 of which met inclusion criteria across four countries: Australia, USA, UK, and Canada. Websites and factsheets were primarily retrieved. The average QUEST score was 10.04 (highest possible score is 28), indicating low quality, with 92.31% of resources lacking references to sources of information. CONCLUSIONS: Our data indicated a lack of evidence-based support resources and engaging information available online for people living with or beyond cancer. The majority of online resources were non-specific to breast cancer and lacked authorship and attribution.

Supportive care needs of adults living with a peripherally inserted central catheter (PICC) at home: a qualitative content analysis.

BACKGROUND: Peripherally inserted central catheters (PICCs) are common vascular access devices inserted for adults undergoing intravenous treatment in the community setting. Individuals with a PICC report challenges understanding information and adapting to the device both practically and psychologically at home. There is a lack of research investigating the supportive care needs of individuals with a PICC to inform nursing assessment and the provision of additional supports they may require to successfully adapt to life with a PICC. The aim of this study was to identify the supportive care needs of adults with cancer or infection living with a PICC at home. METHOD: Qualitative, semi-structured interviews were used to identify supportive care needs of adults living with a PICC at home. Participants were recruited from cancer and infectious diseases outpatient units. Two researchers independently analysed transcripts using content analysis. RESULTS: A total of 15 participants were interviewed (30-87 years old). There were 5 males and 10 females interviewed, 9 participants had a cancer diagnosis and most lived in a metropolitan area. Many participants lived with a partner/spouse at home and three participants had young children. Participants identified supportive care needs in the following eight categories (i (i) Adapting daily life (ii) Physical comfort (iii) Self-management (iv) Emotional impact (v) Information content (vi) Understanding information (vii) Healthcare resources and (viii) Social supports. CONCLUSIONS: Adults living with a PICC at home report a broad range of supportive care needs. In addition to practical and information needs, health consumers may also require support to accept living with a device inside their body and to assume responsibility for the PICC. These findings may provide nurses with a greater understanding of individual needs and guide the provision of appropriate supports.

Development of consensus-based considerations for use of adult proxy reporting: an ISOQOL task force initiative.

AIMS: Many large-scale population-based surveys, research studies, and clinical care allow for inclusion of proxy reporting as a strategy to collect outcomes when patients are unavailable or unable to provide reliable self-report. Prior work identified an absence of methodological guidelines regarding proxy reporting in adult populations, including who can serve as a proxy, and considerations for data collection, analysis, and reporting. The primary objective of this work by the ISOQOL Proxy Task Force was to review documents and clinical outcome assessment measures with respect to proxy reporting and to develop, through consensus, considerations for proxy reporting. METHODS: We assembled an international group with clinically relevant and/or methodological expertise on proxy use in adult populations. We conducted a targeted review of documentation based on regulatory, non-regulatory, professional society, and individual measure sources. Using a standardized collection form, proxy-related information was extracted from each source including definitions of a proxy, characteristics of a proxy, domains addressable or addressed by a proxy, and observer-reporting. RESULTS: The definition of proxy was inconsistent across 39 sources, except regulatory documents which defined a proxy as a person other than the patient who reports on an outcome as if she/he were the patient. While proxy report was discouraged in regulatory documentation, it was acknowledged there were instances where self-report was impossible. Many documentation sources indicated proxies would be well-justified in certain contexts, but did not indicate who could act as a proxy, when proxies could be used, what domains of patient health they could report on, or how data should be reported. Observer-reported outcomes were typically defined as those based on observed behaviors, however there was not a consistent differentiation between proxy and observer reporting. Based on information extracted from these resources, we developed a checklist of considerations when including proxy-reported measures or using proxies in study design, data collection, analysis, interpretation and reporting of proxy reported data. CONCLUSION: Our targeted review highlights a lack of clarity in capturing, interpreting and reporting data from proxies in adult populations. We provide a checklist of considerations to assist researchers and clinicians with including proxies in research studies and clinical care. Lastly, our review identified areas where further guidance and future research are necessary.

Community-based Intravenous Treatment and Central Venous Access Devices: A Scoping Review of the Consumer and Caregiver Experience, Information Preferences, and Supportive Care Needs.

PURPOSE: Map existing research and describe the consumer/caregiver experience of community-based intravenous treatment, central venous access devices (CVADs), supportive care needs, and information preferences. DESIGN: Scoping review. METHODS: Five databases (Joanna Briggs Institute, Cochrane library, Emcare, Embase, and Medline) were searched. Screening and data extraction were performed independently by two reviewers. FINDINGS: Forty-eight studies were included. CONCLUSIONS: Although community-based intravenous treatment and CVADs have a significant impact on consumers and caregivers, there is scant research on their supportive care needs and information preferences. CLINICAL EVIDENCE: Some consumers and caregivers may require additional support while undergoing community-based intravenous treatment.

The association of circadian parameters and the clustering of fatigue, depression, and sleep problems in breast cancer survivors: a latent class analysis.

PURPOSE: Circadian rhythms control a wide range of physiological processes and may be associated with fatigue, depression, and sleep problems. We aimed to identify subgroups of breast cancer survivors based on symptoms of fatigue, insomnia, and depression; and assess whether circadian parameters (i.e., chronotype, amplitude, and stability) were associated with these subgroups over time. METHODS: Among breast cancer survivors, usual circadian parameters were assessed at 3-4 months after diagnosis (T0), and symptoms of fatigue, depression, and insomnia were assessed after 2-3 years (T1, N = 265) and 6-8 years (T2, N = 169). We applied latent class analysis to classify survivors in unobserved groups ("classes") based on symptoms at T1. The impact of each of the circadian parameters on class allocation was assessed using multinomial logistic regression analysis, and changes in class allocation from T1 to T2 using latent transition models. RESULTS: We identified 3 latent classes of symptom burden: low (38%), moderate (41%), and high (21%). Survivors with a late chronotype ("evening types") or low circadian amplitude ("languid types") were more likely to have moderate or high symptom burden compared to "morning types" and "vigorous types," respectively. The majority of survivors with moderate (59%) or high (64%) symptom burden at T1 had persistent symptom burden at T2. IMPLICATIONS FOR CANCER SURVIVORS: A late chronotype and lower circadian amplitude after breast cancer diagnosis were associated with greater symptoms of fatigue, depression, and insomnia at follow-up. These circadian parameters may potentially be novel targets in interventions aimed at alleviating symptom burden among breast cancer survivors.

Challenges and opportunities for using population health data to investigate cancer survivors' quality of life in Australia.

There is a recognised need for reported national data that inform health policy, health professions, and consumers about the wellbeing of Australians with cancer and other chronic conditions. International initiatives have demonstrated the viability and benefits of utilising population-based cancer registries to monitor the prevalence and trajectory of health-related quality of life (HRQOL) outcomes among people with cancer. Establishing a similar level of monitoring in Australia would require timely access to health data collected by publicly funded, population-based cancer registries, and the capacity to link this information across jurisdictions. Combining information from different sources via data linkage is an efficient and cost-effective way to maximise how data are used to inform population health and policy development. However, linking health datasets has historically been highly restricted, resource-intensive, and costly in Australia due to complex and outdated legislative requirements, duplicative approval processes, and differing policy frameworks in each state and territory. This has resulted in significant research waste due to underutilisation of existing data, duplication of research efforts and resources, and data not being translated into decision-making. Recognising these challenges, from 2015 to 2017 the Productivity Commission investigated options for improving data availability and use in Australia, considering factors such as privacy, security, and intellectual property. The inquiry report recommended significant reforms for Australian legislation, including the creation of a data sharing and release structure to improve access to data for research and policy development purposes. This paper discusses (1) opportunities in HRQOL research enabled by data linkage, (2) barriers to data access and use in Australia and the implications for waste in HRQOL research, and (3) proposed legislative reforms for improving data availability and use in Australia.

International nursing students' perceptions and experiences of transition to the nursing workforce - A cross-sectional survey.

OBJECTIVE: To investigate international nursing students' perceptions about their preparedness and experiences of transition from the educational settings to the host country's nursing workforce. BACKGROUND: Transition from a student to a registered nurse is a challenging phase for undergraduate nursing students. Undergraduate nursing students have reported concerns about their clinical preparedness and felt inadequately prepared as new graduates. One under-researched area is international nursing students' preparedness and experiences of transition from their undergraduate nursing program to the host country's nursing workforce. DESIGN: A descriptive cross-sectional study. SETTING: Online survey active from 26 October 2020-31 January 2021 in Australia. PARTICIPANTS: 110 eligible international nursing students (Mean age = 25.10 ± 3.32; 57.8% female) in the final year of their undergraduate nursing program Australian universities took part in the survey in 2020. METHODS: The survey used the Casey-Fink Readiness for Practice Survey as well as newly added questions to measure transition preparedness, clinical preparedness, facilitators and barriers that may affect transition and the impact of Coronavirus disease of 2019 on transition. Both descriptive and inferential statistics were used for data analysis. RESULTS: Over 90% of the respondents planned to transition to the Australian nursing workforce, with over 50% feeling prepared to transition as registered nurses. However, over 50% of the respondents did not feel ready to find nursing employment in Australia. When assessing clinical preparedness, participants reported their discomfort and lack of confidence in dealing with dying patients, delegating tasks to nursing assistants and communicating and interacting with physicians and interdisciplinary team members in the clinical area. They also reported clinical simulation activities helpful in clinical preparation, being comfortable in taking actions to solve problems and being confident in identifying actual or potential safety risks for patients. The major barriers for transition included temporary visa status, financial challenges, duration of clinical placements during the nursing program, inability to comprehend local colloquialism and knowledge of the Australian healthcare system. The main facilitators were clinical simulation experiences, the ability to speak languages other than English and interactions with people from diverse cultures. CONCLUSIONS: International nursing students had unique challenges related to their temporary visa status, knowledge of the Australian healthcare system and comprehension of colloquialism. Clinical simulation experiences, the ability to interact with diverse cultures and speak different languages contributed positively to their transition preparedness. They expressed their desire to have extended clinical placements in more acute care settings to improve their clinical experiences.

The use of proxies and proxy-reported measures: a report of the international society for quality of life research (ISOQOL) proxy task force.

AIMS: Proxy reports are often used when patients are unable to self-report. It is unclear how proxy measures are currently in use in adult health care and research settings. We aimed to describe how proxy reports are used in these settings, including the use of measures developed specifically for proxy reporting in adult health populations. METHODS: We systematically searched Medline, PsycINFO, PsycTESTS, CINAHL and EMBASE from database inception to February 2018. Search terms included a combination of terms for quality of life and health outcomes, proxy-reporters, and health condition terms. The data extracted included clinical context, the name of the proxy measure(s) used and other descriptive data. We determined whether the measures were developed specifically for proxy use or were existing measures adapted for proxy use. RESULTS: The database search identified 17,677 possible articles, from which 14,098 abstracts were reviewed. Of these, 11,763 were excluded and 2335 articles were reviewed in full, with 880 included for data extraction. The most common clinical settings were dementia (30%), geriatrics (15%) and cancer (13%). A majority of articles (51%) were paired studies with proxy and patient responses for the same person on the same measure. Most paired studies (77%) were concordance studies comparing patient and proxy responses on these measures. DISCUSSION: Most published research using proxies has focused on proxy-patient concordance. Relatively few measures used in research with proxies were specifically developed for proxy use. Future work is needed to examine the performance of measures specifically developed for proxies. SYSTEMATIC REVIEW REGISTRATION: PROSPERO No. CRD42018103179.

Effect of patient activation interventions on health-related behavioral outcomes in adults with chronic kidney disease: a systematic review protocol.

OBJECTIVE: This review aims to examine the effect of patient activation interventions compared with usual care on health-related behavioral outcomes in adults with chronic kidney disease stages 3-5. INTRODUCTION: Chronic kidney disease is a global health problem associated with a high mortality, reduction of health-related quality of life, and high health care costs. The chronic nature requires active involvement and self-management of the person with chronic kidney disease. Patient activation is a self-management approach that refers to the knowledge, confidence, and skills of people to enable them to manage their own health needs. However, the effectiveness of patient activation interventions on health-related behavioral outcomes in this population have not yet been systematically evaluated. INCLUSION CRITERIA: This systematic review will include primary research studies measuring the effect of behavioral change interventions addressing beliefs, knowledge, confidence, and/or skills to optimize self-management in adult patients with chronic kidney disease stages 3-5 who are not receiving dialysis. Studies included in this review will be randomized controlled trials. METHODS: Published studies will be searched in MEDLINE, Embase, Emcare, and PsycINFO. Unpublished studies and gray literature sources will also be searched. Titles and abstracts of search results published in English from 2005 onward will be screened, and the full text of potentially relevant studies will be assessed in detail. Studies selected for inclusion will undergo critical appraisal. Data extracted will include specific details about population, study methods, interventions, and outcomes. Studies will be pooled in statistical meta-analysis, if possible. SYSTEMATIC REVIEW REGISTRATION NUMBER: PROSPERO CRD42020205084.

International nursing students' and international nursing graduates' experiences of transition to the nursing workforce: A systematic review of qualitative evidence.

OBJECTIVE: The objective of this systematic review was to identify and synthesise existing evidence on the experiences of international nursing students' and international nursing graduates' transition to the host country's nursing workforce. BACKGROUND: International students' experiences of transition to the host country has been extensively explored by researchers. International students experience unique challenges related to communication and language, socialisation, finance, and temporary student visa. One under-researched area is the experiences of transition for international nursing students and international nursing graduates. This systematic review examined the existing evidence on international nursing students' and international nursing graduates' experiences of transition to the host country's nursing workforce. INCLUSION CRITERIA: This review considered published and unpublished studies-qualitative, quantitative, mixed methods, evidence syntheses, and grey literature-that included international nursing students enrolled in an undergraduate nursing programme outside their home country and international nursing graduates, either employed or not yet employed in nursing and within their first year of completing an undergraduate nursing programme outside their home country. METHODS: A three-step search strategy was utilised in this review. The search strategy aimed to find published and unpublished literature in English from January 2000 to April 2020. The databases searched were Ovid Medline, Scopus, Emcare, ERIC, PsycINFO, ProQuest Central, ProQuest Dissertations and Theses Global, JBI Evidence-based Practice Database, and ScienceDirect. Two reviewers independently screened the titles/abstracts and full texts of studies for inclusion and appraised the methodological quality of the included studies. Findings and accompanying illustrations were extracted by one reviewer, assigned a level of credibility, and checked by the others. Results were analysed using JBI's approach to qualitative meta-aggregation. RESULTS: This review included three qualitative papers published between 2011 and 2018. All included studies were appraised as of moderate quality. Sixty-five study findings and nineteen categories were aggregated into the following six synthesised findings: international nursing graduates developed confidence and satisfaction through challenges; personal challenges; clinical challenges; discrimination and justice; academic barriers to success; and what international nursing students liked and wanted. CONCLUSION: The synthesised findings revealed ongoing anxiety, lack of preparedness and role uncertainty that was experienced by international nursing students and international nursing graduates as they transition to the host country's nursing workforce. They expressed the need for information about professional role expectations, guidance, and support to transition. University transition programmes and services could provide support to address the workforce transition challenges faced by international nursing students and international nursing graduates. TWEETABLE ABSTRACT: Systematic review shows international nursing students and international nursing graduates experience anxiety, limited preparedness and role uncertainty when transitioning to the host country's nursing workforce.

Adverse events associated with home blood transfusion: A retrospective cohort study.

AIMS AND OBJECTIVES: To determine the rate of individual and system adverse events associated with blood transfusion at home. BACKGROUND: Home or residential care facility based blood transfusion is beneficial for individuals requiring transfusion due to reduced disruption to daily life and the comfort of a familiar environment. However, blood transfusion may result in serious adverse events. There is a lack of research in this area, and there is a need to identify rates of adverse events and evaluate the system used for this service. DESIGN: Retrospective cohort study. METHODS: Existing data routinely collected for clinical care were used to determine client and system adverse events of medically stable adults with a chronic disease who underwent blood transfusion in a home setting provided by a nurse-led service. A STROBE EQUATOR checklist was used for this study (see Appendix S1). RESULTS: There were 1790 episodes of care involving 533 participants, with 13 cases of transfusion reaction (incident rate [IR] 0.7%; 95% CI 0.43-1.25). Only five of these were severe, resulting in the cessation of the blood transfusion and further medical review or hospital admission (IR 0.28%; 95% CI 0.12-0.68). There were no cases of tampered blood packaging, expired or visually damaged blood products. There were 10 cases of incorrect paperwork (0.6%) and nine cases of incorrect temperature (0.5%). There were 153 cases of vascular access device adverse events (IR 8.5% 95% CI 7.3-9.9), most commonly, difficulty cannulating the individual (n = 82, 54%). CONCLUSIONS: A nurse-led home blood transfusion service was associated with low rates of both individual and system adverse events. Further research is needed to explore the perception of those using this service and supports required to improve the experience. RELEVANCE TO CLINICAL PRACTICE: Blood transfusions may be associated with increased risk of morbidity and mortality. This risk may be increased in a home setting due to the distance from an acute care facility. This study has demonstrated that a nurse-led home blood transfusion service is safe (<1% adverse event rate) for those with a medically stable, chronic condition. There were few failures in the system used to provide this service. Adverse events associated with the vascular access device were the most common complication and the reason for most blood product wastage. Mainly, this was due to difficulty inserting the short-term peripheral intravenous catheter (PIVC). RNs should consider ultrasound to aid PIVC insertion to facilitate treatment provision and enhance the experience of the individual.

A pilot study of population-based, patient-reported outcome collection in cancer survivors.

AIM: To determine feasibility and acceptability of completing PROs questionnaires at completion and 1 year after curative cancer treatment. METHODS: Patients assessed in a nurse-led end of treatment survivorship clinic, at a tertiary referral centre, recruited between October 2015 and July 2016 were mailed a survey at baseline and at 12-month follow-up. The survey included validated PRO questionnaires. A target response rate for feasibility, defined as the proportion of the eligible population approached that completed the survey, was set at 70%. Qualitative feedback regarding the survey was collected from participants. RESULTS: Of the 47 eligible patients approached, 34 (72.4%) agreed to participate with 29 (61.9%) completing the survey at baseline, and 21 (44.7%) at follow-up. Respondents lost to follow-up at 12 months had clinically meaningful lower scores on all QLQ-C30 functioning scales and 8 out of 9 symptom scales/items. Qualitative feedback from survey respondents indicated the content was relevant and acceptable. Participants expressed willingness to complete a similar survey approximately once per year and a higher preference for completing the survey in hard copy compared with online. CONCLUSIONS: Cancer survivors are willing to provide information on a range of PROs, but those with higher needs were the ones less likely to complete surveys. There is scope to improve the response rate and representativeness of the patient cohort captured. Future research should identify strategies to optimise recruitment when collecting PROs data from cancer survivors.

Measuring psychosocial outcomes of men living with prostate cancer: feasibility of regular assessment of patient-reported outcomes.

OBJECTIVE: To trial collecting patient-reported outcome measures (PROMs) to assess psychosocial outcomes in men with prostate cancer (PC). METHODS: A cross-sectional postal survey was sent to three groups of 160 men with PC (6, 12 and 24 months post-initial treatment; ntotal  = 480), through the South Australian Prostate Cancer Clinical Outcomes Collaborative (SAPCCOC) registry (2017). Outcomes were as follows: response rate, completeness, general and disease-specific quality of life, distress, insomnia, fear of recurrence, decisional difficulties and unmet need. RESULTS: A response rate of 57-61% (n = 284) was achieved across groups. Data completeness was over 90% for 88% of survey items, with lower response (76-78%) for EPIC-26 urinary and sexual functioning subscales, sexual aid use (78%) and physical activity (68%). In general, higher socio-economic indicators were associated with higher completion of these measures (absolute difference 12-26%, p < 0.05). Lower unmet need on the sexuality domain (SCNS-SF34) was associated with lower completion of the EPIC-26 sexual functioning subscale [M (SD) = 12.4 (21.6); M (SD) = 26.3 (27.3), p < .001]. Worse leaking urine was associated with lower completion of urinary pad/diaper use question (EPIC-26) [M (SD) = 65.9 (26.5), M (SD) = 77.3 (23.9), p < .01]. CONCLUSION: Assessment of psychosocial PROMs through a PC registry is feasible and offers insight beyond global quality of life assessment, to facilitate targeting and improvements in services and treatments.

A core set of patient-reported outcomes for population-based cancer survivorship research: a consensus study.

PURPOSE: Core outcome sets aim to improve the consistency and quality of research by providing agreed-upon recommendations regarding what outcomes should be measured as a minimum for a population and setting. This study aimed to identify a core set of patient-reported outcomes (PROs) representing the most important issues impacting on cancer survivors' long-term health, functioning, and quality of life, to inform population-based research on cancer survivorship. METHODS: In phase I, a list of 46 outcomes was generated through focus groups (n = 5) with cancer survivors (n = 40) and a review of instruments for assessing quality of life in cancer survivorship. In phase II, 69 national experts in cancer survivorship practice, research, policy, and lived experience participated in a two-round Delphi survey to refine and prioritise the listed outcomes into a core outcome set. A consensus meeting was held with a sub-sample of participants to discuss and finalise the included outcomes. RESULTS: Twelve outcome domains were agreed upon for inclusion in the core outcome set: depression, anxiety, pain, fatigue, cognitive problems, fear of cancer recurrence or progression, functioning in everyday activities and roles, financial toxicity, coping with cancer, overall bother from side effects, overall quality of life, and overall health status. CONCLUSIONS: We established a core set of PROs to standardise assessment of cancer survivorship concerns at a population level. IMPLICATIONS FOR CANCER SURVIVORS: Adoption of the core outcome set will ensure that survivorship outcomes considered important by cancer survivors are assessed as a minimum in future studies. Furthermore, its routine use will optimise the comparability, quality, and usefulness of the data cancer survivors provide in population-based research.

'Food for Thought'-The Relationship between Diet and Cognition in Breast and Colorectal Cancer Survivors: A Feasibility Study.

Survivors of cancer frequently experience persistent and troublesome cognitive changes. Little is known about the role diet and nutrition plays in survivors' cognition. We explored the feasibility of collecting cross-sectional online data from Australian survivors of breast and colorectal cancer to enable preliminary investigations of the relationships between cognition with fruit and vegetable intake, and the Omega-3 Index (a biomarker of long chain omega 3 fatty acid intake). A total of 76 participants completed online (and postal Omega-3 Index biomarker) data collection (62 breast and 14 colorectal cancer survivors): mean age 57.5 (±10.2) years, mean time since diagnosis 32.6 (±15.6) months. Almost all of the feasibility outcomes were met; however, technical difficulties were reported for online cognitive testing. In hierarchical linear regression models, none of the dietary variables of interest were significant predictors of self-reported or objective cognition. Age, BMI, and length of treatment predicted some of the cognitive outcomes. We demonstrated a viable online/postal data collection method, with participants reporting positive levels of engagement and satisfaction. Fruit, vegetable, and omega-3 intake were not significant predictors of cognition in this sample, however the role of BMI in survivors' cognitive functioning should be further investigated. Future research could adapt this protocol to longitudinally monitor diet and cognition to assess the impact of diet on subsequent cognitive function, and whether cognitive changes impact dietary habits in survivors of cancer.

International nursing students' and new graduates' experiences of transition to the nursing workforce: a scoping review protocol.

OBJECTIVE: The objective of this scoping review is to identify and examine the available evidence of domestically trained international nursing students' and new graduates' experiences of transition to the nursing workforce. INTRODUCTION: International students' workforce transition experiences are attracting researchers globally. One under-researched area relates to the workforce transition experiences of domestically trained international nursing students and new graduates. This scoping review will focus on identifying studies that examine factors that can directly or indirectly affect experiences of workforce transition. INCLUSION CRITERIA: This review will consider studies that include domestically trained international nursing students enrolled in an undergraduate/baccalaureate nursing program (outside their country of origin) and new graduates within their first year of completing an undergraduate/baccalaureate nursing program (outside their country of origin). Participants may be either employed or not employed in the host country's nursing workforce. Studies that include participants from any other nursing programs will be excluded. METHODS: The JBI approach for conducting and reporting scoping reviews will be followed. The review will include both published and unpublished literature. Research from 2000 onward that is available in English will be included. Searches will be conducted in MEDLINE, Scopus, Emcare, ERIC, PsycINFO, ProQuest Central, ProQuest Dissertations and Theses Global, and ScienceDirect. An assessment of methodological quality will be included, with results presented in the final report. One reviewer will carry out the data extraction process independently, which will be checked by another reviewer. Data will be presented in tabular form accompanied by a narrative summary that aligns with the objective of this scoping review.

Core outcome sets in cancer and their approaches to identifying and selecting patient-reported outcome measures: a systematic review.

OBJECTIVES: Issues arising from a lack of outcome standardisation in health research may be addressed by the use of core outcome sets (COS), which represent agreed-upon recommendations regarding what outcomes should be measured as a minimum in studies of a health condition. This review investigated the scope, outcomes, and development methods of consensus-based COS for cancer, and their approaches and criteria for selecting instruments to assess core patient-reported outcomes (PROs). METHODS: Studies that used a consensus-driven approach to develop a COS containing PROs, for use in research with cancer populations, were sought via MEDLINE, CINAHL, Embase, Cochrane Library, and grey literature. RESULTS: Seventeen studies met the inclusion criteria. Most COS (82%) were specific to a cancer type (prostate, esophageal, head and neck, pancreatic, breast, ovarian, lung, or colorectal) and not specific to an intervention or treatment (76%). Conducting a systematic review was the most common approach to identifying outcomes (88%) and administering a Delphi survey was the most common approach to prioritising outcomes (71%). The included COS contained 90 PROs, of which the most common were physical function, sexual (dys) function, pain, fatigue, and emotional function. Most studies (59%) did not address how to assess the core PROs included in a set, while 7 studies (41%) recommended specific instruments. Their approaches to instrument appraisal and selection varied. CONCLUSION: Efforts to standardise outcome assessment via the development of COS may be undermined by a lack of recommendations on how to measure core PROs. To optimise COS usefulness and adoption, valid and reliable instruments for the assessment of core PROs should be recommended with the aid of resources designed to facilitate this process.

Accuracy and acceptability of survivorship care plans: results of a pilot study.

Survivorship treatment summaries and care plans are increasingly incorporated into cancer care but there are limited data on their accuracy and acceptability. We have evaluated written care plans developed as part of a once-off, nurse-led survivorship consultations across four medical oncology clinics in South Australia as part of a state-wide pilot. While the accuracy of treatment summaries was high, level of detail in care plans was moderate to low, as was survivors' perception of plans' utility.

Development of a Core Set of Patient-Reported Outcomes for Population-Based Cancer Survivorship Research: Protocol for an Australian Consensus Study.

BACKGROUND: Core outcome sets seek to improve the consistency and quality of research by providing agreed-upon recommendations regarding what outcomes should be measured as a minimum for a population and setting. The problems arising from a lack of outcome standardization in population-based cancer survivorship research indicate the need for agreement on a core set of patient-reported outcomes (PROs) to enhance data quality, consistency, and comparability. OBJECTIVE: This study aims to identify a core set of PROs, representing the most important issues impacting on cancer survivors' long-term health, functioning and quality of life, to inform population-based research on cancer survivorship. METHODS: In Phase I, a list of all potentially important outcomes will be generated through focus group discussions with cancer survivors and a review of measures for assessing quality of life in cancer survivorship. The consolidated list will be advanced to Phase II, where a stakeholder consensus process will be conducted with national experts in cancer survivorship to refine and prioritize the outcomes into a core outcome set. The process will consist of a two-round Delphi survey and a consensus meeting. Cancer survivors, oncology health care professionals, and potential end users of the core outcome set with expertise in cancer survivorship research or policy will be invited to participate. In Phase III, recommended measures for assessment of the core outcome set will be selected with advice from experts on the assessment, analysis, and interpretation of PROs. RESULTS: As of April 2019, data collection for Phase I is complete and data analysis is underway. These data will inform the list of outcomes to be advanced into Phase II. Recruitment for Phase II will commence in June 2019, and it is anticipated that it will take 6 months to complete the three-step consensus process and identify a provisional core outcome set. The study results are expected to be published in early 2020. CONCLUSIONS: Expert consensus-driven recommendations on outcome measurement will facilitate the inclusion of survivorship outcomes considered important by cancer survivors and health professionals in future research. Adoption of the core outcome set will enable comparison and synthesis of evidence across studies and enhance the quality of PRO data collected in cancer survivorship research, particularly when applied to address macro-level questions. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/14544.