Effectiveness and cost-effectiveness of a digital health intervention to support patients with colorectal cancer prepare for and recover from surgery: study protocol of the RecoverEsupport randomised controlled trial.

INTRODUCTION: Surgery is the most common treatment for colorectal cancer (CRC) and can cause relative long average length of stay (LOS) and high risks of unplanned readmissions and complications. Enhanced Recovery After Surgery (ERAS) pathways can reduce the LOS and postsurgical complications. Digital health interventions provide a flexible and low-cost way of supporting patients to achieve this. This protocol describes a trial aiming to evaluate the effectiveness and cost-effectiveness of the RecoverEsupport digital health intervention in decreasing the hospital LOS in patients undergoing CRC surgery. METHODS AND ANALYSIS: The two-arm randomised controlled trial will assess the effectiveness and cost-effectiveness of the RecoverEsupport digital health intervention compared with usual care (control) in patients with CRC. The intervention consists of a website and a series of automatic prompts and alerts to support patients to adhere to the patient-led ERAS recommendations. The primary trial outcome is the length of hospital stay. Secondary outcomes include days alive and out of hospital; emergency department presentations; quality of life; patient knowledge and behaviours related to the ERAS recommendations; health service utilisation; and intervention acceptability and use. ETHICS AND DISSEMINATION: The trial has been approved by the Hunter New England Research Ethics Committee (2019/ETH00869) and the University of Newcastle Ethics Committee (H-2015-0364). Trial findings will be disseminated via peer-reviewed publications and conference presentations. If the intervention is effective, the research team will facilitate its adoption within the Local Health District for widespread adaptation and implementation. TRIAL REGISTRATION NUMBER: ACTRN12621001533886.

Prevalence and Type of Unmet Needs Experienced by People Living with Dementia.

BACKGROUND: Accurately identifying the unmet needs of community-dwelling people with dementia allows targeted support to be provided to assist these individuals to stay at home. OBJECTIVE: We developed a self-report instrument to identify the unmet needs of community-dwelling people with dementia and used this to explore the prevalence and type of unmet needs present in this population. METHODS: This was a cross-sectional survey of people with dementia living in the community in Australia. Participants were recruited from geriatric clinics, respite centers, aged care providers, and carers attending support groups. Eligible people with dementia were provided with a study information pack and survey which included the self-report Unmet Needs Instrument for Dementia (UNI-D), sociodemographic characteristics and survey acceptability. RESULTS: The UNI-D contained 26 items across 5 domains and demonstrated acceptable internal consistency, face and construct validity, and acceptability. Ninety-five eligible participants completed the survey (response rate 35%) with 85% identifying at least one unmet need (median = 4; IQR = 1-9). The items most frequently endorsed included needing more help with remembering things (64%), finding possible treatments for dementia (44%), understanding who to contact regarding a problem or concern related to dementia (36%), and to see friends and family more often (33%). CONCLUSION: The UNI-D is a promising tool to identify the self-reported needs of people with dementia. The development and rigorous testing of interventions targeting unmet needs related to health and wellbeing, dementia support, and meaningful activities appears warranted.

Use of the supportive care framework to explore haematological cancer survivors' unmet needs: a qualitative study.

BACKGROUND: Some sub-types of haematological cancers are acute and require intensive treatment soon after diagnosis. Other sub-types are chronic, relapse over many years and require life-long cycles of monitoring interspersed with bouts of treatment. This often results in significant uncertainty about the future, high levels of depression and anxiety, and reduced quality of life. Little is known about how to improve care for haematological cancer survivors. This study explored qualitatively, in a sample of haematological cancer survivors, (i) their unmet needs experienced as a result of their disease and treatment; and (ii) strategies that may help address these needs. METHODS: Semi-structured interviews were conducted with 17 adult haematological cancer survivors. Data was analysed using qualitative content analysis. The Supportive Care Framework guided data collection and analysis. RESULTS: Participants had a mean age of 57 years (SD 13). Most were male (n = 10, 59%). Five themes emerged from the data: (i) changes in unmet needs across the care trajectory (with greatest unmet needs experienced soon after diagnosis, at discharge from hospital and with cancer recurrence); (ii) informational unmet needs requiring improved patient-centred communication; (iii) uncertainty about treatment and the future; (iv) coordinated, tailored and documented post-treatment care planning as a strategy for optimal care delivery; and (v) ongoing support services to meet psychosocial and practical unmet needs by involving peer support, less bureaucratic transport services and flexible work arrangements. CONCLUSIONS: To our knowledge, this is the first qualitative investigation using the Supportive Care Framework to explore unmet needs of haematological cancer survivors. Our findings offer fresh insights into this important area of study. Written, take-home care plans which provide simple but tailored guidance on where to seek additional support may help decrease uncertainty and feelings of vulnerability post-treatment for adult haematological cancer survivors. Future research should further develop and test strategies aimed at addressing unmet needs of haematological cancer survivors identified in this study.

Testing the effectiveness of a general practice intervention to improve uptake of colorectal cancer screening: a randomised controlled trial.

OBJECTIVE: Uptake of screening through the Australian National Bowel Cancer Screening Program remains low. General practice guidelines support the general practitioners' role to offer CRC screening. This study tests the effect that an intervention including point-of-care FOBT provision, printed screening advice and GP endorsement has on self-reported FOBT uptake. METHODS: A multisite, 1:1 parallel-arm, cluster-randomised controlled trial. Participants aged 50-74, at average risk of CRC and overdue for screening were recruited from four general practices in New South Wales, Australia, from September 2016 to May 2017. Self-report of FOBT up to eight weeks post baseline. RESULTS: A total of 336 participants consented to complete a baseline survey (64% consent rate), of which 123 were recruited into the trial (28 usual care days and 26 intervention days). Follow-up data was collected for 114 participants (65 usual care and 49 intervention). Those receiving the intervention had ten times greater odds of completing screening compared to usual care (39% vs. 6%; OR 10.24; 95%CI 2.9-36.6, p=0.0006). CONCLUSIONS: A multicomponent intervention delivered in general practice significantly increased self-reported FOBT uptake in those at average risk of CRC. Implications for public health: General practice interventions could serve as an important adjunct to the Australian National Bowel Cancer Screening Program to boost plateauing screening rates.

What is a 'timely' diagnosis? Exploring the preferences of Australian health service consumers regarding when a diagnosis of dementia should be disclosed.

BACKGROUND: Recently the dementia field has shifted focus away from the early diagnosis debate in favour of 'timely' diagnosis. 'Timely' diagnosis disclosure takes into consideration the preferences and unique circumstances of the individual. Determining when diagnosis disclosure is 'timely' may be particularly complex if there are differing views between the individual, their family, and their health care providers regarding disclosure. This study explores the preferences of consumers regarding when a diagnosis of dementia should be communicated. METHODS: A cross-sectional survey was conducted with English-speaking adults attending outpatient clinics at an Australian hospital. Participants were recruited by a research assistant in the clinic waiting room and invited to complete the survey on a web-connected iPad. The survey included questions examining socio-demographics and experience with dementia. Two scenarios were used to explore preferences for timing of diagnosis disclosure. RESULTS: Of 446 participants, 92% preferred a diagnosis of dementia to be disclosed as soon as possible. Preferences were not associated with socio-demographics or previous dementia experience. Most participants also preferred disclosure to occur as soon as possible if their spouse or partner was diagnosed with dementia (88%). There was strong correlation between preferences for self and preferences for spouse (0.91). CONCLUSIONS: These findings provide guidance to health care providers about preferences for disclosure of a dementia diagnosis, and may help to overcome potential barriers to timely diagnosis. As the prevalence of dementia increases, consumers' preference for diagnosis to occur as soon as possible has important implications for the health system.

Quantifying the unmet needs of caregivers of people with dementia: a critical review of the quality of measures.

OBJECTIVE: The array of demanding tasks carried out by caregivers of people with dementia have significant negative impacts on their physical, mental and social well-being. Needs assessment allows individuals to indicate the extent to which their needs across different areas have or have not been met, allowing for estimations of the prevalence of needs and the extent to which help is required. This approach is extremely valuable in a clinical context, as it enables identification of the areas with which caregivers report a particular desire for help and allows targeting of support and resources to those who identify high levels of unmet needs. This systematic review aimed to critically examine the psychometric properties of measures that assess unmet needs of caregivers of people with dementia. METHODS: Medline, Embase, PsycINFO and Cochrane electronic databases were searched between January 1990 and August 2015 for English-language publications describing the development or validation of measures assessing the unmet needs of adult caregivers of people with dementia. The psychometric properties of included measures were assessed against standard criteria for psychometric quality. RESULTS: Four measures met the inclusion criteria. Only half of the indices of psychometric quality were tested across measures. Three measures had adequate internal consistency reliability, of which one also showed adequate test-retest reliability. Two measures reported adequate construct validity, while criterion validity was not assessed for any measure. CONCLUSIONS: There is a clear need to develop a psychometrically rigorous instrument to identify the unmet needs of caregivers of people with dementia. Copyright © 2016 John Wiley & Sons, Ltd.

Involvement of informal caregivers in supporting patients with COPD: a review of intervention studies.

Caregivers of individuals with COPD have a key role in maintaining patient adherence and optimizing patient function. However, no systematic review has examined how the caregiver role has been operationalized in interventions to improve outcomes of individuals with COPD or the quality or effectiveness of these interventions. The aims of this review were to 1) determine whether caregivers have been involved as part of interventions to improve outcomes of individuals with COPD; 2) determine the risk of bias within included intervention studies; and 3) examine the effectiveness of interventions that have involved caregivers in improving outcomes of individuals with COPD. The electronic databases of Medline, Embase, PsycINFO, and Cochrane Library were searched from January 2000 to November 2015. Experimental studies testing interventions that involved a caregiver to improve COPD patient outcomes were eligible. Nine studies involving caregivers met inclusion criteria. No studies reported any intervention components targeted solely at caregivers, with most instead including caregivers in dyadic or group education sessions about COPD delivered by health care professionals. The risk of bias identified in included studies was mixed. Seven of the nine studies were effective in improving a broad range of outcomes. These findings highlight that there is an urgent need for methodologically rigorous interventions to examine the effectiveness of strategies to assist caregivers to provide direct care, encourage adherence to health care provider recommendations, act as a health care advocate, and provide emotional and psychosocial support to individuals with COPD.

Burden and Unmet Needs of Caregivers of Chronic Obstructive Pulmonary Disease Patients: A Systematic Review of the Volume and Focus of Research Output.

Caregivers of individuals with chronic obstructive pulmonary disease (COPD) experience significant burden. To develop effective interventions to support this vulnerable group, it is necessary to understand how this burden varies as a function of patient well-being and across the illness trajectory. This systematic review aimed to identify the number and type of data-based publications exploring the burden and unmet needs of caregivers of individuals with COPD. Medline, Embase, PsycINFO and Cochrane databases were searched for studies published between January 2000 and February 2014. Studies were eligible if they were quantitative studies examining unmet needs of, or burden on, adult caregivers of individuals with COPD. Eligible papers were categorised according to (i) type (i.e. descriptive, measurement and intervention studies); (ii) whether they measured associations between patient and caregiver burden and (iii) whether they measured caregiver burden longitudinally. Twenty-seven data-based papers met criteria for inclusion. There was a significant increase in the total number of publications over time. The majority of publications were descriptive studies (n = 25), with one measurement and one intervention study identified. Fourteen descriptive studies measured the relationship between patient or caregiver factors and caregiver burden. Only two studies measured caregiver burden over time. There are a number of gaps in the body of research examining burden and unmet needs of caregivers of individuals with COPD that preclude the development of effective interventions for this population. Greater research effort should be directed towards identifying rigorous measurement tools which more accurately characterise caregiver burden, so that evidence-based interventions can be developed.