Status, challenges and facilitators of consumer involvement in Australian health and medical research

Background: The emergent international practice of involving consumers in health research is driven, in part, by the growing share of health research that can only be applied in and emerge from knowledge that is shaped by human values and societal contexts. This is the first investigation of its kind to identify the current prevalence, challenges, enabling factors and range of approaches to consumer involvement in health and medical research in Australia. Methods: A nation-wide survey of research funding organisations and organisations that conduct research was performed during 2008-2009. Results: Marked variation in consumer involvement experience and perceptions exists between research funders and researchers. Research funders were over eight times more likely than organisations conducting research to involve consumers in identifying research needs and prioritising research topics. Across both groups, practical and time constraints were reported as key challenges to involving consumers, while guidelines on consumer involvement and evidence of effect were the most important potential enablers. More than a third of research organisations indicated that when consumer involvement was a condition of research funding, it was an important facilitator of involvement. Conclusion: It is no longer simply enough to keep society informed of important scientific breakthroughs. If Australian health research is to take into account important social contexts and consequences, it must involve consumers. A set of minimum consumer involvement standards and associated guidelines, that are agreed and routinely adopted, could ensure that consumers and the Australian community they represent, are given an opportunity to shed light on experiences and local circumstance, and express views and concerns relevant to health research

Consultation etiquette in general practice: A qualitative study of what makes it different for lay cancer caregivers

Background: It is commonplace for lay caregivers to overlook their own health concerns when supporting someone with advanced cancer. During this time, caregivers’ needs as patients are often marginalised by health professionals, including General Practitioners (GPs), who may miss the breadth of caregivers’ needs by focusing on the practicalities of caregiving. GPs traditionally rely on patients to raise their concerns, and then respond to these concerns, but caregivers as patients may be disinclined to cue their GP. The norms of engagement when caregivers consult their GP are less defined, and how they interact with their GP regarding their own health is under-explored. This sub-study investigates the norms, assumptions and subtleties which govern caregiver-GP consultations, and explores factors affecting their interaction regarding caregivers’ own health concerns. Methods: We conducted semi-structured interviews with six lay caregivers and 19 health professionals in Brisbane, Australia, and analyzed the interview transcripts thematically. Results: Traditional norms of engagement are subjected to assumptions and expectations which caregivers and GPs bring to the consultation. Practice pressures also influence both parties’ capacity and willingness to discuss caregivers’ health. Nonetheless, some GPs monitor caregivers’ health opportunistically. Their interaction is enhanced by the quality of the caregiver-GP relationship and by the GP’s skills. Conclusions: Caregivers are caught in a paradox whereby their health needs may become subsumed by the care recipient’s needs in a setting where patient needs are normally scrutinised and supported. Caregivers may not raise their health concerns with their GP, who instead may need to cue them that it is timely and safe to do so. The routine use of a prompt may help to address caregivers’ needs systematically, but it needs to be complemented by GPs’ desire and capacity to engage with patients in a caregiving role. The potential difference GPs can make to the health of these patients is substantial

Challenges experienced by informal caregivers in cancer

Evidence from the literature highlights the significant negative impact of care giving on the physical, mental andfinancial aspects of caregivers’ lives. It also reinforces the importance of reducing the barriers to meeting the unmet needs of caregivers and that research priorities in intervention development need to focus on reducing the negative aspects of care giving. Increased assistance to caregivers needs to ensure that they have the knowledge, skills,income security, job protection and other supports to provide care, while maintaining their own health and well-being throughout the dying and grieving process. This is particularly important in light of the predicted shortfall in the number in caregivers and especially as caregivers are increasingly replacing skilled health workers in the delivery of unfamiliar, complex cancer care at home

Priorities for women with lymphoedema after treatment for breast cancer: population based cohort study

Objective To explore the perceived unmet needs among women treated for breast cancer and in whom symptoms and signs indicate the presence of lymphoedema

A parallel-group, randomised controlled trial of a multimedia, self-directed, coping skills training intervention for patients with cancer and their partners: design and rationale

Introduction:Coping skills training interventions have been found to be efficacious in helping both patients and their partners manage the physical and emotional challenges they face following a cancer diagnosis. However, many of these interventions are costly and not sustainable. To overcome these issues, a self-directed format is increasingly used. The efficacy of self-directed interventions for patients has been supported; however, no study has reported on the outcomes for their partners. This study will test the efficacy of Coping-Together&mdash;a multimedia, self-directed, coping skills training intervention for patients with cancer and their partners.Methods and analysis:The proposed three-group, parallel, randomised controlled trial will recruit patients diagnosed in the past 4 months with breast, prostate, colorectal cancer or melanoma through their treating clinician. Patients and their partners will be randomised to (1) a minimal ethical care (MEC) condition&mdash;selected Cancer Council New South Wales booklets and a brochure for the Cancer Council Helpline, (2) Coping-Together generic&mdash;MEC materials, the six Coping-Together booklets and DVD, the Cancer Council Queensland relaxation audio CD and login to the Coping-Together website or (3) Coping-Together tailored&mdash;MEC materials, the Coping-Together DVD, the login to the website and only those Coping-Together booklet sections that pertain to their direct concerns. Anxiety (primary outcome), distress, depression, dyadic adjustment, quality of life, illness or caregiving appraisal, self-efficacy and dyadic and individual coping will be assessed before receiving the study material (ie, baseline) and again at 3, 6 and 12 months postbaseline. Intention-to-treat and per protocol analysis will be conducted.Ethics and dissemination:This study has been approved by the relevant local area health and University ethics committees. Study findings will be disseminated not only through peer-reviewed publications and conference presentations but also through educational outreach visits, publication of lay research summaries in consumer newsletters and publications targeting clinicians.</div

A randomised controlled trial of proactive telephone counselling on cold-called smokers' cessation rates

Objectives: Active telephone recruitment (‘cold calling’) can enrol almost 45 times more smokers to cessation services than media. However, the effectiveness of proactive telephone counselling with cold-called smokers from the broader community is unknown. This study examined whether proactive telephone counselling improved abstinence, quit attempts and reduced cigarette consumption among cold-called smokers. Methods: From 48014 randomly selected electronic telephone directory numbers, 3008 eligible smokers were identified and 1562 (51.9%) smokers recruited into the randomised controlled trial. Of these, 769 smokers were randomly allocated to proactive telephone counselling and 793 to the control (ie, mailed self-help) conditions. Six counselling calls were offered to intervention smokers willing to quit within a month and four to those not ready to quit. The 4-month, 7-month and 13-month follow-up interviews were completed by 1369 (87.6%), 1278 (81.8%) and 1245 (79.9%) participants, respectively. Results: Proactive telephone counselling participants were significantly more likely than controls to achieve 7-day point prevalence abstinence at 4 months (13.8% vs 9.6%, p=0.005) and 7 months (14.3% vs 11.0%, p=0.02) but not at 13 months. There was a significant impact of telephone counselling on prolonged abstinence at 4 months (3.4% vs 1.8%, p=0.02) and at 7 months (2.2% vs 0.9%, p=0.02). At 4 months post recruitment, telephone counselling participants were significantly more likely than controls to have made a quit attempt (48.6% vs 42.9%, p=0.01) and reduced cigarette consumption (16.9% vs 9.0%, p=0.0002). Conclusions: Proactive telephone counselling initially increased abstinence and quitting behaviours among cold-called smokers. Given its superior reach, quitlines should consider active telephone recruitment, provided relapse can be reduced

Benefits and resource implications of family meetings for hospitalized palliative care patients: research protocol.

BACKGROUND:Palliative care focuses on supporting patients diagnosed with advanced, incurable disease; it is 'family centered', with the patient and their family (the unit of care) being core to all its endeavours. However, approximately 30-50% of carers experience psychological distress which is typically under recognised and consequently not addressed. Family meetings (FM) are recommended as a means whereby health professionals, together with family carers and patients discuss psychosocial issues and plan care; however there is minimal empirical research to determine the net effect of these meetings and the resources required to implement them systematically. The aims of this study were to evaluate: (1) if family carers of hospitalised patients with advanced disease (referred to a specialist palliative care in-patient setting or palliative care consultancy service) who receive a FM report significantly lower psychological distress (primary outcome), fewer unmet needs, increased quality of life and feel more prepared for the caregiving role; (2) if patients who receive the FM experience appropriate quality of end-of-life care, as demonstrated by fewer hospital admissions, fewer emergency department presentations, fewer intensive care unit hours, less chemotherapy treatment (in last 30 days of life), and higher likelihood of death in the place of their choice and access to supportive care services; (3) the optimal time point to deliver FM and; (4) to determine the cost-benefit and resource implications of implementing FM meetings into routine practice.METHODS:Cluster type trial design with two way randomization for aims 1-3 and health economic modeling and qualitative interviews with health for professionals for aim 4.DISCUSSION:The research will determine whether FMs have positive practical and psychological impacts on the family, impacts on health service usage, and financial benefits to the health care sector. This study will also provide clear guidance on appropriate timing in the disease/care trajectory to provide a family meeting.<br/

Web-based patient-reported outcome measures for personalized treatment and care (PROMPT-Care) : multicenter pragmatic nonrandomized trial

Background: Despite the acceptability and efficacy of e–patient-reported outcome (ePRO) systems, implementation in routine clinical care remains challenging. Objective: This pragmatic trial implemented the PROMPT-Care (Patient Reported Outcome Measures for Personalized Treatment and Care) web-based system into existing clinical workflows and evaluated its effectiveness among a diverse population of patients with cancer. Methods: Adult patients with solid tumors receiving active treatment or follow-up care in four cancer centers were enrolled. The PROMPT-Care intervention supported patient management through (1) monthly off-site electronic PRO physical symptom and psychosocial well-being assessments, (2) automated electronic clinical alerts notifying the care team of unresolved clinical issues following two consecutive assessments, and (3) tailored online patient self-management resources. Propensity score matching was used to match controls with intervention patients in a 4:1 ratio for patient age, sex, and treatment status. The primary outcome was a reduction in emergency department presentations. Secondary outcomes were time spent on chemotherapy and the number of allied health service referrals. Results: From April 2016 to October 2018, 328 patients from four public hospitals received the intervention. Matched controls (n=1312) comprised the general population of patients with cancer, seen at the participating hospitals during the study period. Emergency department visits were significantly reduced by 33% (P=.02) among patients receiving the intervention compared with patients in the matched controls. No significant associations were found in allied health referrals or time to end of chemotherapy. At baseline, the most common patient reported outcomes (above-threshold) were fatigue (39%), tiredness (38.4%), worry (32.9%), general wellbeing (32.9%), and sleep (24.1%), aligning with the most frequently accessed self-management domain pages of physical well-being (36%) and emotional well-being (23%). The majority of clinical feedback reports were reviewed by nursing staff (729/893, 82%), largely in response to the automated clinical alerts (n=877). Conclusions: Algorithm-supported web-based systems utilizing patient reported outcomes in clinical practice reduced emergency department presentations among a diverse population of patients with cancer. This study also highlighted the importance of (1) automated triggers for reviewing above-threshold results in patient reports, rather than passive manual review of patient records; (2) the instrumental role nurses play in managing alerts; and (3) providing patients with resources to support guided self-management, where appropriate. Together, these factors will inform the integration of web-based PRO systems into future models of routine cancer care

A systematic review and meta-analysis of written self-administered psychosocial interventions among adults with a physical illness

This manuscript version is made available under the CC-BY-NC-ND 4.0 license http://creativecommons.org/licenses/by-nc-nd/4.0/ This author accepted manuscript is made available following 12 month embargo from date of publication (July 2017) in accordance with the publisher’s archiving policyObjective The cost of implementing professionally-led psychosocial interventions has limited their integration into routine care. To enhance the translation of effective psychosocial interventions in routine care, a self-administered format is sometimes used. The meta-analysis examined the efficacy of written self-administered, psychosocial interventions to improve outcomes among individuals with a physical illness. Methods Studies comparing a written self-administered intervention to a control group were identified through electronic databases searching. Pooled effect sizes were calculated across follow-up time points using random-effects models. Studies were also categorised according to three levels of guidance (self-administered, minimal contact, or guided) to examine the effect of this variable on outcomes. Results Forty manuscripts were retained for the descriptive review and 28 for the meta-analysis. Findings were significant for anxiety, depression, distress, and self-efficacy. Results were not significant for quality of life and related domains as well as coping. Purely self-administered interventions were efficacious for depression, distress, and self-efficacy; only guided interventions had an impact on anxiety. Conclusions Findings showed that written self-administered interventions show promise across a number of outcomes. Practice implications Self-administered interventions are a potentially efficacious and cost-effective approach to address some of the most common needs of patients with a physical illness

From inclusion to independence – Training consumers to review research

Health and medical research invariably impacts on the lives of everyday people. Organisations in the developed world are increasingly involving the public in health research projects, and research governance structures and processes. The form the involvement takes varies, as does the level of involvement, from individuals, to groups, to the wider community. Lay community members can be trained to independently review health and medical research, and wider societal involvement in funding decisions, can be effectively fostered. The theoretical foundation, design and development of a task based consumer-training program, including a number of enabling factors to support the success of such training are presented. This work is likely to be of value to those planning to train consumers in technical or complex areas