Explore the vast range of titles available.

The routine measurement of patient-reported outcomes in cancer clinical care using electronic patient-reported outcome measures (ePROMs) is gaining momentum worldwide. However, a deep understanding of the mechanisms underpinning ePROM interventions that could inform their optimal design to improve health outcomes is needed. This study aims to identify the implicit mechanisms that underpin the effectiveness of ePROM interventions and develop program theories about how and when ePROM interventions improve health outcomes. A realist synthesis of the literature about ePROM interventions in cancer clinical care was performed. A conceptual framework of ePROM interventions was constructed to define the scope of the review and frame the initial program theories. Literature searches of Ovid MEDLINE, Ovid Embase, Scopus, and CINAHL, supplemented by citation tracking, were performed to identify relevant literature to develop, refine, and test program theories. Quality appraisal of relevant studies was performed using the Mixed Methods Appraisal Tool. Overall, 61 studies were included in the realist synthesis: 15 (25%) mixed methods studies, 9 (15%) qualitative studies, 13 (21%) descriptive studies, 21 (34%) randomized controlled trials, and 3 (5%) quasi-experimental studies. In total, 3 initial program theories were developed regarding the salient components of ePROM interventions-remote self-reporting, real-time feedback to clinicians, and clinician-patient telecommunication. The refined theories posit that remote self-reporting enables patients to recognize and report symptoms accurately and empowers them to communicate these to clinicians, real-time feedback prompts clinicians to manage symptoms proactively, and clinician-patient telephone interactions and e-interactions between clinic encounters improve symptom management by reshaping how clinicians and patients communicate. However, the intervention may not achieve the intended benefit if ePROMs become a reminder to patients of their illness and are not meaningful to them and when real-time feedback to clinicians lacks relevance and increases the workload. The key to improving health outcomes through ePROM interventions is enabling better symptom reporting and communication through remote symptom self-reporting, promoting proactive management of symptoms through real-time clinician feedback, and facilitating clinician-patient interactions. Patient engagement with self-reporting and clinician engagement in responding to feedback are vital and may reinforce each other in improving outcomes. Effective ePROM interventions might fundamentally alter how clinicians and patients interact between clinic encounters.

Background Little is known about the prevalence and incidence in low and middle-income countries (LMICs) of secondary lymphedema due to cancer. The purpose of the study is to estimate the prevalence and incidence in LMICs of secondary lymphedema related to cancer and/or its treatment(s) and identify risk factors. Method A systematic review and meta-analysis was conducted. Medline, EMBASE and CINAHL were searched in June 2019 for peer-reviewed articles that assessed prevalence and/or incidence of cancer-related lymphedema in LMICs. Risk of bias was assessed using the Joanna Briggs Institute Critical Appraisal Checklist for Prevalence Studies. Estimates of pooled prevalence and incidence estimates were calculated with 95% confidence intervals (CI), with sub-group analyses grouping studies according to: country of origin, study design, risk of bias, setting, treatment, and lymphedema site and measurement. Heterogeneity was measured using X 2 and I 2 , with interpretation guided by the Cochrane Handbook for Systematic Reviews. Results Of 8766 articles, 36 were included. Most reported on arm lymphedema secondary to breast cancer treatment ( n  = 31), with the remainder reporting on leg lymphedema following gynecological cancer treatment ( n  = 5). Arm lymphedema was mostly measured by arm circumference ( n  = 16/31 studies), and leg lymphedema through self-report ( n  = 3/5 studies). Eight studies used more than one lymphedema measurement. Only two studies that measured prevalence of leg lymphedema could be included in a meta-analysis (pooled prevalence =10.0, 95% CI 7.0–13.0, I 2  = 0%). The pooled prevalence of arm lymphedema was 27%, with considerable heterogeneity (95% CI 20.0–34.0, I 2  = 94.69%, n  = 13 studies). The pooled incidence for arm lymphedema was 21%, also with considerable heterogeneity (95% CI 15.0–26.0, I 2  = 95.29%, n  = 11 studies). There was evidence that higher body mass index (> 25) was associated with increased risk of arm lymphedema (OR: 1.98, 95% CI 1.45–2.70, I 2  = 84.0%, P <  0.0001, n  = 4 studies). Conclusion Better understanding the factors that contribute to variability in cancer-related arm lymphedema in LMICs is an important first step to developing targeted interventions to improve quality of life. Standardising measurement of lymphedema globally and better reporting would enable comparison within the context of information about cancer treatments and lymphedema care.

The handheld fan ('fan') is useful for chronic breathlessness management, however little is known about clinicians' implementation of the fan in clinical practice. To explore clinicians' experiences and views of fan implementation. A qualitative approach, using semi-structured interviews. Participants were purposively sampled from clinicians who had completed an on-line fan implementation survey and were willing to participate. A topic guide was developed using the Theoretical Domains Framework (TDF). Data were analysed using an inductive approach informed by the TDF. Twelve clinicians participated (doctors n = 4; nurses n = 4; allied health professionals n = 4) from respiratory and palliative care. Analysis generated three major themes: i) Clinician knowledge and skills in fan implementation, ii) environmental constraints on fan use and iii) clinician beliefs about the consequences of fan use. Implementation by clinicians was positively influenced by having a scientific rationale for fan use presented (mechanism of action). Clinicians believed that the fan relieved breathlessness and did not carry a significant infection risk. Opportunity for fan use varied across healthcare settings; key environmental influences were COVID-19 restrictions, lack of access to resources and funding to provide fans, particularly in acute and respiratory services. Clinicians commonly encountered scepticism among patients and colleagues who felt the fan was an implausible intervention for breathlessness. Implementation of the fan is motivated by clinician beliefs about patient-benefit, a scientific rationale to counter clinician and patient scepticism, and access to fans in clinic. Funding to allow patients to be supplied with and taught how to use a fan would support uptake. Research is needed to address concerns about infection risk.

Background Lymphoedema is a common, distressing, and debilitating condition affecting more than 200 million people globally. There is a small body of evidence to guide lymphoedema care which underpins several lymphoedema clinical practice guidelines developed for high-income countries (HIC). Some of these recommendations are unlikely to be feasible in low-resource settings. Aim To develop practice points for healthcare workers that optimise lymphoedema care in low- and middle-income countries (LMIC). Methods A nominal group technique (NGT) was undertaken to gain consensus on which content from HIC guidelines was important and feasible to include in practice points for LMIC, and other important advice or recommendations. Participants included experts, clinicians, and volunteers involved in lymphoedema care in LMIC. The NGT followed five key stages: silent ‘ideas’ generation, round-robin rationale, clarification, refinement and verification. The first, fourth and fifth stages were completed via email, and the second and third during a video meeting in order to generate a series of consensus based prevention, assessment, diagnosis, and management of lymphoedema in LMIC practice points. Results Of sixteen participants invited, ten members completed stage 1 of the NGT (ideas generation), of whom six contributed to stages 2 (round-robin) and 3 (clarification). All those who completed stage 1 also completed stages 4 (refinement) and 5 (verification). Practice points unanimously agreed on included Complex Decongestive Therapy (CDT) and good skin care, with management to be determined by lymphoedema stage. For podoconiosis-endemic areas, the use of socks and shoes was identified as very important in the prevention of non-filarial lymphoedema and other lymphoedema-causing conditions. Participants indicated that diagnosing lymphoedema using the lymphoscintigraphy and Indocyanine green (ICG) fluorescent lymphography was not possible due to unavailability and cost in LMIC. Surgical procedures for lymphoedema management were unanimously eliminated due to the unavailability of technology, limited workforce, and expensive cost in LMIC. Conclusion The consensus-based practice points generated by this project provide healthcare workers with guidance on caring for people with lymphoedema in LMIC. Further development of workforce capacity is needed.

Background The advent of immunotherapies and targeted treatments has improved survival for some people with metastatic cancer but also increased prognostic uncertainty. To inform clinician-patient communication and supportive care, this study explored uncertainty-related coping among people with metastatic uveal melanoma (mUM) – a disease for which treatments have emerged especially suddenly. Methods A qualitative approach was taken using semi-structured interviews. Participants with mUM were recruited through consumer organisations internationally. Interviews explored participant perspectives on the impacts of uncertainty and their related coping strategies. Analysis involved inductive coding followed by deductive coding against Mishel’s (1988) theoretical framework of uncertainty in illness. Results Seventeen people participated, including 10 from Australia. Participants described experiencing uncertainty as disempowering but also leveraged the opportunity it presented for remaining hopeful. Some participants used meta-cognition– alluded to as ‘tricking’ or ‘fooling’ themselves - to manage inconsistency between hoping for an exceptional response and accepting that benefits were likely to be modest at best. Most participants were able to maintain everyday normalcy but struggled to discuss their illness and treatment with family and friends. Participants reported heightened anxiety in the lead-up to routine scans and while awaiting results. Conclusions Coping with uncertainty in the era of immunotherapy and targeted treatments involves ‘hoping for the best while preparing for the worst’. Supportive care is especially needed at the time of scans. Some patients may also benefit from help with talking to their social networks. Head-to-head comparisons are needed of differing psychological interventions.

Background The Stop Cancer PAIN Trial was a phase III pragmatic stepped wedge cluster randomised controlled trial which compared effectiveness of screening and guidelines with or without implementation strategies for improving pain in adults with cancer attending six Australian outpatient comprehensive cancer centres ( n  = 688). A system for pain screening was introduced before observation of a ‘control’ phase. Implementation strategies introduced in the ‘intervention’ phase included: (1) audit of adherence to guideline recommendations, with feedback to clinical teams; (2) health professional education via an email-administered ‘spaced education’ module; and (3) a patient education booklet and self-management resource. Selection of strategies was informed by the Capability, Opportunity and Motivation Behaviour (COM-B) Model (Michie et al., 2011) and evidence for each strategy’s stand-alone effectiveness. A consultant physician at each centre supported the intervention as a ‘clinical champion’. However, fidelity to the intervention was limited, and the Trial did not demonstrate effectiveness. This paper reports a sub-study of the Trial which aimed to identify factors inhibiting or enabling fidelity to inform future guideline implementation initiatives. Methods The qualitative sub-study enabled in-depth exploration of factors from the perspectives of personnel at each centre. Clinical champions, clinicians and clinic receptionists were invited to participate in semi-structured interviews. Analysis used a framework method and a largely deductive approach based on the COM-B Model. Results Twenty-four people participated, including 15 physicians, 8 nurses and 1 clinic receptionist. Coding against the COM-B Model identified ‘capability’ to be the most influential component, with ‘opportunity’ and ‘motivation’ playing largely subsidiary roles. Findings suggest that fidelity could have been improved by: considering the readiness for change of each clinical setting; better articulating the intervention’s value proposition; defining clinician roles and responsibilities, addressing perceptions that pain care falls beyond oncology clinicians’ scopes of practice; integrating the intervention within existing systems and processes; promoting patient-clinician partnerships; investing in clinical champions among senior nursing and junior medical personnel, supported by medical leaders; and planning for slow incremental change rather than rapid uptake. Conclusions Future guideline implementation interventions may require a ‘meta-implementation’ approach based on complex systems theory to successfully integrate multiple strategies. Trial registration Registry: Australian New Zealand Clinical Trials Registry; number: ACTRN 12615000064505; data: https://www.anzctr.org.au/Trial/Registration/TrialReview.aspxid=367236&isReview=true .

Palliative care planning for nursing home residents with advanced dementia is often suboptimal. This study compared effects of facilitated case conferencing (FCC) with usual care (UC) on end-of-life care. A two arm parallel cluster randomised controlled trial was conducted. The sample included people with advanced dementia from 20 Australian nursing homes and their families and professional caregivers. In each intervention nursing home (n = 10), Palliative Care Planning Coordinators (PCPCs) facilitated family case conferences and trained staff in person-centred palliative care for 16 hours per week over 18 months. The primary outcome was family-rated quality of end-of-life care (End-of-Life Dementia [EOLD] Scales). Secondary outcomes included nurse-rated EOLD scales, resident quality of life (Quality of Life in Late-stage Dementia [QUALID]) and quality of care over the last month of life (pharmacological/non-pharmacological palliative strategies, hospitalization or inappropriate interventions). Two-hundred-eighty-six people with advanced dementia took part but only 131 died (64 in UC and 67 in FCC which was fewer than anticipated), rendering the primary analysis under-powered with no group effect seen in EOLD scales. Significant differences in pharmacological (P < 0.01) and non-pharmacological (P < 0.05) palliative management in last month of life were seen. Intercurrent illness was associated with lower family-rated EOLD Satisfaction with Care (coefficient 2.97, P < 0.05) and lower staff-rated EOLD Comfort Assessment with Dying (coefficient 4.37, P < 0.01). Per protocol analyses showed positive relationships between EOLD and staff hours to bed ratios, proportion of residents with dementia and staff attitudes. FCC facilitates a palliative approach to care. Future trials of case conferencing should consider outcomes and processes regarding decision making and planning for anticipated events and acute illness. Australian New Zealand Clinical Trial Registry ACTRN12612001164886.

About 70% of patients with advanced cancer experience pain. Few studies have investigated the use of healthcare in this population and the relationship between pain intensity and costs. Adults with advanced cancer and scored worst pain ≥ 2/10 on a numeric rating scale (NRS) were recruited from 6 Australian oncology/palliative care outpatient services to the Stop Cancer PAIN trial (08/15-06/19). Out-of-hospital, publicly funded services, prescriptions and costs were estimated for the three months before pain screening. Descriptive statistics summarize the clinico-demographic variables, health services and costs, treatments and pain scores. Relationships with costs were explored using Spearman correlations, Mann-Whitney U and Kruskal-Wallis tests, and a gamma log-link generalized linear model. Overall, 212 participants had median worst pain scores of five (inter-quartile range 4). The most frequently prescribed medications were opioids (60.1%) and peptic ulcer/gastro-oesophageal reflux disease (GORD) drugs (51.6%). The total average healthcare cost in the three months before the census date was A$6,742 (95% CI $5,637, $7,847), approximately $27,000 annually. Men had higher mean healthcare costs than women, adjusting for age, cancer type and pain levels (men $7,872, women $4,493, p<0.01) and higher expenditure on prescriptions (men $5,559, women $2,034, p<0.01). In this population with pain and cancer, there was no clear relationship between healthcare costs and pain severity. These treatment patterns requiring further exploration including the prevalence of peptic ulcer/GORD drugs, and lipid lowering agents and the higher healthcare costs for men. ACTRN12615000064505. World Health Organisation unique trial number U1111-1164-4649. Registered 23 January 2015.

Ethnic minority is associated with higher cancer incidence and poorer survival than is being in the majority group. We did a systematic review and meta-analysis to assess whether psychological morbidity and health-related quality of life (HRQoL) were affected by minority status. We searched Medline, AMED, PsycINFO, Embase, CENTRAL, CINAHL, PubMed, Sociological Abstracts, and Web of Science for English-language articles published between Jan 1, 1995, and October, 2009. Articles were eligible if they reported original data on anxiety, depression, distress (for psychological morbidity), or HRQoL in minority and majority cancer patients or survivors. Minority status was defined as being an immigrant or having an ethnic, linguistic, or religious background different to the majority of the population in the country where the research was done. We excluded African Americans and indigenous groups. Eligible articles were rated for quality of reporting, external validity, internal validity, sample size, and power. Each quality criterion was rated independently by two reviewers until inter-rater reliability was achieved. In a meta-analysis we compared mean scores adjusted for socioeconomic status and other sociodemographic and clinical variables, where available. Effect sizes greater than 0·5 and 95% CI that included 0·5 or −0·5 were deemed clinically important, with negative values indicating worse outcomes in minority patients. We assessed publication bias by estimating the number of potential unpublished studies and the number of non-signficant studies with p=0·05 required to produce a non-significant overall result. We identified 21 eligible articles that included 18 datasets collected in the USA and one in each of Canada, Romania, and the UK. Ethnic minority groups were Hispanic, Asian or Pacific Islander, or Hungarian (one dataset). Overall, we found minority versus majority groups to have significantly worse distress (mean difference −0·37, 95% CI −0·46 to −0·28; p<0·0001), depression (−0·23, −0·36 to −0·11; p=0·0003), and overall HRQoL (−0·33, −0·58 to −0·07; p=0·013). Further analyses found disparities to be specific to Hispanic patients in the USA, in whom poorer outcomes were consistent with potentially clinically important differences for distress (effect size −0·37, 95% CI −0·54 to −0·20; p<0·0001), social HRQoL (−0·45, −0·87 to −0·03; p=0·035), and overall HRQoL (−0·49, −0·78 to −0.20; p=0·0008). Results were significantly heterogeneous for overall HRQoL and all domains. Tests for interaction, for adjusted versus unadjusted and comparisons of high-quality, medium-quality, and low-quality articles, were generally non-significant, which suggests no bias. We found no evidence of any substantive publication bias. Hispanic cancer patients in the USA, but not other ethnic minority groups, report significantly worse distress, depression, social HRQoL, and overall HRQoL than do majority patients, of which all but depression might be clinically important. Heterogeneous results might, however, have limited the interpretation. Data for other minority groups and for anxiety are scarce. More studies are needed from outside the USA. Future reports should more clearly describe their minority group samples and analyses should control for clinical and sociodemographic variables known to predict outcomes. Understanding of why outcomes are poor in US Hispanic patients is needed to inform the targeting of interventions. Prince of Wales Hospital, Sydney, Australia.

Background Lymphoedema is a common, distressing and debilitating condition that can be related to cancer and its treatment or other conditions. Little is known about current practices in the diagnosis, assessment and management of lymphoedema in low- and middle-income countries (LMIC). Aim To describe current practices in diagnosing, assessing and managing cancer-related and other forms of lymphoedema in LMIC, and related barriers and facilitators. Methods An exploratory-descriptive qualitative study. Participants were lymphoedema experts or health care professionals identified via published lymphoedema papers and professional organizations respectively. Sampling was purposive to ensure a diversity of perspectives and experience. Data collection was via semi-structured telephone/video interviews, and questions canvassed participants’ experiences and perceptions of lymphoedema care in LMIC. Interviews were audio-recorded and transcribed verbatim. Analysis proceeded via inductive coding before mapping codes to the World Health Organization’s (WHO) Innovative Care for Chronic Conditions Framework. Results Nineteen participants were interviewed, most of whom were physiotherapists ( n  = 11). Ten participants worked permanently in a LMIC, while the remainder were based in a high-income country (HIC) and had been involved in initiatives to improve lymphoedema care across multiple LMIC. Participants indicated that management of cancer versus non-cancer related lymphoedema was similar, but that pathways to care were more straight-forward for those receiving cancer care, leading to earlier diagnosis. Key facilitators to optimizing lymphoedema care in LMIC included: 1) joining forces to overcome lymphoedema-related stigma; 2) building workforce capabilities; and 3) partnering with patients and families to support self-management. Ideas for building workforce included developing health professional knowledge, supporting a commitment to multidisciplinary team care, and adapting HIC guidelines for lymphoedema care to LMIC. Partnering with patients and families to support self-management involved following the person-centred approach, establishing clear communication, promoting adherence to management, adapting management to available resources, and involving patient family and friends in lymphoedema care. Conclusion Raising community and health professional awareness regarding lymphoedema and its management is a key first step to improving care outcomes. Resources for clinicians and patients/families developed for lymphoedema care in HIC need to be adapted for low resource settings.