The mental health of Australians bereaved during the first two years of the COVID-19 pandemic: a latent class analysis.

BACKGROUND: The COVID-19 pandemic disrupted many areas of life, including culturally accepted practices at end-of-life care, funeral rites, and access to social, community, and professional support. This survey investigated the mental health outcomes of Australians bereaved during this time to determine how these factors might have impacted bereavement outcomes. METHODS: An online survey indexing pandemic and bereavement experiences, levels of grief, depression, anxiety, and health, work, and social impairment. Latent class analysis (LCA) was used to identify groups of individuals who shared similar symptom patterns. Multinomial regressions identified pandemic-related, loss-related, and sociodemographic correlates of class membership. RESULTS: 1911 Australian adults completed the survey. The LCA identified four classes: low symptoms (46.8%), grief (17.3%), depression/anxiety (17.7%), and grief/depression/anxiety (18.2%). The latter group reported the highest levels of health, work, and social impairment. The death of a child or partner and an inability to care for the deceased due to COVID-19 public health measures were correlated with grief symptoms (with or without depression and anxiety). Preparedness for the person's death and levels of pandemic-related loneliness and social isolation differentiated all four classes. Unemployment was associated with depression/anxiety (with or without grief). CONCLUSIONS: COVID-19 had profound impacts for the way we lived and died, with effects that are likely to ricochet through society into the foreseeable future. These lessons learned must inform policymakers and healthcare professionals to improve bereavement care and ensure preparedness during and following future predicted pandemics to prevent negative impacts.

Family behaviours that have an impact on the self-management activities of adults living with Type 2 diabetes: a systematic review and meta-synthesis.

AIMS: To identify family behaviours that adults with Type 2 diabetes' perceive as having an impact on their diabetes self-management. BACKGROUND: Research suggests that adults with Type 2 diabetes perceive that family members have an important impact on their self-management; however, it is unclear which family behaviours are perceived to influence self-management practices. METHODS: This meta-synthesis identified and synthesized qualitative studies from the databases EMBASE, Medline and CINAHL published between the year 2000 and October 2016. Studies were eligible if they provided direct quotations from adults with Type 2 diabetes, describing the influence of families on their self-management. This meta-synthesis adheres to the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) statement. RESULTS: Of the 2606 studies screened, 40 were included. This meta-synthesis identified that adults with Type 2 diabetes perceive family behaviours to be either: 1) facilitators of diabetes self-management; 2) barriers to diabetes self-management; or 3) equivocal behaviours with the potential to both support and/or impede diabetes self-management. Seven sub-themes were identified within these themes, including: four facilitator sub-themes ('positive care partnerships'; 'family watchfulness'; 'families as extrinsic motivator' and 'independence from family'); two barrier sub-themes ('obstructive behaviours' and 'limited capacity for family support'); and one equivocal behaviours subtheme ('regular reminders and/or nagging'). CONCLUSION: While most family behaviours are unambiguously perceived by adults with Type 2 diabetes to act as facilitators of or barriers to self-management, some behaviours were perceived as being neither clear facilitators nor barriers; these were termed 'equivocal behaviours'. If the concept of 'equivocal behaviours' is confirmed, it may be possible to encourage the adult living with Type 2 diabetes to reframe these behaviours so that they are perceived as enabling their diabetes self-management.

Clinical trials of medicinal cannabis for appetite-related symptoms from advanced cancer: a survey of preferences, attitudes and beliefs among patients willing to consider participation.

BACKGROUND: Australian clinical trials are planned to evaluate medicinal cannabis in a range of clinical contexts. AIMS: To explore the preferences, attitudes and beliefs of patients eligible and willing to consider participation in a clinical trial of medicinal cannabis for poor appetite and appetite-related symptoms from advanced cancer. METHODS: A cross-sectional anonymous survey was administered from July to December 2015 online and in eight adult outpatient palliative care and/or cancer services. Respondents were eligible if they were ≥18 years, had advanced cancer and poor appetite/taste problems/weight loss and might consider participating in a medicinal cannabis trial. Survey items focused on medicinal rather than recreational cannabis use and did not specify botanical or pharmaceutical products. Items asked about previous medicinal cannabis use and preferences for delivery route and invited comments and concerns. RESULTS: There were 204 survey respondents, of whom 26 (13%) reported prior medicinal cannabis use. Tablets/capsules were the preferred delivery mode (n = 144, 71%), followed by mouth spray (n = 84, 42%) and vaporiser (n = 83, 41%). Explanations for preferences (n = 134) most commonly cited convenience (n = 66; 49%). A total of 82% (n = 168) of respondents indicated that they had no trial-related concerns, but a small number volunteered concerns about adverse effects (n = 14) or wanted more information/advice (n = 8). Six respondents volunteered a belief that cannabis might cure cancer, while two wanted assurance of efficacy before participating in a trial. CONCLUSION: Justification of modes other than tablets/capsules and variable understanding about cannabis and trials will need addressing in trial-related information to optimise recruitment and ensure that consent is properly informed.

Optimal patient education for cancer pain: a systematic review and theory-based meta-analysis.

PURPOSE: Previous systematic reviews have found patient education to be moderately efficacious in decreasing the intensity of cancer pain, but variation in results warrants analysis aimed at identifying which strategies are optimal. METHODS: A systematic review and meta-analysis was undertaken using a theory-based approach to classifying and comparing educational interventions for cancer pain. The reference lists of previous reviews and MEDLINE, PsycINFO, and CENTRAL were searched in May 2012. Studies had to be published in a peer-reviewed English language journal and compare the effect on cancer pain intensity of education with usual care. Meta-analyses used standardized effect sizes (ES) and a random effects model. Subgroup analyses compared intervention components categorized using the Michie et al. (Implement Sci 6:42, 2011) capability, opportunity, and motivation behavior (COM-B) model. RESULTS: Fifteen randomized controlled trials met the criteria. As expected, meta-analysis identified a small-moderate ES favoring education versus usual care (ES, 0.27 [-0.47, -0.07]; P = 0.007) with substantial heterogeneity (I² = 71 %). Subgroup analyses based on the taxonomy found that interventions using "enablement" were efficacious (ES, 0.35 [-0.63, -0.08]; P = 0.01), whereas those lacking this component were not (ES, 0.18 [-0.46, 0.10]; P = 0.20). However, the subgroup effect was nonsignificant (P = 0.39), and heterogeneity was not reduced. Factoring in the variable of individualized versus non-individualized influenced neither efficacy nor heterogeneity. CONCLUSIONS: The current meta-analysis follows a trend in using theory to understand the mechanisms of complex interventions. We suggest that future efforts focus on interventions that target patient self-efficacy. Authors are encouraged to report comprehensive details of interventions and methods to inform synthesis, replication, and refinement.

A comparison of the FACT-G and the Supportive Care Needs Survey (SCNS) in women with ovarian cancer: unidimensionality of constructs.

PURPOSE: Health-related quality of life (HRQoL) and unmet needs (needs) questionnaires offer alternative perspectives for assessing cancer patients' concerns. We examined whether the conceptual differences underlying these alternative approaches yield corresponding empirical differences. METHODS: Eight-hundred and seventy-four women with ovarian cancer completed the Functional Assessment of Cancer Therapy scale (FACT-G; HRQoL) and the Supportive Care Needs Survey (SCNS-SF34; needs) every 3 months for 2 years. Correlational analysis, exploratory and confirmatory factor analysis (EFA/CFA), and Rasch analysis tested the relationship between patients' responses to similar domains and similar items across the two questionnaires. RESULTS: Strong correlations were found between items with virtually identical wording (0.67-0.75), while moderate to strong correlations (0.55-0.65) were found for those with very similar wording. EFA identified two common domains across the two questionnaires: physical and psychological. For each common domain, CFA indicated models involving a single construct with systematic variation within each questionnaire fit best. Rasch analysis including very similar items within the physical and psychological domains (separately) demonstrated strong evidence of unidimensionality. CONCLUSIONS: The high degree of similarity between patient responses to items addressing the same or very similar concerns suggests either that HRQoL and needs approaches do not reflect different constructs or that patients may not be able to differentiate between the severity of a concern and the level of need associated with that concern, especially when these are assessed in quick succession.

Choosing between the EORTC QLQ-C30 and FACT-G for measuring health-related quality of life in cancer clinical research: issues, evidence and recommendations.

BACKGROUND: This review aims to assist cancer clinical researchers in choosing between the two most widely used measures of cancer-specific health-related quality of life: the European Organisation for the Research and Treatment of Cancer Quality of Life Questionnaire Core 30 and Functional Assessment of Cancer Therapy-General (FACT-G). MATERIALS AND METHODS: Information on QLQ-C30 and FACT-G content, scale structure, accessibility and availability was collated from websites and manuals. A systematic review was undertaken to identify all articles reporting on psychometric properties and information to assist interpretability. Evidence for reliability, validity and responsiveness was rated using a standardised checklist. Instrument properties were compared and contrasted to inform recommendations. RESULTS: Psychometric evidence does not recommend one questionnaire over the other in general. However, there are important differences between the scale structure, social domains and tone that inform choice for any particular study. CONCLUSIONS: Where research objectives are concerned with the impact of a specific tumour type, treatment or symptom, choice should be guided by the availability, content, scale structure and psychometric properties of relevant European Organisation for the Research and Treatment of Cancer versus Functional Assessment of Chronic Illness Therapy modules. Because the FACT-G combines symptoms and concerns within each scale, individual items should always be reviewed within the context of specific research objectives. Where these issues are indecisive, researchers are encouraged to use an algorithm at the end of the current article.

Evidence for interventions to improve psychological outcomes in people with head and neck cancer: a systematic review of the literature.

PURPOSE: In addition to cancer-related distress, people with head and neck cancer (HNC) endure facial disfigurement and difficulties with eating and communication. High rates of alcohol use and socio-economic disadvantage raise concerns that patients with HNC may be less likely than others to participate in and adhere to psychological interventions. This article aims to inform future practice and research by reviewing the evidence in support of psychological interventions for this patient group. METHODS: We searched CENTRAL, Medline, Embase, PsycINFO and CINAHL in December 2009. Relevant studies were rated for internal and external validity against the criteria of the Agency for Healthcare Research and Quality (AHRQ) US Preventive Services Task Force. Wherever possible, outcomes were evaluated using effect sizes to confirm statistically significant results and enable comparison between studies. Meta-analysis was planned according to criteria in the Cochrane Handbook for Systematic Reviews. Levels of evidence for each intervention type were evaluated using AHRQ criteria. RESULTS: Nine studies met inclusion criteria. One study was rated 'good' for internal validity and four for external validity. Psycho-education and/or cognitive-behavioural therapy were evaluated by seven studies, and communication skills training and a support group by one study each. Significant heterogeneity precluded meta-analysis. Based on a study-by-study review, there was most support for psycho-education, with three out of five studies finding at least some effect. CONCLUSIONS: Research to date suggests it is feasible to recruit people with HNC to psychological interventions and to evaluate their progress through repeated-outcome measures. Evidence for interventions is limited by the small number of studies, methodological problems, and poor comparability. Future interventions should target HNC patients who screen positive for clinical distress and be integrated into standard care.

Improving patient outcomes through the routine use of patient-reported data in cancer clinics: future directions.

OBJECTIVES: Recent reviews suggest that the routine use of patient-reported outcome measures (PROMs) in cancer clinics improves the processes of care but not patient outcomes such as quality of life or satisfaction. We set out to identify future strategies for (1) interventions to impact patient outcomes and (2) trials to identify treatment effects. METHODS: MEDLINE and PsycINFO were systematically searched to identify reports of relevant randomized controlled trials. Intervention and trial designs were compared and contrasted along the parameters identified by previous reviews and the rationales reported in each article. Results were cross-referenced with evidence for impact to develop recommendations. RESULTS: Six articles were identified. Evidence for impact on patient outcomes was limited. Interventions varied according to the PROMs used, the frequency, content and presentation of feedback, and the training offered to medical teams. Trials varied in their unit of randomization, outcome measures, control of contamination, monitoring of PROM use, and length of follow-up. Our analysis identified the need for future interventions to ensure that PROM data are used to optimum effect and for trials to control for contamination and monitor use of PROMs to link this with outcomes. CONCLUSIONS: Future interventions should motivate and equip health professionals to use PROM data in managing patients, train patients in self-efficacy, use more specific PROMs in clinic, improve the interpretability of feedback for both medical staff and patients, and monitor the use of PROMs to intervene when problems arise. Future trials should use a cluster-randomized design to control for contamination and enable systems-based interventions.

Interdisciplinary pain management is beneficial for refractory orchialgia in children.

INTRODUCTION: Idiopathic testicular/groin pain can be a difficult entity for children, their families, and caregivers. The role of interdisciplinary pain management has previously been demonstrated in treating chronic orchialgia at the present pediatric pain clinic. OBJECTIVE: To evaluate the role of interdisciplinary pain management in managing refractory orchialgia. It was hypothesized that children with refractory orchialgia might respond well. Interdisciplinary care was defined as that which crosses two medical disciplines such as a surgical specialty and specialist in analgesia. SUBJECTS AND METHODS: Pediatric patients were identified who were: ≥ 10 years old; evaluated in the pediatric urology clinic between 2002 and 2012; were diagnosed wtih ICD code 608.9 or had the diagnosis of male genital disorder NOS. Children were included if they presented with orchialgia without an identifiable cause and failed conservative management (rest, scrotal support, Sitz bath, timed voiding, constipation avoidance) including conventional anti-nociceptive analgesics (acetaminophen, non-steroidal anti-inflammatory drugs, opioids). Patient electronic medical records were reviewed retrospectively. RESULTS: Twenty-two children met inclusion criteria. Mean age was 13.7 years (range 10-17). Nearly half (45%) of the children had chronic medical conditions such as asthma, allergies, and obesity. Twenty-one of the 22 children were referred to the pediatric pain clinic; 15 were evaluated, and one refused treatment. All children evaluated in the pediatric pain clinic were initially offered an empiric anti-neuropathic anti-convulsant (i.e. gabapentin) and/or an anti-depressant (i.e. amitriptyline) before being offered a nerve block. Of the 14 children accepting treatment in the pediatric pain clinic, six were treated solely with an empiric anti-neuropathic anti-convulsant and/or anti-depressant; eight received medications followed by nerve block (seven ilioinguinal-iliohypogastric blocks, one spinal and ilioinguinal-iliohypogastric block) (see Fig. 1). A total of eight of the 14 children (57%) treated by the pain clinic had resolution of pain, with 50% of those treated with medications alone (three out of six children) responding (two responding to gabapentin and a tricyclic antidepressant, one to gabapentin alone); and five out of eight (63%) treated with medications and then nerve block (ilioinguinal-iliohypogastric block) responding. Of the eight children undergoing nerve block, five required more than one block. The time between each block ranged from 4 to 22.6 weeks. Response to nerve block required an average of 1.4 procedures (range 1-2); mean follow-up after nerve block was 2.4 months (range 0.1-4.8). DISCUSSION: Children with refractory orchialgia often have comorbidities that suggest a multidisciplinary approach would be useful for treating them. The present study found that the majority of children with refractory orchialgia treated in the pediatric pain clinic responded to management. Major limitations, however, included small cohort size and short follow-up, particularly in those children undergoing nerve block. There was also no objective assessment of pain improvement or improvement in quality of life, which could be rectified with a prospective study. CONCLUSION: Collaboration and early referral for interdisciplinary pain management as one of these multidisciplinary approaches may help to coordinate care and ease patient suffering.

Do children with autism who pass false belief tasks understand the mind as active interpreter?

Interpretive diversity is the term used by Carpendale and Chandler (1996) to refer to the fact that two individuals exposed to precisely the same stimulus may interpret it in quite different, but equally plausible, ways. An appreciation of interpretive diversity is said by Carpendale and Chandler to represent a development in understanding that is qualitatively different from that necessary to succeed on false belief tasks. A study is reported in which children with autism and children with general delay were given a battery of tasks consisting of false belief tasks and tasks designed to test for an understanding of interpretive diversity. Findings from the present study offer limited support for Carpendale and Chandler's claim that tasks which test for an understanding of interpretive diversity may be more difficult than false belief tasks. Between-group differences in the consistency and quality of responses given by participants suggest that autistic and delayed children may have differed somewhat in their approach to the tasks given.

Implementation of a nurse-delivered intravitreal injection service.

PURPOSE: The purpose of this study was to introduce nurse-delivered intravitreal injections to increase medical retina treatment capacity. METHODS: Indemnity, clinical governance, training, planning, and implementation issues were addressed. The outcome measures were patient safety, patient experience, and clinic capacity. RESULTS: No serious vision-threatening complications were recorded in a consecutive series of 4000 nurse-delivered intravitreal injections. A Mann-Whitney test showed a significant increase in intravitreal injections (P=0.003) in the medical retina service after introduction of nurse-delivered intravitreal injections. The majority of patients accepted and were satisfied with a nurse-delivered intravitreal injection. DISCUSSION: Nurse-delivered intravitreal injections appear safe, acceptable to patients, and are an effective means to increase intravitreal injection capacity in medical retina clinics.

Choosing patient-reported outcome measures for cancer clinical research--practical principles and an algorithm to assist non-specialist researchers.

AIM: The purpose of this article is to give practical advice to researchers wishing to choose measures of quality of life and other patient-reported outcomes (PROs) for cancer clinical research. METHOD: Readers are guided through the process of selecting a patient-reported outcome measure (PROM) by means of six principles, illustrated with examples. RESULTS: PROM selection should always be undertaken with consideration of specific objectives, samples, treatments and available resources. Guiding principles include: (1) always consider PROMs early in the design process within the context of other methodological decisions; (2) choose a primary PROM that is as proximal to the cancer and/or its treatment as will add to knowledge and inform practice; (3) identify candidate PROMs primarily on the grounds of scaling and content; (4) appraise the reliability, validity and 'track records' of candidate PROMs in studies similar to that planned; (5) look ahead to practical concerns; and (6) take a minimalist approach to ad hoc items. CONCLUSION: The principles and algorithms presented in this article will assist cancer clinical researchers who lack specialist expertise in patient-reported outcome measurement to make appropriate choices when selecting PROMs for their next study.

Perceived determinants of risk for breast cancer and the relations among objective risk, perceived risk, and screening behavior over time.

Interrelations among perceived risk for breast cancer, objective risk factors, and both breast self-examination (BSE) and mammography screening were examined across two waves of a longitudinal study of breast cancer screening. Participants were a community sample of 335 predominantly White middle-class women, aged 37 to 77, who had not had breast cancer. Factors believed by women to determine their self-rated risk level for breast cancer were investigated. Women held optimistic biases about their own breast cancer risk; they often erroneously attributed their relatively lower perceived risk to personal actions, including mammography screening. Compliance with mammography screening but not BSE recommendations increased over time. Perceived susceptibility to breast cancer was related to both family history and breast symptomatology; early mammography screening was positively related to perceived susceptibility later in time.