Bridging the gap between diabetes care and mental health: perspectives of the Mental health IN DiabeteS Optimal Health Program (MINDS OHP).

BACKGROUND: Mental health problems are highly prevalent in people with type 1 diabetes mellitus (T1DM), which adversely impact physical health and quality of life. This study aimed to explore the experiences of people with T1DM who had completed the Mental health IN DiabeteS Optimal Health Program (MINDS OHP), a novel intervention developed to bridge the gap between physical and mental health care. METHOD: Participants with T1DM were invited to take part in a focus group or semi-structured interviews. Participants were recruited from outpatient and community settings. The focus group and interviews were audio-recorded and transcribed verbatim. Thematic content analysis was used and identified themes were cross-validated by researchers and member-checked by participants. RESULTS: Ten people with T1DM were included. Two key themes emerged: 'MINDS OHP experiences' and 'lived experiences of diabetes'. MINDS OHP experiences included five sub-themes: program benefits, follow-up and timing, suggested improvements, collaborative partners, and materials suitability. Lived experiences also included five sub-themes: bridging the gap between mental and physical health, support networks, stigma and shame, management intrusiveness, and adolescence and critical life points. CONCLUSIONS: The MINDS OHP for people with T1DM was generally well received, though study findings suggest a number of improvements could be made to the program, such as including family members, and consideration being given to its routine early inclusion in diabetes management, ideally in primary care.

'Employ Your Mind': a pilot evaluation of a programme to help people with serious mental illness obtain and retain employment.

OBJECTIVE: Cognitive impairments contribute to difficulty in obtaining employment for people with severe mental illnesses (SMIs). We describe a pilot evaluation of a programme, Employ Your Mind (EYM), which integrates cognitive remediation therapy (CRT) with vocational rehabilitation. METHOD: Sixty participants with SMIs enrolled in EYM, a 6-month programme that combines CRT exercises, individual project work and group reflection sessions about social interaction and cognitive functioning. Participants completed assessments of cognitive function (Audio Recorded Cognitive Screen, Wechsler Digit Span Task), psychosocial function (Work and Social Adjustment Scale, General Self-Efficacy Scale) and abilities related to work (Dialogue about Working Ability, Self-Assessment of Thinking Skills) at baseline and postprogramme. Paired t-tests were used to compare assessments of participants who completed the programme between the two time points. RESULTS: The programme was completed by 22 individuals. These individuals demonstrated significant improvement in cognitive function, social and work-related function, and subjective thinking ability after completing the EYM programme. CONCLUSION: The EYM programme is effective in improving cognition, impairments related to work and social function, and subjective thinking skills for some individuals with SMIs. Future evaluation of the programme should focus on enhanced retention and assessment of employment outcomes.

Beyond psychiatry: motivations for considering an Australian wellbeing program within Malaysian health services.

OBJECTIVES: To explore the relevance and adaptability of the Optimal Health Program for mental and primary healthcare providers in Malaysia. METHODS: Evaluate stakeholder engagement and training programme for psychiatrists, family medicine specialists, public health specialists, physicians, clinical psychologists, counsellors, and representatives from a patient support group. Evaluate the programme for applicability, as well as participant's knowledge and confidence in using key components. RESULTS: The training was very well received in terms of content, training materials and facilitation style. Development of culturally specific materials will be needed. Improvement in the self-rating measurement for knowledge and confidence in using key Optimal Health Program components was reported at the completion of the 2-day training. CONCLUSIONS: The Optimal Health Program has potential as a comprehensive socio-culturally responsive self-management programme that is relevant within mental health services and adaptable for task-sharing of mental health care in Malaysia.

Insights into hospitalisation of advanced cancer patients: a study of medical records.

The aim of this study was to explore reasons for the hospitalisation and place of death outcomes of terminal cancer patients. The methodology involved a qualitative content analysis of medical records pertaining to the last 3 months of life of 39 patients with one of four malignancies: prostate, breast, lung, or haematological. The results presentation is organised around three themes: decision hierarchy in health care, meanings of 'home', and late recognition of dying. Based on the detailed findings, this paper suggests that important insights into the broader goals of advanced cancer patients are offered by allied health staff, and that more effective use of the multidisciplinary team may support endeavours to achieve more home deaths for cancer patients who want this outcome. The analysis also provides new insights into the meaning of 'home' in interactions between advanced cancer patients and health professionals. The wish for 'home' appears bound up with other patient goals and the implications of this are discussed.

Helping people with a mental illness obtain work: the Health Optimisation Program for Employment.

OBJECTIVE: Inclusion in work and education remains problematic for many people with a mental illness. We describe a structured programme - the Health Optimisation Program for Employment - that supported people with a mental illness to gain employment or commence studies. METHOD: Twenty hours of the Health Optimisation Program for Employment were delivered to 600 individuals. Participants were asked to complete an evaluation survey encompassing vocational status and ratings of self-efficacy. RESULTS: Of the 364 participants who completed the baseline assessment, 168 responded to the evaluation survey 6 months after the delivery of the Health Optimisation Program for Employment. Of these, 21.5% had started a new job, while a further 42.8% were either volunteering or studying. Satisfaction with the programme was high and self-efficacy ratings improved significantly over the short term only. CONCLUSIONS: The Health Optimisation Program for Employment requires further evaluation using rigorous scientific methodology but these initial results are encouraging in terms of vocational attainment for people with a mental illness, in the Australian context.

Metastatic non-small cell lung cancer: a benchmark for quality end-of-life cancer care?

OBJECTIVES: To investigate the quality of end-of-life care for patients with metastatic non-small cell lung cancer (NSCLC). DESIGN AND PARTICIPANTS: Retrospective cohort study of patients from first hospitalisation for metastatic disease until death, using hospital, emergency department and death registration data from Victoria, Australia, between 1 July 2003 and 30 June 2010. MAIN OUTCOME MEASURES: Emergency department and hospital use; aggressiveness of care including intensive care and chemotherapy in last 30 days; palliative and supportive care provision; and place of death. RESULTS: Metastatic NSCLC patients underwent limited aggressive treatment such as intensive care (5%) and chemotherapy (< 1%) at the end of life; however, high numbers died in acute hospitals (42%) and 61% had a length of stay of greater than 14 days in the last month of life. Although 62% were referred to palliative care services, this occurred late in the illness. In a logistic regression model adjusted for year of metastasis, age, sex, metastatic site and survival, the odds ratio (OR) of dying in an acute hospital bed compared with death at home or in a hospice unit decreased with receipt of palliative care (OR, 0.25; 95% CI, 0.21-0.30) and multimodality supportive care (OR, 0.65; 95% CI, 0.56-0.75). CONCLUSION: Because early palliative care for patients with metastatic NSCLC is recommended, we propose that this group be considered a benchmark of quality end-of-life care. Future work is required to determine appropriate quality-of-care targets in this and other cancer patient cohorts, with particular focus on the timeliness of palliative care engagement.

The development and evaluation of a multimedia resource for family carers of patients receiving palliative care: a consumer-led project.

OBJECTIVE: Previous intervention research has shown that group education sessions for carers are effective but not always feasible due to the demands of the caregiving role and the difficulty in getting carers to attend. This project was a consumer-led research initiative to develop and evaluate a multimedia resource (DVD) providing information and support for carers of people receiving palliative care. METHOD: Eight carers were recruited from a community palliative care service to form a steering committee for the project. In collaboration with two researchers, the committee discussed the topics that would be included in the resource, developed an interview guide, participated in the filmed interviews, and developed the evaluation program. The steering committee participated in a focus group as part of the evaluation to elicit their experiences of the project. An evaluation was conducted that included the following: questionnaires for 29 carers and 17 palliative care health professionals; follow-up telephone interviews with carers; a focus group with health professionals; and a focus group with the Carer Steering Committee. RESULTS: The carers and health professionals reported that the DVD was informative (93 and 94%, respectively), realistic (96 and 88%), supportive (93 and 88%), and helpful (83 and 100%). All health professionals and carers reported that they would recommend the resource to carers. Carers on the steering committee reported substantial benefits that involved the opportunity to help others and to openly discuss and reflect on their experiences. SIGNIFICANCE OF RESULTS: This is an important resource that can be utilized to support family carers and introduce palliative care. Currently, 1500 copies have been distributed to palliative care services and professionals nationwide and is available online at centreforpallcare.org/index.php/resources/carer_dvd/. Development of this DVD represents a strong collaboration between carers and researchers to produce a resource that is informative, supportive, and meaningful.

Health care professionals' perspectives of living and dying with primary malignant glioma: Implications for a unique cancer trajectory.

OBJECTIVES: Health care professionals (HCPs) caring for people with primary malignant glioma (PMG) and their carers see many of the profound challenges facing this group, yet their perspectives are not documented. This study aimed to understand and document the unique perspective of HCPs in relation to the supportive and palliative care needs of patients with PMG and their carers, with a view to developing a model of care. METHODS: Qualitative study involving semi-structured focus groups and interviews with 35 medical, nursing and allied health staff actively engaged in providing care for this patient group. Purposive and theoretical sampling from two major metropolitan hospitals and one community palliative care service in Australia was utilised to seek perspectives from a variety of disciplines and health care settings. Thematic analysis was conducted by three independent researchers, using a constant comparative method influenced by grounded theory. RESULTS: Key themes relating to the needs of people with PMG which were apparent from the HCPs included: The difference in the illness course of glioma compared to other cancers; Limitations of current medical care; Challenges in balancing hope with reality of the illness; and Recommendations to improve care, including recognising the role of family and moving from a model where services are offered in response to demonstrated needs. Significance of the results: Current models of care based upon the classic cancer trajectory are unresponsive to the needs of people with PMG. Care may be enhanced by moving towards a proactive approach, extending the goals of care beyond medical needs and broadening the focus of care to include family needs.

Diagnosis matters: the differing clinical trajectories for terminal prostate, lung and haematological cancers.

BACKGROUND: There is a belief that end-of-life care issues are similar for all cancer patients, irrespective of their primary cancer diagnosis. This exploratory study into the terminal trajectories of three common cancers challenges this belief. METHODS: A retrospective, systematic, and mixed qualitative and quantitative medical record review of 30 deceased patients in 2010 was performed between two Victorian networks. The last 90 days of life were examined in three equally distributed cancer groups - prostate, lung and haematological. RESULTS: The trajectories for the three malignancies differed in temporal, symptomatic, supportive and interventional characteristics. DISCUSSION: Our study suggests diagnosis does indeed matter. The varying symptomatology for the different cancers markedly influenced clinical management, utilisation of palliative care services and the site of care and site of death. Our study suggests potential areas for better collaboration between general practitioners, community and specialist palliative care services. Emerging work supports our findings, but this area warrants further research.

Mapping the patterns of care, the receipt of palliative care and the site of death for patients with malignant glioma.

High-grade malignant glioma patients face a poor prognosis, preceded by rapid functional and neurobehavioural changes, making multidisciplinary care incorporating supportive and palliative care important. This study aimed to quantify the association between symptoms,receipt of supportive and palliative care and site of death. We undertook a retrospective cohort study between 2003 and 2009 of incident malignant glioma cases who survived for at least 120 days between their first hospitalisation and their death (n = 678) in Victoria, Australia, using linked hospital, emergency department and death data. The median age of patients was 62 years, 40% were female, and the median survival was 11 months. Twenty-six percent of patients died outside of hospital, 49% in a palliative care bed/hospice setting and 25% in an acute hospital bed. Patients having 1 or more symptoms were more than five times as likely to receive palliative care. Patients who receive palliative care are 1.7 times more likely to die outside of hospital. In conclusion malignant glioma patients with a high burden of symptoms are more likely to receive palliative care and, in turn, patients who receive palliative care are more likely to die at home.

Clinical presentation and patterns of care for short-term survivors of malignant glioma.

Palliative care provision for patients with high-grade malignant glioma is often under-utilised. Difficulties in prognostication and inter-patient variability in survival may limit timely referral. This study sought to (1) describe the clinical presentation of short-term survivors of malignant glioma (survival time <120 days); (2) map their hospital utilisation, including palliative and supportive care service use, and place of death; (3) identify factors which may be important to serve as a prompt for palliative care referral. A retrospective cohort study of incident malignant glioma cases between 2003-2009 surviving <120 days in Victoria, Australia was undertaken (n = 482). Cases were stratified according to the patient's survival status (dead vs. alive) at the end of the diagnosis admission, and at 120 days from diagnosis. Palliative care was received by 78 % of patients who died during the diagnosis admission. Only 12 % of patients who survived the admission and then deteriorated rapidly dying in the following 120 days were referred to palliative care in their hospital admission, suggesting an important clinical subgroup that may miss out on being linked into palliative care services. The strongest predictor of death during the diagnosis admission was the presence of cognitive or behavioural symptoms, which may be an important prompt for early palliative care referral.

"I'm just waiting ": an exploration of the experience of living and dying with primary malignant glioma.

PURPOSE: Referral to supportive and palliative care services for people with high-grade primary malignant glioma (PMG) often occurs late in the illness course, despite significant care needs and overall poor prognosis. This study aimed to understand patient experience at the end of life and document supportive and palliative care needs. METHODS: A qualitative study was conducted involving ten PMG patients who were at different stages in the illness course including the end of life and had varying levels of physical and cognitive function. Consecutive, eligible patients attending neurosurgery, oncology, and palliative care services of two metropolitan hospitals were recruited. In-depth interviews explored supportive and palliative care needs across the disease trajectory. Interviews were analysed independently by three investigators consistent with a grounded theory approach, and emerging ideas were compared and refined to define key patient experiences. RESULTS: Despite the medical treatment and supportive care available, there remains a gap in services addressing complex existential and psychosocial needs that were markedly valued by patients. Patient experience was characterised by a pervasive loss of all that encompassed their former sense of self and a focus on immediate needs. CONCLUSIONS: Patients in this study had substantial needs, which were often not shared and not addressed by the current medical system of care. An improved multidisciplinary care model is indicated, which proactively (1) engages care coordination and advocacy; (2) minimises patients' sense of waiting and uncertainty through mapping out a plan, including involvement of palliative care in a timely fashion; and (3) actively invites discussion around goals and preferences for care to promote patients' sense of self.

Exploring health care providers' perceptions of the needs of stroke carers: informing development of an optimal health program.

BACKGROUND: Health care provider experiences of the carer have been researched, but little is written about how these can inform development of support programs. OBJECTIVES: This study aimed to (1) explore health care provider perceptions of stroke carer roles and support needs and (2) examine carer needs across the stroke care trajectory to assist with development of an Optimal Health Program (OHP) to support carers. This study is part of a staged program of research that will evaluate and refine the OHP. METHODS: Four dual-moderated semi-structured focus groups of stroke health care providers across acute, subacute, and community rehabilitation services were conducted. Facilitators used a semi-structured focus group schedule to guide discussion. Sessions were recorded, transcribed, and analyzed using thematic and content analysis. RESULTS: Three key themes emerged: transition, information, and impact of stroke. A number of subthemes highlighted the distinct roles of health care providers and carers. Specific elements of the OHP were identified as having the potential to advance support for carers across the stroke care trajectory. DISCUSSION: Findings support the integration of an OHP for carers within existing stroke care services in Australian public hospital and community settings. CONCLUSION: This study suggests how health care provider experiences could inform a self-management OHP to assist carers in navigating stroke services and to address their health-related concerns.

Implementation of the psycho-existential symptom assessment scale in palliative care: Qualitative analysis of stakeholders perspectives.

OBJECTIVES: To explore 1) perspectives of feasibility, acceptability, integration and sustainability of the Psycho-existential Symptom Assessment Scale (PeSAS); 2) barriers and benefits of PeSAS in its real-world performance; and 3) clinician confidence and perceived competency in using PeSAS. METHODS: Thirty-one key stakeholders from nine palliative care services who participated in the implementation of the PeSAS were purposefully sampled and participated in semi-structured interviews. Data was managed using the Determinants Framework. RESULTS: Benefits of PeSAS were a common language enhancing communication, identifying symptoms of psycho-existential distress, initiating referral, providing acknowledgement for previously unrecognised distress and enhancing patient agency. Key barriers were the availability of skilled clinicians, patient characteristics such as delirium and phase of illness, avoidance of confronting end-of-life conversations, information technology resourcing, and reduced engagement due to language, culture and health literacy. CONCLUSION: Screening using the PeSAS is feasible and acceptable once clinicians are adequately trained to administer it. Our study highlights the benefits of qualitative enquiry in developing and implementing new interventions. PRACTICE IMPLICATIONS: The identification and management of psycho-existential symptoms should be part of routine practice in palliative care. However, adequate staff training, resourcing, referral pathways and implementation process and outcome assessments are important to ensure sustainability.

Premature mortality 16 years after emergency department presentation among homeless and at risk of homelessness adults: a retrospective longitudinal cohort study.

BACKGROUND: People experiencing homelessness have an increased risk of mortality. The association between being at risk of homelessness and premature mortality is unclear. We aimed to determine all-cause and cause-specific mortality in patients who were homeless, at risk of homelessness (marginally housed), or housed. METHODS: This retrospective longitudinal cohort study compared mortality patterns in adult patients identified in 2003/04 by linking data from an Australian metropolitan emergency department to national mortality data. We used Cox proportional hazards models to estimate associations between housing status and mortality. To address competing risks, cause-specific hazards were modelled and transformed into stacked cumulative incidence functions. FINDINGS: Data from 6290 patients (homeless deceased = 382/1050, marginally housed deceased = 259/518, housed deceased = 1204/4722) found increased risk of mortality in homeless [hazard ratio (HR) = 4.0, 95% confidence interval (CI) = 2.0-3.3) and marginally housed (HR = 2.6, 95% CI = 3.4-4.8) patients. Homeless patients had an excess risk from external causes (HR = 6.1, 95% CI = 4.47-8.35), cardiovascular disease (HR = 4.9, 95% CI = 2.78-8.70) and cancer (HR = 1.5, 95% CI = 1.15-2.09). Marginally housed patients had increased risk from external causes (HR = 3.6, 95% CI = 2.36-5.40) and respiratory diseases (HR = 4.7, 95% CI = 1.82-12.05). Taking account of competing risk, marked inequality was observed, with homeless, marginally housed and housed patients having probabilities of death by 55 years of 0.2, 0.1 and 0.02, respectively. CONCLUSIONS: Mortality rates were elevated in patients who were homeless or at risk of homelessness. Increasing numbers of people are at risk of homelessness, and the effect of this on mortality is relatively unrecognized. Marginal housing may assuage some risk of premature mortality associated with homelessness; however, it is not equivalent to stable housing.

Initial evaluation of the Optimal Health Program for people with diabetes: 12-month outcomes of a randomised controlled trial.

OBJECTIVE: This study aimed to evaluate if a new Mental health IN DiabeteS Optimal Health Program (MINDS OHP) compared with usual care in adults with Type 1 and Type 2 diabetes would improve psychosocial outcomes including self-efficacy and quality of life.Design and Main Outcome Measures This initial randomised controlled trial evaluated MINDS OHP compared with usual care. Participants were recruited through outpatient clinics and community organisations. The intervention group received nine sessions with assessments over twelve months. Primary outcomes were self-efficacy and quality of life. Secondary outcomes included diabetes distress and anxiety. RESULTS: There were 51 participants in the control group (mean age = 52) and 55 in the intervention group (mean age = 55). There were significant main effects of time in general self-efficacy, diabetes distress, diabetes self-efficacy, and illness perceptions, however no significant between-group differences in primary or secondary outcomes. Post-hoc analyses revealed MINDS OHP improved diabetes self-efficacy for participants with mild to severe depression and anxiety, with a small effect. CONCLUSION: Initial evaluation found MINDS OHP was associated with improved diabetes self-efficacy for adults with diabetes, for people with mild to severe levels of distress, with small effect. Further research is required to explore whether this disease-specific, collaborative care-focused intervention benefits the mental health of people with diabetes.

Complex health service needs for people who are homeless.

BACKGROUND: Homeless people face many challenges in accessing and utilising health services to obtain psychosocial supports offered in hospital and community settings. The complex nature of health issues is compounded by lack of accessibility to services and lack of appropriate and safe housing. OBJECTIVE: To examine the perceptions and experiences of homeless people in relation to their health service needs as well as those of service providers involved with their care. DESIGN: A purposive sampling approach was undertaken with a thematic framework analysis of semi-structured interviews. Participants. Interviews were undertaken with 20 homeless people who accessed the emergency department in an acute hospital in Melbourne, Australia and 27 service providers involved in hospital and community care. RESULTS: Six key themes were identified from interviews: complexity of care needs, respect for homeless people and co-workers, engagement as a key strategy in continued care, lack of after-hour services, lack of appropriate accommodation and complexity of services. CONCLUSIONS: Findings revealed the complex and diverse nature of health concerns in homeless people. The demand on hospital services continues to increase and unless government policies take into consideration the psychosocial demands of the communities most vulnerable people efforts to divert hospital demand will continue to fail.

Long-term effects of homelessness on mortality: a 15-year Australian cohort study.

OBJECTIVE: To examine the effect of homelessness on mortality. METHODS: This 15-year retrospective longitudinal cohort study compared mortality outcomes of homeless and non-homeless adults attending the emergency department of an inner-city public hospital in Melbourne, Victoria between 1 January 2003 and 31 December 2004. Homeless individuals had ≥1 recorded episodes of homelessness within the recruitment period, categorised by type: primary, secondary, tertiary, marginally housed. Non-homeless individuals were stably housed throughout. RESULTS: Over 15 years, homeless individuals had a higher mortality rate (11.89 vs. 8.10 per 1,000 person-years), significantly increased mortality risk (rate ratio 1.47, 95% confidence interval [CI] 1.26-1.71) and younger median age at death (66.60 vs. 78.19 years) compared to non-homeless individuals. Using adjusted Cox proportional hazards models, primary (hazard ratio [HR] 2.05, 95%CI 1.67-2.50), secondary (HR 1.60, 95%CI 1.23-2.10) and tertiary (HR 1.72, 95%CI 1.16-2.56) homelessness were independent risk factors for premature mortality. CONCLUSION: At least one recorded episode of primary, secondary, or tertiary homelessness was associated with premature mortality and younger age at death over a 15-year period. Implications for public health: Accurately identifying individuals experiencing primary, secondary or tertiary homelessness at the emergency department may enable targeted interventions that could potentially reduce their risk of premature mortality.

Effectiveness of a culturally adapted biopsychosocial intervention (POHON SIHAT) in improving self-efficacy in patients with diabetes attending primary healthcare clinics in Putrajaya, Malaysia: study protocol of a randomised controlled trial.

INTRODUCTION: People with diabetes are often associated with multifaceted factors and comorbidities. Diabetes management frameworks need to integrate a biopsychosocial, patient-centred approach. Despite increasing efforts in promotion and diabetes education, interventions integrating both physical and mental health components are still lacking in Malaysia. The Optimal Health Programme (OHP) offers an innovative biopsychosocial framework to promote overall well-being and self-efficacy, going beyond education alone and has been identified as relevant within the primary care system. Following a comprehensive cultural adaptation process, Malaysia's first OHP was developed under the name 'Pohon Sihat' (OHP). The study aims to evaluate the effectiveness of the mental health-based self-management and wellness programme in improving self-efficacy and well-being in primary care patients with diabetes mellitus. METHODS AND ANALYSIS: This biopsychosocial intervention randomised controlled trial will engage patients (n=156) diagnosed with type 2 diabetes mellitus (T2DM) from four primary healthcare clinics in Putrajaya. Participants will be randomised to either OHP plus treatment as usual. The 2-hour weekly sessions over five consecutive weeks, and 2-hour booster session post 3 months will be facilitated by trained mental health practitioners and diabetes educators. Primary outcomes will include self-efficacy measures, while secondary outcomes will include well-being, anxiety, depression, self-care behaviours and haemoglobin A1c glucose test. Outcome measures will be assessed at baseline, immediately postintervention, as well as at 3 months and 6 months postintervention. Where appropriate, intention-to-treat analyses will be performed. ETHICS AND DISSEMINATION: This study has ethics approval from the Medical Research and Ethics Committee, Ministry of Health Malaysia (NMRR-17-3426-38212). Study findings will be shared with the Ministry of Health Malaysia and participating healthcare clinics. Outcomes will also be shared through publication, conference presentations and publication in a peer-reviewed journal. TRIAL REGISTRATION NUMBER: NCT03601884.