Dementia is the second most feared condition among Australian health service consumers: results of a cross-sectional survey.

Fear of disease may act as a barrier to screening or early diagnosis. This cross-sectional survey of 355 people attending outpatient clinics at one Australian hospital found that cancer (34%) and dementia (29%) were the most feared diseases. Participants aged 65 years and over feared dementia the most.

Perceptions of community members in Australia about the risk factors, symptoms and impacts of dementia: A cross-sectional questionnaire study.

OBJECTIVES: Ensuring that the Australian public has an accurate understanding of the characteristics of dementia may assist in improving timely detection of dementia. This cross-sectional questionnaire study aimed to examine community members' perceptions of the risk factors, symptoms and impacts of dementia. METHODS: Participants were recruited from outpatient units at a major regional hospital and were aged at least 18 years, a patient or an accompanying support person, did not have a dementia diagnosis, had sufficient English knowledge and were well enough to complete a survey. Participants completed a web-based survey on a touchscreen computer including items exploring knowledge of dementia risk factors, symptoms and perceived impacts if they or a loved one had dementia. Counts and proportions were calculated and perceived impacts of dementia were compared for self versus loved one using a χ2 test. RESULTS: Of 353 eligible individuals approached, 208 consented and were included in the study. Between 30% and 61% (n = 62-127) of participants believed modifiable factors such as high alcohol consumption and high blood pressure were associated with increased risk of dementia. While a majority of participants (87-96%; n = 164-181) identified memory-related symptoms, less than one-third recognised behavioural symptoms. Participants were more likely to identify emotional and practical impacts compared to physical or social impacts as most difficult if they or a loved one had dementia. CONCLUSIONS: There remains a need for increased community education to address knowledge gaps regarding modifiable risk factors, behavioural symptoms and potential impacts of dementia on the individual diagnosed and their carers.

Attitude toward dementia and preferences for diagnosis in Japanese health service consumers.

BACKGROUND: Being diagnosed with dementia is a confronting experience for any individual and their caregiver. However, a diagnosis provides opportunity for future preparation for management of the condition. This study investigated attitudes toward dementia and preferences for diagnosis among a sample of health service consumers in Japan. METHODS: Participants were patients or accompanying support persons (n = 217) who visited the specialty outpatient clinic of four hospital departments. The survey was conducted using an iPad with answers sent automatically to a secure server. The survey included items about the participants' most feared diseases and the reasons behind those fears, estimates of dementia prevalence in Japan, and preferences regarding a diagnosis of dementia and the reasons for their preference. RESULTS: The most feared disease was cancer (43.8 %), followed by dementia (18 %). Those selecting dementia most commonly reported practical, emotional and social impacts as the reasons why they most feared this condition. Almost all participants preferred to know the diagnosis of dementia as soon as possible for themselves, with significantly fewer preferring their spouse to know as soon as possible if they had dementia (95.9 % for self vs. 67.5 % for partner/spouse, p < 0.001). On average, participants estimated that 18.1 % of Japanese people are diagnosed with dementia by age 65, while they thought that 43.7 % of Japanese people are diagnosed with dementia by age 85. CONCLUSIONS: The findings highlight a need for community education about the significant impacts of dementia on the lives of individuals and their caregivers. People were more reluctant for their spouse to receive a diagnosis as soon as possible if they had dementia. Physicians should sensitively disclose diagnosis and ensure they involve both the patient and their relatives in discussions about diagnosis disclosure.

A patient-centred approach to determine optimal supportive care across the cancer trajectory: a cross-sectional study.

OBJECTIVE: Supportive care is recognised as an integral component of cancer care. To comprehensively improve supportive care and to inform policy, it is essential to examine consumer's views of health services. This study aimed to develop and test a patient-centred approach by measuring consumer perspectives on the importance of aspects of supportive care to determine what patients consider highest quality or 'optimal' care. METHODS: A cross-sectional survey was conducted in oncology outpatient clinics. Eligible patients were invited to complete the optimal care survey on an iPad. The survey consisted of 69 items assessing 14 care domains across five phases of the care trajectory. RESULTS: A total of 359 participants completed the survey. Items in the 'preparation for treatment' and 'follow-up and end-of-life care' phases were endorsed as very important/essential to optimal care by most participants (79-97% and 80-100%, respectively). Items in the 'preparation for first appointment' (48-84%), 'first appointment' (51-97%) and 'receiving treatment' (32-93%) phases showed greater variation in endorsement. CONCLUSION: This study provides a patient-centred tool for quantifying optimal supportive care for people with cancer across the treatment trajectory. This tool could be used by healthcare providers to evaluate existing care quality, develop policies and guide clinical service improvements.

A multi-center randomized controlled trial to reduce unmet needs, depression, and anxiety among hematological cancer patients and their support persons.

Purpose: Individuals diagnosed with a high-grade hematological malignancy are at high risk for psychosocial distress. This study aimed to examine the effectiveness of a web-based information tool and nurse delivered telephone support in reducing: (i) unmet information needs; (ii) depression; and (iii) anxiety, among hematological cancer patients and their support persons (SPs).Methods: Patients with a new diagnosis of acute myeloid leukemia, acute lymphoblastic leukemia, Burkitt lymphoma, or lymphoblastic lymphoma and their SPs were enrolled in a prospective multi-site randomized trial. Participants received either access to an online information tool and telephone support from a hematology nurse, or usual care. Outcome data were collected 2, 4, 8, and 12 weeks post-recruitment. The primary endpoint was unmet information needs.Results: Data from 60 patients and 15 SPs were included in the analysis. There were no statistically significant differences in unmet information needs, depression or anxiety between intervention and control groups for patients. Patients in both groups demonstrated a decrease in information needs over the intervention period. Post hoc analyses revealed that patients who did not achieve remission with the first cycle of treatment experienced increased anxiety from 4 weeks until the end of the study (p = 0.008).Conclusions: A web-based information tool and nurse delivered telephone support did not reduce unmet information needs, depression or anxiety among hematological cancer patients, however this finding is inconclusive given the low power of the study.Implications for Psychosocial Providers or Policy: Patients who do not achieve remission are at high risk of anxiety, and may benefit from targeted psychological intervention.

Do haematological cancer patients get the information they need about their cancer and its treatment? Results of a cross-sectional survey.

PURPOSE: To explore the experiences of haematological cancer outpatients in obtaining information about their cancer and its treatment. METHODS: A cross-sectional survey of adult haematological cancer outpatients was conducted. Participants completed two pen-and-paper questionnaires: the first examined demographics and disease characteristics; the second, completed four weeks later, asked about the cancer information received. Participants indicated whether they received the information they needed about medical procedures and self-management, experiences regarding doctor-patient communication, and self-efficacy in seeking information and support. Where possible, items were derived from Australian psychosocial cancer care guidelines. RESULTS: Two hundred and ninety-three (84%) patients consented to participate, with 170 (58%) completing both questionnaires. Most participants reported receiving information in accordance with guidelines. Areas identified as requiring improvement included difficulty recalling information (28%); information overload (26%); insufficient opportunity to ask questions (23%); and insufficient information about managing anxiety related to medical procedures (20%). CONCLUSION: While many haematological cancer patients report receiving adequate information, there is room for improvement. Implementation of evidence-based strategies, such as decision aids or audiotapes of the consultation, may help to improve information experiences. PRACTICE IMPLICATIONS: A patient-centred approach to information provision is essential for ensuring information addresses the needs and preferences of the patient.

The new challenge for improving psychosocial cancer care: shifting to a system-based approach.

INTRODUCTION: There is a need to improve the psychosocial well-being of cancer patients. To date, intervention research has primarily focussed on improving psychosocial well-being through targeting singular aspects of care at the individual patient level. Sustainable, high-quality psychosocial care should address the issues faced by people diagnosed with cancer throughout the care pathway using a system-based approach. AIMS: To examine the number of intervention trials attempting to improve psychosocial cancer care that have implemented a system-based approach. METHOD: Five journals were selected and relevant studies across all years were extracted. Four criteria, argued to be essential characteristics of system-based change, were assessed: (1) establishing a culture change within the healthcare system/organisation, through designated leaders who endorse organisational goals; (2) adopting a multidisciplinary approach to change; (3) mapping the system and identifying points of leverage; and (4) measuring the impact of change and adapting establish feedback loops. RESULTS: The search strategy returned 1174 citations, of which five met the inclusion criteria. Of the intervention studies identified, three met none of the four defined criteria for a systems-based intervention, one study met criterion 2 only, and one study met all four criteria, however, was not a rigorous study design. CONCLUSIONS: This review of published psychosocial intervention trials in top-ranking psychosocial cancer care journals only found one study that met our criteria for evaluating system-based change. This is likely to be a consequence of the significant pragmatic and political barriers to conducting system-based intervention research.

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

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

Not asking cancer patients about their preferences does make a difference. A cross-sectional study examining cancer patients' preferred and perceived role in decision-making regarding their last important cancer treatment.

We examined whether not having been asked by their clinicians about how involved cancer patients would like to be in their treatment decisions is related to discordance between patients' preferred and perceived involvement in treatment decision-making. This was a cross-sectional survey of adult cancer patients recruited from five medical and radiation oncology outpatient clinics in Australia. Discordance of patients' preferred and perceived decision-making roles was assessed via an adapted version of the Control Preferences Scale. Logistic regression modelling was conducted to assess the relationship between role discordance and whether patients were not asked but wanted to be asked about how involved they would like to be in deciding on their treatment. Of 423 study participants, almost a third (n = 128, 31%) reported discordance between their preferred and perceived involvement in their treatment decisions. Of those reporting discordance, 72% (n = 92) were less involved than they would have liked to have been. Not being asked about their preferences for involvement in treatment decisions, despite wanting this, was associated with discordance between patients' preferred and perceived involvement in treatment decision-making (p < 0.04). To achieve patient-centred care, it is vital that clinicians seek patients' views about how involved they would like to be in deciding on their cancer treatment.

Preferences for models of peer support in the digital era: A cross-sectional survey of people with cancer.

OBJECTIVE: Many people with cancer report an unmet need for peer support, yet participation rates are low. This study examined cancer patients' preferences for participating in peer support, and the characteristics associated with having or wanting to participate in peer support. METHODS: Adult cancer patients were recruited from outpatient oncology clinics at 5 hospitals in Australia. Participants were invited to self-complete 2 questionnaires: one at recruitment assessing their demographic and cancer characteristics, and another 4 weeks later assessing their preferences for participating in cancer-related peer support. RESULTS: The peer support questionnaire was completed by 177/273 (65%) of participants. Most (59%, n = 104) had or wanted to participate in peer support. More than half reported that it was important the people they connected with had the same cancer treatment (56%, n = 99) or type of cancer (53%, n = 94) as themselves. Half had or wanted to participate in 1-to-1 peer support (52%, n = 92). Half had or wanted to connect with peers face-to-face (53%, n = 93). Only 13% (n = 23) were receptive to connecting with peers over the internet. Being aged ≤65 years was significantly associated (OR = 2.3; 95% CI: 1.1-5.1) with reporting a preference for participating in peer support. CONCLUSIONS: Cancer patients are interested in participating in peer support, particularly those who are younger. Despite the digital era, traditional forms of peer support continue to be important in supporting people with cancer. Greater understanding of the barriers to cancer patients' involvement in potentially low cost and high reach web-based models of peer support is required.