The capacity to handle money and personal finances is crucial for living independently. Cognitive decline can lead to financial mismanagement (e.g., forgetting to pay bills, overspending) and exploitation (e.g., falling for financial scams). While greater susceptibility to financial mismanagement and exploitation is commonly reported by carers of people with dementia, objective neuropsychological measures of these financial skills are scarce. It is also unclear whether profiles of change in financial skills vary across different stages and subtypes of dementia. A normative sample of 112 healthy controls and individuals with mild cognitive impairment (MCI; n = 16), Alzheimer’s disease (AD; n = 7) or behavioural-variant frontotemporal dementia (bvFTD; n = 18) completed a novel neuropsychological Test of Financial Skills (TOFS), which assessed performance across three key areas: everyday financial tasks, susceptibility to financial scams and financial goal planning. For all patients and controls, measures of dementia severity (Clinical Dementia Rating Scale) and general cognition (Addenbrooke’s Cognitive Examination, 3 rd Ed.) were also collected. Relative to controls, AD and bvFTD patients showed lower overall performance on the TOFS, whereas MCI patients did not differ significantly from controls. While AD and bvFTD patients showed similar levels of impairment on everyday financial tasks and financial goal planning, bvFTD patients performed significantly worse on the financial scams subtest. Across all participants, lower TOFS performance was associated with greater dementia severity and cognitive impairment. Our results are consistent with previous studies of carer-reported changes in financial mismanagement and exploitation in people with dementia. Notably, we found important differences in the areas of financial skills impacted by different stages and subtypes of dementia. These findings provide novel insights into the different factors that contribute to deficits in financial skills in people with dementia, highlight the importance of objective neuropsychological assessments in this area, and open avenues for targeted financial support strategies.
BACKGROUND:The capacity to handle money and personal finances is crucial for living independently. Cognitive decline can lead to financial mismanagement (e.g., forgetting to pay bills, overspending) and exploitation (e.g., falling for financial scams). While greater susceptibility to financial mismanagement and exploitation is commonly reported by carers of people with dementia, objective neuropsychological measures of these financial skills are scarce. It is also unclear whether profiles of change in financial skills vary across different stages and subtypes of dementia. METHOD:A normative sample of 112 healthy controls and individuals with mild cognitive impairment (MCI; n = 16), Alzheimer's disease (AD; n = 7) or behavioural-variant frontotemporal dementia (bvFTD; n = 18) completed a novel neuropsychological Test of Financial Skills (TOFS), which assessed performance across three key areas: everyday financial tasks, susceptibility to financial scams and financial goal planning. For all patients and controls, measures of dementia severity (Clinical Dementia Rating Scale) and general cognition (Addenbrooke's Cognitive Examination, 3rd Ed.) were also collected. RESULT:Relative to controls, AD and bvFTD patients showed lower overall performance on the TOFS, whereas MCI patients did not differ significantly from controls. While AD and bvFTD patients showed similar levels of impairment on everyday financial tasks and financial goal planning, bvFTD patients performed significantly worse on the financial scams subtest. Across all participants, lower TOFS performance was associated with greater dementia severity and cognitive impairment. CONCLUSION:Our results are consistent with previous studies of carer-reported changes in financial mismanagement and exploitation in people with dementia. Notably, we found important differences in the areas of financial skills impacted by different stages and subtypes of dementia. These findings provide novel insights into the different factors that contribute to deficits in financial skills in people with dementia, highlight the importance of objective neuropsychological assessments in this area, and open avenues for targeted financial support strategies.
Management of low-risk ductal carcinoma in situ (DCIS) is controversial, with clinical trials currently assessing the safety of active monitoring amidst concern about overtreatment. Little is known about general community views regarding DCIS and its management. We aimed to explore women’s understanding and views about low-risk DCIS and current and potential future management options. This mixed-method study involved qualitative focus groups and brief quantitative questionnaires. Participants were screening-aged (50–74 years) women, with diverse socioeconomic backgrounds and no personal history of breast cancer/DCIS, recruited from across metropolitan Sydney, Australia. Sessions incorporated an informative presentation interspersed with group discussions which were audio-recorded, transcribed and analysed thematically. Fifty-six women took part in six age-stratified focus groups. Prior awareness of DCIS was limited, however women developed reasonable understanding of DCIS and the relevant issues. Overall, women expressed substantial support for active monitoring being offered as a management approach for low-risk DCIS, and many were interested in participating in a hypothetical clinical trial. Although some women expressed concern that current management may sometimes represent overtreatment, there were mixed views about personally accepting monitoring. Women noted a number of important questions and considerations that would factor into their decision making. Our findings about women’s perceptions of active monitoring for DCIS are timely while results of ongoing clinical trials of monitoring are awaited, and may inform clinicians and investigators designing future, similar trials. Exploration of offering well-informed patients the choice of non-surgical management of low-risk DCIS, even outside a clinical trial setting, may be warranted.
Purpose Up to 70% of survivors report cognitive symptoms after chemotherapy. We compared two cognitive rehabilitation programs to a control group in cancer survivors. Methods Study population were adult cancer survivors with cognitive symptoms 6–60 months after adjuvant chemotherapy. Participants randomised to: Attention Process Training (APT), Compensatory Strategy Training (CST), or control group. Active interventions comprised 6–week, 2–h/week small group sessions. Assessments: pre- and post-intervention, 6- and 12-months later. Primary outcome was change in cognitive symptoms (FACT-COG-PCI subscale) between baseline and post-intervention. Secondary endpoints included objective neuropsychological performance, Functional Impact Assessment (FIA), patient-reported outcome measures, and associations. Analyses were on an intention-to-treat basis. Analysis of covariance mixed models were used for continuous outcomes. Results Sixty-five participants were randomised (APT n = 21; CST n = 24; controls n = 20): 94% breast cancer, median age 54. Median time since chemotherapy 20.7 months. FACT-COG-PCI, clinical neuropsychological T -scores, and FIA improved in all groups over time, but no significant differences between arms. On mean neuropsychological T -scores 19/65 (29%) were impaired at baseline; post-intervention impairment controls 31.3%, CST 16.7%, APT 20.0%. On FIA at baseline, nine were impaired; this decreased to three post-intervention (one/group). FACT-COG-PCI was weakly associated with neuropsychological tests (rho = 0.24, p = 0.051) at baseline, and had no association with FIA. Neuropsychological total mean T -score was moderately positively associated with FIA (rho = 0.37, p = 0.003). Conclusion There were no significant differences between intervention groups and controls using linear mixed models adjusted for baseline scores. Implications for Cancer Survivors Cognitive symptoms and neuropsychological test scores improve over time.
ObjectivesDCIS is a breast malignancy contained within the milk ducts. Prognostic uncertainty means discussing DCIS and its treatment are challenging. Recognition that some DCIS lesions might remain indolent for many years has led to concern about overtreatment, with international clinical trials underway assessing the safety of active monitoring for low-risk DCIS. We aimed to explore women’s experiences of diagnosis and treatment of low-risk DCIS and their views about potential future management options.MethodParticipants were 30 women aged 50–74 who had been diagnosed with low- or intermediate-grade DCIS through the Western Australian breast screening program and were 1.5 to 3 years post-diagnosis. We conducted qualitative semi-structured interviews by telephone. Topics included patients’ experiences of diagnosis, decision making, treatment and recovery. We included a short hypothetical vignette exploring responses to a potential future option of active monitoring for DCIS. Interviews were audio-recorded, transcribed and analysed thematically.ResultsVery few patients had heard of DCIS before diagnosis, and levels of understanding varied. All patients followed recommendations to undergo surgery; most felt anxious to be treated as soon as possible. Although patients were mostly satisfied with their care, some felt insufficiently supported or prepared, or questioned whether they should have had more or less aggressive treatment. Many were concerned their condition might recur or spread later. Few could countenance the idea of monitoring DCIS rather than removing it immediately.ConclusionsPatients newly diagnosed with DCIS are typically unfamiliar with the condition. Confusion and misunderstandings may compound patient distress and make it difficult to consider less intensive therapy. Although de-escalating treatment where possible was welcome to some, many participants felt uncomfortable with the suggestion that some future patients might undergo monitoring instead of immediate surgery. Optimising patient outcomes will require continued attention to effective clinical communication, shared decision making, and ongoing psychosocial support.
Objectives Organised breast screening has greatly increased DCIS incidence. Recognition that some DCIS lesions might remain indolent for many years has led to concern about overtreatment, and international clinical trials are currently assessing the safety of active monitoring for low-risk DCIS. Women may not be aware of what DCIS is and the dilemmas around its optimal management. We aimed to explore women's understanding and views about DCIS and current and potential future management options. Method A community-based sample, recruited by telephone, of 56 women aged 50–74 with no personal history of breast cancer/DCIS participated in six age-stratified focus groups around Sydney, Australia. Sessions incorporated a purpose-designed presentation explaining the nature of DCIS, current standard management, uncertainty around progression, and ongoing clinical trials of monitoring for low-risk DCIS. Throughout the sessions, participants shared their thoughts, feelings and questions in response to the information presented. Discussions were audio-recorded, transcribed and analysed thematically. Results Very few participants had heard of DCIS. Many women showed interest in being monitored if diagnosed with low-risk DCIS; others expressed stronger preference for immediate treatment. Although women mostly supported clinical trials of monitoring (and just over half would join if invited), they also had important concerns and misconceptions about such trials. Some participants struggled to understand the need for randomisation. Many would be reluctant to leave their management to chance, including some who felt strongly against surgery if monitoring were considered viable. Conclusions Public awareness of DCIS is very limited. Most focus group participants gained a reasonable understanding of the issues during the session, and we found substantial interest in monitoring for low-risk DCIS. If clinical trials are to generate much-needed high-quality evidence about new management approaches, effective communication is essential to facilitate informed decisions about screening, treatment and trial participation, and to implement future changes in practice.
BACKGROUND:Ductal carcinoma in situ (DCIS) is an in-situ (pre-cancerous) breast malignancy whereby malignant cells are contained within the basement membrane of the breast ducts. Increasing awareness that some low-risk forms of DCIS might remain indolent for many years has led to concern about overtreatment, with at least 3 clinical trials underway internationally assessing the safety of active monitoring for low-risk DCIS. This study aimed to understand healthcare professionals' (HCPs) views on the management options for patients with DCIS.METHODS:Qualitative study using semi-structured interviews with HCPs involved in the diagnosis and management of DCIS in Australia and New Zealand. Interviews were audio-recorded, transcribed and analysed thematically using Framework Analysis method.RESULTS:Twenty-six HCPs including 10 breast surgeons, 3 breast physicians, 6 radiation oncologists, and 7 breast care nurses participated. There was a strong overall consensus that DCIS requires active treatment. HCPs generally felt uncomfortable recommending active monitoring as a management option for low-risk DCIS as they viewed this as outside current standard care. Overall, HCPs felt that active monitoring was an unproven strategy in need of an evidence base; however, many acknowledged that active monitoring for low-risk DCIS could be appropriate for patients with significant co-morbidities or limited life expectancy. They believed that most patients would opt for surgery wherever possible.CONCLUSIONS:This study highlights the important need for robust randomised controlled trial data about active monitoring for women with low-risk DCIS, to provide HCPs with confidence in their management recommendations and decision-making.
Nicotinamide (vitamin B3) has photoprotective effects and reduces skin cancer incidence in high risk patients. Nicotinamide also improves cognition in animal models. As part of the ONTRAC (Oral Nicotinamide To Reduce Actinic Cancer) phase III placebo-controlled, randomized trial to assess nicotinamide's efficacy in skin cancer prevention, we included clinical neurocognitive function and patient-reported quality of life assessments at baseline and after 12 months of intervention in individuals with previous skin cancer in order to assess any effect of oral nicotinamide (500 mg po twice daily) on cognitive function and quality of life. In our sample of 310 participants who completed neurocognitive function testing at baseline and at 12 months, we were not able to detect any significant effect of oral nicotinamide on cognitive function nor on quality of life. Further studies of nicotinamide's effects on cognition in humans might include individuals with pre-existing mild cognitive impairment, and it may be that higher doses of nicotinamide are required to significantly influence cognitive function compared to doses required to reduce skin cancer.
Purpose This study aimed to explore: (i) patient perceptions of how they are involved in treatment decisions about radiation therapy; (ii) patient knowledge and understanding of treatment; and (iii) what patients value in their interactions with the radiation therapy treatment team. Method Patients were recruited through radiation oncology departments at metropolitan hospital sites located in Sydney, New South Wales, Australia. Semi-structured interviews were conducted with 21 radiation therapy patients with different types of cancer. Data were analysed using a Framework analysis to compare and contrast patient experiences. Results Most patients perceived the decision to undergo radiation therapy as agreeing to radiation oncologists recommendations rather than making a choice, but they trusted their radiation oncologist and were happy to follow their advice. Only a few participants reported their radiation oncologist had explained why radiation therapy was recommended, or discussed the benefits and harms. Some participants did not feel prepared for the intensity and disruption of side effects, and conveyed uncertainty about their diagnosis and the potential risk of recurrence. Most patients, irrespective of their type of cancer, valued the treatment team showing a genuine interest in how the treatment was effecting them, and being made to feel part of the department. Conclusion Greater opportunities are needed to empower patients to ask questions about their uncertainties and concerns. Improvements in these areas will benefit patients and enable them to feel better prepared and know what to expect before and after their treatment.
Objective To test optimal graphic risk communication formats for presenting small probabilities using graphics with a denominator of 1000 to adults with lower education and literacy. Methods A randomized experimental study, which took place in adult basic education classes in Sydney, Australia. The participants were 120 adults with lower education and literacy. An experimental computer-based manipulation compared 1) pictographs in 2 forms, shaded “blocks” and unshaded “dots”; and 2) bar charts across different orientations (horizontal/vertical) and numerator size (small <100, medium 100–499, large 500–999). Accuracy (size of error) and ease of processing (reaction time) were assessed on a gist task (estimating the larger chance of survival) and a verbatim task (estimating the size of difference). Preferences for different graph types were also assessed. Results Accuracy on the gist task was very high across all conditions (>95%) and not tested further. For the verbatim task, optimal graph type depended on the numerator size. For small numerators, pictographs resulted in fewer errors than bar charts (blocks: odds ratio [OR] = 0.047, 95% confidence interval [CI] = 0.023–0.098; dots: OR = 0.049, 95% CI = 0.024–0.099). For medium and large numerators, bar charts were more accurate (e.g., medium dots: OR = 4.29, 95% CI = 2.9–6.35). Pictographs were generally processed faster for small numerators (e.g., blocks: 14.9 seconds v. bars: 16.2 seconds) and bar charts for medium or large numerators (e.g., large blocks: 41.6 seconds v. 26.7 seconds). Vertical formats were processed slightly faster than horizontal graphs with no difference in accuracy. Most participants preferred bar charts (64%); however, there was no relationship with performance. Conclusions For adults with low education and literacy, pictographs are likely to be the best format to use when displaying small numerators (<100/1000) and bar charts for larger numerators (>100/1000).
Objective: Several countries have recently implemented national bowel cancer screening programs. To ensure equal access to screening, information is needed to suit adults ranging in literacy level. Decision aids are effective in providing balanced information and have been applied in screening. However, few have been designed for populations with lower education and literacy. This article describes the development and preliminary evaluation of a bowel cancer screening decision aid for this group.Method: We conducted face-to-face interviews with adults of varying literacy ability, to develop the decision aid (Stage I). We applied principles of plain language, created visual illustrations to support key textual messages, and used colour coding to direct the reader through the booklet. We then explored its acceptability and Comprehension among consumers with higher and lower education (Stage 2). Participants were recruited from a community sample with lower education and a university alumni network.Results: A total of 75 participants were interviewed, 43 with lower educational attainment and 32 with university education. The decision aid was positively reviewed by both education groups. Results highlighted the need to clarify the purpose of the decision aid and the availability of choice in the context of screening, especially to those with lower education.Conclusion: The 2 stage iterative development process identified important factors to consider in the development of decision tools for this target group, and is recommended.Practice implications: Our findings have implications for how to support people with lower education and literacy make informed screening decisions. (C) 2009 Elsevier Ireland Ltd. All rights reserved.
Education and health literacy potentially limit a person's ability to be involved in decisions about their health. Few studies, however, have explored understandings and experiences of involvement in decision making among patients varying in education and health literacy. This paper reports on a qualitative interview study of 73 men and women living in Sydney, Australia, with varying education and functional health literacy levels. Participants were recruited from a community sample with lower educational attainment, plus an educated sample of University of Sydney alumni. The transcripts were analysed using the ‘Framework’ approach, a matrix-based method of thematic analysis. We found that participants with different education conceptualised their involvement in decision making in diverse ways. Participants with higher education appeared to conceive their involvement as sharing the responsibility with the doctor throughout the decision-making process. This entailed verifying the credibility of the information and exploring options beyond those presented in the consultation. They also viewed themselves as helping others in their health decisions and acting as information resources. In contrast, participants with lower education appeared to conceive their involvement in terms of consenting to an option recommended by the doctor, and having responsibility for the ultimate decision, to agree or disagree with the recommendation. They also described how relatives and friends sought information on their behalf and played a key role in their decisions. Both education groups described how aspects of the patient–practitioner relationship (e.g. continuity, negotiation, trust) and the practitioner's interpersonal communication skills influenced their involvement. Health information served a variety of needs for all groups (e.g. supporting psychosocial, practical and decision support needs). These findings have practical implications for how to involve patients with different education and literacy levels in decision making, and highlight the important role of the patient–practitioner relationship in the process of decision making.