Kirsten Howard

The views of patients and carers in treatment decision making for chronic kidney disease: systematic review and thematic synthesis of qualitative studies.

Objective To synthesise the views of patients and carers in decision making regarding treatment for chronic kidney disease, and to determine which factors influence those decisions. Design Systematic review of qualitative studies of decision making and choice for dialysis, transplantation, or palliative care, and thematic synthesis of qualitative studies. Data sources Medline, PsycINFO, CINAHL, Embase, social work abstracts, and digital theses (database inception to week 3 October 2008) to identify literature using qualitative methods (focus groups, interviews, or case studies). Review methods Thematic synthesis involved line by line coding of the findings of the primary studies and development of descriptive and analytical themes. Results 18 studies that reported the experiences of 375 patients and 87 carers were included. 14 studies focused on preferences for dialysis modality, three on transplantation, and one on palliative management. Four major themes were identified as being central to treatment choices: confronting mortality (choosing life or death, being a burden, living in limbo), lack of choice (medical decision, lack of information, constraints on resources), gaining knowledge of options (peer influence, timing of information), and weighing alternatives (maintaining lifestyle, family influences, maintaining the status quo). Conclusions The experiences of other patients greatly influenced the decision making of patients and carers. The problematic timing of information about treatment options and synchronous creation of vascular access seemed to predetermine haemodialysis and inhibit choice of other treatments, including palliative care. A preference to maintain the status quo may explain why patients often remain on their initial therapy.

A systematic review and meta-analysis of utility-based quality of life in chronic kidney disease treatments.

Melanie Wyld and colleagues examined previously published studies to assess pooled utility-based quality of life of the various treatments for chronic kidney disease. They conclude that the highest utility was for kidney transplants, with home-based automated peritoneal dialysis being second.

Effects of study methods and biases on estimates of invasive breast cancer overdetection with mammography screening: a systematic review

Estimates of breast-cancer overdetection, the detection with screening of cancer that would not have presented clinically during the womans lifetime (and therefore would not be diagnosed in the absence of screening), vary widely. We systematically reviewed estimates of overdetection to assess the extent to which these might be biased by study methods. Primary research papers and reviews that estimated overdetection of invasive breast cancer were eligible for inclusion. For each paper we appraised the study design and methods to identify the extent and effect of bias. Two reviews and six primary studies were included. We categorised studies as being based on cumulative-incidence or incidence-rate methods. The least biased overdetection estimates range from -4% to 7.1% for women aged 40-49 years, 1.7% to 54% for women aged 50-59 years, and 7% to 21% for women aged 60-69 years. Studies consistently show that cancer overdetection occurs in screening for breast cancer; however, reported estimates are biased. Sensitivity of mammography for both cancers that will progress and for overdetected cancers may be increasing with time. New studies are urgently needed to quantify the true extent of overdetection in current mammography screening programmes. These studies should be designed to avoid the multiple sources of bias identified in this review.

Model of outcomes of screening mammography: information to support informed choices.

Abstract Objective To provide easy to use estimates of the benefits and harms of biennial screening mammography for women aged 40, 50, 60, and 70 years. Design Markov process model, with data from BreastScreen Australia, the Australian Institute of Health and Welfare, and the Australian Bureau of Statistics. Main outcome measure Age specific outcomes expressed per 1000 women over 10 years. Results For every 1000 women screened over 10 years, 167-251 (depending on age) receive an abnormal result; 56-64 of these women undergo at least one biopsy, 9-26 have an invasive cancer detected by screening, and 3-6 have ductal carcinoma in situ (DCIS) detected by screening. More breast cancers (both invasive and DCIS) are diagnosed among screened than unscreened women. For example, among 1000 women aged 50 who have five biennial screens, 33 breast cancers are diagnosed: 28 invasive cancers (18 detected at screening and 10 interval cancers) and five DCIS (all detected at screening). By comparison, among 1000 women aged 50 who decline screening, 20 cancers are diagnosed over 10 years. There are about 0.5, 2, 3, and 2 fewer deaths from breast cancer over 10 years per 1000 women aged 40, 50, 60, and 70, respectively, who choose to be screened compared with women who decline screening at times determined by relevant policy. Conclusion Benefits and harms of screening mammography are relatively finely balanced. Quantitative estimates such as these can be used to support individual informed choices about screening.

The cost effectiveness of increasing kidney transplantation and home based dialysis

Background:  Renal replacement therapy (RRT) consumes sizable proportions of health budgets internationally, but there is considerable variability in choice of RRT modality among and within countries with major implications for health outcomes and costs. We aimed to quantify these implications for increasing kidney transplantation and improving the rate of home‐based dialysis.

Factors influencing patient choice of dialysis versus conservative care to treat end-stage kidney disease

Background: For every patient with chronic kidney disease who undergoes renal-replacement therapy, there is one patient who undergoes conservative management of their disease. We aimed to determine the most important characteristics of dialysis and the trade-offs patients were willing to make in choosing dialysis instead of conservative care. Methods: We conducted a discrete choice experiment involving adults with stage 3–5 chronic kidney disease from eight renal clinics in Australia. We assessed the influence of treatment characteristics (life expectancy, number of visits to the hospital per week, ability to travel, time spent undergoing dialysis [i.e., time spent attached to a dialysis machine per treatment, measured in hours], time of day at which treatment occurred, availability of subsidized transport and flexibility of the treatment schedule) on patients’ preferences for dialysis versus conservative care. Results: Of 151 patients invited to participate, 105 completed our survey. Patients were more likely to choose dialysis than conservative care if dialysis involved an increased average life expectancy (odds ratio [OR] 1.84, 95% confidence interval [CI] 1.57–2.15), if they were able to dialyse during the day or evening rather than during the day only (OR 8.95, 95% CI 4.46–17.97), and if subsidized transport was available (OR 1.55, 95% CI 1.24–1.95). Patients were less likely to choose dialysis over conservative care if an increase in the number of visits to hospital was required (OR 0.70, 95% CI 0.56–0.88) and if there were more restrictions on their ability to travel (OR = 0.47, 95%CI 0.36–0.61). Patients were willing to forgo 7 months of life expectancy to reduce the number of required visits to hospital and 15 months of life expectancy to increase their ability to travel. Interpretation: Patients approaching end-stage kidney disease are willing to trade considerable life expectancy to reduce the burden and restrictions imposed by dialysis.

Older people's perspectives on participation in physical activity: a systematic review and thematic synthesis of qualitative literature

Background Physical inactivity accounts for 9% of all deaths worldwide and is among the top 10 risk factors for global disease burden. Nearly half of people aged over 60 years are inactive. Efforts to identify which factors influence physical activity behaviour are needed. Objective To identify and synthesise the range of barriers and facilitators to physical activity participation. Methods Systematic review of qualitative studies on the perspectives of physical activity among people aged 60 years and over. MEDLINE, EMBASE, CINAHL, PsychINFO and AMED were searched. Independent raters assessed comprehensiveness of reporting of included studies. Thematic synthesis was used to analyse the data. Results From 132 studies involving 5987 participants, we identified six major themes: social influences (valuing interaction with peers, social awkwardness, encouragement from others, dependence on professional instruction); physical limitations (pain or discomfort, concerns about falling, comorbidities); competing priorities; access difficulties (environmental barriers, affordability); personal benefits of physical activity (strength, balance and flexibility, self-confidence, independence, improved health and mental well-being); and motivation and beliefs (apathy, irrelevance and inefficacy, maintaining habits). Conclusions Some older people still believe that physical activity is unnecessary or even potentially harmful. Others recognise the benefits of physical activity, but report a range of barriers to physical activity participation. Strategies to enhance physical activity participation among older people should include (1) raising awareness of the benefits and minimise the perceived risks of physical activity and (2) improving the environmental and financial access to physical activity opportunities.

Women’s views on overdiagnosis in breast cancer screening: a qualitative study

Objective To elicit women’s responses to information about the nature and extent of overdiagnosis in mammography screening (detecting disease that would not present clinically during the woman’s lifetime) and explore how awareness of overdiagnosis might influence attitudes and intentions about screening. Design Qualitative study using focus groups that included a presentation explaining overdiagnosis, incorporating different published estimates of its rate (1–10%, 30%, 50%) and information on the mortality benefit of screening, with guided group discussions Setting Sydney, Australia Participants Fifty women aged 40–79 years with no personal history of breast cancer and with varying levels of education and participation in screening. Results Prior awareness of breast cancer overdiagnosis was minimal. Women generally reacted with surprise, but most came to understand the issue. Responses to overdiagnosis and the different estimates of its magnitude were diverse. The highest estimate (50%) made some women perceive a need for more careful personal decision making about screening. In contrast, the lower and intermediate estimates (1–10% and 30%) had limited impact on attitudes and intentions, with many women remaining committed to screening. For some women, the information raised concerns, not about whether to screen but whether to treat a screen detected cancer or consider alternative approaches (such as watchful waiting). Information preferences varied: many women considered it important to take overdiagnosis into account and make informed choices about whether to have screening, but many wanted to be encouraged to be screened. Conclusions Women from a range of socioeconomic backgrounds could comprehend the issue of overdiagnosis in mammography screening, and they generally valued information about it. Effects on screening intentions may depend heavily on the rate of overdiagnosis. Overdiagnosis will be new and counterintuitive for many people and may influence screening and treatment decisions in unintended ways, underscoring the need for careful communication.

The interface between residential aged care and the emergency department: a systematic review

BACKGROUND emergency care for older people living in residential aged care facilities (RACF) is a complex area of health policy. The epidemiology of patient transfer between RACF and hospital emergency departments (ED), clinical outcomes and costs associated with transfer and efficacy of programs aiming to reduce transfer are not well known. DESIGN systematic review based on a comprehensive literature search in three electronic databases and published article reference lists. RESULTS the incidence of transfer from RACF to ED is >30 transfers/100 RACF beds/year in most studies. The casemix from RACF is varied and reflects that of the broad elderly population, with some risk difference. At least 40% of transfers are not admitted to hospital. There is insufficient data to fully address our other questions; however, hospitalisations from RACF can be reduced through advanced care planning, use of management guidelines for acute illnesses and improved primary care. CONCLUSIONS residents of RACF have a high annual risk of transfer to ED. The clinical benefit and cost effectiveness of ED care, and alternate programs to reduce ED transfer, cannot be confidently compared from published work. Further research is required to accurately describe these and to determine their comparative worth.

Factors that influence the decision to be an organ donor: a systematic review of the qualitative literature

BACKGROUND Transplantation is the treatment of choice for organ failure, but a worldwide shortage of suitable organs exists. We conducted a systematic review of qualitative studies that explored community attitudes towards living and deceased solid organ donation to inform strategies to improve organ donation rates. METHODS Medline, Embase, PsycINFO and EconLIT were searched. Qualitative studies that explored community attitudes towards living and deceased solid organ donation were included. A thematic synthesis of the results and conclusions reported by primary authors was performed. RESULTS Eighteen studies involving 1019 participants were identified. Eight themes emerged. The decision to be an organ donor was influenced by (i) relational ties; (ii) religious beliefs; (iii) cultural influences; (iv) family influences; (v) body integrity; (vi) previous interactions with the health care system-medical mistrust, validity of brain death and fear of early organ retrieval; (vii) the individuals knowledge about the organ donation process and (viii) major reservations about the process of donation, even in those who support organ donation. CONCLUSIONS This review of qualitative studies highlights that seemingly intractable factors, such as religion and culture, are often tied in with more complex issues such as a distrust of the medical system, misunderstandings about religious stances and ignorance about the donation process. Intervention that could be considered includes culturally appropriate strategies to engage minority groups, especially through religious or cultural leaders, and more comprehensively available information about the donation process and its positive outcomes.