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1.  Valuing patients' experiences of healthcare processes: Towards broader applications of existing methods☆ 
Social Science & Medicine (1982)  2014;106(100):194-203.
Healthcare policy leaders internationally recognise that people's experiences of healthcare delivery are important, and invest significant resources to monitor and improve them. However, the value of particular aspects of experiences of healthcare delivery – relative to each other and to other healthcare outcomes – is unclear.
This paper considers how economic techniques have been and might be used to generate quantitative estimates of the value of particular experiences of healthcare delivery.
A recently published conceptual map of patients' experiences served to guide the scope and focus of the enquiry. The map represented both what health services and staff are like and do and what individual patients can feel like, be and do (while they are using services and subsequently).
We conducted a systematic search for applications of economic techniques to healthcare delivery. We found that these techniques have been quite widely used to estimate the value of features of healthcare systems and processes (e.g. of care delivery by a nurse rather than a doctor, or of a consultation of 10 minutes rather than 15 minutes), but much less to estimate the value of the implications of these features for patients personally.
To inform future research relating to the valuation of experiences of healthcare delivery, we organised a workshop for key stakeholders. Participants undertook and discussed ‘exercises’ that explored the use of different economic techniques to value descriptions of healthcare delivery that linked processes to what patients felt like and were able to be and do. The workshop identified a number of methodological issues that need careful attention, and highlighted some important concerns about the ways in which quantitative estimates of the value of experiences of healthcare delivery might be used. However the workshop confirmed enthusiasm for efforts to attend directly to the implications of healthcare delivery from patients' perspectives, including in terms of their capabilities.
Highlights
•Significant efforts have been made to measure experiences of healthcare delivery.•Efforts to value experiences have focused on healthcare systems and processes.•The value of their implications for patients personally has been neglected.•Economic valuation techniques are promising but face challenges in this domain.
doi:10.1016/j.socscimed.2014.01.013
PMCID: PMC3988932  PMID: 24568844
Quality of healthcare; Patient acceptance of healthcare; Economic evaluation; Process utility; Capabilities approach
3.  How the stigma of low literacy can impair patient-professional spoken interactions and affect health: insights from a qualitative investigation 
Background
Low literacy is a significant problem across the developed world. A considerable body of research has reported associations between low literacy and less appropriate access to healthcare services, lower likelihood of self-managing health conditions well, and poorer health outcomes. There is a need to explore the previously neglected perspectives of people with low literacy to help explain how low literacy can lead to poor health, and to consider how to improve the ability of health services to meet their needs.
Methods
Two stage qualitative study. In-depth individual interviews followed by focus groups to confirm analysis and develop suggestions for service improvements. A purposive sample of 29 adults with English as their first language who had sought help with literacy was recruited from an Adult Learning Centre in the UK.
Results
Over and above the well-documented difficulties that people with low literacy can have with the written information and complex explanations and instructions they encounter as they use health services, the stigma of low literacy had significant negative implications for participants’ spoken interactions with healthcare professionals.
Participants described various difficulties in consultations, some of which had impacted negatively on their broader healthcare experiences and abilities to self-manage health conditions. Some communication difficulties were apparently perpetuated or exacerbated because participants limited their conversational engagement and used a variety of strategies to cover up their low literacy that could send misleading signals to health professionals.
Participants’ biographical narratives revealed that the ways in which they managed their low literacy in healthcare settings, as in other social contexts, stemmed from highly negative experiences with literacy-related stigma, usually from their schooldays onwards. They also suggest that literacy-related stigma can significantly undermine mental wellbeing by prompting self-exclusion from social participation and generating a persistent anxiety about revealing literacy difficulties.
Conclusion
Low-literacy-related stigma can seriously impair people’s spoken interactions with health professionals and their potential to benefit from health services. As policies increasingly emphasise the need for patients’ participation, services need to simplify the literacy requirements of service use and health professionals need to offer non-judgemental (universal) literacy-sensitive support to promote positive healthcare experiences and outcomes.
doi:10.1186/1472-6963-13-319
PMCID: PMC3751726  PMID: 23958036
Low literacy; Patient-provider communication; Patient-provider relationships; Person-centred care; Qualitative
4.  Which experiences of health care delivery matter to service users and why? A critical interpretive synthesis and conceptual map 
Objective
Patients' experiences are often treated as health care quality indicators. Our aim was to identify the range of experiences of health care delivery that matter to patients and to produce a conceptual map to facilitate consideration of why they matter.
Methods
Broad-based review and critical interpretive synthesis of research literature on patients' perspectives of health care delivery. We recorded experiences reported by a diverse range of patients on ‘concept cards’, considered why they were important, and explored various ways of organizing them, including internationally recognized health care quality frameworks. We developed a conceptual map that we refined with feedback from stakeholders.
Results
Patients identify many health care experiences as important. Existing health care quality frameworks do not cover them all. Our conceptual map presents a rich array of experiences, including health care relationships (beyond communication) and their implications for people's valued capabilities (e.g. to feel respected, contribute to their care, experience reciprocity). It is organized to reflect our synthesis argument, which links health care delivery to what people are enabled (or not) to feel, be and do. The map highlights the broad implications of the social dynamics of health care delivery. Experiences are labelled from a patient's perspective, rendering the importance of responsiveness to individuals axiomatic.
Conclusions
Our conceptual map identifies and helps explain the importance of diverse experiences of health care delivery. It challenges and helps policy-makers, service providers and researchers to attend to the range of experiences that matter, and to take seriously the need for responsiveness to individuals.
doi:10.1258/jhsrp.2011.011029
PMCID: PMC3336938  PMID: 21967821
5.  Supporting Patient Autonomy: The Importance of Clinician-patient Relationships 
Personal autonomy is widely valued. Recognition of its vulnerability in health care contexts led to the inclusion of respect for autonomy as a key concern in biomedical ethics. The principle of respect for autonomy is usually associated with allowing or enabling patients to make their own decisions about which health care interventions they will or will not receive. In this paper, we suggest that a strong focus on decision situations is problematic, especially when combined with a tendency to stress the importance of patients’ independence in choosing. It distracts attention from other important aspects of and challenges to autonomy in health care. Relational understandings of autonomy attempt to explain both the positive and negative implications of social relationships for individuals’ autonomy. They suggest that many health care practices can affect autonomy by virtue of their effects not only on patients’ treatment preferences and choices, but also on their self-identities, self-evaluations and capabilities for autonomy. Relational understandings de-emphasise independence and facilitate well-nuanced distinctions between forms of clinical communication that support and that undermine patients’ autonomy. These understandings support recognition of the value of good patient-professional relationships and can enrich the specification of the principle of respect for autonomy.
doi:10.1007/s11606-010-1292-2
PMCID: PMC2881979  PMID: 20213206
personal autonomy; professional-patient relations; clinical ethics; relationship-centred care
6.  Health in the 'hidden population' of people with low literacy. A systematic review of the literature 
BMC Public Health  2010;10:459.
Background
Much of the evidence of an association between low functional or health literacy and poor health comes from studies that include people who have various cognitive difficulties or who do not speak the dominant language of their society. Low functional or health literacy among these people is likely to be evident in spoken conversation. However, many other people can talk readily about health and other issues but have problems using written information. Consequently, their difficulties may be far less evident to healthcare professionals, creating a 'hidden population' whose functional or health literacy problems have different implications because they are less likely to be recognised and addressed.
We aimed to review published research to investigate relationships between low functional or health literacy and health in working age adults who can converse in the dominant language but have difficulty with written language.
Methods
We searched reviews and electronic databases for studies that examined health-related outcomes among the population of interest. We systematically extracted data relating to relationships between low functional or health literacy and both health status and various possible mediators or moderators of the implications of literacy for health. We developed a narrative review.
Results
Twenty-four studies met our inclusion criteria. Lower functional or health literacy in this population was found to be associated with worse health status. This may be mediated by difficulties accessing healthcare, and poorer self-management of health problems. It is currently unclear whether, how or to what extent these difficulties are mediated by poorer knowledge stemming from low functional or health literacy. The variation in functional or health literacy measures and comparisons make it difficult to compare study findings and to establish the implications of different literacy issues for health outcomes.
Conclusions
There is evidence in the literature that low functional or health literacy is associated with poor health in the 'hidden population' of adults whose literacy difficulties may not be evident to health care providers. Further research is needed to help understand the particular disadvantages faced by this population and to establish appropriate responses.
doi:10.1186/1471-2458-10-459
PMCID: PMC2923110  PMID: 20687946
7.  Differing perspectives on patient involvement in patient safety 
Some interventions to support patient involvement in patient safety may be justified—perhaps even ethically required
doi:10.1136/qshc.2006.020362
PMCID: PMC2653159  PMID: 17403749
patients; safety
8.  Reasons for participating in randomised controlled trials: conditional altruism and considerations for self 
Trials  2010;11:31.
Background
Randomised controlled trials of healthcare interventions depend on the participation of volunteers who might not derive any personal health benefit from their participation. The idea that altruistic-type motives are important for trial participation is understandably widespread, but recent studies suggest considerations of personal benefit can influence participation decisions in various ways.
Methods
Non-participant observation of recruitment consultations (n = 25) and in-depth interviews with people invited to participate in the UK REFLUX trial (n = 13).
Results
Willingness to help others and to contribute towards furthering medical knowledge featured strongly among the reasons people gave for being interested in participating in the trial. But decisions to attend recruitment appointments and take part were not based solely on consideration of others. Rather, they were presented as conditional on individuals additionally perceiving some benefit (and no significant disadvantage) for themselves. Potential for personal benefit or disadvantage could be seen in both the interventions being evaluated and trial processes.
Conclusions
The term 'conditional altruism' concisely describes the willingness to help others that may initially incline people to participate in a trial, but that is unlikely to lead to trial participation in practice unless people also recognise that participation will benefit them personally. Recognition of conditional altruism has implications for planning trial recruitment communications to promote informed and voluntary trial participation.
Trial registration
ISRCTN15517081
doi:10.1186/1745-6215-11-31
PMCID: PMC2848220  PMID: 20307273
9.  The information and support needs of patients discharged after a short hospital stay for treatment of low-risk Community Acquired Pneumonia: implications for treatment without admission 
Background
There is increasing evidence that patients with low-risk community acquired pneumonia (CAP) can be effectively treated as outpatients. This study aimed to explore patients' experiences of having pneumonia and seeking health care; their perceptions of the information provided by health professionals; how they self managed at home; their information and support needs; and their beliefs and preferences regarding site of care.
Methods
We conducted qualitative, semi-structured interviews with 15 patients who had a confirmed diagnosis of low-risk CAP and had received fewer than 3 days hospital care. Interviews were audio recorded and transcribed, and data were analysed thematically.
Results
Most patients left hospital with no clear understanding of pneumonia, its treatment or follow-up and most identified additional-other specific information needs when they got home. Some were unable to independently address their activities of daily living in their first days at home.
Main concerns after discharge related to the cause and implications of pneumonia, symptom trajectory and prevention of transmission. Most sought advice from their GP in their first days at home, and indicated they would have appreciated a follow-up phone call or visit to discuss their concerns.
Patients' preferences for site of care varied and appeared to be influenced by beliefs about safety (fear of rapid deterioration at home or acquiring an infection in hospital), family burden, access to support, or confidence in home-care services. Those who received intravenous (IV) medication were more likely to state a preference for hospital care.
Conclusion
Trends to support community-based treatment of CAP should be accompanied by increased attention to the information and support needs of patients who go home to self-manage. Although some information needs can be anticipated and addressed on diagnosis, specific needs often do not become apparent until patients return home, so some access to information and support in the community is likely to be necessary. Our finding that patients who received IV treatment for low-risk CAP were concerned about the relative safety of home-based care highlights the potential importance of the inferences patients make from treatment modalities, and also the need to ensure that patients' expectations and understandings are managed effectively.
doi:10.1186/1471-2466-8-11
PMCID: PMC2518538  PMID: 18664283
10.  Protocol for stage 2 of the GaP study (genetic testing acceptability for Paget's disease of bone): A questionnaire study to investigate whether relatives of people with Paget's disease would accept genetic testing and preventive treatment if they were available 
Background
Paget's disease of bone (PDB) disrupts normal bone architecture and causes pain, deformity, deafness, osteoarthritis, and fractures. Genetic factors play a role in PDB and genetic tests are now conducted for research purposes. It is thus timely to investigate the potential for a clinical programme of genetic testing and preventative treatment for people who have a family history of PDB. This study examines the beliefs of relatives of people with PDB. It focuses particularly on illness and treatment representations as predictors of the acceptability and uptake of potential clinical programmes. Illness representations are examined using Leventhal's Common Sense Self-Regulation Model while cognitions about treatment behaviours (acceptance of testing and treatment uptake) are conceptualised within the Theory of Planned Behaviour.
Methods/Design
A postal questionnaire of non-affected relatives of people with Paget's disease. The sample will include relatives of Paget's patients with a family history of Paget's disease and relatives of Paget's patients without a family history of Paget's disease. The questionnaire will explore whether a range of factors relate to acceptability of a programme of genetic testing and preventive treatment in relatives of Paget's disease sufferers. The questionnaire will include several measures: illness representations (as measured by the Brief Illness Perceptions Questionnaire); treatment representations (as measured by Theory of Planned Behaviour-based question items, informed by a prior interview elicitation study); descriptive and demographic details; and questions exploring family environment and beliefs of other important people.
Data will also be collected from family members who have been diagnosed with Paget's disease to describe the disease presentation and its distribution within a family.
Discussion
The answers to these measures will inform the feasibility of a programme of genetic testing and preventive treatment for individuals who are at a high risk of developing Paget's disease because they carry an appropriate genetic mutation. They will also contribute to theoretical and empirical approaches to predicting diagnostic and treatment behaviours from the combined theoretical models.
doi:10.1186/1472-6963-8-116
PMCID: PMC2442429  PMID: 18510762
11.  Marketing and clinical trials: a case study 
Trials  2007;8:37.
Background
Publicly funded clinical trials require a substantial commitment of time and money. To ensure that sufficient numbers of patients are recruited it is essential that they address important questions in a rigorous manner and are managed well, adopting effective marketing strategies.
Methods
Using methods of analysis drawn from management studies, this paper presents a structured assessment framework or reference model, derived from a case analysis of the MRC's CRASH trial, of 12 factors that may affect the success of the marketing and sales activities associated with clinical trials.
Results
The case study demonstrates that trials need various categories of people to buy in – hence, to be successful, trialists must embrace marketing strategies to some extent.
Conclusion
The performance of future clinical trials could be enhanced if trialists routinely considered these factors.
doi:10.1186/1745-6215-8-37
PMCID: PMC2212650  PMID: 18028537
12.  Financial considerations in the conduct of multi-centre randomised controlled trials: evidence from a qualitative study 
Trials  2006;7:34.
Background
Securing and managing finances for multicentre randomised controlled trials is a highly complex activity which is rarely considered in the research literature. This paper describes the process of financial negotiation and the impact of financial considerations in four UK multicentre trials. These trials had met, or were on schedule to meet, recruitment targets agreed with their public-sector funders. The trials were considered within a larger study examining factors which might be associated with trial recruitment (STEPS).
Methods
In-depth semi-structured telephone interviews were conducted in 2003–04 with 45 individuals with various responsibilities to one of the four trials. Interviewees were recruited through purposive and then snowball sampling. Interview transcripts were analysed with the assistance of the qualitative package Atlas-ti.
Results
The data suggest that the UK system of dividing funds into research, treatment and NHS support costs brought the trial teams into complicated negotiations with multiple funders. The divisions were somewhat malleable and the funding system was used differently in each trial. The fact that all funders had the potential to influence and shape the trials considered here was an important issue as the perspectives of applicants and funders could diverge. The extent and range of industry involvement in non-industry-led trials was striking. Three broad periods of financial work (foundation, maintenance, and resourcing completion) were identified. From development to completion of a trial, the trialists had to be resourceful and flexible, adapting to changing internal and external circumstances. In each period, trialists and collaborators could face changing costs and challenges. Each trial extended the recruitment period; three required funding extensions from MRC or HTA.
Conclusion
This study highlights complex financial aspects of planning and conducting trials, especially where multiple funders are involved. Recognition of the importance of financial stability and of the need for appropriate training in this area should be paralleled by further similar research with a broader range of trials, aimed at understanding and facilitating the conduct of clinical research.
doi:10.1186/1745-6215-7-34
PMCID: PMC1781076  PMID: 17184521
13.  Developing a quality criteria framework for patient decision aids: online international Delphi consensus process 
BMJ : British Medical Journal  2006;333(7565):417.
Objective To develop a set of quality criteria for patient decision support technologies (decision aids).
Design and setting Two stage web based Delphi process using online rating process to enable international collaboration.
Participants Individuals from four stakeholder groups (researchers, practitioners, patients, policy makers) representing 14 countries reviewed evidence summaries and rated the importance of 80 criteria in 12 quality domains ona1to9 scale. Second round participants received feedback from the first round and repeated their assessment of the 80 criteria plus three new ones.
Main outcome measure Aggregate ratings for each criterion calculated using medians weighted to compensate for different numbers in stakeholder groups; criteria rated between 7 and 9 were retained.
Results 212 nominated people were invited to participate. Of those invited, 122 participated in the first round (77 researchers, 21 patients, 10 practitioners, 14 policy makers); 104/122 (85%) participated in the second round. 74 of 83 criteria were retained in the following domains: systematic development process (9/9 criteria); providing information about options (13/13); presenting probabilities (11/13); clarifying and expressing values (3/3); using patient stories (2/5); guiding/coaching (3/5); disclosing conflicts of interest (5/5); providing internet access (6/6); balanced presentation of options (3/3); using plain language (4/6); basing information on up to date evidence (7/7); and establishing effectiveness (8/8).
Conclusions Criteria were given the highest ratings where evidence existed, and these were retained. Gaps in research were highlighted. Developers, users, and purchasers of patient decision aids now have a checklist for appraising quality. An instrument for measuring quality of decision aids is being developed.
doi:10.1136/bmj.38926.629329.AE
PMCID: PMC1553508  PMID: 16908462
14.  Protocol for stage 1 of the GaP study (Genetic testing acceptability for Paget's disease of bone): an interview study about genetic testing and preventive treatment: would relatives of people with Paget's disease want testing and treatment if they were available? 
Background
Paget's disease of bone (PDB) is characterised by focal increases in bone turnover, affecting one or more bones throughout the skeleton. This disrupts normal bone architecture and causes pain, deformity, deafness, osteoarthritis, and fractures.
Genetic factors are recognised to play a role in PDB and it is now possible to carry out genetic tests for research. In view of this, it is timely to investigate the clinical potential for a programme of genetic testing and preventative treatment for people who have a family history of PDB, to prevent or delay the development of PDB.
Evidence from non-genetic conditions, that have effective treatments, demonstrates that patients' beliefs may affect the acceptability and uptake of treatment. Two groups of beliefs (illness and treatment representations) are likely to be influential.
Illness representations describe how people see their illness, as outlined in Leventhal's Self-Regulation Model. Treatment representations describe how people perceive potential treatment for their disease. People offered a programme of genetic testing and treatment will develop their own treatment representations based on what is offered, but the beliefs rather than the objective programme of treatment are likely to determine their willingness to participate. The Theory of Planned Behaviour is a theoretical model that predicts behaviours from people's beliefs about the consequences, social pressures and perceived control over the behaviour, including uptake of treatment.
Methods/design
This study aims to examine the acceptability of genetic testing, followed by preventative treatment, to relatives of people with PDB. We aim to interview people with Paget's disease, and their families, from the UK. Our research questions are:
1. What do individuals with Paget's disease think would influence the involvement of their relatives in a programme of genetic testing and preventative treatment?
2. What do relatives of Paget's disease sufferers think would influence them in accepting an offer of a programme of genetic testing and preventative treatment?
Discussion
Our research will be informed by relevant psychological theory: primarily the Self-Regulation Model and the Theory of Planned Behaviour. The results of these interviews will inform the development of a separate questionnaire-based study to explore these research questions in greater detail.
doi:10.1186/1472-6963-6-71
PMCID: PMC1513223  PMID: 16762063
15.  What influences recruitment to randomised controlled trials? A review of trials funded by two UK funding agencies 
Trials  2006;7:9.
Background
A commonly reported problem with the conduct of multicentre randomised controlled trials (RCTs) is that recruitment is often slower or more difficult than expected, with many trials failing to reach their planned sample size within the timescale and funding originally envisaged. The aim of this study was to explore factors that may have been associated with good and poor recruitment in a cohort of multicentre trials funded by two public bodies: the UK Medical Research Council (MRC) and the Health Technology Assessment (HTA) Programme.
Methods
The cohort of trials was identified from the administrative databases held by the two funding bodies. 114 trials that recruited participants between 1994 and 2002 met the inclusion criteria. The full scientific applications and subsequent trial reports submitted by the trial teams to the funders provided the principal data sources. Associations between trial characteristics and recruitment success were tested using the Chi-squared test, or Fisher's exact test where appropriate.
Results
Less than a third (31%) of the trials achieved their original recruitment target and half (53%) were awarded an extension. The proportion achieving targets did not appear to improve over time. The overall start to recruitment was delayed in 47 (41%) trials and early recruitment problems were identified in 77 (63%) trials. The inter-relationship between trial features and recruitment success was complex. A variety of strategies were employed to try to increase recruitment, but their success could not be assessed.
Conclusion
Recruitment problems are complex and challenging. Many of the trials in the cohort experienced recruitment difficulties. Trials often required extended recruitment periods (sometimes supported by additional funds). While this is of continuing concern, success in addressing the trial question may be more important than recruitment alone.
doi:10.1186/1745-6215-7-9
PMCID: PMC1475627  PMID: 16603070
17.  A centralised public information resource for randomised trials: a scoping study to explore desirability and feasibility 
Background
There are currently several concerns about the ways in which people are recruited to participate in randomised controlled trials, the low acceptance rates among people invited to participate, and the experiences of trial participants. An information resource about on-going clinical trials designed for potential and current participants could help overcome some of these problems.
Methods
We carried out a scoping exercise to explore the desirability and feasibility of establishing such a resource. We sought the views of a range of people including people who were considering taking part in a trial, current trial participants, people who had been asked but refused to participate in a trial, consumer group representatives and researchers who design and conduct trials.
Results
There was broad-based support for the concept of a centralised information resource for members of the public about on-going and recently completed clinical trials. Such an information resource could be based on a database containing standardised information for each trial relating to the purpose of the trial; the interventions being compared; the implications of participation for participants; and features indicative of scientific quality and ethical probity. The usefulness of the database could be enhanced if its search facility could allow people to enter criteria such as a disease and geographic area and be presented with all the trials relevant to them, and if optional display formats could allow them to view information in varying levels of detail. Access via the Internet was considered desirable, with complementary supported access via health information services. The development of such a resource is technically feasible, but the collation of the required information would take a significant investment of resources.
Conclusion
A centralised participant oriented information resource about clinical trials could serve several purposes. A more detailed investigation of its feasibility and exploration of its potential impacts are required.
doi:10.1186/1472-6963-5-39
PMCID: PMC1168894  PMID: 15913460
18.  The requirement for prior consent to participate on survey response rates: a population-based survey in Grampian 
Background
A survey was carried out in the Grampian region of Scotland with a random sample of 10,000 adults registered with a General Practitioner in Grampian. The study complied with new legislation requiring a two-stage approach to identify and recruit participants, and examined the implications of this for response rates, non-response bias and speed of response.
Methods
A two-stage survey was carried out consistent with new confidentiality guidelines. Individuals were contacted by post and asked by the Director of Public Health to consent to receive a postal or electronic questionnaire about communicating their views to the NHS. Those who consented were then sent questionnaires. Response rates at both stages were measured.
Results
25% of people returned signed consent forms and were invited to complete questionnaires. Respondents at the consent stage were more likely to be female (odds ratio (OR) response rate of women compared to men = 1.5, 95% CI 1.4, 1.7), less likely to live in deprived postal areas (OR = 0.59, 95% CI 0.45, 0.78) and more likely to be older (OR for people born in 1930–39 compared to people born in 1970–79 = 2.82, 95% CI 2.36, 3.37). 80% of people who were invited to complete questionnaires returned them. Response rates were higher among older age groups. The overall response rate to the survey was 20%, relative to the original number approached for consent (1951/10000).
Conclusion
The requirement of a separate, prior consent stage may significantly reduce overall survey response rates and necessitate the use of substantially larger initial samples for population surveys. It may also exacerbate non-response bias with respect to demographic variables.
doi:10.1186/1472-6963-3-21
PMCID: PMC293468  PMID: 14622444
20.  Decision aids for patients facing health treatment or screening decisions: systematic review 
BMJ : British Medical Journal  1999;319(7212):731-734.
Objective
To conduct a systematic review of randomised trials of patient decision aids in improving decision making and outcomes.
Design
We included randomised trials of interventions providing structured, detailed, and specific information on treatment or screening options and outcomes to aid decision making. Two reviewers independently screened and extracted data on several evaluation criteria. Results were pooled by using weighted mean differences and relative risks.
Results
17 studies met the inclusion criteria. Compared with the controls, decision aids produced higher knowledge scores (weighted mean difference=19/100, 95% confidence interval 14 to 25); lower decisional conflict scores (weighted mean difference=−0.3/5, −0.4 to −0.1); more active patient participation in decision making (relative risk = 2.27, 95% confidence interval 1.3 to 4); and no differences in anxiety, satisfaction with decisions (weighted mean difference=0.6/100, −3 to 4), or satisfaction with the decision making process (2/100,−3 to 7). Decision aids had a variable effect on decisions. When complex decision aids were compared with simpler versions, they were better at reducing decisional conflict, improved knowledge marginally, but did not affect satisfaction.
Conclusions
Decision aids improve knowledge, reduce decisional conflict, and stimulate patients to be more active in decision making without increasing their anxiety. Decision aids have little effect on satisfaction and a variable effect on decisions. The effects on outcomes of decisions (persistence with choice, quality of life) remain uncertain.
PMCID: PMC28223  PMID: 10487995
23.  Treating Patients as Persons: A Capabilities Approach to Support Delivery of Person-Centered Care 
Health services internationally struggle to ensure health care is “person-centered” (or similar). In part, this is because there are many interpretations of “person-centered care” (and near synonyms), some of which seem unrealistic for some patients or situations and obscure the intrinsic value of patients’ experiences of health care delivery. The general concern behind calls for person-centered care is an ethical one: Patients should be “treated as persons.” We made novel use of insights from the capabilities approach to characterize person-centered care as care that recognizes and cultivates the capabilities associated with the concept of persons. This characterization unifies key features from previous characterisations and can render person-centered care applicable to diverse patients and situations. By tying person-centered care to intrinsically valuable capability outcomes, it incorporates a requirement for responsiveness to individuals and explains why person-centered care is required independently of any contribution it may make to health gain.
doi:10.1080/15265161.2013.802060
PMCID: PMC3746461  PMID: 23862598
person-centered care; patient-centered care; professional-patient relations; capabilities approach; ethics; quality of care

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